key: cord- - hjhujv authors: williamson, sue; colley, linda; hanna‐osborne, sally title: will working from home become the ‘new normal’ in the public sector? date: - - journal: nan doi: . / - . sha: doc_id: cord_uid: hjhujv the covid‐ pandemic compelled large sections of the workforce out of their workplaces and into their homes to work. many commentators suggest this has forever changed how and where we work. this article analyses how australia's biggest employers – state and federal governments – approached the transitions to working from home, and back into regular workplaces. it considers the timing of policy responses to the pandemic as one indicator of resistance to, or acceptance of, widespread working from home. the article also demonstrates previous resistance to working from home for public servants, and questions widespread conjecture that it will become the ‘new normal’. many news, practitioner, and academic commentators speculated whether large-scale working from home would become the 'new normal' post-pandemic (e.g. see hilton, ; towers-clark, ) . this article assesses the prediction of a 'new normal' in relation to australian public services, which employ . million staff (burton, ) . the article draws on previous research that identified resistance to working from home in the public sector, and examines the responses of various jurisdictions to the national working from home directive. it questions the likelihood that widespread working from home will remain a reality for public servants into the future, and considers what this might mean for future working arrangements. working from home can be beneficial for both employees and organisations due to the integration of work and caring responsibilities (hyman, scholarios, & baldry, ) , increased productivity (collins, ) , and increased employee engagement (lee & kim, ) . although some flexible working practices such as part-time work have been widely adopted over the last several decades (cassidy & parsons, ) , employers have been more reluctant to facilitate working from home due to uncertain benefits, and pre-pandemic uptake was limited (abs, ). studies differ on the extent of increases to organisational performance and productivity (bailey & kurland, ; collins, ; martin & mcdonnell, ) , and some question whether the gains outweigh losses due to difficulties in supervision and communication, employee isolation, and decreased commitment (callier, ; choi, ; de vries, tummers, & bekkers, ) . australian public services were early pioneers of working from home, evidenced by the creation of the australian public service interim home-based work award (dixon, ) . despite this initial commitment, acceptance and uptake has been patchy. in , only % of australian public service (aps) employees teleworked to some degree (apsc, undated). by , over a third of executive level (i.e. more senior employees) and very senior managers worked from home to some extent (apsc, ). fewer than % of lower level employees worked from home, highlighting that this was not standard practice for these employees (apsc, ). throughout the pandemic, % of aps employees were reportedly working from home (dingwall, ) . research has found continued widespread resistance of managers to enable lower level employees to work from home (williamson, colley, foley, & cooper, ) . interviews with almost managers across four state jurisdictions found that uptake of working from home was constrained by unsupportive work cultures and attitudes, particularly managerial concerns about trust, productivity, and underperformance. managers also cited inadequate technology and concerns about compliance with industrial instruments and work, health, and safety policies as reasons for not facilitating these arrangements. before the pandemic, working from home in the public sector was not a standard working arrangement for most employees. the next section analyses how government employers responded to the sudden need for employees to work from home, finding evidence of continued resistance. it also considers the messaging emerging during the development of transitional arrangements as employees began to return to their usual workplace, in order to assess whether working from home will become 'the new normal'. on march , the world health organisation declared coronavirus to be a pandemic. public service jurisdictions began issuing advice to their agencies on how to enable employees to work from home. the timing across jurisdictions varied, with two jurisdictions moving quickly by mid-march (nsw government, ; queensland government, ) but others not having policies until the end of march (act government , apsc, a; government of wa, ; nt government, ; tasmanian government, ; victorian government, ) or early april (government of south australia) . several jurisdictions adopted a soft human resource management approach that both supported employee health and wellbeing and recognised that this was not the usual working from home -rather, employees had been forced home and were trying to work amidst other constraints such as home schooling. some jurisdictions ensured staff had enough leave, whether pandemic leave or uncapped carer's leave (government of south australia, a; queensland government, ; victorian government, ) , whereas others such as the australian capital territory government ( ) stipulated that employees who could not undertake their whole job from home would not be required to take leave. several jurisdictions showed particular attention to health and safety, with victoria encouraging managers to manage fatigue levels (eccles, ; victorian government, ) , and the queensland government ( ) providing extensive online resources for managers and employees. the victorian government ( ) even provided some funding for home office consumables and utilities. other jurisdictions were less generous. the nsw suggested that if employees who were working from home were caring for a family member and could not be fully productive, they should take leave. the northern territory government ( ) was quite prescriptive, initially implementing working from home on a 'trial basis'. the western australian government adopted a harder line and stipulated that employees with young children could not work from home, but could work 'less than full-time work hours' (government of western australia, ) . this range of responses seemed less related to rates of covid- infection across jurisdictions at the time, but rather indicated varying levels of acceptance or resistance to the practice of working from home. the timing and messaging of the transition out of the pandemic also indicated resistance. the australian government ( ) was first off the mark; however, advice appeared to be contradictory. on may , it released a 'roadmap' encouraging employees to continue to work from home, but on the same day also released advice to its own agency heads to plan to transition employees back into their usual workplaces (apsc, b; australian government, ). although decisions were to be made at agency level and subject to health and safety considerations, the clear intent was that aps employees should begin to return to their regular place of work. at the end of may, weeks later, most other jurisdictions had not begun this return transition. only south australia had a clear policy on transitioning back, although adopted a different approach. this government focused on a staged return according to a 'hierarchy of need', based on factors including whether the employee was essential to service delivery, whether they wanted to return to the workplace, or were a vulnerable person. it also recognised that some employees may wish to continue working from home 'for the foreseeable future' (government of south australia, b) . other jurisdictions did not begin the transition until june . so is working from home likely to become the 'new normal' in the public sector? prior to the pandemic, there was evidence of considerable resistance to working from home from some managers who had concerns about technology, compliance with employment regulation, and employees' productivity and performance (williamson et al., ) . many of the technical barriers were swept away by the pandemic, leaving resistance based on institutional cultures and managerial attitudes. researchers have stated that to mitigate resistance to change, organisations should plan for the change, create a climate of trust, and encourage employee participation (bailey & raelin, ) . the rapidity of the pandemic meant that few of these factors to counter resistance were in place, magnifying the crisis for both managers and employees. once the immediate crisis has passed, factors contributing to resistance may re-emerge, based on past behaviour and norms. the public sector is path dependent, and researchers have found that flexible working arrangements have been gained incrementally. they suggest a 'radical' approach is needed to enshrine flexible working arrangements (lewis & campbell, ) . because the pandemic is endogenous to the public sector, it may not be the catalyst that will deliver long-term changes in working arrangements. the continued take-up and normalisation of working from home will vary across and within jurisdictions, due to the institutional arrangements for public sector human resource management. new public management reforms have changed the role of central personnel institutions, as public service boards seeking standardisation were replaced with more facilitative institutions, such as public service commissions, that provide a central policy framework for agencies to operationalise (colley, ; hood, ; o'donnell, o'brien, & junor, ) . this decentralisation and agency discretion leads to policy differences between agencies, as well as considerable difference on implementation within each agency, although research identified a common theme or culture of resistance regardless of the type of policy. the recent history of managerial discretion and the resulting resistance and patchy take-up rates for flexible working arrangements (williamson et al., ; williamson, colley, & foley, ) , together with the reluctance exhibited during the pandemic, makes continued reluctance likely. a great deal of excitement is being generated that the pandemic is fundamentally changing how we live and work, with predictions that working from home will become 'the new normal'. based on past practice, however, we question the extent to which large numbers of public sector employees will continue to work from home. for the aps, which was slower to implement working from home during the pandemic and the first to plan the return transition, resistance may continue. other jurisdictions may be more likely to continue to enable employees to work from home post-pandemic. although many public servants have client-facing roles, the pandemic provided opportunities to be creative about other forms of service delivery, from online teaching to call centre work undertaken from home. our future research will review the working from home experience across jurisdictions during the pandemic, at the end of (hopefully post-pandemic) and in years to identify the extent to which practice has changed. o r c i d sue williamson https://orcid.org/ - - - dr. sue williamson is a senior lecturer in human resource management at unsw, canberra. she specialises in two main areas of research -gender equality in the workplace, and public sector human resources and industrial relations. she is currently examining how public sector organisations can create and sustain gender equitable, and inclusive cultures. sue was chief investigator, leading a consortium of researchers to examine how middle managers are progressing gender equality, funded by the australia and new zealand school of government. sue has published widely on this topic and also shares her findings with industry partners and the community. research group leader at cquniversity, based on brisbane campus. she brings extensive practical experience from her career in hrm and industrial relations in the queensland public service. her research builds on this career, with her phd examining queensland public service employment from to , and her university of queensland postdoctoral fellowship examining workforce planning in the contemporary queensland public service. she has published on topics such as merit, tenure, job security, redundancy, gender and age at work, public management reform, privatisation, and the effects of austerity measure on public employment. dr. hanna-osborne was recently awarded her phd from the university of sydney for her thesis which investigated the employment and career experiences of women paramedics. she has presented her findings at leading academic conferences around the world. she has also researched gender inequality in the music industry, and the report skipping a beat: assessing the state of gender equality in the australian music industry was published in . how to cite this article: williamson s, colley l, hanna-osborne s. will working from home become the 'new normal' in the public sector? aust j publ admin. ; - . https://doi.org/ . / - . roadmap to a covidsafe australia characteristics of employment emergency response -actps advice relating to staff entitlements and access to leave during the covid- outbreak workplace principles for minimising the spread of covid- (coronavirus) circular / : preparing for a covid-safe transition for aps workplaces a review of telework research: findings, new directions, and lessons for the study of modern work organizations don't resist change, people do: modelling individual reactions to organizational change through loss and terror management february . the coronavirus outbreak has become the world's largest work-from-home experiment up to . million public servants waiting to work from home the impact of teleworking on work motivation in a u.s. federal government agency the rising share of part-time employment managing flexible work arrangements in government: testing the effects of institutional and managerial support reshaping the public service bargain in queensland - : responding to austerity? the economic and labour relations review the (not so simple) case for teleworking: a study at lloyd's of london the benefits of teleworking in the public sector: reality or rhetoric? review of public personnel administration australian public service's response to coronavirus revealed in new figures. the canberra times telecommuting: issues in public and private sector employment -south-australian-public-sector-mobilisation-policy.pdf government of south australia paradoxes of public-sector managerialism, old public management and public service bargains will remote working become the new normal? human resources director getting on or getting by? employee flexibility and coping strategies for home and work a quasi-experimental examination of telework eligibility and participation in the u.s. federal government uk work/family balance policies and gender equality is telework effective for organizations? a meta-analysis of empirical research on perceptions of telework and organizational outcomes media release: advice on coronavirus media release: coronavirus measures endorsed by national cabinet media release: update on coronavirus measures employment arrangements during covid- advice - march , working from home new public management and employment relations in the public services of australia and new zealand employment arrangements in the event of a health pandemic (directive / ) covid- update, letter to all tasmanian state servants from jenny gale, head of the state service and secretary, department of premier and cabinet will remote work become the new normal? forbes coronavirus (covid- ) guidance note -victorian public service the role of middle managers in progressing gender equity in the public sector human resource devolution, decoupling and incoherence: how line managers manage gender equality reforms key: cord- -sjsju qp authors: ewing, lee-ann; vu, huy quan title: navigating ‘home schooling’ during covid- : australian public response on twitter date: - - journal: nan doi: . / x sha: doc_id: cord_uid: sjsju qp covid- has wreaked havoc worldwide. schools have escaped neither the pandemic nor its consequences. indeed, by april , schools had been suspended in countries, affecting % of learners globally. while the australian government has implemented variously effective health and economic policies in response to covid- , their inability to agree with states on education policy during the pandemic caused considerable confusion and anxiety. accordingly, this study analyses weeks of tweets during april, leading up to the beginning of term , during the height of government policy incongruity. findings confirm a wide and rapidly changing range of public responses on twitter. nine themes were identified in the quantitative analysis, and six of these (positive, negative, humorous, appreciation for teachers, comments aimed at government/politicians and definitions) are expanded upon qualitatively. over the course of weeks, the public began to lose its sense of humour and negative tweets almost doubled. on december , the first reporting of unusual health activity came out of wuhan, in hubei province, china. eight days later, the activity was identified as a 'novel coronavirus' (virus strain sars-cov- ), named -ncov or covid- by the world health organization (who, cnn editorial research, ) . over the next several weeks, cases began to grow in asia, particularly china. as the world watched government actions and news updates out of china, thailand, japan the data were collected from twitter, one of the most popular social networking platforms worldwide. twitter allows users to post and interact with messages know as tweets. users often access school will return in the act on tuesday ( / ), and will initially be entirely delivered via remote learning. staggered return to face-to-face classroom teaching through phases. phase sees all students encouraged to utilise remote learning from home wherever possible, though 'no student will be turned away' from supervised school learning. phase begins may , requires students to return to the classroom for day/week. phase = days/week. phase = days/week with social distancing. phase would have school back running as normal. schools open for any student to receive face-to-face teaching. wa government claim term two plan is 'cautious, careful and considered to protect teachers, parents and children'. choice to send children to school lies with families, and distance education packages and resources or online remote learning will be provided to any student who is kept home. year and students 'strongly encouraged' to attend school for face-to-face classes. some catholic, independent and anglican schools have gone against this advice, adopting remote learning for students up to year . all students in the nt are expected to physically attend school, unless they are unwell. parents can choose not to send their children to school, but are then 'responsible for the student's learning, safety and wellbeing at home or elsewhere'. the twitter platform through its web interface, or its mobile-device applications software. twitter is selected for this study as it is a popular platform for sharing ideas and catching up with news and trends around the world (overbey et al., ) . we developed and deployed data extraction software to automatically extract tweet data from twitter. the program was developed based on twitter application programming interface (api), which allows users to search for tweets based on specific keywords and geographical location. full documentation about twitter api can be retrieved from https://developer.twitter.com/en/docs. this study focused on analysing public opinions about home schooling in australia; therefore, we provided a search query (homeschooling or 'home schooling') to the twitter search function of the api. in addition, an extra set of parameters, (- . , - . , . , . ) for minimum latitude, maximum latitude, minimum longitude and maximum longitude is provided to specify a bounding box to focus the search within the geographical area of australia. there is a quota limit for access to twitter api, which only allows for a proportion of all available tweets in the latest days to be retrieved. although not all available tweets are included, the collected tweets are randomly sampled from all available ones, and thus reliable to capture common patterns and trends among public. we ran the data collection program three times, for the weeks commencing , and april to collect the tweets posted during this -week period. in total, , tweets relevant to homeschooling posted in australia were collected. the number of tweets for weeks , and are , , and , respectively. we adopt both quantitative (descriptive) and qualitative approaches to analysing the contents of the collected tweets to identify their major themes and concerns of the australian public in relation to home schooling during the pandemic. the first author read all , + tweets twice before developing the broad codes detailed in column of table . after the second author agreed with the codes, a coding protocol was followed whereby the first author ('coder ') and an independent and qualified non-author ('coder ') independently coded all tweets in the three csv files by assigning one number/code to each tweet. inter-coder reliability was computed using holsti's ( ) method -based on the percentage of agreement between the two coders. inter-coder reliability scores were all above % ( %, % and % for weeks - , respectively), thereby confirming that both coders were interpreting the material in a consistent manner. discrepancies were discussed and codes were revised, yielding a final coding result. what table suggests is that over the course of weeks, leading up to and including the commencement of term , the 'novelty factor' wore off surprisingly quickly ( % reduction in positive tweets) and the public began to lose its sense of humour (humorous tweets dropped % off a high base and negative tweets almost doubled to %). appreciation for teachers more than doubledoff a low base (to %), while tweets aimed at the government/politicians halved (to %). surprisingly, the most dominant theme in week is frustration at calling remote learning 'homeschooling', which has skyrocketed (from % to %), further confirming that the novelty has indeed worn off and that the public is becoming increasingly frustrated. z-tests were performed and verified that except for general and/or neutral tweets and tips/advice/sharing of resources, the proportional differences between the two periods of other items are statistically significant at p-value ⩽ . . the second phase of data analysis was interpretive in nature. the first author went through the coded csv files again and shaded the more illuminating, illustrative and unique tweets in six of the nine themes. these were then extracted and placed into a ms word document for further analysis. positive. many people commented on the positive effects of being in isolation and homeschooling. they appreciated the perception of 'slowing down', being less busy with fewer distractions: many parents commented on how homeschooling has presented them with the time and opportunity to get to know their children better and appreciate them as individuals -'find the silver lining. with difficulty there is blessing. i can be with my girls - . precious', and another, 'i'm reminded the days are long the years are short'. the exposure to a new learning approach has gained positive reactions. many respondents commented on the positive results of homeschooling. 'i know one kid who has a problematical classroom record but is blossoming under home schooling to the extent that his parents are exploring options after the #lockdown ends. and they're not home-schooling nutters'. many parents and children are engaged in their learning, having fun and even thriving. 'home schooling positive: teenage son whose reports invariably add "too easily distracted" is getting his work done'. this could be as a result of the homeschooling model being an antithesis of all the negative factors of face-to-face schooling. 'winning! plus, no bags/lunches to pack or school drop off/pick up! #homeschooling suits me!' many parents used the twitter platform to reach out to others. there is a need to connect as adults experiencing a new challenge and to share experiences and humour. 'parents are homeschooling -especially i suspect in lower grades. we don't need to get bent out of shape about it it's just a necessity right now'. '. . . getting a bit nostalgic about our office door . . . offices-remember those?' 'send coffee please . . .'. twitter allowed parents to share resources. a collective empathy among parents is evident. the sharing of tips, links, websites and so on is a common thread through the twitter feeds. 'some great tips if you're a parent home schooling your kids' humour. twitter is also a platform for sharing humour about homeschooling. parents embraced humour as a coping mechanism. '. . . not sure i'm managing the work/life/homeschooling balance quite right. there's going to be a very cranky "teacher" in our house tomorrow morning!!'; 'it turns out i really suck at grade math's. #homeschooling'. it acts as an adult forum for venting frustration and a feeling of being overwhelmed. ' hour into day of home schooling and i've already decided it's time for a fire drill. #homeschooling #getthemout'. humour on twitter is allowing parents to express themselves safely without fear of recrimination. they have an audience who are experiencing similar challenges. it is also a platform for people in isolation as it is instant communication without having to leave home. many twitter comments mentioned alcohol consumption. 'well that went well. bwahahaha . . . sob . . . i need a drink. #homeschooling #workfromhome #completelybloodyincompatible'. negatives. many negative aspects of homeschooling were highlighted in the tweets. the platform was used by many to express their anxiety and frustration. '. . . i talk to frustrated parents every day. i'm bloody frustrated and exhausted and angry too'. there is a strong suggestion of not coping and relationship deterioration. 'i honestly could not do homeschooling for a term. my son would suffer academically and our relationship would suffer'. the situation has also highlighted the divide between public and private schools. 'if kids are behind in literacy & numeracy it's because this govt fails to invest enough in our public schools'. '. . . covid coronavirus rich people problems'. 'why is every home schooling case study on abc in a relatively welloff household? what about the poor kids @abcnews?' twitter users express a frustration with technology/lack thereof. 'no internet connection this morning . . . home schooling is canceled for today'. 'so, we had electricity issues on thursday in my area so we couldn't log in and partake in the online learning . . . i'm so deflated'. the platform was also used to express concerns regarding gender inequality. 'mostly it falls to the women in the household making it more difficult for keeping their job let alone career progression'. 'the #genderpaygap will have a shocking impact on our critical #covid workforce 'who will do the lion's share of home schooling and child caring during #iso when both parents are normally at work whose job will get priority? his/he earns more'. 'apparently mums struggling with juggling looking after a house working being a mum / and home schooling during isolation means they hate their kids'. twitter users also picked up on how 'homeschooling' has exposed the vulnerable in society. 'some children are exposed to crap parental behavior including actual abuse some don't have multiple bedrooms/ laptops/ backyards to make the home schooling thing a pleasant and productive experience. i feel for kids the most'. 'dear parents of autistic/adhd kids who are homeschooling during lockdown. how are you coping? how are your kids coping with . . .?' 'if kids had online home schooling there would be no bullying in schools which is an epidemic'. mental health challenges are also exposed: 'i'm not helping with my daughter's home schooling. it's very hard. depression doesn't help in the mix either'. twitter also points to challenges in australian society as a whole, 'people have lost homes in the bushfires. people have lost jobs due to the lockdown. parents struggle with homeschooling . . .'. the negative influence of technology is argued on twitter. 'it's like a child being raised by robots'. 'this home schooling thing is a great way to get kids addicted to screens isn't it'. '. . . it's not the work it's the endless portals passwords and it administrative confusion'. for parents, the reliance on technology tests their parenting values and approach: home schooling is a #bigtech wet dream. we have a year old now with a google account something we would not have waved through until he was but to deny means he has no interaction with his education and school mates. twitter is also a platform for raising concerns about the demands made on parents' time and balancing the demands of their children's learning and their own work commitments. 'deliberating what the appropriate time to start making work calls in this covid- time when the person i'm calling is isolating and home schooling?' 'i'm getting family help with my kids as home schooling with this job is a struggle'. 'i'm not saying u can't have parents work but children's needs have come st'. appreciation for teachers. many twitter users expressed their appreciation and respect for teachers, particularly by week , suggesting that the role of teaching has till now been undervalued. 'i am so sorry, i and many other parents have seen st hand how tough the job is for teachers'. 'when covid- restrictions are lifted i demand all good teachers get paid double . . .'. 'it's fair to say that since this crisis began most parents have discovered a newfound respect for teachers'. having to adopt the role on a 'temporary' basis has revealed the demands on teachers. many did not realize the effort involved in teaching. '. . . teaching is a demanding occupation homeschooling might be revealing to many parents just how difficult it is'. '. . . homeschooling has taught parents anything it's that it takes a specific kind of person to have the patience and dedication to teach'. some twitter users refer to teachers as 'heroes'. 'teachers are unsung heroes until everyone has tried home-schooling. we owe them thanks along with delivery workers'. for many, teachers play important part in their children's lives. twitter allows users to express their emotions about the relationship, '. . . i got a bit teary. they are so supportive and realistic and i love them and now i'm sad all over again that my boys are out of their care for this term'. government and politicians. while twitter users express respect and affection for teachers, the vitriol directed at the country's leaders is largely negative. many twitter comments concerned the government's response and communication regarding education and the pandemic. it is a platform for venting frustration and anger towards politicians, at times through sarcasm. the primary concern is the miscommunication and confusion around the messages presented to parents by the governments. 'welcome to covid- oz style . . . so we have the federal government telling us that we should be sending kids to school yet state govts are saying only send them if absolutely necessary . . . would you please clarify'. 'what a fuckstick. it's like getting a lecture from a drunk uncle. incoherent ramblings and repeating himself. speech writers from the ipa?' the issue is also around poor leadership. '@dan tehanwannon showed some pretty poor leadership with his outburst. expect more from elected officials. political squabbling is pathetic at this time'. 'pm urges teachers not to force parents into choice between home schooling and food on the table' suggests fear of the unknown. parents are concerned about the health risk to their children of returning to school and hold politicians responsible, 'if you force schools to open i will unenroll my child from school and register them for home schooling . . .'. definitions. the definition of homeschooling/remote learning elicited many emotional responses. many tweets correctly noted that it is not homeschooling, rather learning from home or remote learning. 'every time people refer to it as home schooling i want to scream. it's not bloody homeschooling you morons' and 'parents are merely fulfilling a temporary, supervisory role, and are not expected to teach'. comments acknowledged that teachers are the professionals who are still teaching. 'hey again for the people in the back it's not #homeschooling it's learning from home using stuff professional teachers have prepared'. another user summarized the role: australian parents are supporting students as they learn at home. teachers have designed the curriculum, planned lessons, decided on assessment and will mark student work. parents are definitely working hard to support learning, but they are not homeschooling their children. the language around learning is confusing and varied: remote learning, distance learning, supporting students learning at home, online learning. 'it's not outrage at the wrong term it's frustration and misrepresentation. distance education is the right term. home schooling it is not'. arguably, the frustration over the definition of the learning is highlighting how unsure parents feel in this new role: i came across some online twitter debate on whether it was technically home schooling when in reality you aren't setting the work. after hours of helping my year old navigate math's questions i will call it whatever the fuck i like . . . exhausting mostly lol. another user stated, 'we know it's not home schooling. if it's easier for parents to call it that and it makes them feel better then so be it'. finally, a humorous take on the definition: you can call it home schooling if it comes from the homeschoole region of france otherwise it is just sparkling domestic education. covid- is the biggest health, social and economic emergency the world has faced since the second world war -and its consequences will endure for years to come (khan, ) . in response, australia's national cabinet process has worked effectively by building confidence and trust between jurisdictions and cutting through narrow partisan politics in the name of 'public interest'. different levels of government have had to come together to negotiate, largely as equals, resulting in better policy than if one level had simply dictated terms (smith, ) . for example, the actions of the nsw and victorian governments on the second weekend in march, where they pushed a stage lockdown ahead of a reluctant commonwealth have been shown to be correct. likewise, the actions of queensland in imposing quarantines on domestic travellers were followed by the nt, wa, sa and tasmania and have effectively stopped the spread of the virus between states. interestingly, the only major split in the initial covid- response has been over schools, an area that is funded dually and where the commonwealth has tried to use funding to exert control over the states' responsibilities. this school split has frustrated and confused an already anxious public, who, quite justifiably turned to social media to voice their frustrations. a single recommendation emanating from this study is that the australian federal and state governments should agree on a school attendance/remote learning policy before the next pandemic or other crisis strikes. in other words, have a national/state policy 'on the shelf'. it is also highly likely that hybrid approach to primary and secondary education will emerge post-covid. in other words, parts of the curricula could transition online over time. this, coupled with the very high likelihood of future pandemics and crises, will no doubt need to be reflected in teacher recruitment and training going forward and in school policies and practices pertaining to education during crises. it will be interesting to see how many of the aforementioned issues play out in real time in the united states this fall. schools there are about to return from their long summer break and tensions are escalating between education secretary betsy devos and numerous state governors. early indications are that the us model for the fall term and / academic year is likely to be partisan, heterogenous, probably hybrid and possibly quite politically divisive. like all similar studies, this one is not without limitations. the analysis was carried out on a relatively small data set ( , tweets) and for a short time period ( weeks). the data were also collected from a single social media platform (twitter). nevertheless, the findings shed light on the emerging issues and challenges in the context of remote learning which are confronting policy makers, politicians and principals alike. in addition to the textual content, other meta-data, such as profile of twitter user (e.g. location, description, number of followers, number of following), hashtag, mentioned users, number of likes, number of re-tweets and links to other websites are also available. however, as a preliminary study, our analysis was mainly focusing on the textual content of the tweets to study the topics being discussed by the australian public at a point in time. due to the unrestricted boundary of social media, the analysis can be extended to other countries, such as new zealand and beyond, for comprehensive insights. while this study focused on twitter, analyses of facebook and instagram would be most worthwhile too. future studies may also consider employing quantitative approaches with text mining, sentiment analysis and topic modelling (silge and robinson, ) to effectively process and analyse large-scale social media data sets. future research might employ a choice modelling technique, such as best-worst scaling, to determine what learning approaches parents deem most and least appealing, for it is also possible that traditional (i.e. voluntary, non-forced) home schooling may increase in popularity following some parents/pupils' positive experiences during the pandemic. the author(s) received no financial support for the research, authorship and/or publication of this article. lee-ann ewing https://orcid.org/ - - - australian dies from coronavirus covid- in perth after infection on diamond princess ship australia closes borders to stop coronavirus. news. available at principals reject cash lure to resume classes, despite financial plan. the age content analysis for the social sciences and humanities we have a responsibility to confront covid- . the guardian linking twitter sentiment and event data to monitor public opinion of geopolitical developments and trends sbp-brims opinion: this is our chance! we have, right now, a once-in-a-generation opportunity. the mandarin ) who warns coronavirus, now dubbed covid- , is 'public enemy number ' and potentially more powerful than terrorism. abc news dan tehan admits he 'overstepped the mark' in attack on daniel andrews over coronavirus schools closure. the age key: cord- -baxst an authors: dimke, c.; lee, m. c.; bayham, j. title: working from a distance: who can afford to stay home during covid- ? evidence from mobile device data date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: baxst an as local and state governments reopen parts of the economy while balancing public health through social distancing, it is important to understand the heterogeneity in how the population has reacted to the covid- pandemic. we match census block group level safegraph mobile device data with demographic data from the american community survey to identify trends amongst different subgroups of the population. we find evidence that people's ability to work from home is a determinant of time spent at home since the beginning of the pandemic. on april th, census block groups classified as being better able to work from home spent more hours at home compared to those who were not. we see supporting trends amongst block groups with differences in income and educational attainment. the extent to which people reduce potentially infectious contacts is a function of economic conditions because people employed in essential positions may not have the flexibility to work from home. baker et al. ( ) estimates that . % of the us population works in occupations where they are exposed to covid- at least once per month. these jobs tend to pay lower wages and are disproportionately held by minority populations, or people with lower educational attainment (mongey & weinberg, ) . additionally, households at lower percentiles of earnings experience larger drops in income during recessions (heathcote et al., ) . the dependence on this income makes it difficult for individuals to choose to stay home. occupation is a key determinant of who can stay home during the pandemic response. dingel & neiman ( ) identify which occupations have high and low ability to work from home. workers in high-personal-proximity occupations with low-work-from home ability are less likely to have college degrees and less likely to be white. they are more likely to have below median income and more likely to work in small firms (mongey & weinberg, ) . these small firms are less likely to remain open after crises (mongey & weinberg, ) . while useful, this static analysis does not indicate who has and who has not been distancing during this pandemic. here we propose a simple method for parsing anonymized mobile device location data by sociodemographic characteristics using publicly available census data. our method yields up-to-date estimates of time spent at home across demographic groups, a classification unavailable using mobile device data alone. our analysis extends the work of jay et al. ( ) , who document heterogeneous mobility by income quintiles, by evaluating education levels and occupations with the ability to work from home. . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) the copyright holder for this preprint this version posted july , . . https://doi.org/ . / . . . doi: medrxiv preprint our objective is to estimate social distancing by socioeconomic and demographic characteristics. we merge census block group (cbg) level mobile de- vice data from safegraph along with demographic data from the us census bureau's american community survey (acs) (u.s. census bureau, ). safe-graph (www.safegraph.com) aggregates anonymized mobile device data that can be used to understand movement patterns during the covid- epidemic. to enhance privacy, safegraph excludes census block group information if fewer than five devices are observed on any day. the cbg level data is granular, but also preserves device anonymity. there are over , census block groups in the us with an average population of just over (u.s. census bureau, ). we classify each cbg based on the composition of the population along the following characteristics: education, household income, and occupations with ability to work from home. specifically, we identify cbgs with a majority of the population in one category. the education classification is based on two levels of education, those who have a bachelor's degree or higher and those who do not. the household income classification is based on three income brackets: $ - , , $ , - , , and greater than $ , . we assigned groups to having high ability to work from home or low ability based on the classification in (dingel & neiman, ) . specifically, we multiply the fraction of workers in each occupation that are likely able to work from home (dingel & neiman, ) by the number of people employed in each occupation, and sum this product across all individuals in the cbg. we classify each census block group as dominated by a category of interest if the fraction of the population in one of those categories exceeds %. not all census block groups have a dominant population, so these estimates are based on a subset of the sample. we run the analysis for thresholds between % and %. while the ordinal rank of time spent at home remains constant, the sample size falls as the thresholds are increased resulting in larger standard error . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted july , . . https://doi.org/ . / . . . doi: medrxiv preprint estimates. non-binary categories remain qualitatively stable between % and %. we implement our social distance parsing approach via regression of the following form, where y it is the vector of median time spent at home in cbg i on day, t, and x it is the matrix of categorical dummies in a given regression. this model does not include an intercept, so β t is interpretable as the group mean on day t. in contrast to the pre-post approach used in bushman et al. ( ) , this analysis allows us to see trends based on actual cbg data instead of hypothetical differences. we estimate β t for each day from january to june , . we can apply this methodology to any demographic variable available from the acs. we omit three demographic variables from our report to succinctly describe results related to who can work from home. these variables are gender, age, and race, and they influence our understanding despite their omission here. these omitted categories are correlated with education, income, and employment status. we choose to keep this analysis separate rather than including controls because of barriers to identification and a recognition that such an analysis is biased. . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted july , . . https://doi.org/ . / . . . doi: medrxiv preprint . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted july , . . https://doi.org/ . we explore the heterogeneity of this response along education, income, and ability to work from home (figure ). we find that those with bachelor's degrees or higher, household incomes greater than $ , , and a greater ability to work from home spent significantly more time at home relative to the rest of the population. on april th, the initial peak of the covid- response, people in occupations with higher ability to work from home spent approximately more hours at home than those in occupations without the ability to work from home. as states and municipalities have reopened, people in all sociodemographic groups are spending less time at home. . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted july , . . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted july , . . https://doi.org/ . this simple approach to parsing distancing metrics has its limitations. it is possible that the population of device users in a cbg does not align with the category that it has been assigned in our analysis. mobile device ownership is unequally distributed across society with younger people more likely to have smartphones and access to the internet. in , % of individuals ages - in the u.s. had smartphones while only % of individuals older than owned smartphones (silver, ). our classification method may be more robust to these effects since we focus on more homogeneous cbgs. however, more research is needed to understand the extent to which mobile device users are representative of the population at large. our analysis has several implications for social policy during the covid- response. those who are able to work from home spend significantly more time at home relative to their less able counterparts. if this at home work is as productive as the work that they performed under pre-covid- circumstances, there is little to be gained by this portion of the population returning to work as usual. employers can complement public health policy by working hard to accommodate at risk populations. we acknowledge support from amazon web services diagnostic develop- ment initiative. we thank safegraph (www.safegraph.com) for generously providing data. baker, m. g., peckham, t. k., & seixas, n. s. ( ). estimating the burden of united states workers exposed to infection or disease: a key factor in contain- ing risk of covid- infection, . , e . url: https://journals. . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) the copyright holder for this preprint this version posted july , . . https://doi.org/ . effectiveness and compliance to social distancing during covid- how many jobs can be done at unequal we stand: an empirical analysis of economic inequality in the united states neighborhood income and physical distancing during the covid- pandemic in the u characteristics of workers in low work-from-home and high personal-proximity occupations l. . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted july , . key: cord- - u kn k authors: mills, william r.; sender, susan; reynolds, karen; lichtefeld, joseph; romano, nicholas; price, melissa; phipps, jennifer; white, leigh; howard, shauen; domico, rexanne title: an outbreak preparedness and mitigation approach in home health and personal home care during the covid- pandemic date: - - journal: home health care manag pract doi: . / sha: doc_id: cord_uid: u kn k the acute respiratory disease covid- , caused by the novel coronavirus sars-cov- , is a worldwide pandemic affecting millions of people. the methodology that organizations who provide home health and personal home care services are using to respond to this pandemic has not yet been characterized. in this report, we describe our approach to comprehensive outbreak suppression and report an initial case series of covid- positive patients receiving home-based services. we implemented enhanced infection control procedures across our affiliates, and we communicated these protocols to our offices using multi-faceted methods. using custom built software applications enabling us to track patient and employee cases and exposures, we leveraged current public health recommendations to identify cases and to suppress transmission. in the -day period between january , and april , , our affiliates provided services to covid- positive patients (< . % of census). twenty patients were referred to home health post hospitalization for covid- related illness, whereas were found to have covid- while living in community settings. of those who were found to have covid- in the community, ( %) required subsequent hospitalization. hospitalized patients had an average age of . ± , and % were male. there were deaths ( %) among those hospitalized from the community with covid- related illness. a highly coordinated and frequently communicated approach to infection control, case identification and employee screening can be performed by home health and personal home care organizations. studies that further assess risks and predictors of illness severity in home-based covid- patients are needed. the acute respiratory disease covid- , caused by the novel coronavirus sars-cov- , is a worldwide pandemic affecting millions of people. since first being discovered in late in wuhan, china, the virus has proliferated swiftly and has caused over million infections and over , deaths. studies have shown that older individuals with higher numbers of chronic medical conditions are at risk for being most severely ill from covid- . medicare beneficiaries that have higher numbers of chronic conditions are the highest utilizers of home health services, with one-quarter of beneficiaries with six or more chronic conditions receiving or more visits during the year. however, the manner in which covid- is affecting home health and personal home care providers and patients has not yet been characterized. our affiliates provide home health or personal home care services in states. to address the threat posed by covid- , we developed a comprehensive outbreak preparedness and mitigation strategy, with a primary objective of protecting home health and personal home care patients. in this report, we present the mitigation methods we have utilized in our home health and personal home care affiliates in the days since the first case of covid- was confirmed in the u.s. on january , . in addition, we report a covid- positive case series of home health and personal home care patients, summarizing our initial experience in supporting patients during the pandemic. we brought together a multi-disciplinary team of medical, clinical, communications, operations, compliance, legal and risk management, as well as human resources leaders throughout our organization and formed an outbreak preparedness and action committee. the mission of the committee was to prepare for potential outbreaks and to act when necessary to protect, support, and serve patients and our employees. the committee developed a comprehensive preparedness plan and served as a means of consolidating internal and external communications regarding covid- questions, planning, and response. beginning in early february , we began monitoring the global situation daily. our principal monitoring source was the johns hopkins university coronavirus resource center, as well as the centers for disease control and prevention (cdc) and world health organization's (who) covid- situation rooms. when assessing individuals with a fever and lower respiratory symptoms, such as coughing or shortness of breath, or potential exposures, we utilized the cdc's infection control guidance for healthcare professionals about coronavirus. a covid- case was defined as a positive nucleic acid test for sars-cov- rna. we built a secure, cloud-based web application to enable capture of confirmed cases and exposures from all affiliate sites. the application leverages a quickbase (quickbase, inc., cambridge, ma) data structure to capture confirmed cases and potential exposures from sites across the u.s. entry of new cases auto-notified our team of nurses, who then advised the operations team at our affiliate sites to assist with planning and triage of cases. the clinical and operational plan included reinforcement and training on necessary quarantine and isolation procedures, as well as ordering additional personal protective equipment (ppe) supply. entry of new employee cases or exposures triggered an auto-notification to that location's human resources partner, who then worked with the clinical team and the employee to support triage, isolation at home if needed, and eventual return to work. to optimize our ability to visualize covid- positive patients and employees by site, we developed a business intelligence application, leveraging power bi (microsoft corp, redmond, wa). the leadership teams used the visualization application as a "real time situation room" that enabled us to deploy specific mitigation tactics as cases emerged. comprehensive training on infection control policies and procedures was deployed through a combination of intranet resources as well as on-site and web-based live meetings ( figure ). the infection control measures were adapted from the u.s. centers for disease control and prevention, and the educational training enabling appropriate implementation of these measures was developed by our nursing quality team through a variety of live and recorded web meetings and slide presentations, videos, and written policy and instructional documents. in order to streamline the procurement and distribution of ppe to our home health and personal home care affiliates, we formed a new central supply function. ppe kits were assembled and shipped to all locations, in addition to allotments of hand sanitizer, cleaning materials, and other items required to effectuate optimal infection control. we also implemented additional cleaning and disinfection protocols in our offices. leadership had daily management team conference calls and used a web based collaboration platform (microsoft teams, microsoft corp, redmond, wa) to share daily operational documents and track ppe shipments to our branch locations. to limit visitors to home care and home health offices as a potential vector of virus transmission, we enacted a policy that limited visits to all offices by people who are sick and posted signs near the entrance of our offices to remind sick visitors that they should not visit. in order to screen and prevent employees from coming to work sick, we developed a cloud-based symptom-screening application. for selfscreening, all employees were asked to record their temperature daily and answer simple screening questions as shown ( figure ). symptomatic employees were isolated at home and tested for covid- where testing was available. where testing was not available, employees were prohibited from working until they met return to work requirements. for any covid- positive employees, we isolated the employee at home until they met the cdc's return to work criteria for healthcare workers. to enable employees across all locations to have access to the most current information, policies, and training materials, we developed and deployed over covid- outbreak prevention and action resource materials for employee use. this resource library was posted to our organizational intranet as well as our employee mobile app and updates were also communicated by email to the organization three times per week. the resource library is available here. in the -day period between january , and april , , our home health and personal home care affiliates provided services to covid- positive patients (< . % of census). patients were referred to home health post hospitalization for covid- related illness, whereas were found to have covid- while living in community settings. in % of cases, when a covid- case was confirmed or suspected, caregivers wore personal protective equipment in the home and education of cohabitating individuals was performed. of those who were found to have covid- in the community, ( %) required subsequent hospitalization. hospitalized patients had an average age of . ± , and % were male. there were deaths ( %) among those hospitalized from the community with covid- related illness. patients who died were approximately years younger than those who did not. we report cases of covid- in the first days of the u.s. covid- outbreak in a home health and personal home care population. at a prevalence of census of less than one-half of %, this infection prevalence rate is considerably lower than rates reported in congregate care settings. in our early covid- experience, % of cases were referred to home health after a hospitalization during which the patient was found to have covid- . about % were found to have covid- in community settings, and of those % required hospitalization. among those requiring hospitalization, three-quarters died. older individuals with higher numbers of chronic medical conditions have been shown to be at risk for being most severely ill with covid- , however in our affiliates' early experience, those who died were approximately years younger than those who did not. further evaluation of additional risks that may be associated with increased likelihood of hospitalization and death in a community-based home care population, including number and type of preexisting medical conditions and social determinants of health, are needed. while the overall prevalence of covid- among our affiliates to date is low, our organization is taking considerable steps to continue to identify and mitigate potential cases and exposures to keep infection rates low. employee symptom and temperature screenings, and the use of appropriate ppe will continue to be critical components of outbreak mitigation for all patient-facing caregivers and clinicians. in addition, regular workforce surveillance testing is likely to play an increasingly important role in those visiting patients in home settings. serological assays to detect sars-cov- antibodies are rapidly becoming available and will be critical to estimate the prevalence of infections, including those who are asymptomatic. following infection, detectable igm and igg antibodies develop within days to weeks of symptom onset in most infected individuals. [ ] [ ] [ ] while it is presently premature to use such assays to determine whether individuals are immune to reinfection, there may be greater current value in utilizing an antibody test's negative predictive value. initially, we have begun utilizing point of care (poc) antibody testing for clinicians and caregivers who visit congregate care settings. while any symptomatic or covid- positive employee continues to be disallowed from working until they meet return to work guidelines, we are also beginning to screen asymptomatic visiting clinicians and caregivers using a rapid poc test for igm and igg antibodies against sars-cov- . while antibody tests are not appropriate for diagnosing symptomatic individuals, we believe that using antibody tests that have adequate negative predictive value to routinely screen asymptomatic home care workers, particularly those who visit congregate care settings, may be helpful. a negative result on such a covid- poc antibody test performed on home health clinicians and caregivers, in addition to daily documentation of a lack of symptoms or fever, can provide additional reassurance to patients, family members and leaders of congregate care settings that visiting caregivers and clinicians have a low likelihood of transmitting infection to patients and residents. a highly coordinated and frequently communicated approach to infection control, case identification and caregiver and clinician screening can be performed by home health and personal home care organizations. such methodology is especially important in a pandemic such as covid- , where the home is emerging to be a preferred place for many affected patients to isolate and recover. studies that further evaluate medical and social determinant risks and evaluate predictors of severity of illness in home-based covid- patients are needed. a novel coronavirus from patients with pneumonia in china an interactive web-based dashboard to track covid- in real time characteristics of and important lessons from the coronavirus (covid- ) outbreak in china chronic conditions among medicare beneficiaries, chart book infection control guidance for healthcare professionals about coronavirus (covid- criteria for return to work for healthcare personnel with suspected or confirmed covid- our patients are dropping like flies. usa today covid- and postinfection immunity: limited evidence, many remaining questions antibody responses to sars-cov- in patients of novel coronavirus disease virological assessment of hospitalized patients with covid- temporal profiles of viral load in posterior oropharyngeal saliva samples and serum antibody responses during infection by sars-cov- : an observational cohort study the authors wish to express our most sincere gratitude to courageous home health and personal home care caregivers across the globe who continue to provide home-centered care and services during the covid- pandemic. the author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. the author(s) received no financial support for the research, authorship, and/or publication of this article. william r. mills https://orcid.org/ - - - key: cord- -jwpb authors: kagan, lori j.; aiello, allison e.; larson, elaine title: the role of the home environment in the transmission of infectious diseases date: journal: j community health doi: . /a: sha: doc_id: cord_uid: jwpb the purpose of this paper is to examine current health care literature ( – ) regarding the microbiology of the home environment, to summarize evidence of transmission within the home, and to assess effectiveness of cleaning practices and products. the home environment, particularly the kitchen and bathroom, serves as a reservoir of large numbers of microorganisms, particularly enterobacteriacae,and infectious disease transmission has been demonstrated to occur in – % of households in which one member is ill. current food preparation and cleaning practices provide multiple opportunities for intra-household member spread. routine cleaning is often sufficient, but in cases of household infection, may not adequately reduce environmental contamination. the effectiveness of disinfectants varies considerably and depends on how they are used as well as their intrinsic efficacy. the behavioral aspects of infection prevention in the home (e.g., foodhandling and cleaning practices) warrant increased public attention and education. during the past few decades, research on the epidemiology of infections has focused on hospitals, day care facilities, and schools, but little attention has been paid to the home. recent events, including widespread media coverage of foodborne outbreaks and increased marketing of a variety of antibacterial products for personal hygiene and hard surface disinfection, have resulted in a resurgence of interest and public concern about hygiene and cleanliness in the home. hygiene refers to conditions or practices by which people maintain or promote health by keeping them and their surroundings clean. the question that persists is: how do house-hold cleanliness and personal hygiene affect the risk of infectious disease transmission? the purpose of this paper is to examine current health care literature regarding the microbiology of the home environment, to summarize evidence of transmission within the home, and to assess the effectiveness of cleaning and disinfecting practices and products in controlling transmission. it is our intention that this information will provide perspective regarding microbial risks in the home environment and a basis for developing more appropriate strategies for home hygiene based on what has been shown to effectively reduce infection risk rather than on fear or speculation. database, and columbia university's on-line catalogue were searched for research articles related to home hygiene during the years - . key words included: home hygiene, domestic hygiene, food hygiene, and crosscontamination. open searches, using the same key words, also were conducted on internet search engines, including yahoo and excite. the search was restricted to developed countries, and only to articles in english or with english abstracts. excluded were articles pertaining to assisted living facilities, nursing homes, schools, and hospitals. studies have shown that areas in the home, particularly the kitchen, bathroom and possibly the laundry, can serve as reservoirs for microbial colonization. dirty dish rags, cloths and wet sponges have been shown to spread microbial contamination throughout the kitchen. [ ] [ ] [ ] [ ] [ ] changes in laundering processes have also made transmission of disease via the washing machine a possibility. [ ] [ ] [ ] despite the fact that globalization of food distribution and international travel can transport microorganisms around the world in a matter of hours, in england, wales, and the netherlands % of salmonella and campylobacter infections are acquired in the home. [ ] [ ] further, social and demographic changes have increasingly led to the care of certain "at risk" groups within the home, not only neonates and the elderly, but other per-sons with compromised immune systems as well. in the united states, % of the population is estimated to fall into these categories. in one of the early studies of the domestic kitchen, de wit et al. used an indicator organism, escherichia coli k , to determine the extent of cross contamination from frozen chickens. cross-contamination occurred in a large proportion of those kitchens surveyed and in many cases the indicator organism persisted even after washing and rinsing of the kitchen surfaces. scott et al. measured numbers and types of bacteria at various sites in more than english homes. the highest counts were isolated from wet areas such as u-tubes, kitchen sink, draining board, cleaning cloths and mops, and dishcloths, and pseudomonads were isolated in over % of the homes. in a subsequent study enterobacteriaceae were detected in % of the homes surveyed. contaminated dishcloths and other cleaning utensils also may act both as reservoirs and disseminators of pathogenic organisms. , although drying reduces the number of organisms on clean, laminate surfaces, large numbers of bacteria have been recovered from contaminated surfaces and both clean and soiled cloths as much as to hours after drying. thus, drying alone is not sufficient to eliminate contaminating organisms. further, finger contact with contaminated surfaces and cloths resulted in the transfer of large numbers of organisms to the hands. cloths used for cleaning and/or drying kitchen utensils may transfer contamination throughout the kitchen especially when the same cloth is used for multiple purposes. in some households, the same cloth is used to wash cooking and eating cutlery and then to wipe down the drain board and counters. since plain soap does not necessarily kill microorganisms, soap and water cleaning of contaminated surfaces and hands may actually spread microbial contamination in the environment. speirs et al. sampled kitchens including the following key sites: worktop, chopping board, draining board, sinks, water tap handles, insides of rubber gloves, refrigerator shelf, and dish washing cloth. they isolated various enterobacteria including enterobacter cloacae, klebsiella pneumoniae and escherichia coli. in addition, bacillus subtilis, pseudomonas aeruginosa, staphylococcal and micrococcal species were isolated. the highest counts were found in the wet areas around the sink and the cloths used for wiping and/or drying kitchen surfaces and appliances. in another study, the sink drain was the most contaminated site, harboring . - . log (> . % reduction) of microorganisms. enriquez et al. studied cellulose sponges and cotton dishcloths from households in four u.s. cities and isolated and different bacterial species, respectively. most commonly isolated were pseudomonads, but salmonella was also isolated in . % of the sponges and . % of the cloths. other commonly isolated gram-negative bacteria included species of enterobacter, serratia, and klebsiella. salmonella can be transferred to sponges and towels and survive there, resulting in contamination of other areas of the kitchen. specific risk factors for domestic outbreaks of foodborne pathogens include improper food storage, undercooking, and cross-contamination, which may be responsible for % of salmonella outbreaks in the home. during food preparation salmonella can be spread throughout the workspace by such actions as whisking batter; bacteria have been found one meter away from each side of the site. powered cooking equipment like the electric blender can also lead to widespread distribution, up to a - meter radius around the site. in experiments with chickens contaminated with salmonella and campylobacter, a variety of sites in the kitchen, including cutting boards, sinks, handles, faucets, and work areas tested positive after the usual meal preparation procedures were used. , in a case control study of food preparation, salmonella was isolated from dishcloths not only in case homes in which salmonella infection persisted but also in control homes. salmonella from dried foods that have contact with moist foods, such as fruit or meat, can transfer within seconds to the wet foods. within a few hours potentially infective doses can be reached as the bacteria multiply under moist conditions. temperature of the water used for "washing up" can also influence microbial survival. for dishes washed by hand, the dishwashing water temperature often is below °c at the start and will continue to drop during the dishwashing process. this temperature is not high enough to destroy most organisms. a few studies have demonstrated that when sterile cookware was washed in water inoculated with salmonella or campylobacter, transfer of the pathogen to the dishes occurred. , bathroom like the kitchen, the bathroom can be a reservoir of large numbers of microorganisms, particularly in wet areas. in homes in which a family member had salmonellosis, four of six toilets tested positive for salmonella under the recess of the toilet bowl rim, an area difficult to reach with domestic toilet cleaners. in one toilet, salmonella was still present four weeks after the infection, despite the use of cleansers. after artificial contamination of the toilet, flushing led to contamination of the toilet seat and lid, and in one instance salmonella was isolated from an air sample taken after flushing. there is limited evidence of antibiotic-resistant organisms being present in the home environment. in both the bathrooms and the kitchens of randomly selected homes in north carolina, four of enterococcal isolates were vancomycin-resistant and one of escherichia coli isolates was ampicillin-resistant. klebsiella and enterobacter strains had the highest frequency of resistance to ampicillin, and pseudomonal strains were uniformly susceptible to of the tested antibiotics. rutala et al. concluded that in comparison to organisms causing clinical infections in hospitals, those isolated in homes are less likely to be antimicrobial resistant. while the kitchen and the bathroom are logical places for the introduction and transmission of pathogens, one area of the home that may seem less likely to allow the survival and dissemination of microorganisms is the washing machine. various common laundering practices allow bacteria at varying levels to remain in laundered items. standard detergent washing and rinsing practices do not always produce large reductions in microbial contamination. damp cloths that had been washed in detergent and then stored at room temperature over a -hour period showed an increase in contamination indicative of the survival and multiplication of microbes. drying was the most reliable method of decontamination when carried out at a temperature of °c for hours. in a study to evaluate the survival of bacteria and enteric viruses during washing and drying as performed in u.s. homes, sterile cotton swabs were inoculated with mycobacterium fortuitum, salmonella typhimurium, staphylococcus aureus, e. coli, rotavirus sa , hepatitis a virus, and adenovirus type . the contaminated swabs were then added to sterile cotton underwear, t-shirts, and a pillowcase that contained an organic load typical of homes. all test organisms survived the wash process; wash and rinse cycles alone reduced enteric viruses by - % and bacteria by > %. during the drying cycle, viruses were more resistant to killing than bacteria. drying was most effective, in decreasing order, for s. typhimurium, s. aureus, and m. fortuitum. detectable levels of e. coli were not found after drying. together, washing and drying reduced all bacteria by at least . %, adenovirus type by . %, hepatitis a virus by . % and rotavirus by . %. the test organisms contaminated other laundry in the machine, as well as the washing machine itself, which led to the contamination of subsequent loads of laundry. using the petrocci and clarke ( ) method, several powder and liquid laundry detergents that are now on the market were tested for activity against s. aureus and k. pneumoniae from wash water and fabric (table ; personal communication, j. kain, procter and gamble, cincinnati, oh, august ) sanitizing powder detergents reduced s. aureus and k. pneumoniae in the laundry fabric by > %. all other laundry detergents were less active. test products were all commercially available detergents with built in oxygen-based bleach systems. all products were purchased at local grocery stores in the cincinnati ohio area during . no additional laundry additives, such as chlorine bleach, were tested either alone or in conjunction with detergents. percent reduction (% reduction) refers to the calculated reduction in bacteria relative to a water + . % polysorbate baseline control. polysorbate was added to the water as a non-toxic surfactant control to improve the relevancy of organism removal characteristics of the control relative to the high surfactancy test treatments. a "sanitizing detergent with oxygen bleach" is one that meets us epa criteria for sanitization claims and a "non-sanitizing detergent with bleach" is a detergent that has a bleaching ingredient that may also have antimicrobial properties but not at the concentration and in the formulation matrix of this detergent and, therefore, does not meet us epa's criteria for sanitization claims. (unpublished data. d. j. kain, principal scientist, the procter and gamble company, cincinnati, oh, / ). although there are large numbers of microorganisms present in the home, it does not necessarily follow that this will result in infectious disease transmission. in this section, routes of transmission and evidence of actual transmission in the home are reviewed. bacteria, viruses, and fungi exist throughout our environment and can be transmitted to individuals through a variety of methods. direct contact includes person-to-person spread or contact with blood and other body fluids, such as occurs in fecal-oral spread. endogenous infection occurs when an individual contaminates one region of the body with microbial flora from another area. other modes of transmission include contact with droplets and airborne spread by droplet nuclei. indirect contact is transmission through a contaminated intermediate object. usually, the intermediary is the hands. for example, a parent who changes a diaper of a baby infected with shigella and proceeds to prepare a meal for the family without handwashing could transmit the pathogen to the entire family. another example of indirect transmission is use of a cutting board to prepare raw chicken and then to slice fresh fruits and vegetables. common source transmission is often responsible for e. coli o :h outbreaks caused by consuming undercooked, contaminated meat. although we did not find any data published between - regarding viral contamination in the home, viruses are a major cause of common illnesses and can survive in the home environment. worldwide, respiratory syncytial virus (rsv) is the primary cause of childhood viral respiratory infection. rsv is transmitted via inanimate objects and direct contact with infected persons. the virus is capable of surviving for a number of hours on inanimate objects and surfaces, providing ample opportunities to contaminate the hands of caregivers. contaminated hands can indirectly spread the virus to others in the home, including the caregivers if they touch their eyes or nose without handwashing. while barrier precautions have proven effective in lowering the rates of transmission in a hospital setting, goldmann asserts that it is entirely probable that careful handwashing after contact with infected infants would have been equally effective. perhaps more widespread than rsv among people of all ages is the common cold. children can expect to average to , and adults, three to five episodes per year. there are more than serologic types of rhi-novirus, and contracting one type provides no immunity against another. influenza is spread via airborne nuclei droplets, but the most likely route of transmission of rhinovirus is contaminated hands. in the united states, the second most common community infection is gastroenteritis. an important cause of gastroenteritis is rotavirus, which is transmitted by the fecal-oral route and possibly through respiratory spread and contaminated hands and surfaces. rotavirus has been implicated in outbreaks in hospitals, daycare centers, schools, and nursing homes. there is the potential for transmission of rotavirus within the home since it is present on hands, various surfaces and objects. other gastrointestinal pathogens, such as hepatitits a virus, parvovirus, adenovirus, and other enteroviruses follow a similar transmission pattern as rotavirus. , hepatitis a, for example, has been implicated in numerous foodborne outbreaks and in various settings such as hospitals, day-care centers, and schools. it is commonly spread via contaminated food and water. in laboratory experiments, bidawid et. al simulated cross contamination of fresh lettuce with hepatitis a from fingers of adult volunteers. the potential for cross-contamination in the kitchen has already been briefly discussed. when not properly cleaned and/or disinfected, countertops, cutting boards, and other kitchen surfaces provide an optimum milieu for survival of microbes. according to the centers for disease control and prevention, between - the primary food preparation practices contributing to foodborne disease were improper storage temperatures and poor personal hygiene of the food handler, and these faulty practices are common in the home. in a study of kitchens in australian homes, daily practices were videotaped over the course of to weeks. the most common unhygienic practices viewed included infrequent and poor handwashing technique, lack of handwashing prior to preparing meals, pets in the kitchen, hand contact with the face, mouth, nose, and hair during food preparation, and an all-purpose towel for hands and dishes. in addition to these lapses in hygiene, deli meat was left outside the refrigerator and uncovered for hours; a dish towel that had fallen to the floor and been stepped on was subsequently used to wipe off the counter; and a dishtowel was also used to cover cooked meat and thereby cross-contaminate it. practices caught on film in american homes did not differ substantially from their australian counterparts. the same towel used to wipe up raw meat juice was then used to dry washed hands. in only in homes were raw meat and seafood properly stored on the bottom shelf of the refrigerator so as to prevent dripping liquids from contaminating other foods; % of those preparing meatloaf undercooked it, % undercooked the chicken, and % did not completely cook the fish. further, the american society for microbiology conducted a telephone survey of more than , people in the united states. eighty-one percent of respondents claimed to wash their hands prior to handling or eating food. after petting an animal, % reported that they do not wash their hands, nor do % after coughing or sneezing, or % after handling money. in a telephone survey conducted in australian homes, % of respondents allowed raw meat to thaw at room temperature, % cooled cooked food to room temperature prior to refrigeration, and close to % did not know the right temperature for refrigeration of perishables. in addition, in respondents did not recognize handwashing as important in the reduction of cross-contamination and foodborne illness. based on these findings, it is likely that everyday activities in the home will result in microbial spread. a study of the transfer of serratia rubidea and the virus prd- from common household articles to the hands confirmed that infection is possible from daily contact with contaminated objects. transmission of the bacterium and the virus were demonstrated on telephone receivers, faucet handles, and sponges, and transfer to hands was highest from hard, nonporous surfaces. if a small amount of stool from a person infected with salmonella were transferred from the individual's contaminated hands to the receiver, the next user could pick up > colony-forming units (cfu) on his/her fingertips, and could transfer > . × cfu, or % of the total, to the mouth, a dose sufficient to cause disease. after wringing out a household sponge, - bacteria and viruses were found on the hands of test subjects. in another study, bacteriophage [phis] x was applied to door handles and the hands of volunteers. test persons touched the handles and shook hands with the volunteers. the hands of the test persons were then sampled for the virus. both skin surfaces and contaminated door handles were efficient sources for transfer. up to people became contaminated after touching the same door handle, and subsequent transmission was traced to six additional people from these primary contacts. each year million americans develop food poisoning, and about % of reported foodborne illnesses occur in the home. ninety percent of salmonella infections are thought to be associated with the home environment. in the uk, cross-contamination has been implicated in about % of foodborne outbreaks within the home, while poor hand hygiene is responsible for about %. in addition, it has been estimated that cross-contamination in the home contributed to % of salmonellosis outbreaks. in a household in which one person has been sick with salmonella, it has been estimated that there is a % chance that at least one other member of the household will also be infected. both hands and inanimate surfaces are responsible for the cross-contamination that leads to secondary infections in the home. other bacteria and viruses transmitted via the fecaloral route most likely spread throughout the home in the same manner. in another study, the home environment was implicated in the spread of salmonellosis among children under four years of age. isolates were obtained from children infected with salmonella and samples were taken from multiple locations in the home. pulsed-field gel electrophoresis patterns showed identical serotypes from the index case and the home environment. isolates which exhibited identical serotypes were found in locations such as vacuum cleaner, dirt surrounding front door, and refrigerator shelf as well as in household members and pet animals. children can carry the infections acquired in nursery schools or play groups into the home, where up to % of household members may become infected via cross-contamination. in a study of an outbreak of diarrhea caused by e. coli o in new jersey, % of contaminated hamburgers were consumed in the home. while the home may not have been the primary source of contamination, proper cooking may have prevented the spread of the organism. the use of communal laundry facilities also has been correlated with the transmission of microbes and higher rates of infectious disease symptoms among household members. in this study, a variety of home hygiene practices in households were examined, including personal hygiene, food handling and general cleaning and laundry practices. in a logistic regression analysis of these potential risk factors only communal laundry practices (p = . ) and lack of bleach (p = . ) were significantly associated with increased risk of infectious illnesses among household members. in households in which one member had a primary infection of campylobacter jejuni, % of household contacts were symptomatic during the same time period. while most instances were attributed to a common source, intrafamilial spread of infection was implicated in / ( . %) cases. a welsh study concluded that the secondary household transmission rate for sporadic shiga toxin-producing e. coli o (stec o ) infection was between % and %. in another study, colonization of one family member with s. aureus had no bearing on the observed carriage rate of another family member. when both child and guardian were colonized with methicillin resistant s. aureus, however, the same strain was most often seen, indicating that transmission between household members probably occurred. recently, risk models such as the hazard analysis and critical control point (haccp) and quantitative microbial risk assessment (qmra) based on early detection and prevention of future health risks within the home and community have been proposed. , , cleaning refers to the mechanical removal of dirt and soil from an object or area. disinfection, on the other hand, is the chemical destruction, inactivation, or killing of microbes. detergents and water are the preferred products for cleaning; products containing substances such as alcohol, bleach, quaternary ammonium compounds , and phenolics can be disinfectants depending on the formulation and use of the product. under normal conditions, cleaning is adequate for households, but in some circumstances such as an outbreak or the handling of potentially contaminated food, disinfection may be indicated. in a study designed to test the effectiveness of a variety of household products against several enteric bacterial pathogens, commercial products containing ammonia resulted in a - log reduction and phenolic and alcohol based products were associated with a reduction of logs. baking soda and vinegar were generally ineffective (< log reduction). the commercial disinfectants inactivated both antibiotic-susceptible and resistant bacteria. in another study, only bleach was effective against s. aureus, salmonella typhi, and e. coli. while concentrated ammonia and vinegar were effective against s. typhi and e. coli, none of the other productsborax, ammonia, baking soda, vinegar, or dishwashing detergent-demonstrated antimicrobial activity against s. aureus. four disinfecting agents were evaluated for their ability to prevent the transfer of a human rotavirus from stainless steel disks to the fingers of volunteers: disinfectant spray ( . % o-phenylphenol and % ethanol), domestic bleach ( % sodium hypochlorite diluted to ppm of free chlo-rine), quaternary ammonium-based product ( . % quaternary diluted : in tap water), and a phenol-based agent ( . % phenol diluted : in tap water). viral reductions on disks treated with the disinfectant spray were > . %, . % for bleach, % for phenolic, . % for quaternary, and . % with tap water. virus was not detected on the fingers that had contact with disks treated with disinfectant, bleach, and phenolic, but contact with tap water or quaternary-treated disks resulted in transfer of . % and . % of the residual virus, respectively. the same products were tested against rhinovirus. after to minutes of contact with the virus, the alcohol and phenolic-based disinfectant spray reduced virus infectivity by > . %. virus was not detected on the fingers of volunteers who had contact with the treated disks. bleach reduced the viral load by . % after minutes of contact, and once again no detectable virus was transferred to fingers. the quaternary-based product inactivated only . % of the virus, and the phenolic only . %. contact with the quaternary-based treated disk resulted in the transfer of . % of the residual infectious virus, while the phenolic-treated disks resulted in the transfer of . %. a particularly impressive study was one in which volunteers licked dried human rotavirus that had not been treated with anything, and all became infected. an alcohol and phenolic-based disinfectant spray applied to the virus interrupted the transfer of the virus; none of the volunteers who consumed the spray-treated virus became infected, whereas of who ingested the unsprayed virus became infected. disinfection in the home is dependent not just on the product, but also on how it is applied. during a week study in arizona, homes were supplied with a variety of disinfectant products, but no specific use instructions were given. subsequently, most of the disinfectants were removed, specific ones were introduced, and a cleaning schedule was established. while the greatest reductions in coliforms occurred after initial introduction of products, introduction of the cleaning schedule led to even greater microbial reductions in the kitchen and bathroom sites studied. these results are consistent with the findings of an earlier study demonstrating that disinfectants used in a timely manner after contamination by food or hands reduced further contamination. kitchen. studies in the uk have demonstrated that cleaning with detergent and hot water alone did not significantly reduce campylobacter and salmonella from contaminated kitchen areas. however, when cleaning was supplemented with hypochlorite there was a significant reduction in the number of bacteria from contaminated sites. in addition, detergent and water washing of dishware was only effective if followed by a rinsing process. in fact, soap and water can actually increase contamination in the home when not followed by rinsing. this suggests that when rinsing is impractical or not feasible, cleaning alone may be insufficient and disinfection may be indicated. in the uk, antibacterial dishwashing liquid has been shown to effectively reduce numbers of recoverable microorganisms on dishes, but not on used sponges. , zhao et al., inoculated raw chicken with an indicator organism, enterobacter aerogenes. the same cutting board was then used to prepare chicken and chop raw vegetables, and - cfu of bacteria was transferred to the vegetables. treating the cutting board with a kitchen disinfectant after preparing the chicken reduced the transmission of bacteria to almost undetectable levels. disinfection in conjunction with paper towel wiping are reported to be the best procedure for cleaning surfaces contaminated with raw meat. laundry. standard laundry practices have changed over the years, and may also contribute to the transmission of microbes in the home. people less frequently hang their clothing and linens outside where the sunlight can aid in denaturing many of the microbes, and ironing, which allows steam to penetrate and reduce the microbial load in the fabric, has become less common. finally, lower water temperatures with smaller volumes of water are used for washing. , jaska and fredell ( ) found no significant differences between a phosphate or a phosphate substitute detergent on s. aureus survival on laundered fabrics and reported that the most important predictor of bacterial reduction in the laundry was the water temperature. the temperature of the water used for washing does not seem to affect the bacterial counts in the fabric in the presence of sodium hypochlorite bleach; that is, both hot and cold water in combination with the bleach cycle are equally successful in reducing bacteria counts, , but in the absence of bleach, warmer washing temperatures ( °c) are more effective and colder temperatures may increase the cross-contamination rate of articles washed together. hence, attaining maximal bacterial reductions in both the machine and fabrics depends both on bleach and the water temperature. [ ] [ ] [ ] although relying on wash water temperatures to achieve meaningful bacterial reductions is impractical in north america since water heaters are typically set at &scedil;c, sodium hypochlorite bleaches for compatible fabrics and newer laundry products containing oxygenated bleach which can be used on colored fabrics will achieve such reductions. bathroom. in the bathroom, splashing and aerosol droplets are responsible for transfer of some contamination from toilets and sinks to surrounding areas in the bathroom, but a chlorine block effectively reduced the level of contamination in the toilet. surrounding areas, however, were not affected by the chlorine, suggesting that direct shedding or hand contact was responsible for contamination of the toilet seat, handle, and floor. a summary of studies of the activity of various household cleaning and disinfecting products are summarized in table . this body of research suggests that a product containing an ingredient with disinfectant properties, such as alcohol, bleach or a phenolic, may be indicated for home use if a household member is ill with an infectious disease or in other high-risk situations. reviews of studies linking hand hygiene and reduced risk of infection have been recently published. , the major benefits of hand hygiene for the general public is for prevention of infectious agents found transiently on hands and spread by the fecal-oral route and from the respiratory tract. , in general, non-antimicrobial soaps are adequate to reduce such transient flora, but in experimental studies reviewed by keswick et al., use of antimicrobial soaps was associated with significant reductions in rates of superficial cutaneous infections. another experimental studies reviewed demonstrated a reduction in bacteria on the skin with use of antimicrobial soaps, but none of these studies assessed rates of infection as an outcome. increasing public awareness stimulated by several highly publicized and serious outbreaks from commercially prepared foods has raised questions about food safety and the appropriate hygienic practices of food handlers. this concern extends to others such as child care providers, educators, sales personnel, and homemakers who have physical contact with members of the public. despite public awareness, however, hand hygiene as practiced by the general public does not meet recommended standards-members of the public wash too infrequently and for very short periods of time. a single recommendation for hand hygiene practices in the home is probably inappropriate. hand hygiene is clearly indicated before and after behaviors that are associated with microbial contamination, especially including toileting, diapering, and preparing or eating food. options for hand hygiene include plain soap and water or use of an antiseptic. generally, plain soaps do not kill microorganisms but rather wash them off with friction and rubbing, removing the majority of microorganisms. for general home use when household members are healthy, plain soaps are often considered to be sufficient. many antiseptic products are available over-the-counter, and are often labeled "antibacterial." these are detergent-based, requiring a traditional handwash with water. non detergent-based antiseptic products are waterless hand rinses, gels or wipes, which usually contain alcohol. they are also readily available to the public over the counter, can be used when no running water or towels are available, and, similar to antiseptic hand washes, have rapid and broad spectrum activity and excellent microbicidal characteristics. such products, however, are not a substitute for handwashing when the hands are physically soiled, since they are not good cleaning agents. , alcohol-based products may be most beneficial in circumstances where immediate antimicrobial activity is needed after encounters that result in a high probability of contamination and where soap, running water, and/or clean towels are not readily available. because the skin is the most important and first-line barrier to infections, it is vital that the skin of the hands be kept as intact and healthy as possible. the skin's water content, humidity, ph, intracellular lipids, and rates of shedding each play a role in retaining the protective barrier properties of the skin, and these factors are affected by hand hygiene. for example, changes in skin ph associated with handwashing may pose a concern since some of the antibacterial characteristics of the skin are associated with its normally acidic ph. some soaps can result in longstanding changes in skin ph, reduction in fatty acids, and, subsequently, changes in the microbial flora. , hence, some hand hygiene practices such as frequent washing with detergents can result in skin dryness, irritation, cracking and other problems. moisturizers prevent dehydration, damage to barrier properties, desquamation, and loss of skin lipids, restore the water-holding capacity of the keratin layer, and increase the width of corneocytes. , they may even help to prevent the transmission of microorganisms from the hands. , for those individuals with dry or damaged skin on the hands, it is important to use emollients or lotions to replace lost fatty acids and keep the hands hydrated. several recent reviews regarding hand and skin hygiene have been published. for additional information, the reader is referred to references. , since hands serve as one primary mode of fecal-oral and respiratory transmission, specific indications for use of antiseptic hand products in the general public occur when: • there is close physical contact with individuals at high risk for infection (e.g., neonates, the very old, or immunosuppressed); • an individual is infected with an organism and may potentially transmit the agent by the direct contact route (diarrhea, upper respiratory infection, skin infections) or in close physical contact (touching) with infected individuals; • an individual is working in a setting in which infectious disease transmission is likely (food preparation, crowded living quarters such as chronic care residences, prisons, child care centers, and preschools). the purpose of this paper was to examine research literature from the last twenty years to determine the potential role of the home environment in the transmission of infectious disease. kitchens, bathrooms, and washing machines harbor a wide range of potential pathogens, and routine practices within these areas of the home can either prevent or facilitate cross-contamination within the home. the potential for transmission of microbes in the home exists, and several studies have demonstrated that transmission does occur. hence, even though infectious risks in the home may be less than in healthcare settings such as the hospital or nursing home, they are certainly present. commercial disinfectants and cleaning products vary in their ability to remove microbes from household surfaces, but successful strategies for reducing microbial risks in the home include both adequate cleaning practices and appropriate use of cleaning and disinfection products. care should be taken to use these products according to instructions in order to maximize removal. in general, these products clearly have a role as part of an overall hygiene strategy within the home. lastly, the behavioral aspects of infection prevention in the home such as food handling practices, warrant increased public attention and education. the gospel of germs: men, women and the microbe in american life an investigation of microbial contamination in the home the survival and transfer of microbial contamination via cloths, hands and utensils a study of the microbial content of the domestic kitchen bacteriological survey of used cellulose sponges and cotton dishcloths from domestic kitchens. dairy campylobacter spp. in the kitchen: spread and persistence impact of changing societal trends on the spread of infections in american and canadian homes hygiene issues in the home foodborne disease surveillance in england and wales; - hygiene in the domestic setting: the international situation cross-contamination during the preparation of frozen chickens in the kitchen a risk assessment approach to use of disinfectants in the community evaluation of antibiotic resistant bacteria in home kitchens (abstract) can consumers prevent the spread of foodborne pathogens in domestic kitchens? proceedings of euroconference the effectiveness of hygiene procedures for prevention of cross-contamination from chicken carcases in the domestic kitchen survival of salmonella in bathrooms and toilets in domestic homes following salmonellosis investigations of the effectiveness of detergent washing, drying and chemical disinfection on contamination of cleaning cloths cross contamination and survival of enteric pathogens in laundry proposed test method for antimicrobial laundry additives transmission of viral respiratory infections in the home modes of transmission of respiratory syncytial virus hand-to-hand transmission of rhinovirus colds interruption of rotavirus spread through chemical disinfection transmission of rotavirus and other enteric pathogens in the home foodborne viral illness-status in australia spread and prevention of some common viral infections in community facilities and domestic homes contamination of foods by food handlers: experiments on hepatitis a virus transfer to food and its interruption impact of changing consumer lifestyles on the emergence/reemergence of foodborne pathogens a video study of australian domestic food-handling practices food safety mistakes caught on tape: food and drug administration america's dirty little secret-our hands a national australian food safety telephone survey studies show that some diseases could easily be transmitted from common articles in the home and community comparative transfer efficiency of bacteria and viruses from common fomites to hands and from the hand to the lip transmission of viruses via contact in ahousehold setting: experiments using bacteriophage straight phix as a model virus cross-contamination and infection in the domestic environment and the role of chemical disinfectants the home environment and salmonellosis in children risk factors for sporadic infection with escherichia coli o :h home hygiene practices and infectious disease symptoms among household members epidemiological investigations on campylobacter jejuni in households with a primary infection sporadic stec o infection: secondary household transmission in wales familial carriage and transmission of s. aureus colonizing children and their guardians application of haccp to identify hygiene risks in the home quantitative microbial risk assessment consumer and market use of antibacterials at home antimicrobial activity of home disinfectants and natural products against potential human pathogens efficacy of sodium hypochlorite bleach and "alternative" products in preventing transfer of bacteria to and from inanimate surfaces chemical disinfection to interrupt transfer of rhinovirus type from environmental surfaces to hands prevention of surface-to-human transmission of rotaviruses by treatment with disinfectant spray reduction of faecal coliform, coliform and heterotrophic plate count bacteria in the household kitchen and bathroom by disinfection with hypochlorite cleaners characterization and quantification of bacterial pathogens and indicator organisms in household kitchens with and without the use of a disinfectant cleaner evaluation of disinfectants in the domestic environment under 'in use' conditions a joint conference by the international scientific forum on home hygiene and the public health laboratory service a joint conference by the international scientific forum on home hygiene and the public health laboratory service development of a model for evaluation of microbial cross-contamination in the kitchen a joint conference by the international scientific forum on home hygiene and the public health laboratory service impact of detergent systems on bacterial survival on laundered fabrics effect of water temperature on bacterial killing in laundry bacteriological quality of fabrics washed at lower-than-standard temperatures in a hospitallaundry facility factors affecting the bacteriological contamination of commercial washing machines the disinfectant action of low-temperature laundering aseptics and aesthetics of chlorine bleach: can its use in laundering be safely abandoned? a bacteriological investigation of the effectiveness of cleaning and disinfection procedures for toilet hygiene a causal link between handwashing and risk of infection? examination of the evidence hand washing: a ritual revisited handwashing education can decrease illness absenteeism antimicrobial soaps: their role in personal hygiene in aly r, beutner kr, maibach h. cutaneous infection and therapy asm inagurates nationwide public education effort apic guideline for handwashing and hand antisepsis in health care settings disinfection, sterilization and preservation, ed. . philadelphia: lippincott, williams and wilkins assessment of two hand hygiene regimens for intensive care unit personnel influence of repeated washings with soap and synthetic detergents on ph and resident flora of the skin of forehead and forearm. results of a cross-over trial in health probationers qualitative and quantitative investigations on the resident bacterial skin flora in healthy persons and in the non-affected skin of patients with seborrheic eczema irritant dermatitis. new clinical and experimental aspects efficacy of protective creams and/or gels staphylococcal infection in a maternal hospital: epidemiology and control the persistence and penetration of antiseptic activity skin hygiene and infection prevention: more of the same or different approaches? hygiene of the skin: when is clean too clean? stability and bactericidal activity of chlorine solutions compatitive testing of disinfectant and antiseptic products using proposed european suspension testing methods inactivation of particle-associated coliforms by chlorine and monochloramine laboratory studies of disinfectants against legionella pneumophila chemical disinfection of non-porous inanimate surfaces experimentally contaminated with four human pathogenic viruses mechanism of chlorine inactivation of dna-containing parvovirus h- the inactivation of foot-and mouth disease virus by chemicals and disinfectants hantavirus infection-southwestern united states: interim recommendations for risk reduction chemical disinfection of human rotavirus-contaminated inanimate surfaces uses of inorganic hypochlorite (bleach) in health-care facility the effect of blood on the antiviral activity of sodium hypochlorite, a phenolic, and a quaternary ammonium compound comparative studies on the detoxification of aflatoxins by sodium hypochlorite and commercial bleaches feasibility of a combined carrier test for disinfectants: studies with a mixture of five types of microorganisms the effect of disinfectants on a geosmin-producing strain of streptomyces griseus key: cord- -abatwr k authors: johnston, l.; malcolm, c.; rambabu, l.; hockley, j.; shenkin, s. title: supporting the resilience and retention of frontline care workers in care homes for older people: a systematic scoping review and thematic synthesis date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: abatwr k the covid- pandemic has reinforced the need to ensure that strategic and operational approaches to retain high quality, resilient frontline care home workers, who are not registered nurses, are informed by context specific, high quality evidence. we therefore conducted this scoping review to address the question: what is the current evidence for best practice to support the resilience and retention of frontline care workers in care homes for older people? medline, pubmed, psycinfo, embase, medrxiv, cinahl, assia, social science premium were searched for literature published between and . the search strategy employed combinations of search terms to target frontline care workers in care homes for older people and the key concepts relevant to resilience and retention were applied and adapted for each database. thirty studies were included. evidence for best practice in supporting the resilience and retention specifically of frontline care workers in care homes is extremely limited, of variable quality and lacks generalisability. at present, it is dominated by cross-sectional studies mostly from out with the uk. the small number of intervention studies are inconclusive. the review found that multiple factors are suggested as being associated with best practice in supporting resilience and retention, but few have been tested robustly. the thematic synthesis of these identified the analytical themes of - culture of care; content of work; connectedness with colleagues; characteristics and competencies of care home leaders and caring during a crisis. the evidence base must move from its current state of implicitness. only then can it inform intervention development, implementation strategies and meaningful indicators of success. high quality, adequately powered, co-designed intervention studies, that address the fundamentally human and interpersonal nature of the resilience and retention of frontline care workers in care homes are required. the detrimental effects the covid- pandemic had on the mental health of those who worked on the frontline through the height of the crisis has been quickly and well documented (cullen, w. et al., ; cabello, i.r., et al., ) . their experiences have focussed attention on the need to protect the psychological wellbeing of frontline health and social care workers globally. to a large extent, however, much of the early and immediate support, resources, public attention and mitigation work was targeted at hospital based workers. as the severity of the impact of the pandemic on care homes became more evident, the critical need to support both residents and staff gained much needed impetus. this delayed focus was symptomatic of wider structural problems of an often overlooked and undervalued workforce (mcgilton, k. et al., ; devi, r. et al., b) . the care home sector began already under considerable pressure, with little pre-preparedness for the additional demands of managing the pandemic on top of the challenges they were already facing. (scottish care, ; mcgilton, k. et al, ) . ongoing recruitment and retention challenges (oung, c. et al., ; chen, hl, et al., ) will be exacerbated. the vast majority of care home staff with a responsibility for providing direct care to residents are not registered nurses. we refer to this staff group as frontline care workers (fcws). fcws may be at greater risk of burnout given a number of factors, such as long and unsocial working hours, low pay and status, and the increasingly demanding physical and emotional nature of their work (vondras et al. ; health foundation ; dreher et al. ) . evidence suggests that the rate of turnover is greatest for fcws (donoghue et al. ; rosen et al. ) who form the majority of staff within care homes. they have different training, skills and duties compared to the registered nurses they work alongside. moreover, in contrast to registered nurses, fcws are less likely to have connections to professional bodies or organisations. the impact of the recent covid- pandemic has intensified the need to ensure this vital frontline care workforce is supported to build resilience, avoid burnout and remain in their roles delivering quality and compassionate care to older people. however, the available evidence to inform best practice in supporting resilience and retention for frontline care workers in care homes is limited and of variable quality (social care institute for excellence, ). evidence reviews of staff resilience conducted in response to the pandemic, focus on hospital based workers or all health and social care workforce (heath, et al. ; muller et al, and pollock et al., forthcoming) . the resulting broad nature of the developing evidence base cannot be transferred or generalised readily to care homes as they may not address sufficiently the 'unique' (university college london ), 'special' (devi, et al., a) and multi-faceted context of care homes (social care institute for excellence, ; muller et al, ) nor those of the staff who work in them. the covid- pandemic has reinforced the need to ensure that strategic and operational approaches to retain high quality, resilient frontline care home workers, who are not registered nurses, are informed by specific, quality evidence. we therefore conducted this scoping review to address the question: what is the current evidence for best practice to support the resilience and retention of frontline care workers in care homes for older people? for purposes of this review, we use the term 'resilience' as a way of conveying not only the specific concept of resilience in itself (scoloveno, ) , but also of burnout, work-related stress, and psychological and mental health and wellbeing. retention encompasses turnover rates, absenteeism, duration of employment and reported staff intentions to leave their job. there is evidence to support that building resilience amongst health care staff may be protective in avoiding burnout and thus in helping to retain staff in their roles (cope et al. ; badu et al. ; delgado et al. ) . this review focusses only on those staff within care homes who have responsibility for providing direct care to residents, but are not registered nurses. we refer to them as frontline care workers (fcws). an initial search plan was developed (lj, cm). a senior subject specialist librarian (sm) further developed and refined the search strategy and carried out the electronic database searches. different combinations of search terms to capture fcws in care homes for older people (burton, j. et al., ) and the key concepts relevant to resilience and retention were applied and adapted for each database as necessary. eight databases (medline, pubmed, psycinfo, embase, medrxiv, cinahl, assia, social science premium) were searched for literature from . grey literature was located by applying the same search strategy principles. internet searches of google, google scholar and opengrey were undertaken. the websites of organisations and networks pertinent to health and social care were searched as were two covid- specific sites -litcovid (nlm) and the who covid- database. the search was undertaken in early june and repeated on july th to ensure emerging evidence was captured. the results of the database search were screened for relevance by reviewing the title and abstract. this was conducted independently by three members of the project team [sm, lj, cm] , and resulted in the initial inclusion of papers. full text versions of these papers were accessed and reviewed by three reviewers separately (lj, cm and lr). papers and publications were included if they met the criteria detailed in table . where there was no consensus for inclusion/exclusion a final decision was made by lj (n= ). this process resulted in the inclusion of papers. the reference lists of the included articles were hand searched for further studies meeting the inclusion criteria and resulted in one additional paper. the prisma flowchart (figure ) illustrates the search strategy and paper selection process. reporting only on prevalence/measurement of resilience or retention setting is care homes for older people other residential settings, for example setting for physical/learning disabled adults provides evidence of practice based approaches to resilience and/or retention and explicitly states that it is of relevance to care home staff who provide direct care to residents evidence concerning resilience or retention which only includes or is only of relevance to registered nursing staff within care homes reports on findings or outcomes from evaluations of pilots, initiatives, activities, tests of change, qi programmes undertaken in care homes for older people discussions of conceptual frameworks or theoretical models of resilience and/or retention given the targeted nature and emphasis of the review, we placed no restrictions on paper type. a decision was made not to exclude any source on the grounds of their 'quality'. in accordance with scoping review methodology and given both the wide range of study designs included and the limited timeframe in which to undertake this review, a quality appraisal of the evidence was not undertaken (arksey & o'malley ; levac et al. ; tricco et al. ) . extracted data included: author(s), publication year, country of origin, study/paper design or methodology, aim, indicators and measures or resilience and/or retention, participants, findings and key recommendations. . cc-by-nc-nd . international license it is made available under a perpetuity. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . / . . . doi: medrxiv preprint thematic synthesis of the results of the scoping review, adopting the three-stage method set out by thomas and harden ( ) , was undertaken. firstly, lr coded the extracted data, organising these into descriptive themes. a number of discussions between reviewers (lj, lr and cm), were held. discussion focussed on explicating the 'meaning' of the descriptive themes as they related to the review question and drawing out similarities, dissimilarities and patterns. informed by this, lj undertook the third and final stage of thematic synthesis and developed five analytical themes to ensure our findings went 'beyond' description and generated new insight and explanations (thomas & harden ) . these were discussed and further refined by the whole team (lj, cm, lr, jh and ss). is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . / . . . doi: medrxiv preprint general characteristics of the included papers are outlined in table . nine papers originated from the usa (berridge et al. ; berridge et al. ; boerner et al. ; castle ; choi & johantgen ; dreher et al. ; lane & mcgrady ; yeatts et al. ; yeatts et al. ) , five from the uk (moss & meyer ; scottish care ; british geriatrics society ; rajan &mckee ; university college london ), four from canada (berta et al. ; bethell et al. ; braedley et al. ; caspar et al. ) , three from sweden (beck et al. ; ericson-lidman & ahlin ; wallin et al. ) , and two from switzerland (gaudenz et al. ; schwendimann et al. ) , japan (fukuda et al. ; nakanishi & imai ) , portugal (barbosa et al. a ; barbosa et al. b) , and australia (king et al. ; mcneil et al. ) . one paper was published by an international organisation (world health organisation ). care homes for older people were referred to in the papers by a range of terms such as nursing homes, residential aged care facilities and long term care facilities. job titles included, direct care workers (dcws), certified nursing assistants (cnas), and licensed practical nurses (lpns). almost half the papers ( ) had only fcws as the participants (barbosa et al., b; beck et al. ; berta et al. ; bethell et al. ; boerner et al. ; caspar et al. the majority (n= ) were empirical research , mostly cross-sectional survey studies (berridge et al. (berridge et al. , berta et al. ; bethell et al. fukuda et al. ) . of these, one was a quasi-randomised comparative trial (fukuda et al. ). five papers present evidence derived from qualitative approaches -interviews with individuals or group discussions (boerner et al. ; braedley et al. ; scottish care ), institutional ethnography (caspar et al. ). one systematic review (barbosa et al. a ), a narrative review (lane & mcgrady, ) and a research briefing containing a review of relevant literature (moss & meyer ) were also included. three papers were covid- specific guidance or good practice documents (british geriatrics society ; university college london ; world health organisation ). is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . / . . . doi: medrxiv preprint to recommend tools and processes to improve adaptive capacity and planning for longterm care facilities. mcneil et al. five papers reported evaluations of an educational intervention on a range of indicators of resilience and retention (table ). increased retention rates were observed at one and four months following attendance at a -minute educational programme addressing self-care skills and awareness of compassion fatigue (dreher et al. ) . . cc-by-nc-nd . international license it is made available under a perpetuity. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . / . . . doi: medrxiv preprint is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . / . . . doi: medrxiv preprint dreher et al. ( ) also measured 'burnout' using the maslach burnout inventory (mbi). they found that the non-parametric test (kruskal-wallis) showed a significant reduction in burnout score postintervention, however conducting a parametric test anova did not find a statistical significance in burnout scores in the same study. no statistically significant reduction score post-intervention was found by two other intervention studies (fukuda et al. ( ), ericson-lidman & ahlin ( . when a 'supportive component' was added to an educational intervention, researchers found a statistically significant reduction in the emotional exhaustion component of mbi, compared to those who received a purely educational intervention (barbosa et al. b) . qualitative analysis of perception and impact of the psychoeducational intervention on their work life showed that the experimental group experienced enhanced group cohesion, emotional management, and selfawareness (barbosa et al. b ). overall, the results of the systematic review and the five intervention studies were limited and inconclusive. of note was the marked heterogeneity in the outcome measures of resilience: different inventories or measurement tools were used across the five studies. multiple predictors and indicators of resilience and retention were found within the papers. the factors investigated and reported within each paper covered those that were (a) hypothesised and then investigated; (b) found to influence or impact on; or (c) raised in the discussion section as possibly or potentially associated with resilience or retention of fcws. these ranged from self-care behaviours of individual staff members (dreher et al. , university college london to, for example, the overall organisational environment and context within which these individual work (yeatts et al. ; king et al ; moss & meyer ; lane & mcgrady and university college london ). to a large extent, this multiplicity reflects the specific hypothesis/aims of the studies. the strength of association of these factors for improving resilience and retention cannot be determined sufficiently. for example, the studies that examined leadership as a factor in resilience or retention included measures of stress of conscience, wellbeing, job satisfaction, and rates of staff turnover. two studies with different participant groups -one with nursing home care workers and the other with nursing administrators -both reported a strong relationship between leadership and retention of staff (gaudenz et al. and berridge et al. ). care workers with higher overall intention to leave reported lower leadership ratings (gaudenz et al. ). berridge and colleagues ( ) , in their survey of nursing home administrators, reported greater leadership and staff empowerment levels were associated with high retention of nursing assistants. in one large cross-sectional study, job satisfaction was found to increase four times with each point increase in leadership rating on a -point likert-type scale (schwendimann et al. ) . positive leadership was also reported to contribute to a low stress of conscience i.e. nursing assistants were better able to provide care that corresponded to their own conscience when there was better leadership (wallin et al. ) . one study found that leadership styles had a negative effect on nursing assistants' wellbeing post-intervention and how this leadership was perceived by nursing assistants varied significantly over time (beck et al. ) . is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . analytical themes from the results of the review our thematic analysis provided further insight in relation to practice-based ways of supporting the resilience and of fcws in care homes for older people. five analytical themes were identified -culture of care; content of work; connectedness with colleagues; characteristics and competencies of care home leaders and caring during a crisis. table shows how each included paper contributed to the development of each theme. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . / . . . doi: medrxiv preprint this theme encompasses the culture of caregiving and the broader environment or climate within which fcws work. it highlights the importance of fcws being able to work in a climate that respects their role and the contribution they make to individual residents and to wider society. seven papers discuss the way in which being respected, feeling respected and valued and receiving recognition can have a positive impact on staff resilience and retention (yeatts et al. ; choi & johantgen et al. ; gaudenz et al. ; king et al. ; nakanishi & imai ; rajan & mckee and moss & meyer ) . a number of papers in this review draw a specific connection between a care home's culture of personcentred care (pcc) to resilience and retention. wallin et al. ( ) discuss the positive benefits to staff of being able to provide good pcc and others investigate the relationship between pcc training and delivery to stress, burnout and job satisfaction (barabosa et al. a; barabosa et al b). moss & meyer ( ) and boerner et al. ( ) suggest that, the way in which pcc is different from a task-orientated culture, offers 'a psychological defence mechanism against anxiety', giving have a 'protective effect' on fcws. berridge et al. ( ) suggests that the hours a fcw spends each day with residents is also important and the work of castle ( ) that of staff being able to consistently work with the same residents. these two associated factors are also contributing to the content of work theme as is the role 'job satisfaction' can play in resilience and retention. seven papers propose that job satisfaction is a key factor in resilience and retention. of these, five papers view it as an important factor in retaining staff (berta et al. ; choi & johantgen ; bethell et al ; king et al ; beck et al ) and one in fostering staff resilience (schwendimann et al. ) . the seventh paper investigated determinants of job satisfaction (wallin et al. ) and identified various aspects of work content and work climate/culture as being of importance, in addition to what they term 'organisational and environmental support'. content of work theme encompasses the factors reported in the evidence that are related to what fcws do in practice -that is their actual tasks, activities and jobs they undertake and as discussed above how satisfied staff are with this. the overall design of work content is highlighted as being associated with resilience and retention (yeatts et al ) . how tasks are allocated will determine how much time staff spend with which residents, reported as a positive factor in staff retention by two papers (castle and berridge et al. ). nakanishi & imai ( ) found that intention to leave was associated with the extent to which fcws had discretion in how they used their skills and braedley et al. ( ) identified that having autonomy of tasks was of importance. the degree of staff empowerment as an associated factor was reported in three papers (berridge et al. ; berridge et al. ; lane & mcgrady ) as was fcws being involved in care decisions (braedley et al. ) . a lack of variety of work content/tasks and work content resulting in skills being underused were found to affect retention negatively (nakanishi & imai and king et al ) . the extent and quality of a fcw's connection and relationships with colleagues are associated with resilience and retention. at a high level, connectedness with colleagues is more commonly referred to as peer support and team working. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . having good, positive one-to-one relationships with work colleagues (schwendimann et al. ; nakanishi & imai ; gaudenz et al ; king et al ; casper et al ) is viewed as being associated with resilience and retention. more specifically, three papers identify the absence of 'conflict' in these relationships as important (gaudenz et al ; king et al and schwendimann et al ) and four others the importance of a fcw's relationships with their immediate supervisor (bethell et al ; choi & johantgen ; berta et al and nakanishi & imai ) . (braedley et al ) were specified as contributing to 'good' team working. no other detailed information was reported to better define what particular aspects of team working are most associated with resilience and retention. three papers spoke of team working beyond staff groups as being of importance, indicating the value of wider multi-disciplinary or multi-sector teams (scottish care, ; university college london, and who, ). five studies reported on the relationship between leadership and resilience and retention. three studies, all with different participant groups, reported a strong relationship between leadership and retention of staff (gaudenz et al. : berridge et al. schwendimann et al. ) . positive leadership was also reported to contribute to a low stress of conscience i.e. nursing assistants were better able to provide care that corresponded to their own conscience when there was better leadership (wallin et al. ) . within the included papers there is also some indication that in addition to skill/competencies, management/leadership 'style' is also important (berridge et al. and beck et al. ) . other papers highlight desirable characteristics of leaders. these include for example being compassionate (university college london ); positive (wallin et is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . the need to ensure fcws are aware of where to access support and provision of dedicated grief and bereavement support are also highlighted as of importance to staff support during a crisis (university college london , who ) this review found that the evidence for best practice in supporting the resilience and retention specifically of fcws in care homes is extremely limited. the small number of intervention studies are inconclusive. multiple factors reported as being associated with how best to support fcws were identified. from this diffuse and dilute evidence base, our thematic synthesis distils important areas that warrant further exploration and research. the results of this review suggest that existing evidence provides insight into 'promising' avenues, but at present offers less in developing our understanding of how best to construct services and systems that can be implemented within care homes. the evidence base must move from its current state of implicitness to one of detailed explication. only then can it inform intervention development, implementation strategies and meaningful indicators of success. high quality, adequately powered and co-designed intervention studies are now required to determine which factors are of most importance, how they 'work' or 'don't work' alone or in combination, and can be enhanced for positive effect. we need to for example, understand better ( ) how the overall culture of care homes and an individual's work content relates to job satisfaction and intention to stay. ( ) the way in which fcws interact, communicate and work together is both positively and negatively associated with retention and resilience and ( ) the skills and approaches care home leaders have or need and the role of education and training. emerging as perhaps worthy of more intensive investigation are the potential of pcc as a protective mechanism for both resilience and retention and the more nebulous concepts of support and job satisfaction. this review purposefully examined only the evidence available for practice based resilience and retention support fcws for older people. as such it does not cover other staff that are critical to the delivery of high quality care and the resilience and retention of fcws -most importantly registered nurses. it has also excluded broader aspects of recruitment and retention such as pay, or demographic issues such as age and gender or geographical demographics that will affect the labour market. only studies published in english were included as time and budget constraints did not allow for translation of papers. resilience is a wide and multi-faceted field and we make no claim to have utilised it in any great detail within this paper. however, it is a term in common use and used in this review to convey and include burnout, mental wellbeing, mental health, psychological wellbeing as it relates to being employed. this rapid review is the first to our knowledge that focusses solely on fcws in care homes. it addresses not only an under-researched staff group and provides much needed targeted review of available evidence as to how best they can be supported. it incorporates what was known pre-covid and also what has been found to be of use during the pandemic for supporting resilience of fcws in care homes. although small and rapid the involvement of a specialist librarian and three independent reviewers are further key strengths of this work. this review sets out the evidence currently available for best practice in supporting a resilient workforce and retaining frontline care workers in care homes. the thematic synthesis has identified important areas that warrant further exploration and research within a very heterogeneous care service and workforce sector. therefore the development of evidence based, best practice cannot just focus on what can be done differently in terms of new interventions, training or systems; but critically must address how and where (in what context) it is done. the fundamentally human and interpersonal nature of the resilience and retention of fcws in care homes is highlighted by this review. this insight and perspective should inform future strategic and operational approaches to retain high quality, resilient frontline care home workers. . cc-by-nc-nd . international license it is made available under a perpetuity. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . https://doi.org/ . / . . . doi: medrxiv preprint scoping studies: towards a methodological framework workplace stress and resilience in the australian nursing workforce: a comprehensive integrative review supporting direct care workers in dementia care: effects of a psychoeducational intervention effects of person-centered care approaches to dementia care on staff applying a palliative care approach in residential care: effects on nurse assistants' work situation leadership, staff empowerment, and the retention of nursing assistants: findings from a survey of us nursing homes staff empowerment practices and cna retention: findings from a nationally representative nursing home culture change survey relationships between work outcomes, work attitudes and work environments of health support workers in ontario long-term care and home and community care settings supportive supervision and staff intent to turn over in long-term care homes burnout after patient death: challenges for direct care workers identifiying published studies identifying published studies of care home research: an international survey of researchers evolution and impact of covid- outbreaks in care homes: population analysis in care homes in one geographic region suck it up': long-term care workers' psychological health and safety covid- : managing the covid- pandemic in care homes for older people. good practice guide impact of viral epidemic outbreaks on mental health of healthcare workers: a rapid systematic review creating cultures of care: exploring the social organisation of care delivery in long-term care homes consistent assignment of nurse aides: association with turnover and absenteeism care workers in long-term care for older people: challenges of quantity and quality the importance of supervision in retention of cnas why nurses chose to remain in the workforce. portraits of resilience nurses' resilience and the emotional labour of nursing work: an integrative review of empirical literature attracting, recruiting and retaining nurses and care workers working in care homes: the need for a nuanced understanding informed by evidence and theory the covid- pandemic in uk care homes -revealing the cracks in the system improving retention among certified nursing assistants through compassion fatigue awareness and self-care skills education nursing home staff turnover and retention assessments of stress of conscience, perceptions of conscience, burnout, and social support before and after implementation of a participatory action-research-based intervention effectiveness of educational program using printed educational material on care burden distress among staff of residential aged care facilities without medical specialists and/or registered nurses: cluster quasi-randomization study factors associated with care workers' intention to leave employment in nursing homes: a secondary data analysis of the swiss nursing homes human resources project one in four social care staff leaving the profession every year resilience strategies to manage psychological distress among healthcare workers during the covid- pandemic: a narrative review work satisfaction and intention to leave among direct care workers in community and residential aged care in australia measures of emergency preparedness contributing to nursing home resilience scoping studies: advancing the methodology uncovering the devaluation of nursing home staff during covid- : are we fuelling the next health care crisis? caring for aged people: the influence of personal resilience and workplace climate on 'doing good' and 'feeling good' keeping the workforce fit for purpose the mental health impact of the covid- pandemic on healthcare workers, and interventions to help them: a rapid systematic review job role quality and intention to leave current facility and to leave profession of direct care workers in japanese residential facilities for elderly what does the social care workforce look like across the four countries? forthcoming) cov/gcu/ / -effective interventions to support the resilience and mental health of frontline health and social learning from the impacts of covid- on care homes: a pilot survey. ltccovid, international long-term care policy network stayers, leavers and switchers among certified nursing assistants in nursing homes: a longitudinal investigation of turnover intent, staff retention, and turnover factors associated with high job satisfaction among care workers in swiss nursing homes -a cross sectional survey study fragile foundations: exploring the mental health of the social care workforce and the people they support report : mental health, employment and the social care workforce methods for the thematic synthesis of qualitative research in systematic reviews prisma extension for scoping reviews (prisma-scr) guidance for managers and decision makers in supporting care home workers during covid- workplace stress and ethical challenges experienced by nursing staff in a nursing home job satisfaction and associated variables among nurse assistants working in residential care strengthening the health system response to covid- : preventing and managing the covid- pandemic across long-term care services in the who european region. technical working guidance # . copenhagen: who regional office for europe burnout among direct-care workers in nursing homes: influences of organisational, workplace, interpersonal and personal characteristics the perception of "training availability" among certified nurse aides: relationship to cna performance, turnover, attitudes, burnout, and empowerment key: cord- -cqxmpxyq authors: lee, shawna j.; ward, kaitlin p.; chang, olivia d.; downing, kasey m. title: parenting activities and the transition to home-based education during the covid- pandemic date: - - journal: child youth serv rev doi: . /j.childyouth. . sha: doc_id: cord_uid: cqxmpxyq this study reports on parent-child dynamics following covid- related school closures, based on cross-sectional analyses of a survey that utilized a convenience sampling approach. data were collected approximately five weeks after the world health organization declared that the coronavirus was a pandemic. participants (n = ) were adults recruited throughout the u.s. this study examines data from parents ( % mothers and % fathers) with at least one child - years of age. the majority were white ( %) and % had at least a bachelor’s degree. % of parents said they were educating their child at home due to covid- . most ( . %) reported use of online tools for at-home education, including educational apps, social media, and school-provided electronic resources. more than one-third ( . %) of parents said their child’s behavior had changed since the pandemic, including being sad, depressed, and lonely. most parents were spending more time involved in daily caregiving of their children since covid- . two out of every five parents met the phq- criteria for major depression or severe major depression ( . %) and the gad- criteria for moderate or severe anxiety ( . %). multivariate analyses indicated that, compared to non-depressed parents, parents who met criteria for probable major or severe depression (b = -. , % ci = [-. , -. ], p = . ) and parenting stress (b = -. , % ci = [-. , -. ], p < . ) were negatively associated with parents’ perceived preparation to educate at home. compared to parents with minimal or mild anxiety, parents with moderate or severe anxiety reported higher child anxiety scores (b = . , % ci = [. , . ], p = . ). parenting stress was also positively associated with higher child anxiety scores (b = . , % ci = [. , . ], p < . ). content analyses of open-ended questions indicated that school closures were a significant disruption, followed by lack of physical activity, and social isolation. overall, study results suggested that parents’ mental health may be an important factor linked to at-home education and child wellbeing during the pandemic. experienced declines in academic achievement, and many families relocated to other states, in part to obtain better educational opportunities for their children (peek & richardson, ) . during previous global health crises, such as severe acute respiratory syndrome (sars) and influenza a (h n ), research documented issues related to school closures such as conflicts between parental work responsibilities and child care needs, lack of effective communication between parents and schools, and a lack of inclusive procedures to provide students access to needed resources and services (boon et al., ; braunack-mayer et al., ; o'sullivan et al., ). past public health emergencies and natural disasters underscore the potential for a number of challenges for parents' ability to support their children's schooling during covid- . the widespread shift from in-person education to at-home education is unprecedented in recent american history. during covid- , school closures were estimated to have impacted approximately . million students in , public and private schools across the u.s. (education week, ) . worldwide, the united nations estimated that about million children were cut off from educational altogether, due to their inability to access remote learning (united nation's children's fund, ) . in addition, in the u.s., most after-school activities (e.g., school-based after school care, sports, clubs and other extracurricular activities) and specialized programs (e.g., services provided to children with developmental disabilities) were cancelled or significantly disrupted. homeschooling is the provision of educational activities in the home, usually by the child's parent. homeschooling is not new in the u.s., and reflects a small portion of education delivery for american children. prior to covid- , approximately . million u.s. children were homeschooled. homeschooling was on the rise, from . % of all u.s. students between the ages of and in , to . % of all u.s. students between the ages of and in (national center for education statistics, ) . homeschooling appears to be more common among religious parents, politically conservative parents, two-parent families, and rural families (lines, ; hartman, stotts, ottley, & miller, ) . homeschooling parents use a variety of tools, and one study indicated that % of parents use online education for homeschooling (davis, ) . there is little research on the outcomes of children who are homeschooled. one study suggested that children who are homeschooled score above or at grade level (lines, ) . in this study, we distinguish homeschooling, a deliberate decision by the parent to deliver an educational curriculum in a home-based setting, with the situation immediately following covid- , in which educational activities were delivered by or supervised by the parent at home because of the suspension of in-person educational activities and the closure of school buildings. with in-person educational activities disrupted, many schools turned to resources and strategies that are used by homeschooling parents. for example, schools used online resources to facilitate the delivery of educational activities at home. however, initially after covid- , most schools made the transition with little to no preparation, and solutions were spotty at best (nuñez, stuart-cassel, & temkin, ). many families were not able to adequately access online education due to numerous factors. one report documented that . million u.s. households do not have access to the internet or personal computers; thus, online education is not a readily available option for children in these households (institute for children, poverty, & homelessness, ) . not all households that lack internet access are those in rural areas. children who are homeless or socioeconomically disadvantaged may lack reliable access to the internet or electronic tools (computer and tablets), and thus may not be able to fully participate in online education. in new york city, one region hit particularly hard by covid- , as many as , students did not have internet-connected devices at home (institute for children, poverty, & homelessness, ) . to the best of our knowledge, to date there are no national estimates of how many parents were able to use online resources to provide at-home education for their children during the time period examined in the current study (april ). in addition to challenges related to accessing online educational resources, another challenge in the shift to at-home education is the considerable burden that is placed on parents. at a minimum, at-home education requires parental supervision at times when children would have otherwise been supervised by school personnel in school buildings. in many cases, at-home education necessitates greater involvement and support from parents to ensure that children understand and complete educational activities. this may be especially true for parents of young children and children with disabilities. parents in single-parent headed households, which comprise million american families with children under years old (u.s. department of labor, ), likely face even more difficult conditions as they struggle to balance work, child care and homeschooling during the pandemic, without the benefit of a second parent to "tag team" responsibilities. this raises the question of how parents, most of whom work in order to provide for their families, have adjusted to supervising at-home education. in addition to the challenges of balancing work responsibilities with at-home education and child care, most parents were not educators. lack of preparation and lack of skill set, as well as mental health concerns, worries, and parenting stress, are factors that may impede parents' ability to support their children's educational needs. during covid- , parents in particular were reporting significantly greater levels of stress when compared to adults without children (apa, ) and parents were reporting worsening mental health overall (patrick et al., ) . more than in parents reported that managing distance/online learning for their children and routine disruptions/adjusting to new routines were a significant source of stress (apa, ). a high level of food insecurity, loss of health insurance, and child care disruptions are common stressors that are impacting parental wellbeing during the pandemic (patrick et al., ) . there is relatively little data on the mental health of children during the pandemic (lee, ) . one study noted that parents were reporting worsening behavioral health for their children (patrick et al., ) . the lack of in-person school activities has disrupted children's access to caring adults such as teachers, coaches, and school social workers (sacks & jones, ) and has consequences for children's wellbeing. given the extent of these disruptions, it is reasonable to anticipate that millions of children will suffer elevated anxiety, worries, and trauma, depending on their ability to understand and comprehend the changes around them. the worsening of parental mental health (apa, ; patrick et al., ) -such as increased levels of depression and anxiety -are likely to have negative consequences for child wellbeing. this study captures a snapshot of parent-child activities and wellbeing in the first six weeks after the world health organization (who) announced that covid- was a pandemic (who, a; who, b) . we examine a variety of factors related to parent-child interactions during the pandemic. we describe parents' involvement with their children in daily caregiving activities, parents' daily schedule disruptions, and the types of resources parents were using to provide at-home education to their children. in multivariate models, we examine parenting risk factors associated with parents' perceived preparation to provide education athome. we also examine how parental wellbeing may influence parents' perception of their children's anxiety. we present qualitative analyses using thematic content coding to examine parents' responses to open-ended questions about common daily disruptions, the use of technology for children's education, parents' perceived changes in child behavior, and parents' perceptions of what children need during the pandemic. data for the current study were collected via an online survey that was administered through prolific, a company that conducts survey research. the survey was launched on april , , nearly five weeks after the who declared that the coronavirus was a pandemic, and four weeks after the white house issued social distancing guidelines to slow the spread of covid- . survey participants were recruited from geographic locations throughout the u.s.; however, it is important to note that the survey procedures utilized a convenience sampling approach and the sample is not nationally representative. participants who met study criteria were sent an email from prolific regarding their eligibility to participate in the survey. participants were provided with a brief description of the survey via the prolific website. in order to be eligible, individuals had to have u.s. nationality and be age or older. if they chose to participate in the survey, they were linked through the prolific platform to a qualtrics survey designed and managed by the research team. the research team set a predetermined target enrollment number, and when that number was reached, the survey automatically closed. we do not have information on individuals who might have viewed the study details on the prolific platform but decided not to participate, or on individuals who decided to participate after enrollment for the survey was already closed. it took less than hours for the survey to reach its target enrollment number. after reviewing the study information and providing informed consent, participants completed the online survey and received $ . in payment, which was administered directly to participants via prolific. the average completion time was minutes long (range: to minutes). to ensure the quality of the data, three attention checks were embedded throughout the survey. none of the participants failed more than one of the attention checks. all data provided to the research team were anonymous and contained no identifying information. this study was reviewed and deemed exempt from oversight by the university of michigan institutional review board. a total of adults residing in the u.s. completed the survey. the analytic sample for the current study included parents with at least one child living at home between the ages of - years (n = , or . % of the total sample), of which % were mothers and % were fathers. % of participants said they were currently educating their child at home due to covid- . as seen in table , the average age was years. approximately % of participants had at least a bachelor's degree and the majority of participants identified as white ( %). average household income in the prior year was between $ , and $ , . approximately % of participants indicated their employment status had changed due to covid- . parental perceived preparation to educate at home. three items assessed parents' perceived feelings of preparation to educate their children at home. items were only given to parents who indicated they were currently educating their child(ren) at home (n = ). items included, "i feel prepared to educate my child at home," "i do not have the resources i need to education my child at home" (reversed), and "i have felt overwhelmed by responsibilities to educate by child at home" (reversed), which were rated on a scale from (strongly disagree) to (strongly agree). the internal reliability of the scale was good (⍺ = . ). participants who did not wish to respond typed "no response" or left the text box blank. resources to educate at home were measured by asking parents to indicate how much they agreed with three statements: "i have support from my child's school to educate my child at home," "i have collaborated with other parents to provide resources for educating my child at home," and "i have used online or social media resources to educate my child at home" ( =strongly disagree, =strongly agree). these questions were only given to parents who indicated they were currently educating their child(ren) at home (n = ). parents' use of technology for child education and entertainment was assessed using an open-ended question, "what online resources have been the most helpful in educating your child at home?" in a text box below the question, participants provided words or phrases to respond. participants who did not wish to respond typed "no response" or left the text box blank. child anxiety. child anxiety was measured using the child anxiety subscale of the child behavior checklist/ - (achenbach, ) . participants were asked, "since approximately weeks ago, my child(ren):" and were presented with items that were rated on a -point scale ( =not true, =true, =often true). sample items include, "(he/she) worries," "is too fearful or anxious," and "is nervous, high strung, or tense." items were averaged to create a scale which demonstrated good internal consistency (⍺ = . ). parents were asked, "in your opinion, has your child(ren)'s behavior changed in the past weeks, during the coronavirus/ covid global health crisis?" those who responded "yes" (n = ; . %) to this question were subsequently asked to provide responses to an open-ended question that examined parents' perceived changes in their child's behavior, "how has your child(ren)'s behavior changed in the past weeks, since the coronavirus/covid- global health crisis?" in a text box below the question, participants provided words or phrases to respond. participants who did not wish to respond typed "no response" or left the text box blank. asked an open-ended question, "what do you think your child(ren) need during this global health crisis?" participants provided words or phrases to describe their response in a text box below the question. participants who did not wish to respond typed "no response" or left the text box blank. questionnaire (phq- ; kroenke et al., ) . the phq- is a valid diagnostic tool to measure severity of depressive disorders in the general population. participants were asked, "over the last weeks, how often have you been bothered by any of the following problems?" sample items include, "little interest or pleasure in doing things," "feeling down, depressed, or hopeless," and "feeling tired or having little energy." items were assessed on a -point response scale from = not at all, = several days, = more than half the days, and = nearly every day, resulting in a score range from - . a score of or under indicates the participant is not depressed; a score between - indicates the participant has probable major depression; and a score between - indicates the participant has probable severe major depression. we created a dichotomous variable to reflect whether the participant met the phq- criteria for major depression or severe major depression, in which scores of or less were coded " " and scores of or above were coded " " ( =not depressed, =probable major depression or severe major depression). parental anxiety. anxiety was measured using the generalized anxiety disorder, item scale (gad- ; spitzer, kroenke, williams, & lowe, ) . the gad- is a widely used and well validated diagnostic tool to measure anxiety symptoms in the general population. participants were asked, "over the last weeks, how often have you been bothered by the following problems?" sample items include, "feeling nervous, anxious, or on-edge," "not being able to stop or control worrying," and "trouble relaxing. items were assessed on a -point response scale from = not at all, = several days, = more than half the days, and = nearly every day, resulting in a score range from - . a score of or under indicates the participant has minimal anxiety; a score between - indicates the participant has probable mild anxiety; a score between - indicates the participant has probable moderate anxiety; and a score between - indicates the participant has probable severe anxiety. we created a dichotomous variable to reflect whether the participant met the gad- criteria for moderate or severe anxiety, in which scores of or less were coded " " and scores of or above were coded " " ( =minimal or mild anxiety, =moderate or severe anxiety). parenting stress. parenting stress was measured by the four-item aggravation in parenting scale ( that was utilized in the fragile families and child wellbeing study (ffcws). this measure has been widely used as a benchmark measure of child and family wellbeing (ehrle & moore, ) including in the child development supplement of the panel study of income dynamics (hofferth, davis-kean, davis, & finkelstein, ) . parents were asked whether they: ) felt that their child(ren) are harder to care for than most children, ) felt that there are things that their child(ren) do that bother them a lot, ) find themselves giving up more of their lives to meet their children's needs than they ever expected, and ) felt angry with their child(ren) on a scale from (never true) to (always true). the internal consistency of the scale in our sample was good (⍺ = . ). . total household income in the last year before taxes was treated as a continuous variable: =$ - k, =$ - k, =$ - k, =$ - k, =$ - k, =$ - k, =$ k or more. parent age was continuous and measured in years. the number of days spent social distancing and number of days spent in "lockdown" were continuous. we measured these factors to control for social isolation that may impact both the independent and dependent variables in the study models. a dichotomous variable indicated whether participants had experienced an employment change due to covid- : "has your employment status changed (e.g., laid off, furloughed) because of the coronavirus/covid- global health crisis?" ( =no, =yes). our analyses included quantitative analysis of close-ended questions and qualitative analysis (content coding) of open-ended questions. for quantitative analyses, data cleaning and descriptive analyses were run in stata version . . all regression analyses were run in mplus version (muthén & muthén, using the maximum likelihood estimator. for descriptives of parental involvement in child caregiving activities and daily schedule disruptions, parents who answered "na/i don't engage in this behavior" were coded as missing so that we could examine the percentage of parents who engaged in these behaviors more often than they normally do. for parental at-home education resources, rated from to , we calculated the percentage of parents who indicated they "agreed" or "strongly agreed" (i.e., rated a or ). missing data on our key independent variables of interest-including depression, anxiety, and parenting stress-were < %. regarding our key dependent variables, because the home preparation items were only presented to parents who were educating their children from home (n = ), the home preparation had . % missing data (notably, for the parents who were given this question, there were no missing data). child anxiety did not have any missing data. to handle missing data, analyses were conducted using full-information maximum likelihood estimation (fiml), which uses all available data. to examine whether our independent variables were associated with missingness on the home preparation scale, we ran a logistic regression analysis where all of our independent variables predicted whether participants were missing data ( =not missing, =missing) on the home preparation scale. the only variable that predicted missingness on the home preparation scale was parental age (odds ratio: . , se = . , p < . ). compare responses, thus establishing inter-rater reliability. overall, inter-rater reliability was good, and ranged from % to %. descriptive results. descriptive statistics of participant characteristics can be found in table . notably, . % of the parents in this sample met the phq- cutoff score for major depression, and . % met the gad- cutoff score for moderate or severe anxiety. more than one-third ( . %) of parents said their child's behavior had changed since the pandemic. descriptive results for changes in parental involvement in caregiving after covid- , daily schedule disruptions, and resources to educate at home are presented in table . in terms of parental involvement, parents said that they were engaging in most caregiving activities more often since covid- , specifically parents were playing games with child(ren) more often ( . %), watching tv or other media with child(ren) more often ( . %); and playing with toys with child(ren) more often ( . %). regarding daily schedule disruptions, . % of parents indicated public schools were closed and over half of parents who typically utilize free/reduced meal services indicated they were unable to receive free or reduced cost breakfast or lunch. the questions related to parental at-home education resources were asked of the % of participants who said they were educating their child at home. the majority of these parents endorsed that they were using online or social media resources to educate their child(ren) at home ( . %) and agreed they had support from their child(ren)'s school to educate their child(ren) at home ( . %). however, only . % had collaborated with other parents to provide resources to educate their child(ren) at home. multivariate results (table ) . compared to non-depressed parents, parents who met the phq- criteria for probable major depression or major severe depression reported that they were less prepared to provide at-home education their child(ren) (b = -. , % ci = [-. , -. ], p = . ). in other words, compared to being a non-depressed parent, being a parent who met criteria for major depression was associated with a . standard deviation decrease in at-home education preparation score. parents with mild or minimal anxiety did not differ from parents with moderate or severe anxiety in their preparation to conduct at-home education for their child(ren) (b = . , % ci = [-. , . ], p = . ). parenting stress was negatively associated with parents' at-home education preparation (b = -. , % ci = [-. , -. ], p < . )-in other words, a one standard deviation increase in parenting stress score was associated with a . standard deviation decrease in the at-home education preparation score. in addition to these parenting risk factors, the results indicated that parents' report of an employment change (i.e., job loss) in the past weeks was not associated with parents' perceived preparation to provide at-home education in any of the models. in fact, it seems that parental mental health factors were the only statistically significant predictor of parents' perceived preparation to provide at-home education to their children following covid- . as a robustness check, we ran these models again, but only among parents who stated they were currently homeschooling their children (n = ). standardized coefficients and p-values were all unchanged. in analyses examining the predictors of child anxiety scores following covid- , nondepressed parents did not differ from parents with major depression in reporting child anxiety about other disruptions to your child's schedule because of the coronavirus/ covid- global health crisis"; ) "what online resources have been the most helpful in educating your child at home?"; ) "how has your child(ren)'s behavior changed in the past weeks, since the coronavirus/covid- global health crisis?"; and ) "what do you think your child(ren) need during this global health crisis?" are presented in tables , with regard to daily schedule disruptions due to covid- , school and/or daycare closure and lack of physical activity emerged as the most consistent disruptions reported by parents ( . %). this is consistent with the close-ended questions which showed that the majority of parents reported school closures. another prominent disruption that parents noted was social isolation from generalized others and relatives ( . % and . %, respectively). additionally, . % of parents reported a disruption in their child's basic routine (e.g., changes to eating and sleeping patterns). although reported relatively infrequently, it is worth noting that . % of children experienced a schedule disruption due to an inability to obtain their usual special education resources, and . % of parents reported canceled doctor appointments as an important daily schedule disruption to their child. with regard to the use of technology for child education during covid- , we asked parents to tell us about the online tools that they were using to support at-home educational activities. programs such as abc mouse and khan academy ranked as the most commonly reported tools parents were using to support at-home education. approximately . % of participants to this question indicated some form of online educational tool. furthermore, schoolbased technological resources were common, and . % of participants generated a tool that was school-based. school-based tools were provided by the school, and were differentiated from standalone online tools such as abc mouse and khan academy (prior category) that were used to supplement classroom based activities but are not generated by the school setting. the school based programs included seesaw and google classroom, and school-based websites. about . % of parents reported using social media (e.g., youtube, facebook mom groups) to supplement their child's at-home education. only about . % of parents reported utilizing live remote technological resources (e.g., zoom, online meetings) to educate their children. about . % of parents reported lack of use of online resources to educate their child at home or they included resources that the researchers determined were outside of other coding categories, such as amazon.com. with regard to parents' perceived changes in child behavior during covid- , increased externalizing problems was the most common behavior change reported by parents ( . %). following externalizing problems, parents reported increased internalizing problems, namely, anxious and depressive symptoms ( . % and . %, respectively). additionally, . % of parents reported their child becoming bored during covid- . interestingly, although reported relatively infrequently, . % of parents reported observing a positive change in their child's behavior (e.g., expressing gratitude, feeling more relaxed) during the pandemic. [ insert table here] in the context of the covid- pandemic, we asked parents to tell us what they think their children need. the majority of parents ( . %) reported that during the pandemic children needed general emotional support, such as love, care, and attention. socialization ( . %), entertainment ( . %), and physical activity ( . %), were indicated as important needs of children by participants. approximately . % reported that during the covid- global health crisis, students needed access to education, including going back to school and having access to better educational resources at home. . % emphasized the need for children to feel safe and protected. furthermore, . % of parents that responded reported that their children needed access to basic needs, such as toilet paper, food, and housing. only about . % reported that they felt that their children needed guidance and information about covid- during the pandemic. parental stability/security referenced the specific needs of children from their parents, and were differentiated from general emotional needs. about . % of parents specifically indicated that children needed support from their parents (e.g., security from parents, even-tempered parenting). finally, a small portion ( . %) indicated that children needed to not be told about covid- (e.g., to avoid scaring children). this study provides a snapshot in time of how families with young children were adapting to the covid- in the early days of the pandemic (april ). the results suggest that parents were engaging in higher levels of nearly all child caregiving activities following covid- , such as playing more often, reading more often, and watching tv more often with their children. given the ramifications of social distancing measures and school closures due to covid- , it is perhaps not surprising that parents were more involved in everyday caregiving activities during this time. notably, . % of parents said they were hugging and showing physical affection toward their child more often following covid- . the increase in everyday caregiving activities occurs in the context of numerous stressors. for example, in parents reported an employment change related to covid- . over half of the parents who said they received free and reduced cost school meals indicated that lack of access to this resource was a disruption to their daily life. this study documents very high levels of parental depression, parental anxiety, and parenting stress (apa, ; patrick et al., ) . two out of every five parents ( . %) met the phq- criteria for probable major depression or severe major depression. similarly, . % met the gad- criteria for moderate or severe anxiety. though the rates of anxiety and depression among this sample of parents of young children were very high, they were consistent with the census bureau's household pulse survey. the nationally representative household pulse survey indicated that during april -may , about % of american adults had symptoms of anxiety disorder; . % had symptoms of depressive disorder; and about % had symptoms of anxiety or depressive disorder (cdc, ; u.s. census bureau, ). notably, the rates in the current study as well as those reported by the cdc are more than double those shown prior to covid- . during january to june , . % of adults had symptoms of anxiety disorder; . % had symptoms of depressive disorder; and . % had symptoms of anxiety disorder or depressive disorder (centers for disease control and prevention [cdc], ; fowers & wan, ). the high rates of parental mental health problems are also supported by recent research showing that parents are experiencing more stress and declines in mental health during the pandemic (apa, ; patrick et al., ) . there is reason to be concerned about the mental health of american parents (brooks et al., ; panchal et al., ) , with the results of this study suggesting an alarmingly high rate of anxiety and depression among parents. at the point this survey was administered, in mid-april , % of parents reported that public schools were closed, and a majority of parents ( %) were educating their child at home. the apparent disconnect between the report of school closures ( %) and parents saying they were educating their children at home ( %) can be explained by several factors. some parents may have been relying on the child's other parent or another caregiver to provide athome education; thus, they themselves were not providing the education, and responded "no" to this question. in addition, some parents may not have been able to provide at-home education to their children, due to work and other responsibilities. another potential explanation is that, although most parents ( . %) felt supported by their child's school to provide at-home education, those that did not feel supported or well prepared may have been less likely to engage in at-home education with their child. nonetheless, the gap between school closures and parents' report of at-home education is notable, and may be an area for concern as likelihood of continuing school closures or partial at-home education seems likely to continue for the - school year. further research is needed to understand how schools can support parents to deliver or support at-home education. multivariate analysis indicated that parental depression and parenting stress were significantly negatively associated with parents' perceived preparation to provide at-home education. it may be that the stresses experienced during the pandemic interfered with some parents' ability to educate their children at home. because our data are cross-sectional, it is also important to note the possibility that parents who felt more prepared to provide at-home education may have had a better mental health in the wake of school closures. in other words, we cannot determine the direction of the association between parents' mental health and at-home education. over one-third of the parents in this study said that their children were experiencing behavior changes since the pandemic. in content coding of open-ended questions, parents reported that their children were lonely, sad, and afraid. multivariate analysis indicated that parental mental health -specifically, parental anxiety and parenting stress -were associated with higher levels of child anxiety. parental employment changes were also linked to higher levels of child anxiety. to date, there is little empirical data on how children are faring during covid- . these results may suggest that, like their parents, children are suffering from anxiety that is associated with the disruptions to life from the pandemic. however, it is important to note that we do not have a baseline measure of child anxiety, and thus cannot infer that child anxiety levels have increased because of covid- . future longitudinal research is needed to document whether children's anxiety increased as a result of the pandemic. given that, prior to covid- , homeschooling was relatively rare, there is little data on how socioeconomically disadvantaged children, children without access to the internet, abused and neglected children, or children with learning disabilities or other developmental delays may fare during a widespread national shift to at-home education and/or parents supplementing online education. a limitation of the current study is that it does not encompass the challenges and experiences of marginalized children. children who faced disadvantages prior to covid- are going to be disproportionately impacted by lack of access to education and schooling (united nations children's fund, ). one vulnerable group is children with physical and learning disabilities. over seven million children with special needs, including those with autism spectrum disorder, thrive on routines and tend to also be reliant on in-school therapists and other services for individualized education programs (national center for education statistics, ). disruptions to routines, as well as lack of access to school-provided therapists and educational activities, may result in frustration and acting out behaviors (lee, ) . in anticipation of the possibility of additional in-person education closures, it is critical to address solutions to provide services to children with special needs. this may include telehealth-based interventions or other strategies (frederick, raabe, rogers, & pizzica, ; hinton, sheffield, sanders, & sofronoff, ) . research on the effects of the covid- disease demonstrate that the impacts of covid- have disproportionately impacted communities of color, socioeconomically disadvantaged individuals, as well as those with underlying health conditions and others who faced health inequalities before covid- . it is clear that the impacts of covid- are exacerbated by underlying socioeconomic and racial inequalities in the u.s. (ebor, loeb, & trejo, ; fortuna, tolou-shams, robles-ramamurthy, & porche, ) . children in socioeconomically disadvantaged contexts are also likely to be disproportionately impacted by lack of access to in-person education, and special attention should be given to programs to support their educational and mental health needs. in addition, at least . million american children are homeless (national center for homeless education, ) and homelessness is associated with lower educational outcomes for children (manfra, ) . there are , child victims of maltreatment who are in foster care in the u.s. (u.s. department of health and human services, ), and research shows children in foster care have poorer educational outcomes when compared to other children (morton, ; zetlin, weinberg, & kimm, ) . abused and neglected children are particularly vulnerable, given that they have already been traumatized by maltreatment. lack of access to caring adults such as school personnel, who can check on their welfare and provide support, as well as lack of access to much-needed resources, such as school meals, are especially problematic for these youth (herd et al., ) . further research is needed to better understand the experiences of at-home education and online education among parents and children who are homeless, in foster care, or who face other barriers to equal educational access (herd et al., ) . most schools do not offer mental health treatment services, and rely on teachers and nonclinical staff to support children's mental health (fulks & stratford, ) . trauma-based interventions to help children cope with the aftereffects of covid- may be especially effective when students return to in-person school activities. trauma-based care in schools have been shown to be effective to support students' wellbeing. the best evidence for whole-school or classroom approaches delivered by teachers or non-clinical school staff. one promising approach is training school staff on the use of trauma-informed approaches that are implemented in a way that is specific to the unique needs of marginalized youth (stratford et al., ) . another promising model to support children during the closure of in-person education is the youthconnect program model, which is a partnership of youth-serving organizations that supported students during the pandemic (sacks & jones, ) . community-based organizations may be able to provide children with meaningful connections to caring adults during a time of crisis. furthermore, linkages with community-based organizations may help parents and youth connect to resources to address issues such as food insecurity and mental health needs. this study speaks to the experiences of mostly white ( %), middle-income parents. minority parents were underrepresented in the sample. the data were collected using a convenience sampling approach, thus, the study results are not nationally representative and are not generalizable to all parents in the u.s. all study analyses reported herein are cross-sectional in nature. we cannot infer causality in the results, nor can we conclusively determine whether the patterns of associations documented in this study are the result of covid- . for example, we do not have baseline measures of child anxiety; thus, it is not possible to determine whether the child anxiety levels found in this study reflect an increase in child anxiety due to the pandemic. all measures in this study were reported by parents; thus, all the study results are parents' perceptions. we do not have data from third parties to verify or validate study results. all of the study results should be interpreted with these caveats in mind. the current study provides a one-time snapshot of parent and child wellbeing during the covid- pandemic, in particular, some of the dynamics as families adjusted to in-person education closures and shifted to at-home educational options. parents were engaged in more everyday activities with their child and most parents were hugging and showing physical affection more often, even while in parents were affected by changes to employment. parents reported high levels of daily schedule disruptions, as well as stressors such as lack of access to free and reduced price school meals. high levels of parental depression and parenting stress have implications for parents' perceived ability to provide at-home education. as the pandemic continues into the - school year, parents and children are clearly in need of more mental health intervention to reduce mental health problems, as well as assistance in carrying out at-home educational activities. innovative solutions that utilize telehealth as well as partnerships with community-based organizations may help to meet these challenges. used online or social media resources . support from child(ren)'s school . collaborated with other parents . note: n reflects the total number of individuals who responded to the question. only parents who were currently educating their child at home (n = ) were asked the "resources to educate at home" items. individuals who answered "not applicable" were not included in percentage calculation. phq- criteria for probable major depression or severe major depression). parental anxiety is coded as ( =minimal or mild anxiety, =meets gad- criteria for probable moderate or severe anxiety). parenting stress is a continuous scale that ranged from - . †p < . , *p < . , **p < . , ***p < . manual for the child behavior checklist / stress in america : stress in the time of covid- school disaster planning for children with disabilities: a critical review of the literature understanding the school community's response to school closures during the h n influenza pandemic the psychological impact of quarantine and how to reduce it: rapid review of the evidence mental health: household pulse survey the fragile families and child wellbeing study survey of new parents: fathers' three-year follow-up survey public use version evolution of homeschooling. distance learning social workers must address intersecting vulnerabilities among noninstitutionalized, black, latinx, and older adults of color during the covid- pandemic map: coronavirus and school closures nsaf benchmarking measures of child and family well-being (assessing the new federalism inequity and the disproportionate impact of covid- on communities of color in the united states: the need for a trauma-informed social justice response a third of americans now show signs of clinical anxiety or depression, census bureau finds amid coronavirus pandemic. the washington post a model of distance special education support services amidst covid- covid- recovery presents an opportunity to fill critical gaps in knowledge about equipping schools to address trauma school-community partnerships in rural settings: facilitating positive outcomes for young children who experience maltreatment research brief: mitigating the risk for child maltreatment research-to-policy-collaboration a randomized controlled trial of a telehealth parenting intervention: a mixed-disability trial the child development supplement to the panel study of income dynamics: user guide a staggering toll: million have filed for unemployment things to know about homeless students amid the covid- crisis the phq- as a measure of current depression in the general population mental health effects of school closures during covid- . the lancet child & adolescent health, homeschooling (eric document reproduction service no. ed ) or: eric clearinghouse on educational management impact of homelessness on school readiness skills and early academic achievement: a systematic review of the literature barriers to academic achievement for foster youth: the story behind the statistics mplus user's guide school choice in the united states students with disabilities federal data summary school years - through - . browns summit, nc: national center for homeless education as covid- spreads, most states have laws that address how schools should respond to pandemics if schools are closed, who will watch our kids? family caregiving and other sources of role conflict among nurses during large-scale outbreaks the implications of covid- for mental health and substance use well-being of parents and children during the covid- pandemic: a national survey in their own words: displaced children's educational recovery needs after hurricane katrina nonprofit organizations and partnerships can support students during the covid- crisis katrina's children: revealing the broken promise of education a brief measure for measuring generalized anxiety disorder a scoping review of school-based efforts to support students who have experienced trauma. school mental health. advance online publication the president's coronavirus guidelines for america: days to slow the spread who director-general's opening remarks at the media briefing on covid- - who timeline -covid- covid- : are children able to continue learning during school closures? a global analysis of the potential reach of remote learning policies using data from countries. unicef: new york covid- response: considerations for children and adults with disabilities. unicef: new york united nations educational, scientific and cultural organization selected social housing characteristics in the united states measuring household experiences during the coronavirus (covid- ) pandemic the national evaluation of the welfare-to-work strategies news release: unemployment insurance weekly claims ted: the economics daily, employment in families with children in department of health & human services, administration for children and families improving education outcomes for children in foster care: intervention by an education liaison parents were hugging/ showing affection to child more often during pandemic note: n reflects the total number of individuals who responded to the question. individuals who answered "not applicable" or left the response box blank (n = ) were not included in percentage calculation. table . type of technology frequency (%) online educational tools . % "abc mouse", "study island", "khan academy", "wikipedia", "pbs", "prodigy", "epic"school-based . % "the school has provided a website for lessons and homework", "seesaw", "google classroom", "resources provided by the course coordinator", "the schools app", "teacher has mailed and emailed assignments i can work with my child"social media . % "youtube", "the mom groups on facebook", "pinterest" miscellaneous . % "i don't use online resources", "amazon" live remote . % "online meetings with teacher", "zoom meetings with tutors"paper-based . % "printing out worksheets from k learning website" note: n reflects the total number of individuals who responded to the question. individuals who answered "not applicable" or left the response box blank (n = ) were not included in percentage calculation. . % "worries more", "anxious", "afraid and hesitant to leave the house", "stressed"depressive symptoms (internalizing problems) . % "less energetic", "sad", "depressed", "sleeps a lot", "less desire to interact with peers", "lonely" , "cries a lot" bored . % "bored", "they aren't as motivated as usual", "often complain of being bored"positive . % "more thankful and helpful", "hasn't been as cranky", "more excited to spend time with the family", "more relaxed"miscellaneous . % "i don't use online resources", "amazon" note: n reflects the total number of individuals who responded to the question. of the total sample, parents indicated that they had observed change in their child's behavior and were prompted to answer this question. individuals who answered "not applicable" or left the response box blank (n = ) were not included in percentage calculation. table . type of need frequency (%) general emotional needs . % "love", "support", "attention" socialization . % "friends to communicate with", "socialize with kids their own age", "a way to interact with another child" entertainment . % "convenient access to pastime that isn't on a screen", "new and interesting ways of being entertained", "things to keep them busy" physical activity . % "play outside with other kids", "better kid workout videos", "better weather so we can be outside", "more exercise"school . % "to go back to school", "more formal education", "better schooling resources", "more educational engagement"feel safe/protected . % "reassured that they will be safe", "clarity and plan from trustworthy adults", "understand as long as they do the right thing they will be ok" basic needs . % "food and toiletries", "cleaning supplies", "housing", "money"share covid- guidance . % "lots of safety and precautions", "take responsibility for themselves", "someone to clarify the situation", "guidance"parental stability/security . % "good parenting", "her parents to be eventempered", "for us to be as calm and rational as possible", "security from parents" miscellaneous . % "alone time", "wake up from day dreaming and the usual grind"withhold covid- guidance . % "they need to not be told about this because it would terrify them unnecessarily", "they need the restrictions to be lifted… the flu kills more"note: n reflects the total number of individuals who responded to the question. individuals who answered "not applicable" or left the response box blank (n = ) were not included in percentage calculation. shawna j. lee conceptualized the study, collected the data, conducted data analysis, reviewed data analysis, and prepared the first draft of the manuscript. kaitlin p. ward contributed to the selection of study variables, conducted data analysis, created tables, and contributed to writing the study manuscript. olivia d. chang conducted qualitative content coding and contributed to writing the study manuscript. kasey m. downing conducted qualitative content coding and contributed to writing the study manuscript. the authors confirm that they have no conflicts of interest to report related to this study. key: cord- -kzt vmf authors: huang, x.; li, z.; lu, j.; wang, s.; wei, h.; chen, b. title: time-series clustering for home dwell time during covid- : what can we learn from it? date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: kzt vmf in this study, we investigate the potential driving factors that lead to the disparity in the time-series of home dwell time, aiming to provide fundamental knowledge that benefits policy-making for better mitigation strategies of future pandemics. taking metro atlanta as a study case, we perform a trend-driven analysis by conducting kmeans time-series clustering using fine-grained home dwell time records from safegraph, and further assess the statistical significance of sixteen demographic/socioeconomic variables from five major categories. we find that demographic/socioeconomic variables can explain the disparity in home dwell time in response to the stay-at-home order, which potentially leads to disparate exposures to the risk from the covid- . the results further suggest that socially disadvantaged groups are less likely to follow the order to stay at home, pointing out the extensive gaps in the effectiveness of social distancing measures exist between socially disadvantaged groups and others. our study reveals that the long-standing inequity issue in the u.s. stands in the way of the effective implementation of social distancing measures. policymakers need to carefully evaluate the inevitable trade-off among different groups, making sure the outcomes of their policies reflect interests of the socially disadvantaged groups. we perform a trend-driven analysis by conducting kmeans time-series clustering using finegrained home dwell time records from safegraph. • we find that demographic/socioeconomic variables can explain the disparity in home dwell time in response to the stay-at-home order. • the results suggest that socially disadvantaged groups are less likely to follow the order to stay at home, potentially leading to more exposures to the covid- . • policymakers need to make sure the outcomes of their policies reflect the interests of the disadvantaged groups. of their unique characteristics, all selected mobility datasets suggest a statistically significant positive correlation between mobility reduction and income at the u.s. county scale. despite the above efforts, the soundness of correlating disparity in response to demographic/socioeconomic variables is hampered by the coarse geographical units, as mitigation policies may vary in different countries, states, and even counties; therefore, the documented disparity in response may result from the discrepancy in mitigation policies, not from the varying demographic/socioeconomic indicators. thus, the examination of fine-grained mobility records (e.g., at the census tract or block group level) are in great need. in addition, most existing studies utilize indices summarized during a specific period to quantify the mobility-related response, neglecting the dynamic perspectives revealed from time-series data. in comparison, time-series trend-based analytics may provide valuable insights in distinguishing different dynamic patterns of mobility records, thus warranting further investigation. the objective of this study is to explore the capability of time-series clustering in categorizing fine-grained mobility records during the covid- pandemic, and further investigate what demographic/socioeconomic variables differ among the categories with statistical significance. taking advantage of the home dwell time at census block group (cbg) level from the safegraph [ ] , and using the atlanta-sandy springs-roswell metropolitan statistical area (msa) (hereafter referred to as metro atlanta) as a study case, this study investigates the potential driving factors that lead to the disparity in the time-series of home dwell time during the covid- pandemic, providing fundamental knowledge that benefits policy-making for better mitigation measures of future pandemics. the contributions of this work are summarized as follows: • we perform a trend-driven analysis by conducting kmeans time-series clustering using finegrained home dwell time records from safegraph. we assess the statistical significance of sixteen selected demographic/socioeconomic variables among categorized groups derived from the time-series clustering. those variables cover economic status, races and ethnicities, age and household type, education, and transportation. we discuss the potential demographic/socioeconomic variables that lead to the disparity in home dwell time during the covid- pandemic, how they reflect the long-standing health inequity in the u.s., and what can be suggested for better policy-making. the remainder of the paper is organized as follows. section introduces the datasets used in this study. section presents the methodological approaches we applied. section describes the contexts of the study case (metro atlanta). section presents the results of time-series clustering, the results of the analysis of variance, and the discussion. section concludes our article. the home dwell time records are derived from safegraph (https://www.safegraph.com/), a data company that aggregates anonymized location data from numerous applications in order to provide insights about physical places. safegraph aggregates data using a panel of gps points from anonymous mobile devices and determines the home location as the common nighttime location of each mobile device over a six-week period to a geohash- granularity (∼ m × ∼ m) [ ] . to enhance privacy, safegraph excludes cbg information if fewer than five devices visited an establishment in a month from a given cbg. the data records used in this study are the median home dwell time in minutes for all devices with a certain cbg on a daily basis. for each device, the observed minutes at home across the day are summed, and the median value for all devices with a certain cbg is further calculated [ ] . the raw safegraph dataset we used for the year spans from january , , to august , ( days) with daily home dwell records (in mins) for a total of , cbgs. heat map of home dwell time for these cbgs are is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . presented in figure . the impact of covid- can be observed, as home dwell time notably increased after the declaration of national emergency on march , [ ] (figure ), despite the disparity in the increasing intensity. after the lifting of strict social distancing measures in early may, however, home dwell time starts to decrease and returns to the pre-pandemic level ( figure ). the increased variation of home dwell time after the national emergency declaration indicates that cbgs have different responses to the pandemic and the government order. despite the large number of cbgs, not all cbgs contain sufficient records to derive stable time-series that can be used for clustering. the details of the preprocessing steps are presented in section . . demographic and socioeconomic variables in this study are derived from the american community survey (acs), collected by the u.s. census bureau. acs is an ongoing nationwide survey that investigates a variety of aggregated information about u.s. residents at different geographic levels every year [ ] . acs randomly selects monthly samples based on housing unit addresses and publishes annual estimates datasets (i.e., -month samples). in addition to the year datasets, acs also releases -year estimates (i.e., -month samples) and -year estimates (i.e., -month samples). compared to the -year and -year datasets, -year estimates cover the most areas, have the largest sample size, and contain the most reliable information [ ] . in this study, we use the latest -year acs data, i.e., the - acs -year estimates, obtained from social explorer (https://www.socialexplorer.com/). we recode the variables from acs data as five major categories: ) economic status; ) races and ethnicities; ) gender, age and household type; ) education; ) transportation. previous empirical studies suggested that these variables could be associated with the pattern of daily travels and participation of out-of-home activities [ ] [ ] [ ] [ ] . the detailed information of the variables within the five categories is presented in table . in addition, cbg boundaries are derived from tiger/line shapefiles by u.s. census bureau (https://www.census.gov/cgi-bin/geo/shapefiles/index.php). economic status pct_low_income percent of household income less than $ , . cc-by-nc . international license it is made available under a perpetuity. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint several preprocessing steps are applied to ensure that cbgs within the study area contain sufficient and valid records to derive stable time-series that can be used for clustering. we first select cbgs that fall within the study area, i.e., metro-atlanta (more details of the metro-atlanta can be found in section ), which results in a total of , cbgs. as safegraph uses digital devices to measure home dwell time, the number of available devices in each cbg greatly determines the representativeness and the stability of the time-series. we plot the spatial distribution of median daily device count within the metro atlanta area and observe that cbgs dominated by non-residential zones tend to have less daily device count (figure a) , presumably due to the low number of home locations identified via safegraph's algorithm (see section . ). we keep cbgs with more than days (out of days) of home dwell time records to ensure reliable time-series can be generated. to fill the missing data, we adopt the approach from huang et al. [ ] , where missing data are filled via a simple linear interpolation by assuming that home dwell time changes linearly between two consecutive available records. our preliminary investigation suggests that stable time-series of daily home dwell time can be achieved when daily device count reaches . thus, we calculate the median of daily device count for each cbg during the -day period and select cbgs with the median equal or larger than . we also observe that some cbgs present abnormal home dwell patterns with consecutive values for a certain period of time. to avoid the potential problems caused by these cbgs on the performance of the clustering algorithm, we remove cbgs with values that span more than three consecutive days. a total of , cbgs remain after the aforementioned preprocessing steps, and their representativeness is presented in figure b . the representativeness is defined as the ratio between the median daily device count and the population from the acs - estimates. the representativeness for most cbgs ranges from % - % (figure b ), which is considerably higher than twitter [ ] , a commonly used open-sourced platform to derive mobility-related statistics. . cc-by-nc . international license it is made available under a perpetuity. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . time-series clustering is the process of the partitioning a time-series dataset into a certain number of clusters, according to a certain similarity criterion. in this study, we aim to cluster the time-series of home dwell time in the cbgs within the study area. we adopt the design of kmeans [ ] , an unsupervised partition-based clustering algorithm in which observations are categorized into the cluster with the nearest mean. the choice of similarity measurement in kmeans is crucial to the detection of clusters [ ] . considering that the time-series of home dwell time for the majority of the cbgs present a similar shape but vary in intensity (figure ), we decide to calculate the euclidean distance between two time-series. given a dataset on time series = { , , … , }, we aim to partition into a total of clusters, i.e., = { , , … , } by minimizing the objective function j, given as: where denotes the time-series in category , and ‖•‖ denotes the similarity measurement that measures the distance between and the cluster center of . let and each be adimensional vector, where equals the length of the time series ( in this case). as euclidean distance is selected as similarity measurement in this study, ‖ − ‖ can be rewritten as: further, kmeans utilizes an iterative procedure with the following steps to derive the final category for each time-series candidate: . initialize cluster centroids , , … , arbitrarily. . assign each time-series to its correct cluster , according to ‖ − ‖. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . the kmeans time-series clustering requires pre-specification of the total number of clusters (i.e., ), which inevitably introduces the subjective nature of deciding the constitution of reasonable clusters [ ] . through the investigation of the time-series dataset, we set = , expecting to find three cbg clusters with different home dwell time patterns, following the stayat-home order: ) cbgs with a significant increase of home dwell time; ) cbgs with a moderate increase of home dwell time; ) cbgs with unnoticeable changes in home dwell time. after the time-series clustering, three cbg clusters are therefore formed, each with a unique distribution pattern of daily home dwell time. identifying the statistical difference in demographic/socioeconomic variables among these clusters facilitates a better understanding of what variables potentially lead to the disparity in home dwell time during the covid- pandemic. qualitatively, we label the cbg clusters, plot them spatially, and compare the spatial pattern of clusters with the spatial pattern of several major demographic/socioeconomic variables in the study area (see figure in section ). quantitatively, we apply one-way anova (analysis of variance) (α = . ) [ ] to assess the statistical significance of five major indicators (see table ) among categorized cbg groups derived from the time-series clustering. as anova does not provide insights into particular differences between pairs of cluster means, we further conduct tukey's test (α = . , . , . ) [ ] , a common and popular post-hoc analysis following anova, to assess the statistical difference of demographic/socioeconomic variable between cluster pairs. the study area defined in this study is referred to as metro atlanta, designated by the united states office of management and budget (omb) as the atlanta-sandy springs-alpharetta, georgia (ga) metropolitan statistical area (msa). metro atlanta is the twelfth-largest msa in the u.s. and the most populous metro area in ga [ ] . the study area includes a total of ga counties (listed in table a ) and has an estimated population of , , , according to the acs - estimates. metro atlanta has grown rapidly since the s. despite its rapid growth, however, metro atlanta has shown widening disparities, including class and racial divisions, underlying the uneven growth and development, making it one of the metro regions with the most inequity [ ] [ ] [ ] . it is the main reason why we chose this metro region to explore the disparity in responses to the covid- pandemic. in the last few decades, the north metro area has absorbed most of the new growth, thanks to the northward shifting trend of the metro region's white population and the rapid office, commercial, and retail development [ ] . after the increasingly unbalanced development in recent decades, metro atlanta started to present a distinct north-south spatial disparity in many demographic/socioeconomic variables (figure ). compared to the south metro region, the north region is characterized by higher income (figure a) , higher white percentages (figure b ), higher education (figure c) , and higher percentages of work-from-home workers (figure d) . is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . in contrast to the substantial spatial heterogeneity of socioeconomic status, ga's governmental reactions to the covid- pandemic are rather homogenous in space. on march , , governor brian p. kemp announced the public health state of emergency in ga. twenty days later (april ), the shelter-in-place order took effect for the entire state [ ] . the strict social distancing measures lasted until late april when ga started to reopen gradually: resuming restaurant dine-in services (april ), reopening bars and nightclubs with capacity limits (june ), allowing the gatherings of people (june ), and reopening conventions and live performance (july ) [ ] . is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . implemented in march and april strongly. cbgs in cluster # experienced a moderate increase in home dwell time during the implementation of strict social distancing measures (figure b ). compared to cluster # where the daily home dwell time increased up to , mins, cbgs in cluster # saw a more dramatic increase, as the home dwell time for most of the cbgs in cluster # reached , mins (out of mins in a day) in march and april, suggesting that mitigation measures have greatly changed people's travel behavior in these cbgs (figure c ). note that the three identified clusters are with different numbers of cbgs. clusters # , # , and # have cbgs, cbgs, and cbgs, respectively. figure shows the spatial distribution of the three cbg clusters, which presents a certain level of spatial autocorrelation, especially for cluster # and cluster # . the global moran's i [ ] for the distribution of the three identified clusters is . , and it is significant at the significance level of . . in general, the spatial distribution implies that demographic/socioeconomic variables potentially drive the disparity in home dwell time during the pandemic. the is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . distribution of cbgs in cluster # suggests a high correlation of home dwell time and income, as the distribution patterns between cbgs in cluster # and cbgs of high household income (see figure a ) are largely similar. north metro atlanta, where cbgs with high percentages of workfrom-home workers and high educational levels are concentrated, exhibits a strong influence due to the stay-at-home orders, evidenced by the high concentration of cbgs in cluster # , a cluster with significantly increased home dwell time in march and april. the selected sixteen demographic/socioeconomic variables present unique distribution patterns in the three identified clusters ( figure ). compared with the other two clusters, cluster # is characterized by a high median household income, a high percentage of high-earning groups, a low percentage of low-earning groups, and a low unemployment rate, suggesting that residents in rich cbgs respond to the stay-at-home order more aggressively by considerably reducing their out-of-home activities. it indicates that financial resources can, to a certain degree, influence the effectiveness of policies, as stated in other studies [ , ] . in terms of racial composition, the three clusters are distinctly different. the mean black percentages of cbgs in cluster # , # , and # are respectively . %, . %, and . %. cbgs in cluster # (with unnoticeable home dwell time increase) present much higher black percentages than cluster # (with strong home dwell time increase), revealing that stay-at-home order is less effective for cbgs with higher black percentages. this finding coincides with other recent studies that identified the racial disparities during the covid- pandemic [ , ] . as expected, cluster # also presents a higher single-parent family percentage, given the fact that a high percentage of single-parent families is usually seen in black communities [ ] . in contrast, the three identified is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . clusters present similar hispanic and female percentages, indicating their weaker role in distinguishing the patterns of home dwell time. as for education, cbgs in cluster # and # show similar distribution of the percentages of low education ( . % and . % as mean) while cbgs in cluster # shows a considerably lower percentage ( . % as mean). a reversed pattern can be found for high education, where cluster # presents a notably higher percentage of high education compared to cluster # and # . the percentages of short-commuters remain similar in all three clusters, while the percentages of long-commuters differ. the mean percentages of long-commuters in cluster # , # , and # are . %, . %, and . %, respectively. the result points out that a stronger increase in home dwell time is in tandem with a higher percentage of long-commuters. figure . selected demographic/socioeconomic variables in three identified clusters. the descriptions of these variables can be found in table . we perform avnoa to assess the statistical difference of demographic/socioeconomic variables among the three identified clusters and post-hoc tukey's test to evaluate the statistical difference between a certain cluster pair. the results from anova suggest that all selected variables, except for the percentage of females (pct_female) and the percentage of shortcommuters (pct_short_commute), show a statistically significant difference (α = . ) among the three clusters ( table ). the results reveal that gender and the percentage of short-commuters are not significantly different (α = . ) among the means of the three identified clusters, indicating that these two variables play a weaker role in explaining the disparity in patterns of home dwell time. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . to provide deeper insights into the comparisons of selected variables between a specific pair of clusters, we further conduct post-hoc tukey's test (figure ) . for variables regarding economic status, cluster # is statistically different (α = . ) from cluster # and # in all four economicrelated variables, i.e., pct_low_income, pct_high_income, median_hhinc, and pct_unemployrate. cluster # and cluster # present a weaker difference (α = . ) in median_hhinc and are not significantly different in pct_high_income. results of racial and ethnic variables suggest that three clusters are statistically different from each other in pct_white, pct_black, and pct_hispanic, despite the weaker difference in pct_hispanic (α = . ) between cluster # and # . the difference in education (pct_low_edu and pct_high_edu) is not significant between cluster # and cluster # but is significant (α = . ) when comparing cluster # to either cluster # or # . it suggests that cbgs in cluster # , a cluster with a strong increase in home dwell time, are characterized by their residents with high education, which is statistically different from the other two clusters. in addition, the three clusters are statistically different (α = . ) from each other in terms of longcommuters (pct_long_commute) and car ownership (pct_ car), suggesting that these two variables partially explain the disparity in home dwell time. is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . this study applies a time-series clustering technique to categorize fine-grained mobility records (at cbg level) during the covid- pandemic. through the investigation of the demographic/socioeconomic variables in identified time-series clusters, we find that they are able to explain the disparity in home dwell time in response to the stay-at-home order, which potentially leads to disproportionate exposures to the risk from the covid- . this study also reveals that socially disadvantaged groups are less likely to follow the order to stay at home, pointing out the extensive gaps in the effectiveness of social distancing measures exist between socially disadvantaged groups and others. to make things worse, the existing socioeconomic status induced disparities are often exaggerated by the shortcomings of u.s. protection measures (e.g., health insurance, minimum incomes, unemployment benefits), potentially causing longterm negative outcomes for the socially disadvantaged populations [ ] . in addition to the many pieces of epidemiological evidence that prove a strong relationship between social inequality and health outcomes [ , ] , this study offers evidence in the covid- pandemic we are facing. specifically, we find that all selected variables, except for the percentage of females (pct_female) and the percentage of short-commuters (pct_short_commute), show a statistically significant difference (α = . ) among the three identified clusters. cbgs in cluster # , a cluster with strong response in home dwell time, are characterized by high median household income, high black percentage, high percentage of high-earning groups, low unemployment rate, high is the author/funder, who has granted medrxiv a license to display the preprint in (which was not certified by peer review) preprint the copyright holder for this this version posted september , . . education, low percentage of single parents, high car ownership, and high percentage of longcommuters. the statistically significant difference of demographic/socioeconomic variables in cluster # collectively points out the privilege of the advantaged groups, usually the white and the affluent. the weak response from the socially disadvantaged groups in home dwell time can be possibly explained by the fact that policies can sometimes unintentionally create discrimination among groups with different socioeconomic status [ ] , as people can react to policies based on the financial resources they have [ ] , which in return, influences the effectiveness of the policies. our study reveals that the long-standing inequity issue in the u.s. stands in the way of the effective implementation of social distancing measures. thus, policymakers need to carefully evaluate the inevitable trade-off among different groups and make sure the outcomes of their policies reflect not only the preferences of the advantaged but also the interests of the disadvantaged. it is important to mention several limitations of this study and provide guidelines for future directions. first, we acknowledge the subjectivity of predefining the number of clusters in the kmeans clustering algorithm. in this study, we set the number of clusters as three (i.e., = ) via the investigation and interpretation of the home dwell time records from safegraph. we notice that, even after the preprocessing, some cbgs still present unstable temporal patterns due to the low and varying daily device count. our interpretation of the data records reveals three distinct temporal patterns with a strong, moderate, and unnoticeable increase in home dwell time during march and april (hence, is predefined as ). to ensure the interpretability of clusters, the selection of the number of clusters in kmeans via prior knowledge (priori) is common. however, we acknowledge that approaches like elbow curve [ ] and silhouette analysis [ ] are largely adopted to facilitate the optimization of without prior knowledge. when conducting a crosscity comparison or reproducing our approach in another region, we advise re-investigating the pattern of the time-series or adopting the aforementioned approaches to derive a reasonable setting of k. second, we construct and cluster the time-series of home dwell time using the data in the year (january to aug ), without considering the changes in time-series compared to the previous year. it is reasonable to assume that deriving a cross-year change index facilitates the identification of cbgs that behave differently compared to the year . however, we need to acknowledge the involvement of data records in the year inevitably introduces a certain level of uncertainty, as daily device count may vary substantially, leading to different representativeness of the same cbg between the two years. in addition, the kmeans time-series clustering algorithm in this study takes the -month period as input. further efforts can be directed towards the exploration of how cbgs behave differently at a certain time frame window, e.g., march and april, when strict social distancing measures were implemented. third, this study selects a total of sixteen variables from five major categories and explores the distribution of these variables in three identified clusters. although previous studies have demonstrated the strong linkage between these variables and the participation of out-of-home activities, we can not rule out the possible contribution of other demographic/socioeconomic variables that are not included in this study. future studies need to incorporate more variables to understand their roles in how social distancing guidelines are practiced. in addition, it is reasonable to assume that these variables drive the disparity in home dwell time, not independently but collectively. therefore, statistical approaches like multinomial logit regression [ ] can be used to further investigate the interactions among these variables towards time-seriesbased cluster generation. finally, it should be noted that the demographic structure, spatial pattern, and built environment vary substantially across areas, especially across densely populated urban fabrics [ , ] . thus, the influence of demographic/socioeconomic variables on the disparity in home dwell time following the stay-at-home order may not hold the same and tend to vary geographically. in addition, local governments had differing responses to the pandemic with varying strictness of the implemented social distancing measures, potentially leading to an unequal impact that disfavors disadvantaged groups. this study only explores the situation in metro atlanta, which can not be generalized to other regions without caution. thus, it is necessary to conduct comparative studies that include multiple regions to better understand the contribution of demographic/socioeconomic variables to the impact of the covid- pandemic on mobility-related behaviors. this study categorizes the time-series of home dwell time records during the covid- pandemic, and further explores what demographic/socioeconomic variables differ among the categories with statistical significance. taking the atlanta-sandy springs-roswell metropolitan statistical area (metro atlanta) as a study case, we investigates the potential driving factors that lead to the disparity in the time-series of home dwell time, providing fundamental knowledge that benefits policy-making for better mitigation measures of future pandemics. we find that demographic/socioeconomic variables can explain the disparity in home dwell time in response to the stay-at-home order, which potentially leads to disproportionate exposures to the risk from the covid- . the results further suggest that socially disadvantaged groups are less likely to follow the order to stay at home, pointing out the extensive gaps in the effectiveness of social distancing measures exist between socially disadvantaged groups and others. specifically, we find that cbgs with strong response to the stay-at-home order are characterized by high median household income, high black percentage, high percentage of highearning groups, low unemployment rate, high education, low percentage of single parents, high car ownership, and high percentage of long-commuters, pointing out the privilege of the advantaged groups, usually the white and the affluent. in other words, populations with lower socioeconomic status may lack the freedom or flexibility to stay at home, leading to the exposure of more risks during the pandemic. our study reveals that the long-standing inequity issue in the u.s. stands in the way of the effective implementation of social distancing measures. thus, policymakers need to carefully evaluate the inevitable trade-off among different groups and make sure the outcomes of their policies reflect not only the preferences of the advantaged but also the interests of the disadvantaged. covid- ) -events as they happen covid- ) -weekly epidemiological update the covid- vaccine development landscape social distancing responses to covid- emergency declarations strongly differentiated by income the effect of human mobility and control measures on the covid- epidemic in china transmission potential and severity of covid- in south korea covid- and italy: what next? first cases of coronavirus disease (covid- ) in france: surveillance, investigations and control measures unemployment effects of stay-at-home orders: evidence from high frequency claims data. institute for research on labor and employment working paper the characteristics of multi-source mobility datasets and how they reveal the luxury nature of social distancing in the u.s. during the covid- pandemic the determinants of the differential exposure to covid- in new york city and their evolution over time. covid economics: vetted and real-time papers economic and social consequences of human mobility restrictions under covid- social distancing, internet access and inequality (no. w ) the benefits and costs of social distancing in rich and poor countries urban residents in states hit hard by covid- most likely to see it as a threat to daily life are stay-at-home orders more difficult to follow for low-income groups? working paper american community survey information guide when to use -year, -year, or -year estimates distance traveled in three canadian cities: spatial analysis from the perspective of vulnerable population segments a time-use investigation of shopping participation in three canadian cities: is there evidence of social exclusion? my car, my friends, and me: a preliminary analysis of automobility and social activity participation relative accessibility deprivation indicators for urban settings: definitions and application to food deserts in montreal human mobility, and covid- . arxiv preprint an efficient kmeans clustering algorithm: analysis and implementation clustering of time series data-a survey selection of k in k-means clustering analysis of variance (anova) tukey's honestly significant difference (hsd) test metropolitan and micropolitan statistical areas population totals and components of change multi-city study of urban inequality inequities of transit access: the case of sprawl atlanta: social equity dimensions of uneven growth and development atlanta: race, class, and urban expansion kemp -office of the governor where states reopened and cases spiked after the u.s. shutdown, the washington post local spatial autocorrelation statistics: distributional issues and an application the impact of social vulnerability on covid- in the us: an analysis of spatially varying relationships assessing racial and ethnic disparities using a covid- outcomes continuum for new york state the covid- pandemic: a call to action to identify and address racial and ethnic disparities the changing demographic and socioeconomic characteristics of single parent families anthropology, inequality, and disease: a review the income-associated burden of disease in the united states disadvantage, inequality, and social policy review on determining number of cluster in k-means clustering selecting variables for k-means cluster analysis by using a genetic algorithm that optimises the silhouettes multinomial logistic regression algorithm impact of metropolitan-level built environment on travel behavior how built environment affects travel behavior: a comparative analysis of the connections between land use and vehicle miles traveled in us cities key: cord- -ckuma j authors: mcdowell, g.; sumowski, m.; toellner, h.; karok, s.; o'dwyer, c.; hornsby, j.; lowe, d.; carlin, c. title: two-way remote monitoring allows effective and realistic provision of home-niv to copd patients with persistent hypercapnia. date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: ckuma j background outcomes for chronic obstructive pulmonary disease (copd) patients with persistent hypercapnic respiratory failure are improved by long-term home non-invasive ventilation (niv). provision of home-niv presents clinical and service challenges. the aim of this study was to assess outcomes of home-niv in hypercapnic copd patients managed remotely. methods retrospective analysis of a dataset of copd patients with persistent hypercapnic respiratory failure who commenced home-niv managed by two-way remote monitoring (lumis, airview, resmed) between february and january . the primary outcome of this study was time to readmission or death at months in patients receiving home-niv versus a retrospectively identified control cohort of patients with hypercapnic copd who had not been referred for home-niv. results the median time to readmission or death was significantly prolonged in patients who commenced home-niv (median days, % ci . - . ) versus the control cohort ( days, % ci . - . ; p< . ). average time to hospital readmission was days ( % ci, . - . ) and days ( % ci, . - . ; p< . ), respectively. median decrease in bicarbonate level of . mmol/l (p< . ) and daytime pco . kpa (p< . ) demonstrate efficacy of home-niv. a median reduction of occupied bed days per annum versus previous year prior to niv was observed per patient who continued home-niv throughout the study period (n= ). conclusion these findings confirm the benefits of home-niv in clinical practice and support the use of two-way remote monitoring as a feasible solution to managing the delivery of home-niv for copd patients with persistent hypercapnia. copd is the second most common cause of emergency hospital admission in the uk, accounting for over million bed days at a cost to the nhs of over £ million a year ( ) . around a third of those admitted to hospital following an exacerbation of copd are readmitted within days, which is also strongly associated with post-discharge mortality ( ) . avoiding copd exacerbations and hospitalisations is noted to be a key priority by copd patients ( , ) , and targeting a reduction in these is necessary to address the substantial health and economic burden imposed by copd. the risk of hospital readmissions and further life-threatening events is particularly high among patients with a severe exacerbation of copd that leads to hypercapnic respiratory failure ( ) . the first-line treatment for these patients in the acute setting is non-invasive ventilation (niv) ( ) , which has been shown to prevent intubation and invasive mechanical ventilation and reduce hospital mortality ( , ) . however, it was previously reported that more than % of patients treated with niv for acute hypercapnic respiratory failure were readmitted and nearly % died within the first year after discharge ( ) . a growing area of interest to improve outcomes for patients with severe copd focuses on the application of long-term niv in the home setting. in a recent landmark study, murphy et al. ( ) showed that the addition of home-niv to long-term home oxygen therapy in patients that remained severely hypercapnic to weeks after an exacerbation delayed and reduced hospital readmissions at months. a benefit on month overall survival was noted in an earlier randomised controlled trial involving stable hypercapnic patients treated with home-niv ( ) . the driver of clinical improvements across both studies can be attributed to higher inspiratory pressures targeting a reduction in co in patients who were persistently hypercapnic. a task force of the european respiratory society has since adopted home niv as recommended treatment for copd patients presenting with persistent hypercapnic respiratory failure ( ) . overall, the existing body of research suggests that there are some open questions with regards to patient selection and timing of home-niv ( , ) . for example, only % of patients screened in hot-hmv study were recruited to the trial, raising questions about the external validity of niv randomised controlled trial (rct) results. many of the patients excluded from niv rcts meet current guidance critieria for home niv provision. establishing whether beneficial outcomes from home niv copd rcts can be matched with routine clinical adoption is required. the feasibility of delivering home-niv to patients outside of controlled clinical trial settings also remains to be established, particularly in the context of covid- pandemic. provision for elective inpatient niv initiation and titration beyond clinical trials is limited, patients generally wish to avoid hospitalisations and severity of their illness limits capacity for outpatient attendances. regular follow-up helps to monitor the effectiveness of ventilation, encourages treatment adherence and optimises patient comfort and ventilator settings, but realistic delivery of intensive follow-up is problematic ( ) . the covid- pandemic has presented additional challenges to home niv provision. overall healthcare service pressures, social distancing requirements including need to protect vulnerable patients from nosocomial covid- , and infection control requirements for clinicians, with niv classified as an aerosol generating procedure will all continue to impact on breathing support service capacity. it has been demonstrated that copd patients at high risk for exacerbations can be taught to self-manage when offered ongoing support ( , ) . early evidence that compares remotely monitored copd patients with usual face-to-face care is encouraging in terms of patient quality of life and number of hospital admissions ( ) . with the recent advent of two-way tele-monitoring, healthcare providers can view live niv data from patients, adjust ventilator settings remotely and facilitate personalised care. a combination of patient education, self-management and remote monitoring may therefore be a realistic support pathway for home-niv. using this to channel shift service provision, replacing some aspects of inpatient niv setup and/or . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint face-face outpatient niv follow-up on an individualised basis is attractive, particularly to mitigate risks and bolster service provision in face of covid- related challenges. nhs greater glasgow and clyde (gg&c) implemented a remote-monitored home-niv model for its copd population in . the present study retrospectively analysed all patients who were commenced on therapy over the first months of this service, with aim of determining whether outcomes similar to rcts were achieved in a real-world cohort of hypercapnic copd patients with typical comorbidities (which would have excluded many from niv rcts) who are managed with remote-monitored home niv. the primary outcome was median time to readmission or death over months in patients receiving home-niv versus a control cohort. this study is part of programme of work analysing outcomes in a dataset of copd patients provided by nhs gg&c safe haven. local privacy advisory committee approval was obtained for release of deidentified data for this study. two cohorts were sampled from the database as outlined in figure . the home-niv cohort consisted of consecutive patients with copd who commenced home-niv between february th and january th at the queen elizabeth university hospital. copd diagnosis was confirmed as per gold guidelines, and was the primary diagnosis responsible for hypercapnic respiratory failure in all patients in this cohort. hypercapnic respiratory failure was defined as pco > kpa at least weeks after index acute exacerbation and/or presence of persisting hypercapnia across current and previous copd episodes, with deferred niv assessment for attempted follow up post episode judged inappropriate. patients in this cohort continued home-niv throughout the -month study period ('niv users'). patients discontinued home-niv due to poor acceptance despite individualised interventions to optimise therapy during the study period ('niv non-users'). the control cohort comprised patients treated with acute niv at the queen elizabeth university hospital between march and november following a life-threatening exacerbation of copd that resulted in hypercapnic respiratory failure. this was in the period prior to adoption of routine screening of all acute niv patients for home niv at our institution. retrospective review noted that patients in this group were suitable for home-niv but they were not referred to the home-niv service during the follow up period of this study. none of these patients 'crossed over' to commence home niv during the study's observed follow up period. all patients were noted to be receiving guideline-based copd care, including home oxygen therapy unless contraindicated. since early our practice has been to offer trialling home niv to copd patients with persistent hypercapnia (pcco > kpa) at stable status, or during an acute episode if there has been recurrent hypercapnic respiratory failure where deferring commencing home niv to outpatient review is judged impractical or unsafe by patient-clinician consensus. often this decision to offer home niv within an acute episode is informed by high serum bicarbonate levels (implying chronic hypercapnia) and/or presence of suspected or confirmed osa overlapping with severe copd. patients in the home-niv cohort were commenced on remote monitored home-niv in ivaps auto-epap mode (lumis st-a, airview, resmed) if persisting hypercapnia was present at day case review to . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint weeks following hospital discharge (n= / ) or during the index hospital admission if persisting hypercapnia had been demonstrated across previous copd episodes as per above noted criteria (n= / ) patients initiated on home-niv consented to their data being accessed and shared on the airview platform by the necessary healthcare professionals. airview data review was used to inform routine clinical care and identify niv therapy issues (usage, leak) as well as ventilation data patterns supporting optimized niv provision. patient telephone, community or clinic follow up was individualized based on and informed by the remote monitoring data. airview platform was used to make niv device therapy changes, when indicated. the supplementary material provides an overview of the copd niv therapy protocol implemented at nhs gg&c, with typical follow-up schedule as well as representative remote monitoring data. remotemonitoring pathway is used to support daycase niv initiation (rather than elective hospital admission), early hospital discharge (if niv initiated during inpatient episode our institution) or inpatient niv initiation at another hospital (rather than hospital-hospital transfer). remote-monitoring data is reviewed at day - , day - and weekly thereafter, combined where required with telephone or video consultation, until treatment is optimized. remote-adjustments to ivaps-autoepap niv settings, adjustment to niv interface and face-face at home or daycase review arrangement are made where remote-monitoring and consultation data indicates requirement. stability is judged based on patient comfort and symptoms, acceptable niv usage durations, minimized unintentional leak and appropriate pressure support and other ventilator parameters. clinic follow up within - weeks including repeat capillary blood gases is scheduled for stable patients who can attend. patients who are having persisting difficulties establishing home niv despite remote-monitoring inputs are offered elective admission. baseline descriptive data were recorded including gender, age, bmi, predicted fev % as well as comorbidities that could potentially contribute to hypercapnia. the primary outcome was time to readmission or death, censored at date of admission, date of death or th january . secondary outcome measures included time to hospital admissions and overall survival in the home-niv and control cohort. subgroup analyses of the home-niv cohort explored differences between niv users and niv non-users in the primary and secondary outcome measures. changes in healthcare usage (number of hospital admissions, occupied bed days (obds) and respiratory nurse home visits) were evaluated in niv users and niv non-users before and after home-niv. changes in capillary blood gases were analysed in the home-niv cohort in the form of capillary blood gas pco and bicarbonate (where available). baseline characteristics of the study population are presented as mean (standard deviation), median (interquartile range) or count (percentage), as appropriate. primary and secondary study outcome measures were compared between the home-niv and control cohort using kaplan-meier survival analysis and the mantel-cox log rank test. additional subgroup analyses compared primary and secondary outcome measures between the niv user group and the niv non-user group alongside the control cohort using kaplan-meier and mantel-cox tests. changes in healthcare usage (number of hospital admissions, obds, and respiratory nurse home visits) and capillary blood gas pco and bicarbonate between niv users, niv non-users and the control cohort were analysed using wilcoxon signed-rank test. statistical analyses were conducted using ibm spss statistics v. (ibm, new york, usa) and graphpad prism v . (graphpad software, san diego, usa). . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint due to the nature of a retrospective analysis, the research was undertaken without patient involvement. patients were not invited to comment on the study design and were not consulted to develop patient relevant outcomes, interpret the results or to contribute to the writing or editing of this document for readability or accuracy. . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint baseline characteristics are shown in table . gender, bmi and age are similar across all study cohorts except for a higher rate of males, lower bmi and a lower rate of notable comorbidities (suspected or confirmed overlapping osa, long term opiate therapy) in the niv non-user subgroup. the fev % predicted value was around % across all study groups, in line with a "severe" classification of copd ( ) particularly as in many patients the spirometry was an historical rather than contemporary result. the median time to readmission or death was significantly prolonged in patients with persisting hypercapnic respiratory failure treated with home-niv compared to a control cohort of hypercapnic copd patients (p< . , see figure a ). subgroup analyses showed significant differences between the niv user subgroup versus both the niv non-user group and the control cohort (both p< . ). improvement in time to readmission or death was not achieved in patients who discontinued home-niv (figure b ). table summarises time to readmission or death for each group. time to hospital readmission followed the same pattern as time to readmission or death. median time to hospital readmission was days for the home-niv cohort ( % ci, - ) and days ( % ci, - ; p< . ) for the control cohort. subgroup analyses showed that time to hospital readmission was significantly improved in niv-users when compared to niv non-users and the control group (both p< . ). there was no significant difference comparing the control group and niv non-users (p= . ). -month overall survival was . % in the home-niv cohort and . % in the control cohort. patients that continued to use home-niv during the study period had a -month overall survival rate of . %. due to the low number of recorded mortality events, group differences were not statistically significant in the primary (p= . ) or subgroup analyses (p= . ). service usage in nhs gg&c by the home-niv cohort in the months prior to commencing home-niv (pre-niv) and the months following initiation of home-niv (post-niv) are outlined in table . a significant reduction in total number of admissions and obds is noted following initiation of home-niv across all patients in the home-niv cohort, but is particularly pronounced in niv users (p< . , figure ). the data equate to a median reduction of obds per annum per patient who continued remote-monitored home-niv. requirements for respiratory nurse home visits did not change significantly with the initiation of home-niv. capillary blood gas measurements were available in patients before and after home-niv. significant improvements in median pco ( . kpa, p< . ) and bicarbonate ( . mmol/l, p< . ) measured at followup after initiation of home-niv relative to measurements at baseline indicate control of hypercapnic respiratory failure (figure ). . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . table baseline characteristics table changes in healthcare usage before and after home-niv . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint this study confirms the benefits of home-niv in copd patients with persisting hypercapnic respiratory failure in clinical practice. patients in the home-niv cohort had significantly fewer hospital readmissions compared to the control cohort, with the greatest improvements seen in those who continued with home-niv throughout the -month observed follow-up period. moreover, these data support the use of two-way remote monitoring as a feasible solution to managing the delivery of home-niv, maintaining care-quality while also substantially reducing demand on healthcare resources. the current results are consistent with the hot-hmv trial by murphy et al. ( ) reporting delayed and reduced hospital readmissions in copd patients randomised to receive home-niv compared to patients treated with home oxygen therapy alone. while there are some important differences to consider between the hot-hmv trial and this study -less severe documented airflow obstruction and higher bmi in this study's patient cohort -reporting similar outcomes to the hot-hmv trial is encouraging. our data indicates that home-niv is effective in a typical population of patients presenting in routine clinical practice with phenotypes which would have potentially excluded them from rct inclusion. the secondary analyses also broadly support the interpretation of hot-hmv and other landmark copd home-niv trials ( , ) indicating that patient selection for home-niv should be based on persisting hypercapnic respiratory failure, and that optimising niv to target improvement in hypercapnia is appropriate. the comparable outcomes of this study and hot-hmv importantly provide reassurance about safety and quality of a copd home-niv service model utilising assistive two-way remote-monitoring technology. in the hot-hmv trial, home-niv was noted to reduce exacerbation-related costs (by £ , per case) and patient-reported costs (by £ , ) relative to the control arm. niv device cost and cost per physician visit had the greatest impact on cost per qaly ( ) . in line with this, the present study notes a considerable reduction in healthcare usage among home-niv users. in addition to significant decreases in hospital admissions, a median reduction of occupied bed days per annum was observed per patient who continued home-niv. it seems likely that a copd home-niv management strategy based on remotemonitoring and individualised follow-up will reduces physician visit and patient travel costs and impact positively on patient quality of life. remote-monitoring based service model should reduce home niv costs and potentially further improve the quality of life benefit. future assessments are required to expand on the cost-effectiveness of home-niv and a proactive copd service model based on remote-monitoring. among various patient groups using niv at home, remote monitoring has been found to be non-inferior and at times more effective than usual face-to-face support, preferred by patients and associated with reduced healthcare utilisation ( , ( ) ( ) ( ) . the additional channel of two-way patient engagement -that is, early intervention with an niv therapy change to optimise settings based on remote-monitoring data -may prove particularly valuable to ensure continued treatment adherence ( ) . monitoring patients is a prerequisite for successful continuation of niv at home. maintaining the required level of contact face-to-face is particularly challenging for severe copd patients, who are often not fit to travel or who may require immediate intervention. remote-monitoring data can be utilised to support and enhance routine clinical care allowing positive endorsement to be relayed when monitoring data is reassuring, prioritising and focusing patientclinician interactions when issues are noted. we show for the first time that initiation and follow-up based exclusively on niv two-way remote monitoring can be an effective and realistic solution to providing access to home-niv to severe copd patients at the necessary scale. benchmarking of outcomes, with similar findings to published rct data provides reassurance about safety and maintained care-quality with a remote-monitoring based approach to home niv for hypercapnic copd. our findings broadly complement those from recent study reported from the netherlands, which demonstrated cost-effective provision of home initiation of niv for stable hypercapnic copd patients utilising remote-monitoring of ventilator and transcutaneous co data ( ) . as key additions, our data suggest that remote-monitoring can be used to . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint safely support patients with persisting hypercapnia who are commenced on home niv at an acute episode as well as at stable status, and that overnight transcutaneous co monitoring can be omitted from routine follow-up of copd patients on home-niv. undertaking routine transcutaneous monitoring in this patient cohort would not be realistic in routine clinical practice at scale. continued supervision of this approach with reporting of outcomes to ensure safety and quality of home-niv therapy, alongside continued evaluation of other endpoints for respiratory failure monitoring is required. our approach to home-niv setup for hypercapnic copd patients differs from published protocols. we have accrued considerable experience with volume assured pressure support niv modes at our centre. our experience is that these allows niv optimisation to be undertaken more efficiently with enhanced patient comfort and improved treatment quality as well as additional benefits including anticipation that treatment will be responsive to predictable fluctuations in a patient's condition. we commence niv treatment for copd patients in ivaps autoepap mode, targeting symptom benefit, remote-monitored ventilation patterns and follow-up capillary blood gas results (see supplementary data file), rather than in-hospital titration of niv in st mode, targeting high pressure support with transcutaneous co monitoring. satisfactory clinical outcomes and follow-up blood gas data (median reduction pco . kpa) in this study provide reassurance about the quality and safety of this niv setup protocol. clinical user experience with this approach is positive, and it achieves reduction in occupied bed days with no additional staffing support required to deliver the service. whether matched clinical outcomes and similar efficiency would be achieved with remote-monitored niv utilising st mode (potentially with at home titration) requires additional study. our subgroup analyses consistently showed that outcomes in patients who discontinue home-niv align closely with outcomes from the control cohort. this suggests that patients with severe hypercapnic copd are not negatively affected by the process of initiating home-niv. further exploration is indicated in this sub-population of patients who do not tolerate long-term niv at home. it could be that greater attention to patient activation, treatment provision, ventilation optimisation or level of contact is required. the patients who discontinued home niv had significant remote-management based scrutiny and input, and were offered 'standard' in-hospital and/or outpatient face-face attendance to try and maintain niv use. other centres have noted progressive improvements in home niv adherence rates with multi-disciplinary 'niv failure' clinics . adoption of remote-monitoring can improve the workflow and prioritisation of niv mdt activity. whether additional mdt input than that provided in our described model would improve long term niv adherence is uncertain. the possibility that there are different responder groups regardless of optimisation efforts should also be considered. in our cohort, there was a higher proportion of female patients and higher mean bmi in niv users. we can speculate that these differences might reflect home support or early symptom benefit differences from home niv: obese patients may be more likely to have osa overlapping with hypercapnic copd. characterisation of these and other factors with remotemonitoring data comparing sustained users and non-users in future studies may allow further evaluation to a service model with evidence-based proactive prioritisation: intensive focused mdt input to those patients who require it, and minimised input to those where it is unnecessary or will be non-contributory. lastly, the presence of a control cohort, which consisted of patients who may have benefited but were not referred for home-niv from within an active tertiary niv centre, highlights the need for clinician education and other efforts to ensure equitable patient access to this evidence-based intervention. this study had several strengths, including the use of clinically meaningful outcomes and the real-world nature of the patient cohorts. however, we acknowledge several limitations. treatment allocation was not randomised and the impact of unrecognised confounding factors cannot be ruled out. we also did not have complete data on demographics, comorbidities or provision of and adherence to other copd treatments to ensure cohorts were otherwise matched. the statistical analyses of some of the subgroup analyses should be considered exploratory due to the limited sample size and the potential issue of multiple testing. finally, this study was not powered to find a difference in survival. while a survival benefit of home-niv has been . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint previously demonstrated in a similar patient population ( ) , clear evidence of improved survival is still lacking and should be investigated in larger prospective trials. copd patients with persistent hypercapnic respiratory failure have poor outcomes with limited treatment options available. to our knowledge, this is the first study to confirm the benefits of remote-managed home-niv in this group of copd patients as they typically present in clinical practice. home-niv prolonged the time to readmission or death within months in patients with persistent hypercapnia following an acute exacerbation of copd. in addition to being the outcomes that copd patients rate as most important ( ) , exacerbation and hospitalisation avoidance address the substantial economic burden imposed by copd. we report significant reductions in healthcare usage among home-niv users and demonstrate that twoway remote monitoring can be an effective and realistic solution to providing access to home-niv for hypercapnic copd patients. the covid- pandemic has presented considerable challenges to home-niv service provision. our data provides reassurance that a service model based on outpatient or truncated inpatient niv initiation and remote-monitoring based follow up allows face-face contact to be safely minimised, reducing covid- transmission risks whilst maintaining niv care-quality. we gratefully acknowledge the comprehensive contribution of the respiratory physiologist and nurse specialist teams in nhs gg&c to the positive outcomes reported in this paper: they have adapted service models to realise benefits from assistive technologies, and continue to be enthusiastically committed to improving patient outcomes and providing realistic medicine. study participant flow diagram. kaplan-meier plot of time to readmission or death from study initiation to the end of study follow-up. (a) primary analysis shows significant differences between the home-niv and the control cohort. (b) subgroup analyses showed that the improvement in -month readmission avoidance is noted only in patients who continue home-niv throughout the study period. . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint changes in healthcare usage before and after home-niv for niv users (circle) and niv non-users (triangle). changes in blood gas measurements at baseline and follow up after home-niv initiation. . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint arnal jm, texereau j, garnero a. practical insight to monitor home niv in copd patients. copd. ; ( ): - . . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint study participant flow diagram . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint kaplan-meier plot of time to readmission or death from study initiation to the end of study follow-up. (a) primary analysis shows significant differences between the home-niv and the control cohort. (b) subgroup analyses showed that the improvement in -month readmission avoidance is noted only in patients who continue home-niv throughout the study period. . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint changes in healthcare usage before and after home-niv for niv users (circle) and niv non-users (triangle). data on respiratory nurse home visits was not available in electronic health records for the patients whose residence is outside our health board. . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint changes in blood gas measurements at baseline and follow up after home-niv initiation in niv users. data availability limited to subset of patients who attended for face-face follow up and had some or all components of post niv blood gas results inputted into electronic health record (including patients who had pco but not bicarbonate result available). patients had pco < kpa at time of niv initiation but had other standard indications to commence home niv. . cc-by-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint nhs. copd commissioning toolkit: a resource for commissioners /chronic-obstructive-pulmonary-disease-copd-commissioning-toolkit.pdf: nhs medical directorate risk of death and readmission of hospital-admitted copd exacerbations: european copd audit global strategy for the diagnosis, management, and prevention of chronic obstructive lung disease global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease: gold executive summary readmission rates and life threatening events in copd survivors treated with non-invasive ventilation for acute hypercapnic respiratory failure effects of non-invasive ventilation in patients with acute respiratory failure excluding post-extubation respiratory failure, cardiogenic pulmonary edema and exacerbation of copd: a systematic review and meta-analysis non-invasive ventilation for the management of acute hypercapnic respiratory failure due to exacerbation of chronic obstructive pulmonary disease effect of home noninvasive ventilation with oxygen therapy vs oxygen therapy alone on hospital readmission or death after an acute copd exacerbation: a randomized clinical trial non-invasive positive pressure ventilation for the treatment of severe stable chronic obstructive pulmonary disease: a prospective, multicentre, randomised, controlled clinical trial. the lancet respiratory medicine european respiratory society guidelines on long-term home non-invasive ventilation for management of copd noninvasive ventilation in stable hypercapnic copd: what is the evidence? home noninvasive ventilatory support for patients with chronic obstructive pulmonary disease: patient selection and perspectives glasgow supported self-management trial (gsust) for patients with moderate to severe copd: randomised controlled trial innovative approach to copd improves disease impact, quality of life and reduces hospital admissions in glasgow telehealthcare for chronic obstructive pulmonary disease nocturnal non-invasive ventilation in copd patients with prolonged hypercapnia after ventilatory support for acute respiratory failure: a randomised, controlled, parallel-group study cost-effectiveness of home oxygen therapy-home mechanical ventilation (hot-hmv) for the treatment of chronic obstructive pulmonary disease (copd) with chronic hypercapnic respiratory failure following an acute exacerbation of copd in the united kingdom (uk). a determinants of outcomes and high-value care compliance with home noninvasive mechanical ventilation in patients with chronic respiratory failure: telemonitoring versus usual care surveillance -a randomized pilot study remote monitoring of home non-invasive ventilation: a feasibility study home telemonitoring of noninvasive ventilation decreases healthcare utilisation in a prospective controlled trial of patients with amyotrophic lateral sclerosis effect of a patient engagement tool on positive airway pressure adherence: analysis of a german healthcare provider database home initiation of chronic non-invasive ventilation in copd patients with chronic hypercapnic respiratory failure: a randomised controlled trial a systematic review of how patients value copd outcomes long term adherence to home mechanical ventilation: a -year retrospective, single-centre cohort study key: cord- -yrlzxtbw authors: fong, raymond; tsai, kelvin c. f.; tong, michael c. f.; lee, kathy y. s. title: management of dysphagia in nursing homes during the covid- pandemic: strategies and experiences date: - - journal: sn compr clin med doi: . /s - - - sha: doc_id: cord_uid: yrlzxtbw the global novel coronavirus disease (covid- ) pandemic has had devastating effects not only on healthcare systems worldwide but also on different aspects of the care provided to nursing home residents. dysphagia management is a crucial component of the care provided to many nursing home residents. this article presents the dysphagia management strategies applied in hong kong during the covid- pandemic and the related experiences. a two-tier protection system was implemented wherein residents were categorised according to their contact and hospitalisation histories. the provided swallowing management and personal protective equipment level differed between the two tiers. the article also discusses the referral and prioritisation of clinical services for residents requiring swallowing management, as well as the adaptations of swallowing assessment and management during the pandemic. the possible effects of covid- on mealtime arrangements in nursing homes, the implications of the pandemic on the use of personal protective equipment and the use of telepractice in nursing homes were also discussed. this article has summarised the actions taken in this regard and may serve as a reference to clinicians who are responsible for swallowing assessments and dysphagia management in nursing homes. the world health organization (who) declared the novel coronavirus disease to be a global pandemic in march [ ] . covid- has caused widespread devastation in communities worldwide, and even more significant increases in associated mortality in nursing homes relative to the surrounding communities [ ] . residents in nursing homes often have multiple health conditions and are therefore at a higher risk of mortality in a pandemic scenario. in the covid- pandemic, this increased risk of mortality is not only due to the pandemic disease itself but also due to pre-existing medical conditions, regardless of the residents' covid- infection status. dysphagia is a prevalent problem among nursing home residents. previous studies have reported global prevalence rates ranging from to % [ ] [ ] [ ] . if neglected or mismanaged, dysphagia can lead to serious complications such as malnutrition, dehydration, aspiration pneumonia and death [ ] . dysphagia can be assessed using either noninstrumental or instrumental assessment methods. clinicians rely largely on the former methods because the latter are rarely available in nursing homes. non-instrumental assessment methods, which are also referred to as clinical swallow evaluations (cse), include communication assessments, physical examinations and swallowing trials [ ] . the physical examination in a cse includes an assessment of the cranial nerves, voice and laryngeal function. in some protocols, the clinicians elicit a volitional cough from the patients to assess the airway protective mechanism [ , ] . the swallowing management strategies that can be applied in nursing homes are less confined to the setting. for example, exercises of the oromotor and pharyngeal muscles can be performed [ ] . additionally, clinicians can apply surface electromyography, neuromuscular electrical stimulation and expiratory muscle strength training to the residents. compensatory strategies such as dietary, environmental and utensil modifications are also commonly used [ ] . several of these procedures may induce coughing as a reflexive response to protect the airway. the cse was classified as medium risk according to stratification risk for covid- transmission. the risk of the procedure is attributed by the close proximity to the residents' upper mucosa, prolonged exposure and possibility of reflexive cough during the procedures [ ] . compared with the general community, nursing home residents are at substantially higher risk for having bacterial and viral infections [ ] . healthcare workers (hcws) have to provide care to many residents, which further increases the risk of cross-infection. nursing home residents are also more prone to hospitalisation and thus face an increased risk of hospital-acquired infections, as well as exposure to novel viral agents such as severe acute respiratory syndrome coronavirus (sars-cov- ), the causative agent of covid- . the nature of these procedures also places clinicians at a risk of infection with sars-cov- during dysphagia assessments and management [ ] . covid- advisory group of royal college of speech and language therapists also presented that dysphagia assessment should be considered as an aerosol generating procedures based on theoretical and empirical evidences [ ] . however, cses are crucial to the physical and psychological well-being of many nursing home residents, despite the risk of infection, and thus cannot be suspended. below, some practical strategies and considerations regarding dysphagia management in nursing homes are described. these strategies have been applied in hong kong, one of the first regions affected by covid- [ ] . during the peak of the pandemic, nursing home personnel only included hcws, residents and essential administrative staff. although the loosening of public health policies in late may led to the reopening of schools and public facilities [ ] , visiting policy and visitor numbers at nursing homes remained restricted. patients with covid- , individuals who had come in close contact with infected patients and patients under quarantine were not allowed to visit nursing homes. individuals presenting signs and symptoms of covid- , including a fever, runny nose, loss of smell and taste and a travel history within the past days, were also not allowed to enter nursing homes [ ] . these restrictions protected residents by allowing only minimal contact with individuals outside the nursing home. in hong kong, covid- testing efforts were restricted to approximately samples per day until june and were mainly targeted at travellers to hong kong and those admitted to hospitals [ ]. in july , there was an outbreak after relaxation of social distancing policy [ ] . to date, cluster outbreaks in nursing homes have been reported in at least local nursing homes. the re-emergence of the disease, which previously have been largely contained in the community, has affected nursing homes in this wave of outbreak and the following measures were more important to ensure the safety and well-being of nursing home residents. residents requiring dysphagia management were categorised as either 'standard' or 'at-risk'. the at-risk group included those who had been hospitalised within the past days or had been diagnosed previously with covid- and discharged. residents who had been diagnosed with covid- were assessed after discharged to the nursing home as patients with covid- were considered at high risk for oropharyngeal dysphagia [ ] , especially those who have been previously intubated [ ] . these at-risk residents were deescalated to the standard level after days of quarantine in the facility. therefore, standard and at-risk residents should be considered differently with respect to dysphagia assessments and management and personal protective equipment usage. nursing home residents were referred by the medical doctors or nurses to undergo swallowing assessments and/or management or to receive routine assessment under an annual review of the integrated care plan. two additional measures were enforced during the covid- pandemic. for all referrals, the source was asked to indicate whether the nature was urgent or non-urgent. all standard-level residents were assessed and managed, whereas only the at-risk residents whose referrals were deemed urgent underwent assessments. the at-risk residents with non-urgent referrals were assessed after they deescalated to the standard level. in the latter cases, the eating assessment tool (eat- ) [ ] was applied by interviewing residents with the ability to communicate, and the eat- score was computed. those who received an eat- score of or higher proceeded to a swallowing assessment, while those with lower scores were deemed 'not at significant risk' and were seen at a later stage. in addition to screening tools such as the eat- , clinicians also relied more heavily on the residents' medical records and histories when prioritising cases for assessment and management. dementia, a severely dependent functional status, a high nutritional risk status and an underweight status were identified as risk factors for dysphagia in nursing home residents [ , ] . consequently, the residents' medical records were searched for these factors, and the residents were prioritised accordingly for assessment and management. the use of screening tools such as the eat- and well-researched risk factors facilitated the decisions. clinicians should keep in mind that this is far from ideal, but it is a balance between risk and clinical outcome [ ] . the cse comprises several key components, including a physical examination and swallow trials. cognition and dentition have been identified as indicators of dysphagia in elderly residents of aged care facilities [ ] . therefore, these two aspects were emphasised when determining the residents at a higher risk of dysphagia. an assessment of cognition and dentition would not require the clinician to be in close proximity of the patient and would not be an aerosol-generating procedure (agp), unlike an oral motor examination and swallow trials [ ] . clinicians can reduce their risk of exposure by decreasing their involvement in the performance of agps. some clinicians include volitional or reflexive coughing as a possible indication of aspiration during the cse [ ] . some swallowing manoeuvres, such as the supraglottic swallow, also involve volitional coughing after swallowing to eliminate the aspirated bolus in the airway [ ] . these practices are not advocated and should be avoided during a pandemic to reduce the risk of infecting the clinician during the agp, as well as the risk of exposure of other residents if these manoeuvres were recommended to be performed during mealtimes. in nursing homes, cervical auscultation may be used as an adjunct during a swallowing assessment [ ] . during the covid- pandemic, the use of a stethoscope across multiple patients was limited as much as possible to avoid crossresident infection. whenever a stethoscope was applied to a resident, it was thoroughly cleaned with alcohol wipes ( % ethanol content) at least three times before it was used on another patient. similar disinfection procedures were used for pulse oximetry devices. the use of utensils of different sizes, shapes and types is another compensatory strategy implemented in cse and dysphagia management. during the covid- pandemic, utensils and containers were largely switched to disposable options to reduce the risk of infection. therefore, the use of utensils and containers as a compensatory strategy for dysphagia management may be limited in a pandemic setting. in addition to the limitations associated with utensils and manoeuvres, limitations were also placed on exercises or therapy options because of the covid- pandemic. although the use of sensory stimulation in clinical practice is not supported by solid evidence, it is nevertheless used by some clinicians [ ] . the use of a cold and sour stimulant may trigger gagging and coughing responses, and clinicians must remain in close proximity to the patient during these procedures. therefore, sensory stimulation is associated with a higher risk of infection. these practices were completely avoided in patients that were deemed at risk and generally avoided in residents at the standard level of care. expiratory muscle strength training (emst) has been advocated to improve the swallowing functions of patients with dysphagia associated with different aetiologies [ , ] . however, this procedure involves blowing air into the device, and this method and the difficulty associated with device disinfection made it necessary for clinicians to avoid prescribing emst for at-risk patients. emst was only applied to patients at a standard level of care, and they were advised to remain at a distance of at least . m from residents during the procedure. dysphagia management across the two-tiers of residents also differed; the at-risk residents were managed conservatively with diet modification and swallowing manoeuvres [ ] . direct treatments can be considered when these at-risk residents were deescalated to the standard level after the quarantine in the facility [ ] . in nursing homes, mealtimes normally involve a gathering of residents in a dining hall. each resident would receive their meal on their own tray and would eat individually. the covid- pandemic led some nursing homes to change this practice, after which residents were only allowed to eat meals in their own rooms or personal spaces. other homes segregated residents into small groups and only allowed one small group to dine at a time. the lack of olfactory and visual stimulation associated with mealtimes in dining halls may have affected some of the feeding behaviours and patterns of residents, especially those with dementia [ ] . clinicians monitored these behaviours and intake amounts more closely once these changes had been implemented and made any necessary suitable arrangements to overcome the sensory deprivation and social isolation. the recommendations for nursing homes that assessed and managed patients at the standard level of care indicated that face masks and gloves should be considered the minimal level of personal protective equipment (ppe); if available, face shields should be used when interacting with all standardlevel patients. in contrast, face shields and personal gowns should be used in addition to face masks and gloves when interacting with at-risk residents. all clinicians received proper training in infection control, which addressed the use of different forms of ppe and the standard procedures for donning and doffing these items according to training materials from the government website [ ] . hand hygiene was advocated among clinicians and was required before and after visiting the patient and touching any of his/her belongings. existing evidence supports the use of telepractice in dysphagia management. studies on this approach have advocated the use of trained assistant personnel at a remote site to provide the service and achieve valid and reliable results [ , ] . some studies have used videoconferencing software to allow the clinician and patient to interact in real-time and to facilitate the provision of clinical services. many nursing home residents do not have a sufficient cognitive level that would allow them to use electronic communication devices such as tablets independently. these residents would require assistance with device operation from another individual. consequently, a surge in the use of telepractice for dysphagia management in nursing home settings was not observed during the covid- pandemic. however, telepractice may be considered for older adults who live at home with caregivers who could provide assistance with device operation. during the covid- pandemic, nursing home residents were as vulnerable as any other population, given their already fragile state. however, members of this population still required swallowing assessments and dysphagia management, regardless of their covid- status. however, many aspects were considered to minimise the risk of infection among residents and clinicians. this commentary has summarised the actions taken in this regard and may serve as a reference to clinicians who are responsible for swallowing assessments and dysphagia management. clinicians should also remain aware of all changes to guidelines on dysphagia management [ , , ] , for nursing homes [ ] or for certain clinical populations from other specialities [ ] . conflict of interest the authors declare that they have no conflict of interest. ethical approval and informed consent this article does not contain any studies with human participants performed by any of the authors. world health organization ( ) coronavirus disease (covid- ) pandemic covid- : towards controlling of a pandemic prevalence of dysphagia and adequacy of related care for elderly receiving residential care services in hong kong national survey of the prevalence of swallowing difficulty and tube feeding use as well as implementation of swallowing evaluation in long-term care settings in japan nursing homeacquired pneumonia, dysphagia and associated diseases in nursing home residents: a retrospective, cross-sectional study dysphagia in the elderly: management and nutritional considerations dysphagia: clinical management in adults and children. mosby masa, the mann assessment of swallowing ability to cough or not to cough? examining the potential utility of cough testing in the clinical evaluation of swallowing dysphagia in the elderly: focus on rehabilitation strategies dysphagia care across the continuum: a multidisciplinary dysphagia research society taskforce report of service-delivery during the covid- global pandemic moving forward with dysphagia care: implementing strategies during the covid- pandemic and beyond management of dysphagia in the patient with head and neck cancer during covid- pandemic: practical strategy royal college of s, language therapists c-ag. aerosol generating procedures, dysphagia assessment and covid- : a rapid review unique sars-cov- clusters causing a large covid- outbreak in hong kong shedding light on dysphagia associated with covid- : the what and why postintubation dysphagia during covid- outbreak-contemporary review validity and reliability of the eating assessment tool (eat- ) prevalence and associated factors of dysphagia in nursing home residents indicators of dysphagia in aged care facilities the long-term effects of covid- on dysphagia evaluation and treatment aerosol generating procedures, dysphagia assessment and covid- the reliability and validity of cervical auscultation in the diagnosis of dysphagia: a systematic review the effects of sensory stimulation on neurogenic oropharyngeal dysphagia impact of expiratory muscle strength training on voluntary cough and swallow function in parkinson disease expiratory muscle strength training for radiation-associated aspiration after head and neck cancer: a case series dysphagia in covid- -multilevel damage to the swallowing network? factors influencing the pace of food intake for nursing home residents with dementia: resident characteristics, staff mealtime assistance and environmental stimulation validity of conducting clinical dysphagia assessments for patients with normal to mild cognitive impairment via telerehabilitation training the allied health assistant for the telerehabilitation assessment of dysphagia centers for disease control and prevention (n.d.) preparing for covid- in nursing homes ) tracheotomy recommendations during the covid- pandemic publisher's note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations key: cord- -w lsg go authors: lee, minha; zhao, jun; sun, qianqian; pan, yixuan; zhou, weiyi; xiong, chenfeng; zhang, lei title: human mobility trends during the covid- pandemic in the united states date: - - journal: nan doi: nan sha: doc_id: cord_uid: w lsg go in march of this year, covid- was declared a pandemic and it continues to threaten public health. this global health crisis imposes limitations on daily movements, which have deteriorated every sector in our society. understanding public reactions to the virus and the non-pharmaceutical interventions should be of great help to fight covid- in a strategic way. we aim to provide tangible evidence of the human mobility trends by comparing the day-by-day variations across the u.s. large-scale public mobility at an aggregated level is observed by leveraging mobile device location data and the measures related to social distancing. our study captures spatial and temporal heterogeneity as well as the sociodemographic variations regarding the pandemic propagation and the non-pharmaceutical interventions. all mobility metrics adapted capture decreased public movements after the national emergency declaration. the population staying home has increased in all states and becomes more stable after the stay-at-home order with a smaller range of fluctuation. there exists overall mobility heterogeneity between the income or population density groups. the public had been taking active responses, voluntarily staying home more, to the in-state confirmed cases while the stay-at-home orders stabilize the variations. the study suggests that the public mobility trends conform with the government message urging to stay home. we anticipate our data-driven analysis offers integrated perspectives and serves as evidence to raise public awareness and, consequently, reinforce the importance of social distancing while assisting policymakers. historically, the first half of will be remembered for the global battle against an invisible enemy. since the emergence of the novel coronavirus in december in wuhan, china, the world is experiencing unprecedented phenomena. in march of this year, covid- was declared a pandemic by the world health organization (who), and emergency measures have been internationally implemented as the outbreak continues to threaten public health. as of april , , there were almost · million worldwide confirmed cases of covid- , with the united states accounting for over , cases, or around % of overall infections around the world. as a result, over american states have instituted stay-at-home orders, making quarantine and social distancing the new norm for the majority of the u.s. population. interdisciplinary research has been actively conducted to mitigate the spread of covid- and its adverse impacts on society. epidemiologic measurements have been explored to identify the dynamics of disease regarding the spread risk and the effect of human mobility. [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] in addition, since the mobility restrictions are considered as a critical factor to prevent the disease spread, studies have assessed its impact. [ ] [ ] [ ] [ ] [ ] [ ] nonpharmaceutical observations are also proven to be effective data sources to have an integrated perspective. especially big data allow for increased understanding of human behavior changes in response to the spread of the virus. one recent study captures the dissemination of covid- information in relation to the outbreak progression from crowdsourced data. other studies employing data-driven methodologies have also been introduced to estimate the negative impacts on various sectors such as the economy, public health, and human mobility. [ ] [ ] [ ] [ ] [ ] in particular, mobility data have been identified as being especially relevant and researchers have provided in-depth knowledge on how to leverage mobile device location data for analyzing covid- propagation. [ ] [ ] [ ] technology companies have presented insights on mobility trends by exploiting location data as well. [ ] [ ] [ ] as revealed from literature, there exists the importance of social distancing and timely decision on mobility interventions to slow the pandemic. the key factor to stop the virus is those classical approaches including social distancing, quarantine, and mobility interventions since no treatment is currently available. however, little is known about the gap between social distance advocacy and the actual practices among the general populace. there also has been scant research on public reactions to covid- as well as the interventions on mobility. realizing the urgent needs on understanding mobility trends amid the pandemic, as one of the pioneering big data-driven studies on covid- , we aim to quantify changes in human mobility to provide tangible and intuitive evidence on individual and governmental efforts to migrate the spread. the goal of the study is two-fold. first, we explore large-scale public mobility patterns and the existence of heterogeneity across the nation by leveraging mobile device location data. our study covers: temporal trend analysis before and after the emergence of covid- and mobility interventions; geospatial trend analysis at national and state levels in the u.s.; and groupwise comparisons regarding sociodemographic characteristics. second, we uncover potential research areas that can greatly contribute to the current and potential future matters with the observed evidence. while this paper does not intend to establish a complete guidance on how governments or similar bodies should respond, the hope is to share our observations and findings to provide an integrated perspective on the public mobility reactions before and during the pandemic. the university of maryland covid- impact analysis platform aggregates mobile device location data from more than million anonymized sample devices each month. the aggregated location data are then integrated with covid- case data from john hopkins university and census population data to monitor the mobility trends in united states. the metrics produced from the data are provided only in aggregated forms at the county, state, and national levels. the research team first integrates and preprocesses person and vehicle movement data to improve the quality of our mobile device location data panel, followed by the trip identification process ( figure ). second, location points are clustered into activity locations, while home and work locations are identified at census block group (cbg) level. third, additional trip information including trip origin, destination, departure time, and arrival time are identified based on previously developed and validated algorithms. the condition of staying at home is defined if an anonymized individual in the sample does not travel farther than one mile from home. in the next step, we expand the sample data to the population level by incorporating a multi-level weighting procedure to have results that represent the entire population in a nation, state, or county. the data sources and algorithms implemented are validated based on various datasets such as the national household travel survey (nhts) and american community survey (acs) and previously peer-reviewed by an external expert panel. lastly, mobility metrics are integrated with other data sources, such as covid- cases and population. table summarizes the metrics we adapt in this study while the whole set of metrics can be consulted in the platform. additional details of the methodology can be found in a separate paper by the authors. we explore the mobility variations regarding the covid- progression and government stay-at-home orders by applying the metrics that are closely related to social distancing. our trend analysis design can be categorized into three types: ) nationwide; ) statewide; and ) sociodemographic groupwise and the metrics applied are marked in table , respectively. the temporal range covers from january , to april , , while weekends are excluded to eliminate noises. the nationwide trends are examined by applying a -day moving average method for all mobility metrics. the statewide trends compare states with two types of timelines. the first is universal timelines: ) benchmark week (february -february ) and the most recent week (april -april ). all states are considered in these timelines. the second type is stay-at-home order timelines: ) one week before the order and ) one week after the order, which vary per state and are applied to states with the order implemented as of april . then the statewide trend analysis further evaluates the public reaction stability based on one measure, the percentage of people staying home, which we believe to have a high correlation with social distancing. the stability is measured with a variance, where a higher variance indicates lower stability. the sociodemographic groupwise comparison endeavors how these features influence the mobility patterns amid covid- . during the preliminary analysis, four features are considered: percentage of middle-aged population ( years old and over); percentage of elderly people ( years old and over); median household income; and population density in persons per mile of land area. states are classified into two groups by each feature (higher: states and lower: states). in this paper, the result section delivers two comparison results from the median income and population density groups, which show a notable clustering nature, whereas the other two age-related features do not. a large number of people have decreased their daily movements: the percentage of people staying home rapidly increases from % on normal days (benchmark week) to % after the outbreak (most recent week); out-ofcounty trips decreases from % to %; average trip distance drops from miles to miles; and number of trips per person decreases from · ( · non-work trips and · work trips) to · ( · non-work trips and · work trips) trips ( figure ). one can note that the mobility trends change rapidly around march when the national emergency is declared, which is indicated by a grey bar in figure , in accordance with the rapid increase of covid- cases. this observation could have occurred since the emergency declaration raised public awareness on the pandemic, helped the wider spread of the information related to covid- , and encouraged more people to reduce mobility. figure shows the percentage of people staying home in highest order on the x-axis, while states without the mandate are deemphasized by the grey shade. in the most recent week, the district of columbia maintains the highest rate of people staying home ( %), followed by new york ( %), and new jersey ( %). three states with the lowest rates are mississippi ( %), south carolina ( %), and arkansas ( %). in terms of changes between the week before and after the order, three states with highest increase are new jersey (+ %), new york (+ %), and illinois (+ %) as marked with a green box in figure . the lowest changes belong to kentucky (+ · %), maine (+ · %), and south carolina (- · %). the average percentage increase is + · % between one week after and one week before order. stay-at-home orders also result in trip distance reduction (figure ) . hawaii records the lowest miles traveled per person ( · mi.), followed by the district of columbia ( · mi.), and rhode island ( · mi.). three states with the highest miles traveled are wyoming ( · mi.), utah ( · mi.), and new mexico ( · mi.). the highest decline after the order is observed in illinois (- · mi.), california (- · mi.), and new jersey (- · mi.), which are marked with a green box in figure , while the lowest changes are found in missouri (+ · mi.), south carolina (+ · mi.), and pennsylvania (- · mi.). the stay-at-home order leads to four miles distance reduction on average. to further evaluate the public reaction stability, we choose the percentage of people staying home statistics. there emerges a larger temporal variance in the reactions of all the states after mid-march, possibly due to various spread status, while the average of populations staying home has become higher ( figure ). another approach applied is comparing the statewide public reaction stability based on two different pandemic stages. the first stage is between the temporal range from the date of the first covid- case confirmed to the stay-athome mandatory order issued in each state (figure (a) ). the second stage is after the order was released (figure (b) ). for states without the mandates, the first stage ends with our study period (the most recent week). in general, all states in the first stage show higher variances than in the second stage. it implies that the public had been taking active responses, voluntarily staying home more, to the in-state confirmed cases even before mandatory orders were issued. the stay-at-home mandates are observed to be closely stabilizing the statewide movements. sociodemographic groupwise trends next, we further demonstrate the mobility trends featured by sociodemographic groups. median income level and population density show a notable clustering nature, which we choose to deliver in this paper. it is of great importance to mention that any features should not be singled out as the only contributing factor without theoretical grounds and rigorous research. yet, several interesting findings are observed in relation to covid- . figure (b) demonstrates miles traveled per person in the order of population density (lower). the mobility pattern gradually becomes distinguishable between the two groups upon the covid- outbreak. until the national emergency declared on march (grey line), states share a relatively homogeneous staying home trend regardless of the sociodemographic features, while one can pinpoint a more distinctive trend thereafter. the higher income group tends to present a higher staying-at-home ratio and higher density group present lower trip distance after the outbreak. even though the income level or population density may not be the only factors that affect the mobility trend, there exists overall heterogeneity between the groups. figure illustrates groupwise mobility patterns in three measures. one point to note is that two income groups exchange their trip distance trend around mid-march (grey bar) (figure (a) ). the high-income states tend to travel longer distances before the pandemic, while the low-income group surpasses later. the higher income group tends to stay at home slightly more before the outbreak, but the gap becomes more notable afterwards. the percentage of out-of-county trips relatively stays similar between groups. however, the high-income group traveled slightly more to out-of-county locations, whereas the difference becomes obscure after mid-march. the percentage of people staying home trend also exhibits a similar pattern until mid-march (grey bar) between two population density groups (figure (b) ). afterwards, the higher density group reduces their mobility noticeably. one might assume that the higher chances of contacting other people in the higher density area result in practicing social distancing more actively. both before and after the outbreak, the lower density states sustain higher miles traveled and lower out-of-country trip rates. different from income comparison, no metrics exchange the trends and, instead, the gaps in miles traveled and out-of-county trips are more noticeable between the groups throughout the whole study period. understanding public reactions to the virus and the non-pharmaceutical interventions should be of great help to fight covid- in a strategic way. in order to provide an integrated perspective on public reactions related to the pandemic propagation and the non-pharmaceutical interventions, we examine the day-by-day mobility variations across the u.s. by leveraging mobile device location data and the measures related to social distancing. while data-driven study we conduct shows the mobility patterns for the general public, we would like to introduce an additional potential research area that utilizes the mobility measures as an open discussion. a teleworking rate is another important measure to reveal how many employees have been impacted from covid- . as discussed, the work trip rates decrease amid the pandemic (- · work trips per person) resulting from both teleworking and unemployment increase. here we attempt to understand the increased rate of people staying home whether it is due to teleworking or unemployment by estimating the teleworking rate. this estimate is based on the work trip frequency per person and weekly unemployment claims from the united states department of labor. for this demonstration, we first divide employees into two categories: teleworkers and commuters. their initial relative ratio is estimated per state based on the american community survey (acs) report. total number of employees ( + ) in the benchmark week are obtained based on the weekly unemployment claims. commuters in the benchmark week are estimated as the product of commuter ratio and total employees. assuming that the work trip rate per person is consistent within a short time period, we calculate the number of commuters by dividing the number of work trips by the work trip rate per person. then, the number of teleworkers per week is estimated ( − − ) with an assumption that there is no additional weekly employment during covid- . here, the number of weekly unemployed populations are estimated based on the unemployment claims. despite our naive approach and assumptions, the estimates still conform with the pandemic circumstances. the teleworking rate starts to increase around mid-march complying with the sharp increase in covid- cases, in which the baseline is set on the week of march ( figure ). as of april , the number of employees working from home increases by %, compared to the baseline week. the teleworking rate in some states stops increasing and even decreases in april. two possible assumptions account for this trend: employees who no longer conduct teleworking and work on site or are no longer hired. one drawback to our estimation is that it does not separate the population who are on a break from teleworkers, which is the possible reason for the higher teleworking rate in the first week of january. overall, we anticipate more research is invited to scrutinize this teleworking trend regarding covid- and rapidly inclining unemployment rates, which marks the highest increase in the seasonally adjusted series report history. in addition, as the teleworking trend has not been observed to this extreme extent before, further research will help provide essential evidence on the economic crisis. based upon the noticeable degree of mobility trend alteration at a nation level, our study provides more detailed evidence on the mobility shifts from the statewide and groupwise comparison. evidenced by our measures, a large number of populations have decreased their daily movements during the pandemic. this may suggest that the government message urging to stay home conforms with the public mobility behavior. our findings can be summarized as follows, which are closely related to social distancing trends: • the nationwide mobility has reduced amid the pandemic observed by all metrics; • the declaration of the national emergency with the rapid increase in covid- cases can be perceived as a significant stimulus to the increase in people staying home and decrease in mobility; • the public has been taking active responses, voluntarily staying home more, to the in-state confirmed cases while the stay-at-home mandates stabilize the staying-at-home population with a smaller range of fluctuation; • even though the income level or population density may not be the only factors that affect the mobility trend, there exists overall heterogeneity between the groups; • income groups exchange the trend of miles-traveled-per-person measure, such that the higher income group tends to travel longer distance before the pandemic while the low-income group surpasses the trend afterwards; • both before and after the outbreak, the lower density states sustain higher miles traveled and lower outof-country trip rates and no metrics exchange the trends between density groups; and • the gaps in miles traveled and out-of-county trips are more noticeable between the population density groups throughout the whole study period, compared to the income groups. one limitation in our study is that we are not certain at which pandemic stages of the public mobility reactions are demonstrated. this part can be explained when the pandemic vanishes, hopefully in near future. now with many more weeks into the pandemic from the study period, there could be an opportunity to find relationships between the plateau of confirmed cases and that of social distancing trends. in addition, as we observe the clear evidence on social distancing efforts, a rigorous modeling approach will be necessary to quantify the social distancing trends and to analyze the reasons behind. also, our observation could be also integrated with the pharmaceutical modeling research. while carefully suggesting the potential and necessary research areas that can greatly help the current and potential future matters, we anticipate our data-driven analysis offers integrated insights on human mobility trends regarding the pandemic circumstances. this study could serve as evidence to raise public awareness and, consequently, reinforce the importance of social distancing while assisting policymakers. a pneumonia outbreak associated with a new coronavirus of probable bat origin an investigation of transmission control measures during the first days of the covid- epidemic in china the effect of human mobility and control measures on the covid- epidemic in china assessing the global tendency of covid- outbreak assessing spread risk of wuhan novel coronavirus within and beyond china estimating the scale of covid- epidemic in the united states: simulations based on air traffic directly from wuhan nowcasting and forecasting the potential domestic and international spread of the -ncov outbreak originating in wuhan, china: a modelling study early transmission dynamics in wuhan, china, of novel coronavirus-infected pneumonia projecting the transmission dynamics of sars-cov- through the postpandemic period the effect of travel restrictions on the spread of the novel coronavirus (covid- ) outbreak scientific and ethical basis for social-distancing interventions against covid- quantifying sars-cov- transmission suggests epidemic control with digital contact tracing feasibility of controlling covid- outbreaks by isolation of cases and contacts modified seir and ai prediction of the epidemics trend of covid- in china under public health interventions the effectiveness of the quarantine of wuhan city against the corona virus disease (covid- ): a well-mixed seir model analysis early epidemiological analysis of the coronavirus disease outbreak based on crowdsourced data: a population-level observational study effectiveness of social distancing strategies for protecting a community from a pandemic with a data-driven contact network based on census and realworld mobility data how does household spending respond to an epidemic? consumption during the covid- pandemic psychological correlates of news monitoring, social distancing, disinfecting, and hoarding behaviors among us adolescents during the covid- pandemic world-wide covid- outbreak data analysis and prediction infodemic" and emerging issues through a data lens: the case of china aggregated mobility data could help fight covid- mobile phone data and covid- : missing an opportunity? arxiv open data resources for fighting covid- mobility trends reports see how your community is moving around differently due to covid- social distancing scoreboard university of maryland covid- impact analysis platform data analytics and modeling methods for tracking and predicting origindestination travel trends based on mobile device data. federal highway administration exploratory advanced research program an interactive covid- mobility impact and social distancing analysis platform an interactive web-based dashboard to track covid- in real time unemployment insurance weekly claims report, united states department of labor unemployment insurance weekly claims data, united states department of labor we would like to thank and acknowledge our partners and data sources in this effort: ( ) amazon web service and its senior solutions architect, jianjun xu, for providing cloud computing and technical support; ( ) computational algorithms developed and validated in a previous usdot federal highway administration's exploratory advanced research program project; ( ) partial financial support from the u.s. department of transportation's bureau of transportation statistics; and ( ) mobile device location data from several data provider partners. key: cord- -nsdequl authors: taiwo, olutosin; ezugwu, absalom e. title: smart healthcare support for remote patient monitoring during covid- quarantine date: - - journal: inform med unlocked doi: . /j.imu. . sha: doc_id: cord_uid: nsdequl social distancing and quarantining are now standard practices which are implemented worldwide since the outbreak of the novel coronavirus (covid- ) disease pandemic in . due to the full acceptance of the above control practices, frequent hospital contact visits are being discouraged. however, there are people whose physiological vital needs still require routine monitoring for improved healthy living. interestingly, with the recent technological advancements in the areas of internet of things (iot) technology, smart home automation, and healthcare systems, contact-based hospital visits are now regarded as non-obligatory. to this end, a remote smart home healthcare support system (shhes) is proposed for monitoring patients’ health status and receiving doctors’ prescriptions while staying at home. besides this, doctors can also carry out the diagnosis of ailments using the data collected remotely from the patient. an android based mobile application that interfaces with a web-based application is implemented for efficient patients-doctors dual real-time communication. sensors are incorporated in the system for automatic capturing of physiological health parameters of patients. also, a hyperspace analogue to context (hac) was incorporated into the current monitoring framework for service discovery and context change in the home environment towards accurate readings of the physiological parameters and improved system performance. with the proposed system, patients can be remotely monitored from their homes, and can also live a more comfortable life through the use of some features of smart home automation devices on their phones. therefore, one main significant contribution of this study is that patients in self-isolation or self-quarantine can use the new platform to send daily health symptoms and challenges to doctors via their mobile phones. thus, improved healthy living and a comfortable lifestyle can still be achieved even during such a problematic period of the covid- pandemic that has already recorded , , million cases so far with , thousand deaths globally. independent and convenient, healthy living is the aim of any human being no matter their age, gender, location or health status. however, there are limitations due to age, illness, medication, hospitalization, epidemic, pandemic and other circumstances. health monitoring systems have evolved to assist convenient healthy living, more accessible communication between healthcare givers and patients for close monitoring, measurement of vital health parameters, routine consultation and overall healthy living. moreover, with the recent advances in information and communication technologies (ict) through the adoption of internet of things (iot) technology, smart health monitoring and support systems now have a higher edge of development and acceptability for enhanced healthy living. the study conducted by zikali [ ] , revealed that with the rapid increase in the population of older or senior citizens, patients who require health monitoring have also increased exponentially. the same study predicts that by the year the number of senior citizens who are considered the most vulnerable in society will exceed the number of children and young adults as a recent population census shows an increase in older people. however, a shortage of home health helpers, nursing assistants and home healthcare givers is looming worldwide, which makes care for the elderly expensive. therefore, a health monitoring system can play a vital role in lessening physical contact, hospitalization, consultation time, queuing list and overall health cost for a patient while also reducing workload, burden and stress on medical staff [ ] . advancements in information and communication technologies for connectivity anywhere and anytime make a valuable contribution to the development of the modern healthcare system utilized in telemedicine solutions and other portable medical platforms. the advent of smart home technologies proposes healthy living and improved quality of healthcare support services for the elderly and handicapped for independent and comfortable lifestyles while at home, instead of nursing homes, hospitals or other confinement facilities. the healthcare module, as a part of the smart home automation system, will improve healthcare facilities for patients while at home or in remote locations outside the hospitals. thus, there is a reduction in depression that arises from loneliness in the hospital wards for patients. the doctors can monitor patients from their office, prescribe medication and view measured vital health parameters for a remote diagnosis. also, the rapid improvement of software and hardware technologies in the smart home healthcare system, makes it possible for patients, especially the elderly or disabled, to control certain home appliances with ease from devices such as smartphones, tablets, laptops, internet, etc. a smart home healthcare environment comprises of numerous computing devices acting proactively on behalf of users, thereby making such an environment pervasive. therefore, for decision making in a smart home healthcare environment, user context and preferences are some of the vital features to be considered for the user to make any choice of interest among available resources and services in any given situation [ ] . also, the context-aware paradigm gives an insight into some factors within the home that influence the output of physiological readings. these factors are explained in this paper. the user context refers to any information that could be used to describe the situation of an entity (person) concerning their physiological medical status or needs. in this paper, we propose a mobile application-based prototype smart home healthcare system for efficient and effective health monitoring for the elderly and disabled for their convenient and independent living while at home. a section of the proposed system allows the patient to remotely upload or capture essential health symptoms information during an era of a pandemic such as the ongoing covid- disease for their doctor's assisted diagnosis. the new healthcare support system measures and records specific health parameters such as weight, pulse, blood pressure, glucose level and body temperature. also, it assists with the control of a few home appliances for the conducive home living of the user. this system is also designed to send a reminder to patients on the use of certain medications with input supplied by the user. an algorithm was developed based on hyperspace analogue context (hac) for a pervasive environment, to address the need for choice for the user among numerous devices placed in the smart home healthcare system. the technical contributions of this paper are as follows: • a proposal for a smart health support system for remote patients monitoring during quarantines. • implementation of iot based smart home healthcare support framework capable of reducing unnecessary burdens on the hospitals due to disease outbreak. mainly, the new system which is also able to provide essential comforts using the iots enabled home appliances only, encourages patients with severe and critical conditions to utilize hospital facilities. • extraction and interpretation of patient's health data from wearable, built-in, and mobile sensors for medical diagnoses and prescriptions. the remainder of this paper is organized as follows: section provides the review of related works and overview of health monitoring support systems, section discusses the proposed system motivation, conceptualization, and design methodology, while in section , the details of the new smart healthcare support system implementation are discussed. finally, section provides concluding remarks, recommendations, and future directions. advances in the development of smart home automation technologies and e-healthcare systems allow people to enjoy in-home medical services without staying in hospitals. remote health monitoring of patients through home health care technologies assists healthcare givers, medical personnel and physicians to reach out to patients without physical contact or presence of patients at clinics or hospitals. health care technologies also save cost, expenditure and stress for patients as they do not need to travel before seeing their healthcare givers or medical personnel. there have been many published articles in the area of smart health care system, e-health and remote healthcare. authors in [ ] proposed an e-health care system for monitoring patients' vital physiological parameters by doctors from any location. the proposed system is capable of collecting the required data from the patient and making it available and visible to the doctor for action. the web application is a feature of the system that allows the doctor to record the patient's information, input notes for advice, prescription and dosage of drugs while also allowing the patient to key in measured psychological parameter values and display of information received from the doctor. smart tv application was used for reminding patients daily about their activities, medications and other events. lastly, the system has the feature of a mobile application with the same functionality as the web application but with an added advantage of access from anywhere and at any time. sparsh and agarwal [ ] described a remote health monitoring system for the collection of blood pressure values from patients through mobile phones. values recorded on mobile phones are supplied and displayed to doctors or caregivers through the web interface in the system. doctors can monitor and manage the patient's condition through the system and provide feedback to the patient remotely. a secure iot based modern healthcare system using body sensor network (bsn) referred to as bsn-care was proposed by authors in [ ] . the proposed system measures and monitors physiological parameters such as blood pressure, electrocardiogram (ecg), and electroencephalography conditions in the body through wearable sensors. the values of measured parameters are collected and sent to the local processing unit, which is also the coordinator of the system. data received by the bsn-care server from the body of the patient are fed into the database for analysis. based on the analysis and degree of abnormality in the values, the system alerts either the family member, local physician or emergency unit contact of the patient. the system is secured using a lightweight anonymous authentication protocol, which confirms the identity of anyone using the bsn-care server. for privacy, data integrity and data freshness, the offset codebook (ocb) authentication encryption scheme was used. minh pham et al. [ ] presented a cloud-based smart home environment named coshe for a home healthcare wearable unit, a private cloud and robot assistant. the coshe system collects physiological, motion and audio signals from residents thorough non-invasive wearable sensors and thus provides information about the daily activities and location of residents in the home. comprehensive health data are provided to caregivers and caretakers through a web application built on the cloud server of the system. the system also has a hydration monitoring application for continuous monitoring of water consumption levels and daily fluid requirements of the patient. hydration monitoring is achieved by the use of acoustic data collected from microphones and body activity context derived from a smartwatch accelerometer in the system. a smart home integrated system that runs on an android operating system, for ambient assisted living for people living with dementia, was presented by eren demir [ ] . the design of the system allows the collection, recording and transmission of data through cloud application. the system involves seven types of sensors to detect a person's position, whether standing or sitting, flame detection and use of specified appliances in the home. also, the sensors remind or alert the patient if he or she forgets to carry out specific tasks in time. a switch is also installed in the system to detect if the light is on or off. the system is also designed to identify the activities of patients and send information to the doctor or caregiver. data are retrieved from different sensors placed in specific locations in the home for processing. bilal and khaled [ ] proposed a wireless remote-control home automation system for the elderly, handicapped, decrepit and disabled persons. the system was designed for easy movement, control and monitoring of essential home appliances for people with locomotion difficulty. users of the system can control or monitor appliances through a remote control device that sends orders wirelessly using xbee trans-receivers. features of the remote control are control buttons for different appliances and lcd for message notifications. the proposed system was implemented using a wooden prototype version. min chen et al. [ ] proposed an e-healthcare management system based on a secondgeneration rfid system. the system for monitoring the medical condition of the patient, communication between the patient and the doctor or health caregiver as the case may be is through video conferencing calls via the internet. the system is also capable of information collection and transformation for medical emergencies handling. physiological signals such as temperature, blood rate and heart rate are obtained from the patient through a body sensor attached to a particular part of the patient's body. the system also maintains a healthcare database of the user's profile and medical history. andrea et al. [ ] proposed a smart sensing technique based on an integrated sensor network for monitoring the user's home and environment in order to derive information about the user's health status and behaviour. the authors' proposed platform includes sensors that are biomedical, wearable and unobtrusive for monitoring physiological parameters such as ecg, heart rate, breathing waveform, breathing rate, blood pressure and so on. an application on a smart device such as a tablet was proposed for the user's interaction with the sensors. data collected through the application are further sent to the cloud for storage and data analytics towards services for the elderly. moreover, abdelsalam et al. [ ] designed a smart home-based software architecture for assisted monitoring of diabetic patients. the system is intended to monitor activity, diet and exercise compliance of patients and evaluates the effect of alternative medicine and regimen through personal connected devices and smart home technologies. wearable devices are used as connectivity to technology in the architecture. an android smartphone application for elderly, assisted independent living at home was developed by muhammad et al. [ ] . the application tracks and monitors the daily activities of the user and serves as a reminder for the scheduled activities of the patient. the system also gives alerts in case of incomplete, critical and overlooked scheduled activities. other functions and actions performed by the system include tracking of environmental conditions (humidity, temperature, location and gas leakage), giving details of the patient's activity list and reminders to family members and healthcare givers. hossain [ ] proposed a smart home healthcare system to fulfil the needs of older adults for continued care. the patient's health condition is monitored through the use of multimodal inputs (speech and video) in the proposed system. videos and speeches of the patient are captured continuously through sensors from video cameras, and microphones installed in the home, transmitted to a dedicated cloud for processing, and classification scores are produced. doctors prescribe and render services through audio or video messages depending on the outcome of the classification score, whether normal, tensed or in pain. saiteja et al. [ ] proposed a smart home health monitoring system for remote monitoring of diabetes and blood pressure in patients. the system assists in analysing the patient's blood pressure and glucose readings from home, sending a notification to the caregiver or healthcare provider if an abnormality is detected and also predicting the status of hypertension and diabetes in patients by training results obtained from the readings. for the model training, support vector machine classification was employed to provide effective and efficient training task. also, the system is capable of sending alerts and real-time notifications from home about the patient's health to a registered physician or clinic. kashif et al. [ ] developed a smart home system based on information and communication technologies (ict) for the elderly, using an android platform. the system was developed to improve the quality of life for elderly persons, prevent electricity wastage and preserve human energy simultaneously through remote access. the system also controls environmental parameters according to the health status and living needs of the elderly and triggers alerts in the case of intrusion and home invasion. the provision of services through assisted means enables a comfortable and convenient lifestyle. the primary role of any smart home automation system is to assist users in remotely controlling and monitoring appliances. with this in mind, we are motivated to develop a system that not only controls and monitors the home but also supports an improved healthy lifestyle of users. smart home automation as an emerging area of iot has been applied in various areas such as: easy and assisted daily living especially for the provision of support to humans [ ] , remote control of home appliances [ , ] , detection of movement in the house [ ] , energy management in the home [ ] and security [ ] , and provision of healthcare services to out-patients, disabled and elderly persons [ , , ] . however, the design of a system for both health monitoring and home control is yet to be fully explored. considering this, we look at a scenario whereby john has just been discharged from the hospital but still needs his physiological vitals monitored closely by his doctor, and he is advised to bed-rest at home. for john to enjoy being at home, he needs some convenience, such as putting on the television while lying on the bed, and controlling a fan or light while still in bed. we decided to aid people in john's condition by proposing a smart homehealthcare automation system. the proposed system monitors and records physiological parameters in a module, sends recorded parameters to the doctor and controls the home as well. the second motivation comes from the pandemic currently ravaging the globe. social distancing, less physical contact and staying at home orders are issued by the government to control the spread of the virus. people who have been in contact with positively tested individuals, but who are not showing symptoms, are also counselled to self-isolate or selfquarantine for some days. positive patients with mild symptoms are advised to observe quarantine. the self-isolation or quarantine can be observed from home while the affected person sends signs or symptoms of any ailment observed to the doctor at regular intervals. to this end, we are motivated to broaden the scope of the smart home healthcare system to accommodate the upload of symptoms affected by covid- from the comfort of their respective homes. there may be some instances whereby the user might need to change his position in the house, increase or decrease the home temperature, and other environmental factors that might affect the physiological parameters recorded. to address the external factors that influence the values of the physiological readings, we build on the discovery approach used by authors in [ ] . the approach is based on hyperspace analogue to context (hac) in a pervasive environment. the hac concept implemented for the current study is discussed below. in smart home-healthcare, hac is a formal model to define the multi-dimensional context in space [ ] healthcare in a smart home comprises different elements such as the user, location of the user, his activities, environmental conditions and other related parameters. to adequately understand the correlation between the user and his activities, context is required. according to [ ] , context is any information that can be used to describe the situation of an entity. dimensions for hac are formed based on specific context types. due to the complexity of a pervasive environment, the number of dimensions may be large [ ] . for our work, the significant fractions of applicable dimensions are used, as indicated in most context descriptions. the major context used to describe the situation of the user are location, time, physiological condition, activity and atmospheric and environmental conditions. to get an accurate value of a specific physiological parameter such as blood pressure, the position of the patient is of significant consideration. for instance, it is not recommended to take the readings of blood pressure while standing. position influences the values obtained either on the systolic or diastolic value. therefore, the recommended position is sitting straight up or lying down comfortably [ ] . location can also be added to the position to effectively record the range of the value. time influences the results and conclusions of doctors for prescription of medications. time describes activity happening and surrounding. some medications or prescriptions are recommended to be taken with breakfast and others at night. if a patient misses the right time for taking a specific dosage, it may trigger some health conditions which the doctor will need to consider before concluding the patient's health condition. weather and indoor environmental conditions, for example, absolute humidity and temperature influence physiological conditions of the patient in so many ways. a patient might have a high fever yet his body temperature has a reading that falls within the normal range during the winter season. at the same time, a patient without a high fever might have a high trigger in his body temperature when readings are taken in a hot environment or a closed room with a heater on. therefore, atmospheric conditions must be taken into consideration for a better summary of the health of a patient. subsequently, we now present some significant definition of terminologies used in this study concerning service discovery and context change relative to the hac. definition (n-dimensional hac): a n-dimensional hac is a space =< , ,⋅⋅⋅ , > where represents each dimension as a type of context. dimension in hac refers to an informative label used to describe other data in the space alongside their type and value set for a specific context. examples are time, physiological condition, location and position. the values of a dimension can be continuous or discrete, depending on the data type [ ] . this work will take into consideration blood pressure with a normal value range between / mhg and / mhg, and normal sugar level values between and mg/dl. > where ∈ . the context of a device or appliance in the home is described as a point in hac. in our work, the context of john may be< = , = !" >, where #$ denotes blood pressure; when the bp value is not within an expected range, it can be put as < = %&" , = "' !" >. a context scope ( is a subspace in , ( =< ) , ) , ⋯ ) >, where ) ⊆ . a context scope limits the value sets for the dimensions. it is mostly used to describe a condition. for example, < ) ℬ,-= . , , ⋯ , , ) ℬ,) = . , , ⋯ , >, where ) ℬ,-describes the systolic value for normal blood pressure and ) ℬ,) describes the normal diastolic value of blood pressure readings. blood pressure has both upper and lower bound values measured in units of millimetres of mercury (mmhg). the readings are always given in pairs with the upper bound (systolic) value first, followed by the lower bound (diastolic) value. movement of a patient must be taken into consideration in addition to monitoring and measurement of physiological parameters. important information about a patient's health condition can also be derived by monitoring the walking pattern [ ] . to denote the movement operation of a patient in the home concerning health influencing factors, context change is required. the context change is an operation to change a context point. it is defined as × ∆ =< ∆ , ∆ , ⋯ , >, ∆ denotes the new value for a dimension, = × ∆ . if does not change, ∆ = ∅. the above definitions are applied to our shhes environment for detecting the factors that can influence the output of measured physiological parameters. for instance, if the indoor temperature of the home is high, it might affect the body temperature of the patient. likewise, if a patient is in a standing position while blood pressure is being measured, the corresponding value of the measured blood pressure might be high either on the systolic or diastolic readings. to further apply the hac contexts in our work, an algorithm (algorithm ) was developed on steps to consider these factors in order to get actual readings and for diagnosis by the doctor. with the advent of the iot, remote health monitoring, consultations and prescription have been made a reality while patients are at home. iot technologies have made medical equipment smart; examples are sensors, actuators, microcontrollers and boards that have made it easier for doctors to have the patient's data and oversee their health without a visit to the hospital. on the patients' side, it has greatly assisted in stress reduction as patients do not need to waste time in queues in hospitals, and again, they can send and receive information from their doctors through iot enabled systems for health monitoring. furthermore, the physiological parameters of patients can be measured and transmitted to the database for a doctor's perusal towards clinical diagnosis and advice on treatment. in this covid- era experienced globally, infected patients and people in contact with the infected patients are counselled to self-isolate or quarantine depending on the level of infection. we propose a smart home health monitoring system referred to as shhes in this paper. the proposed system described in our work is intended to perform a dual function of controlling home appliances as well as monitoring and recording the patient's physiological data such as blood pressure, body temperature, pulse rate, body weight and sugar level and other symptoms related to a specific virus. the values of measured physiological parameters are keyed into the system wirelessly through sensors or manually by the caregiver for transmission to the doctor. the main aim of the system is to assist out-patients and patients in prescribed isolation to live a comfortable life at home and reduce the stress of visiting hospitals often before consultation with their doctors. disabled and older adults are also factored into consideration of our system as the system is designed for comfortable daily living in the home. in our proposed system, the home is remotely controlled through a developed mobile application installed on a smartphone, and the user can also communicate with his doctor through another module in the same application. medical conditions, such as chronic hypertension and diabetes, were used as the focus of our design. the system takes into consideration the role of family member or caregiver who will be responsible for helping the patient while at home. hence, the proposed system has three major users: patient, doctor and home caregiver. in the proposed system, patients can upload values of physiological health parameters, chat with doctors, leave a message and book an appointment. figure shows the architecture of the proposed system design. the architecture includes the home appliances, smartphone, sensors, actuators, wi-fi module, and an arduino board, which serves as the microcontroller. in the system, sensors are installed for measurement of the indoor temperature or humidity levels, and detection of motion and smoke. in our work, communication between the user and the home is wireless. the arduino microcontroller collects data from various sensors, home appliances and physiological devices through the esp wireless module and transmits it over the internet to the user. the user receives and sends commands to the home through the developed android mobile application to the microcontroller for necessary actions. the selected controlled area for the work is a room in the house. features to be controlled by the application are the temperature, cooling system and other basic home appliances like the light switch and television. for temperature control of the home, the desired temperature is entered by the user through the developed mobile application and saved in the memory unit of the arduino microcontroller. the temperature is measured using the dht humidity and temperature sensor. the arduino continuously reads the temperature and compares it with the value inserted by the user; if the value measured by the system is lower than the desired value given as input by the user, a notification is sent to the user, and the system automatically puts on the heater to make the area warm. if the measured value is higher than the user's desired value, the fan is automatically turned on, and a notification is also sent to the user via the mobile application. for control of other appliances in the home, the user selects the desired appliance he wants to control on the mobile application and a signal is sent to the arduino microcontroller for necessary action on the appliance. the communication between the user, the devices and appliances is wireless using the esp wi-fi module. the user's physiological parameters are measured manually using conventional equipment such as a sphygmomanometer for blood pressure, a thermometer for body temperature and a glucometer for sugar level, with the assistance of the healthcare or family member caregiver at home. the values of the measured parameters and symptoms of the virus are sent to the doctor via the internet. the values are stored in the created database for the developed system and the doctor views the parameters and other information from the patient such as message, chat and complaints through the developed web application. on the other hand, the physiological body parameters can be obtained through the use of body sensors and the values are received wirelessly by the microcontroller. if the measured parameters received are not within the normal specified range as discussed earlier, our algorithm is used to perform basic checks using the hac context types. the microcontroller sends the received values to the database and the values are then transmitted over the internet to the doctor for further diagnosis. the doctor communicates with the patient via the mobile application by placing a call, leaving a message or using the chat box option on the platform. several devices are involved in iot systems, thus the need for a gateway that serves as a means of integration between the devices in the system and communication modules. home appliances are connected to the arduino board for control through relay pins on the board. also, data generated from the smart sensors used for measuring physiological parameters of the patient are sent to the database and from there transmitted over the internet to the doctor for action. the doctor also communicates with the patient by sending information through the internet. steps involved in the operations of the smart home healthcare system are stated in algorithm . the algorithm works based on the hac definitions to perform necessary actions for accurate readings. if the readings do not fall within the expected range, context change, position and other factors in the hac are put into consideration for subsequent readings. the following terminologies are used: • ha stands for home appliances. • : ; stands for network connectivity • hc stands for home control • pd stands for physiological devices • pd stands for blood pressure devices with the range as < ) ℬ,-= . , , ⋯ , ) ℬ,) = . , , ⋯ >. • pd stands for sugar level device with the range between to mg/dl • pd stands for temperature device with the range between . ℃ and . ℃ as presented in the architecture, the proposed smart home healthcare system has both user's and doctor's sides. at the user side, two main parties are involved: registered user and the family member responsible for overseeing and taking care of the patient at home. the user (patient) can perform the following basic functions on the system after successful registration: • control home devices • check for medication and prescription • send symptoms of the virus to the doctor while under isolation • chat with the doctor or leave a message • enter physiological values of measured parameters manually • book appointment with the doctor • view medical data. the role of the family member in the system is to assist the patient with uploading and retrieval of information when necessary, communication with the doctor on behalf of the patient, and also use the application for home control. the doctor, after successful registration and login, can communicate with the patient either by chats or message, view messages from patients, prescribe medications, diagnose any ailment from the received physiological vitals and provide other medical consultations. hardware components of the system include the following: sensors: body temperature sensor, blood pressure sensor, pulse rate sensor, etc. are used in the system for collection of data from the patient's body and transmitted wirelessly to the microcontroller via the home network gateway for storage in the database and forwarding to the doctor over the internet. the body sensors are used to ease the stress of manual input. arduino board: microcontroller oversees the functionality of the system. iot appliances and devices are connected to the arduino board for collection and transmission of data within the system and also to the mobile application for home control. with the digital pins present in boards, home appliances settings are relayed and hence controlled. the functionality of home appliances is highly dependent on boards. gateway: several iot devices are involved in this system. to this end, we decided to use a gateway to unify the communication of devices. the gateway serves as an intermediary between the home appliances, the microcontroller and the internet. the major role of the gateway is the unification of network connection from various devices. the proposed system is to be used through the mobile application and the web-based application. patients connect with home appliance and doctor through the mobile application to carry out the functions previously highlighted. the patient's physiological parameters are sent to the doctor automatically with the aid of body sensors deployed for capturing the values or are sent via manual input of values on the mobile application platform. with the help of service discovery explained through hac earlier, the performance of services in the home are displayed, changes can be discovered and results reflected in the system. the android studio integrated development environment was used for designing and developing the android mobile application for the control of home appliances, health devices and communication with the doctor from home. figure shows the home page of the designed mobile application. the user can gain access to the mobile application by registering on the application; after successful registration, access can be gained to login ( figure ) and then directed to the desired page either as patient or family member depending on the information submitted. the user registers home appliances to be controlled, and there is an option to add more appliances for future purposes. after the registration of devices, home appliances that can be controlled are displayed (figure ) . the application is designed to allow manual input data in case the sensors irritate the patient's body, and automatic measurement of physiological conditions is not possible. for automatic capturing of health data, the user will click on the parameter to send while on the health parameter page. the health interface of the mobile application allows the user to perform functions like chatting, leave a message or check the prescription of previous medication from the doctor ( figure ) . also, the mobile application can be used to communicate with the doctor concerning covid- diagnoses, especially when the patient is observing self-isolation at home or government obligatory quarantine. specific symptoms are monitored and checked at intervals and sent to the doctor with the range of the readings (figure ) . a response is received after the patient has successfully keyed-in the values and responses for the covid- symptoms. the application is designed to analyse the input received and give a response for the next action to be taken by the patient. colour code red means the patient should report to the nearest hospital or covid- treatment facility with immediate effect, an orange colour indicates that the patient is exhibiting above % of covid- symptoms and should be screened and further tested as soon as possible, a yellow colour indicates that the patient is exhibiting very mild symptoms of the virus and hence should continue to self-isolate and avoid contact with people while the green colour indicates that the patient is not showing any symptoms at all. based on the input received in figure , figure shows a mild indication and the necessary action to be taken by the patient. the doctor will further advise and prescribe necessary medications based on the parameters received at the doctor's end. from the doctor's side, a web-based application was designed which can be managed by an administrator. users and family members are to register with the doctor to have their data in the database similar to the hospital filing system. the doctor and administrator are the major users of the web application. it is designed for monitoring patients' health, delivery of services such as consultations, prescriptions, evaluation of physiological values for diagnosis, treatment or further directive on medical tests required. the system is designed for the doctor to manage as many patients that are registered on the platform. for the creation of a portal for the user, user supply information such as id number, sex, blood group, genotype and other vital details are recorded on the system. the interfaces for the web application are shown in the figures below. figure shows the interface of the web application giving an overview of what the application is all about. after successful registration, the login page of the doctor is displayed in figure , while figure shows the doctor's page in the application. a family member taking care of the patient from home also needs to register with the doctor and have their records in the database since he or she has the assigned role of communicating with the doctor on the patient's behalf ( figure ). in summary, the main goal of the developed hybrid smart healthcare based android mobile web application framework discussed in this paper serves the vast purpose of enabling remote monitoring of patients concerning those diseases that might require constant visits to the hospitals even though such diseases can be diagnosed and treated remotely by doctors. the proposed mobile application similarly offers features that can monitor the patient's condition in real-time, which can help reduce hospital costs and most importantly protect the hospital against any further exposure of patients to highly contagious diseases, especially during a pandemic like the covid- where most hospitals are grappling with high numbers of patients. the application of internet of things in smart home automation has led to a great deal of improvement in convenient living, remote access to home appliances, mobile health care and improved social lifestyle primarily for senior citizens. combining home automation with the healthcare system helps alleviate stress, reduces the cost of living and gives room for remote communication between doctors and patients. in this work, we have proposed a smart home health care system for the sick, elderly and handicapped. the current work was focused mainly on making life more convenient for those with health challenges who need to visit the hospital regularly. the new system has been developed in order to reduce the number of hospital visits, queues in the hospital and reduction in the cost of taking care of the sick. the system performs a dual role of both health monitoring and control of essential home appliances; with this, users can enjoy social life and still have their health managed and monitored especially during an era of the pandemic. the proposed method will have a great impact on the quality of life by reducing the transmission rate of communicable diseases. patients diagnosed and under treatment for a disease such as covid- will not have any cause to move about frequently and thus, quality of life is ensured and transmission rate is reduced. the on-going phase of the current system is its physical deployment with iot devices, a testing phase of the mobile application using the real-world scenario and documentation of feedbacks for improvement. it is recommended that after rigorous testing and evaluation, the proposed system can be deployed in hospitals for use in various units. the designed mobile and web application, once fully developed, can be plugged into existing web domains of hospitals as a portal and can be launched as a fresh application for hospitals without existing domains. it is also recommended that new features such as a physiological data capturing device be incorporated into the current system. as a future direction, we plan to extend our application beyond android platform to other ios platforms for wide adaptability. with the efficient technique presented in this paper, it is believed that this research can be extended to other areas of iot such as agriculture for monitoring of livestock and consultation of farmers with veterinary doctors towards diagnosis, prescription and treatment of diseases in livestock in farms. also, the new system can be extended for use in the pharmaceutical sector. the doctors can send prescriptions to the pharmacist for recommendation of dosage and possible dispensing of medications to patients. finally, it will be of interest to carry out an evaluation of the overall performance of the proposed system using different mathematical and statistical evaluation tools. no suitable care for sa's elderly smart health monitoring systems: an overview of design and modeling context-driven personalized service discovery in pervasive environments e-health monitoring system remote health monitoring using mobile phones and web services bsn-care: a secure iot-based modern healthcare system using body sensor network delivering home healthcare thorugh a cloud-based smart home envrionment (coshe) smart home assistant for ambient assited living of elderly people with dementia smart home automation system for elderly and handicapped people using xbee a g-rfid-based e-healthcare system a smart sensing architecture for domestic monitoring: methodological approach and experimental validation smart home-based health platform for behavioral monitoring and alteration of diabetes patients daily life activity tracking application for smart homes using android smartphone patient status monitoring for smart home healthcare smart home health monitoring system for predicting type diabetes and hypertension smart home for elderly living using wireless sensor networks and an android application robot-enabled support of daily activities in smart home environments smart gsm based home automation system design & implementation of smart house control using labview iot based smart home automation system using sensor node real-time energy control approach for smart home energy management system design and implementation of an iot-based smart home security system a home mobile healthcare system for wheelchair users an iot-aware architecture for smart healthcare systems context-driven personalized service discovery in pervasive environments understanding and using context tips to measure your blood pressure correctly gait disorders in adults and the elderly: a clinical the authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. key: cord- -phmd u d authors: siegler, aaron j; hall, eric; luisi, nicole; zlotorzynska, maria; wilde, gretchen; sanchez, travis; bradley, heather; sullivan, patrick s title: willingness to seek laboratory testing for sars-cov- with home, drive-through, and clinic-based specimen collection locations date: - - journal: open forum infect dis doi: . /ofid/ofaa sha: doc_id: cord_uid: phmd u d background: sars-cov- virus testing for persons with covid- symptoms, and contact tracing for those testing positive, will be critical to successful epidemic control. willingness of persons experiencing symptoms to seek testing may determine the success of this strategy. methods: a cross-sectional, online survey in the united states measured willingness to seek testing if feeling ill under different specimen collection scenarios: home-based saliva, home-based swab, drive-through facility swab, and clinic-based swab. instructions clarified that home-collected specimens would be mailed to a laboratory for testing. we presented similar willingness questions regarding testing during follow-up care. results: of participants, comprising a broad range of sociodemographic groups, % were willing to test with a home saliva specimen, % with home swab, % with drive-through swab, and % with clinic collected swab. moreover, % indicated they would be more likely to get tested if there was a home testing option. there were no significant differences in willingness items across sociodemographic variables or for those currently experiencing covid- symptoms. results were nearly identical for willingness to receive testing for follow-up covid- care. conclusions: we observed a hierarchy of willingness to test for sars-cov- , ordered by the degree of contact required. home specimen collection options could result in up to one-third more symptomatic persons seeking testing, facilitating contact tracing and optimal clinical care. remote specimen collection options may ease supply chain challenges and decrease the likelihood of nosocomial transmission. as home specimen collection options receive regulatory approval, they should be scaled rapidly by health systems. a central component of covid- disease containment strategies will be scaled-up testing and self-isolation/quarantine as applicable. , this strategy requires active identification of case patients, contact tracing, and testing of people within their networks. successful implementation of this strategy will require widespread access to testing; substantial efforts are underway to increase sars-cov- virus testing capacity in the united states and globally. in addition to access (e.g. supply), success of testing strategies will be contingent on the extent to which they are acceptable to patients (e.g. demand). case identification and contact tracing efforts depend greatly on willingness to test among patients experiencing covid- disease-like symptoms. to inform patient isolation strategy, those who have tested positive should be tested again during follow-up care (us centers for disease control and prevention recommends two consecutive tests collected ≥ hours apart) if supplies and laboratory capacity are sufficient,; alternatively, a symptom-based strategy is recommended. patient willingness to seek testing is especially critical because many persons infected with sars-cov- may experience only mild symptoms: in italy, % of diagnosed cases have been classified as mildly symptomatic, although such estimates may be an undercount due to the likely lower frequency of test seeking in this group. for other infectious diseases, self-collection procedures have long been practiced, , been identified as highly acceptable and preferred to in-clinic procedures, and having diagnostic metrics comparable to healthcare worker specimen collection. , calls for home-based specimen collection or drive-through specimen collection models to address sars-cov- virus test scale-up have cogently argued that these approaches have the benefit of ( ) avoiding burdening hospitals at a critical time, ( ) avoiding potential nosocomial infections (the risk of acquiring disease from clinical or laboratory settings), ( ) likely lowering costs, and ( ) potentially achieving rapid scale-up due to laboratory centralization. , one additional benefit of home specimen collection might be that supply chain issues, such as stockouts of swabs or personal protective equipment, could be alleviated if non-traditional specimens such as saliva or non-traditional locations such as home settings prove sufficient. drive-through sars-cov- virus testing sites already exist, and a number of laboratories are working to additionally validate home-based self-specimen collection for sars-cov- testing. protocols for the self-collection of specimens at home for sars-cov- testing are currently being explored. for instance, two saliva-based sars-cov- virus tests have recently received emergency use authorization from the us food and drug administration for home-based specimen collection. , these protocols involve persons being mailed specimen collection materials and instructions, self-collection of specimens at home, and return of specimens to a central laboratory using a supplied mailer. we conducted an online survey to assess patient willingness to use the following sars-cov- testing modalities for clinical care: home-based specimen collection, drive-through testing, and clinic-based testing. we hypothesized that persons would be more willing to use home-based and drive-through specimen collection modalities compared to clinic-based modalities. we recruited potential participants using online social media advertisements from march th to april st, . to be eligible, respondents had to be years of age or older. given the disproportionate impact of covid- on communities of color, on the final day of data m a n u s c r i p t collection eligibility criteria were adjusted to screen out non-hispanic white respondents in an effort to increase minority representation in the sample. participants completed a nonincentivized online survey after being recruited from social media sites with banner advertisements requesting participation in covid- survey research. survey measures included previously published demographic items, covid- disease knowledge, covid- disease stigma items, and a list of covid- disease symptoms based on several sources. [ ] [ ] [ ] regions were defined according to us census bureau classifications of states. to understand whether responses were differential by state covid- burden, we created a binomial variable with high burden states defined as having > cases per , population (ny, nj, ma, la, ct) at the time of the survey; these states accounted for over half of all covid- cases at that time. we developed a series of questions about willingness to use different testing modalities, each rated with a five-point likert scale ( -strongly disagree to -strongly agree). the questions were based on home test willingness questions we have previously used in hiv prevention research. definitions for each testing modality were: "a home saliva sample would involve you spitting in a tube and sending it to a certified laboratory," "a home throat swab would involve you using a throat swab and sending it into a certified laboratory," "a drive-through site for throat swab would involve your traveling to a drive-through facility in your car to have a healthcare worker collect the swab," and "a laboratory throat swab would involve your traveling to a laboratory facility in a clinic or private laboratory to have a healthcare worker collect the swab." other questions assessed whether persons rated themselves as more likely to seek testing if the option to collect specimens at home for mail-in testing were available. the full text of survey items can be seen in supplement . all participants completed a written electronic consent procedure, and study procedures were approved by the emory university irb. from , persons initiating the survey screener, , were ineligible, , did not consent or provided only partial survey responses, and , completed all willingness items for the analysis dataset (figure ). the sample was % (n= ) aged - , % ( ) aged - , % ( ) aged - , and % ( ) aged or older. females comprised % ( ), males % ( ), and other gender identity % ( ) . overall % ( ) were non-hispanic white, % ( ) were hispanic, % ( ) were non-hispanic black, % ( ) were asian/pacific islander, and % ( ) were native american/alaska native or identified as mixed race or other non-hispanic. covid- knowledge was high with % ( ) answering at least of knowledge questions correctly, and covid- stigma was moderate with % ( ) answering at least one of four stigma questions in a stigmatizing direction. a majority of % ( , ) thought they were unlikely to have covid- , although % ( ) reported or more of a broad range of potential covid- symptoms. m a n u s c r i p t home specimen collection solutions were most preferred with % ( / ) of participants agreeing or strongly agreeing that they would provide a saliva specimen, and % ( / ) agreeing that they would provide a throat swab (figure ). there was attenuated willingness for drive through swab testing ( %, / ), and substantially attenuated willingness for clinic or laboratory throat swab ( %, / ). differences in mean willingness scores across testing modalities were all significant (p<. ), with very small effect size for home saliva testing compared to home throat swab testing (d= . ), medium effect size for home saliva testing compared to drive-through testing (d= . ), and large effect size for home saliva testing compared to clinic-based testing (d= . ). we found highly similar willingness to seek testing for covid- follow-up care (figure ) , and identical significance and effect size findings (supplement ). willingness to seek testing for diagnosis and care within each testing modality was remarkably consistent across all covariates in the analysis, with no differences across age groups, race/ethnicities, covid- stigma scores, covid- knowledge scores, covid- symptomology, region, or state-level covid burden (table ) . to directly assess potential behavioral change associated with different home care testing modalities, we asked participants whether they would be more likely, no different, or less likely to seek testing for covid- disease if at-home specimen collection options were available. relative to availability of a drive-through modality, % ( ) noted they would be more likely to test if at-home specimen collection were available, % ( ) noted no difference, and % ( ) noted lower likelihood. relative to availability of a clinic-or lab-based modality, % ( ) noted they would be more likely to test if at-home specimen collection were available, % ( ) noted no difference, and % ( ) noted lower likelihood (results not reported in table). across a diverse sample of , participants, one-third more persons reported that they would be willing to collect specimens at home for sars-cov- testing if they experienced illness, compared to clinic-based testing. there was a hierarchy of willingness to test for sars-cov- that was decreased as the required degree of contact with healthcare systems increased: home testing was most preferred, followed by drive-through testing, and then by laboratory or clinicbased testing. if differences in reported willingness approximate those in actual willingness, the magnitude of the findings has considerable public health and clinical care implications. one indicator that the hypothetical may approach actual behavior is that participant preferences were consistent across covid- symptomology levels: persons currently experiencing covid- related symptoms reported similarly lower willingness to seek drive-through and clinic-based sars-cov- testing as persons not currently experiencing symptoms. preference differences were also constant across a wide variety of sociodemographic variables, which is important to note, considering the differential impact of sars-cov- on elderly persons and on african-americans, as reported in media and confirmed by coroner's offices in louisiana, chicago, and michigan. there are currently vast differences in how countries and jurisdictions are handling testing due to supply limitations. in iceland, testing has been widely provided as a strategy to combat epidemic spread, and not surprisingly this appears to be substantially contributing to their control of epidemic spread. with a combined approach for testing that included targeted recruitment of symptomatic persons or those in contact with symptomatic persons, an open invitation m a n u s c r i p t recruitment, and a random sample recruitment, iceland tested over , persons using an inperson testing strategy. at-home self-collection of specimens is one of several options worthy of exploration to achieve similar gains in other settings. home-based and drive-through testing strategies are promising in part because they may allow for rapid scale-up of newly validated approaches that may relieve supply chain problems. it is clear that, if sufficient laboratory capacity and supplies are available, increased testing using at-home specimen collection is critical for public health response for three reasons. first, it would facilitate increased initiation of contact tracing, a tool known to limit epidemic spread, by identifying people with mild symptoms and allowing public health authorities to test close contacts. second, it would reduce the risk of disease transmission from clinical settings. third, it would facilitate improved selfmanagement, because mild and moderate covid- symptoms are non-specific. persons receiving a formal sars-cov- diagnosis are likely to perform self-isolation activities with substantially more rigor than persons whose actions are informed only by their mild symptoms. conversely, those determined to be uninfected would be anticipated to have reduced anxiety, and be able to continue with their lives without an unnecessary isolation period. given our finding that people were more willing to test with home specimen strategies, making such an option available might allow for earlier informed discussions with a clinician via an office visit or telemedicine regarding the optimal next steps in their care. this is especially relevant given media reports, confirmed by local health authorities, of the substantial increases of persons found dead in their homes in some cities in the united states compared to historic averages. in detroit, there were more than persons founds dead in their homes first days of april compared to around during that same period in the three years prior. in new york city in early april , a spokesperson for the department of health confirmed that around deaths per day have been observed in homes, compared to - deaths per day in . it is likely that many of the deceased did not have an opportunity to receive clinical care, a problem that could potentially be mitigated through more wide-spread and easily accessible testing. other authors have previously called for sars-cov- home testing, but mainly for its social distancing and reduced healthcare system burdens. , such calls can and have equally supported drive-through facilities. but our findings indicate home collection was substantially preferred to drive-through methods, with over % more persons indicating willingness to complete a home test compared to a drive-through test. drive-through testing venues may achieve benefits of viral transmission control, but have lower benefits for increasing the demand for testing. these results are aligned with previous work that has found home specimen collection a highly preferred method of seeking clinical care, , , and can be understood as part of an already ongoing move towards remote care facilitated by at-home specimen collection. [ ] [ ] [ ] [ ] an additional benefit is that home testing has the potential to reach persons with limited access to transportation, or living far from available testing sites. this national online survey study has a number of limitations. participants volunteered to take an online survey regarding covid- , potentially skewing willingness values higher than among the general population. moreover, reported willingness has been observed to overestimate uptake for other interventions, and our findings are likely subject to similar bias. we do not think, however, that this would produce bias in the relative levels of support for the testing options presented. cost of different sars-cov- testing strategies will likely vary, and if the healthcare m a n u s c r i p t system does not cover the cost of some test options, this would likely influence willingness to use that modality. in unpublished work, the sensitivity performance of saliva-based tests has been found to be higher than nasopharyngeal swabs in clinical settings, yet a separate study identified poor sensitivity performance of saliva specimens in a community-based setting. further studies for saliva as a specimen type in community settings are needed. the high overall preference for home testing, including for pharyngeal specimen collection, indicates that other home-based specimens such as anterior nares swab may likewise be highly acceptable. the convenience sample used in the present study may not represent the broader population in other ways, although the consistent and strong differences in preference across categories and item types indicates this would likely have little influence on study results. we found strong preferences for home testing options. providing a home testing option is consistent with social distancing strategies and also patient-centered care strategies demonstrated to improve patient adherence to clinician-recommendations. home specimen collection and central laboratory testing can ease supply chain problems, and be quickly scaled up for contact tracing use by public health authorities. such home testing methods should be validated as soon as possible, and brought to scale by clinicians and health systems. all authors have no conflicts of interest to declare. m a n u s c r i p t willingness to seek laboratory testing for sars-cov- under different specimen collection scenarios *for home specimens, instructions clarified that specimens would be collected at-home and mailed to a central laboratory for testing covid- : towards controlling of a pandemic covid- epidemic in switzerland: on the importance of testing, contact tracing and isolation discontinuation of isolation for persons with covid- not in healthcare settings on the front lines of coronavirus: the italian response to covid- self-testing for hiv: a new option for hiv prevention? the lancet infectious diseases selfcollection of vaginal swabs for the detection of chlamydia, gonorrhea, and trichomoniasis: opportunity to encourage sexually transmitted disease testing among adolescents. sexually transmitted diseases developing and assessing the feasibility of a home-based preexposure prophylaxis monitoring and support program reliability of hiv rapid diagnostic tests for self-testing compared with testing by health-care workers: a systematic review and meta-analysis. the lancet hiv self-collected versus clinician-collected sampling for chlamydia and gonorrhea screening: a systemic review and meta-analysis self-service diagnosis of covid- -ready for prime time? proposed protocol to keep covid- out of hospitals self-service diagnosis of covid- -ready for prime time? paper presented at: jama health forum detection of sars-cov- rna and antibodies in diverse samples: protocol to validate the sufficiency of provider-observed, home-collected blood, saliva, and oropharyngeal samples food and drug administration. phosphorus covid- rt-qpcr test eua food and drug administration. rutgers clinical genomics laboratory taqpath sars-cov- assay eua the annual american men's internet survey of behaviors of men who have sex with men in the united states: protocol and key indicators report knowledge and perceptions of covid- among the general public in the united states and the united kingdom: a cross-sectional online survey. annals of internal medicine a novel coronavirus outbreak of global health concern coronavirus outbreaks: prevention and management recommendations loss of smell and taste in combination with other symptoms is a strong predictor of covid- infection. medrxiv. . . usa facts. coronavirus locations: covid- map by county and state clinical infectious diseases : an official publication of the infectious diseases society of america the strengthening the reporting of observational studies in epidemiology (strobe) statement: guidelines for reporting observational studies. the lancet clinical features of fatal cases of covid- from wuhan: a retrospective observational study spread of sars-cov- in the icelandic population. the new england journal of medicine there's been a spike in people dying at home in several cities. that suggests coronavirus deaths are higher than reported staggering surge of nyers dying in their homes suggests city is undercounting coronavirus fatalities. gothamist web site virtually perfect? telemedicine for covid- bringing hiv self-testing to scale in the united states: a review of challenges, potential solutions, and future opportunities attitudes and acceptability on hiv selftesting among key populations: a literature review an electronic pre-exposure prophylaxis initiation and maintenance home care system for nonurban young men who have sex with men: protocol for a randomized controlled trial usability and acceptability of a mobile comprehensive hiv prevention app for men who have sex with men: a pilot study acceptability of self-collecting oropharyngeal swabs for sexually transmissible infection testing among men and women the respiratory specimen collection trial (respect): a randomized controlled trial to compare quality and timeliness of respiratory sample collection in the home by parents and healthcare workers from children aged< years distinguishing hypothetical willingness from behavioral intentions to initiate hiv pre-exposure prophylaxis (prep): findings from a large cohort of gay and bisexual men in the u saliva is more sensitive for sars-cov- detection in covid- patients than nasopharyngeal swabs saliva is less sensitive than nasopharyngeal swabs for covid- detection in the community setting we appreciate and acknowledge the contributions of our study participants. all authors had full access to study data, and ajs had final responsibility for the decision to submit for publication. this work was supported by the national institute of allergy and infectious diseases ( r ai - s ). the study was facilitated by the center for aids research at emory university (p ai ). the content is solely the responsibility of the authors and does not necessarily represent the official views of the national institutes of health. a c c e p t e d m a n u s c r i p t a c c e p t e d m a n u s c r i p t a c c e p t e d m a n u s c r i p t . there were no significant differences in testing scenario scores by any variable considered (e.g. home saliva specimen score differences across gender, age, etc), after bonferroni-holms correction for multiple hypothesis testing. . high burden states as of the time of the survey (april ), defined as > cases / , population.a c c e p t e d m a n u s c r i p t a c c e p t e d m a n u s c r i p t figure key: cord- -uk ir po authors: okuhara, tsuyoshi; okada, hiroko; kiuchi, takahiro title: examining persuasive message type to encourage staying at home during the covid- pandemic and social lockdown: a randomized controlled study in japan date: - - journal: patient educ couns doi: . /j.pec. . . sha: doc_id: cord_uid: uk ir po objective: behavioral change is the only prevention against the covid- pandemic until vaccines become available. this is the first study to examine the most persuasive message type in terms of narrator difference in encouraging people to stay at home during the covid- pandemic and social lockdown. methods: participants (n = , ) were randomly assigned to five intervention messages (from a governor, a public health expert, a physician, a patient, and a resident of an outbreak area) and a control message. intention to stay at home before and after reading messages was assessed. a one-way anova with tukey’s or games–howell test was conducted. results: compared with other messages, the message from a physician significantly increased participants’ intention to stay at home in areas with high numbers of people infected (versus a governor, p = . ; an expert, p = . ; a resident, p = . ). conclusion: the message from a physician―which conveyed the crisis of overwhelmed hospitals and consequent risk of people being unable to receive treatment―increased the intent to stay at home the most. practice implications: health professionals and media operatives may be able to encourage people to stay at home by disseminating the physicians’ messages through media and the internet. the outbreak of the coronavirus disease has emerged as the largest global pandemic ever experienced [ ] . experts have proposed that social lockdown will lead to improvements such as controlling the increase in the number of infected individuals and preventing a huge burden on the healthcare system [ , , ] . governments of many countries across the world have declared local and national social lockdown [ , ] . in april , the japanese government declared a state of emergency, which allows prefectural governors to request residents to refrain from unnecessary and nonurgent outings from home [ ] . however, despite such governor declarations, people in various countries have resisted and disregarded calls to stay at home [ , , ] . because social lockdown is the only existing weapon for prevention of the pandemic until vaccines becomes available to treat covid- , behavioral change in individuals regarding staying at home is crucial [ , ] . many news articles about covid- are published daily by the mass media and over the internet. such articles convey messages from governors, public health experts, physicians, covid- patients, and residents of outbreak areas, encouraging people to stay at home. this is the first study to examine which narrator's message is most persuasive in encouraging people to do so during the covid- pandemic and social lockdown. participants were recruited from people registered in a survey company database in japan. the eligibility criterion was men and women aged - years. exclusion criteria were individuals who answered screening questions by stating: that they cannot go out because of illness or disability; that they have been diagnosed with a mental illness; or/and that they or their family members have been infected with covid- . a total of , participants completed the survey from may to , , when the state of emergency covered all prefectures in j o u r n a l p r e -p r o o f japan. participants were included according to the population composition ratio in japan nationwide by gender, age, and residential area. participants were randomly assigned either to a group that received an intervention message (i.e., from a governor, a public health expert, a physician, a patient, and a resident of the outbreak area) or to one that received a control message. the study was registered as a university hospital medical information network clinical trials registry (number: umin ) on may , . the methods of the present study adhered to consort guidelines. the protocol was approved by the ethical review committee at the graduate school of medicine, university of tokyo (number: ni). all participants gave written informed consent in accordance with the declaration of helsinki. we searched news articles about covid- using yahoo! japan news (https://news.yahoo.co.jp), the largest japanese news portal site. we also searched videos posted by residents of outbreak areas such as new york using youtube (https://www.youtube.com/user/youtubejapan). by referring to these articles and videos, we created five intervention messages from a governor, a public health expert, a physician, a patient, and a resident of an outbreak area. the content of each message encouraged readers to stay at home. we included threat and coping messages in each intervention message based on protection motivation theory (pmt) [ , ] . appendix shows the five intervention messages used in this study, translated into english for this report. for a control message we obtained textual information about bruxism from the website of the ministry of health, labour and welfare (https://www.e-healthnet.mhlw.go.jp/). the primary outcome was intention to stay at home. the secondary outcomes were pmt constructs (i.e., perceived severity, vulnerability, response efficacy, and self-efficacy). participants responded to two or three questions for each measure (see appendix ) . these measures were adapted and modified from previous studies j o u r n a l p r e -p r o o f [ , , , ] . all primary and secondary outcomes were measured before and after the participants read intervention or control messages, and mean scores were calculated. higher scores indicated greater intention and perception. all participants were asked for their sociodemographic information before they read intervention or control messages. based on the effect size in a previous randomized controlled study [ ] , we estimated a small effect size (cohen's d = . ) in the current study. we conducted a power analysis at an alpha error rate of . (two-tailed) and a beta error rate of . . the power analysis indicated that participants were required in each of the intervention and control groups. a one-way analysis of variance (anova) was conducted with the absolute change in mean values for each measure before and after intervention as the dependent variable and the group assignment as the independent variable. for multiple comparisons, tukey's test was conducted on significant main effects where appropriate. the games-howell test was performed when the assumption of homogeneity of variances was not satisfied. additionally, we conducted subgroup analyses including only participants who lived in "specified warning prefectures," where the number of infected individuals showed a marked increase [ ] . a p value of <. was considered significant in all statistical tests. all statistical analyses were performed using ibm spss statistics for windows, version . (ibm, armonk, ny, usa). table shows the participants' characteristics. tables and present a comparison among the five j o u r n a l p r e -p r o o f intervention groups using one-way anova and multiple comparisons when including all prefectures and only participants who lived in the specified warning prefectures, respectively. more significant differences between intervention messages were found in the specified warning prefectures compared with all prefectures. in table , the games-howell test indicates that the message from a physician increased participants' intention to stay at home significantly more than other narrators' messages (versus a governor, p=. ; an expert, p=. ; a resident, p=. ). multiple comparisons demonstrated that the message from a physician increased participants' perceived severity (versus a governor, p=. ), response efficacy (versus a resident, p=. ), and self-efficacy (versus a governor, p=. ; a patient, p=. ) significantly more than other narrators' messages. as appendix shows, the message from a physician specifically communicated the critical situation of hospitals being overwhelmed and the consequent risk of people being unable to receive treatment. depiction of the crisis of overwhelmed hospitals may have evoked heightened sensation that elicited sensory, affective, and arousal responses in recipients. social lockdown presumably evoked psychological reactance in many individuals [ ] . psychological reactance is considered one of the factors that impedes individuals' staying at home during a pandemic [ ] . studies of psychological reactance have indicated that heightened sensation is the feature of a message that reduces psychological reactance [ , ] . additionally, in japan recommendations by physicians have a strong influence on individuals' decision making owing to the remnants of paternalism in the patient-physician relationship [ ] . these may constitute the reasons for the message from a physician generating the greatest impact on recipients' protection motivation. public health professionals, governors, media professionals, and other influencers should use messages from physicians and disseminate relevant articles through the media and social networking services to encourage people to stay at home. it is important that health professionals and media have a network and collaborate with one j o u r n a l p r e -p r o o f another [ ] . to build relationships and provide reliable resources, health professionals are expected to hold press conferences and study meetings with journalists. through such networking, journalists can acquire accurate information in dealing with the pandemic, such as using messages from physicians to encourage people to stay at home. consequently, journalists should disseminate such messages. it is also important that governments, municipalities, medical associations, and other public institutions convey messages from physicians and that the media effectively spread those messages. owing to the advances of web . [ ] , health professionals' grassroots communication with journalists and citizens via social media may provide opportunities for many people to access persuasive messages from physicians. first, the content of the intervention messages in this study may not represent voices of all governors, public health experts, physicians, patients, and residents of outbreak areas. second, it is not clear from this study which sentences in the intervention message made the most impact on recipients and why. third, this study assessed intention rather than actual behavior. finally, it is unclear as to what extent the present findings are generalizable to populations other than the japanese participants in this study. in areas with high numbers of infected people, the message from a physician, which conveyed the crisis of hospitals being overwhelmed and the consequent risk of people being unable to receive treatment, increased the intention to stay at home to a greater extent than other messages from a governor, a public health expert, a patient with covid- , and a resident of an outbreak area. governors, health professionals, and media professionals may be able to encourage people to stay at the authors declare that there is no conflict of interest. this work was supported by the japan society for the promotion of science kakenhi (grant number k ). we thank hugh mcgonigle, from edanz group (https://en-author-services.edanzgroup.com/ac), for editing a draft of the manuscript. the following is a message from the governor of your local area. j o u r n a l p r e -p r o o f "as the novel coronavirus spreads, now is a crucial time in deciding whether we will see an explosive growth in the number of cases. the same epidemic and overwhelmed hospitals that have occurred in cities abroad can occur here. unless absolutely essential, please refrain from going out unnecessarily and stay at home. please do not go to these three high-density places: closed spaces with poor ventilation, crowded places where many people gather together, and intimate spaces where you would have conversations in close proximity. as for commuting, please work from home or stagger commuting times where possible to reduce contact with other people. the action taken by all of us will be the most effective remedy in overcoming this disease and ending the coronavirus epidemic quickly. we will do our utmost to improve our healthcare provision system, prevent the spread of infection, and mitigate the impacts on the local economy. let us all work together to overcome this difficult situation." please avoid leaving your house as much as possible. staying at home can save lives and prevent the spread of infection. the following is a message from an infectious disease control expert. "one characteristic of the novel coronavirus is that it is difficult to notice that you are infected. as a result, it is possible that you could feel healthy but pass the virus on to - people within a week. those individuals could then each pass the virus on to a further - people, and those in turn could then pass the virus on to another - people. two will become , will become , will become , will become , and so on, and the number of infected people will keep doubling. unless contact between people decreases, it is estimated that about , people will become seriously ill in japan and about , people will die. however, if everybody stops going out and stays at home, and if we are able to reduce our contact with people by %, we will be able to prevent the spread of infection. for example, stop meeting with your friends, stop going shopping, and work from home. if we can reduce the number of people infected, we can reduce the burden on doctors and nurses and prevent hospitals being overwhelmed." please avoid leaving your house as much as possible. staying at home can save lives and prevent the spread of infection. the following is a message from an emergency medical care doctor. "the beds and intensive care units at my hospital have all been filled by patients who have the novel coronavirus, and we can no longer accept new patients. the overwhelming of hospitals and collapse of the healthcare system that happened in italy and new york is already under way in japan. doctors and nurses are being fully mobilized for treatment, but they lack masks and protective clothing. we have cut plastic folders with scissors to make face shields to cover our faces. we use the same mask for days. with the high risk of infection, we are being pushed to the limit. it is not uncommon for infection to occur within the hospital. even if only one of the doctors or nurses gets infected, many co-workers have to isolate themselves at home and are unable to continue providing treatment. this means that, if any one of you becomes infected and their condition becomes critical, there may be no treatment available. we are staying in the hospitals and continuing to provide treatment. so please, stay at home. if you do your part, we will be able to do ours." please avoid leaving your house as much as possible. staying at home can save lives and prevent the spread of infection. the following is a message from a patient who is infected with the novel coronavirus. "i had a -degree fever and a headache that felt like someone was stomping on my head. i could not stop coughing, and the pain felt as though i was inhaling broken glass. i really thought that i was going to die. i have no pre-existing conditions, do not smoke, and was perfectly healthy, but now i cannot breathe without a breathing tube. i have a drip and a catheter stuck into both of my hands. right now, i feel ten times better than i did when i was at my worst, and i am able to talk about my condition. but my fever refused to go down even after i had taken medication, and i do not know how many days have passed since i was hospitalized. i do not know where i was infected. i do not know the route of infection, whether it was my workplace, somewhere i had visited for work, or when i was out shopping. afterward, the rest of my family also tested positive. i had passed it to them. you do not know where you can be infected. do not assume that you will be okay because you are young or healthy. the virus does not pick and choose. please stop going out. stay at home." please avoid leaving your house as much as possible. staying at home can save lives and prevent the spread of infection. the following is a message from an individual who lives in an area where an outbreak of novel coronavirus has occurred. "in the beginning, i did not really feel a sense of crisis. of course i thought 'coronavirus is scary; better be careful,' but nothing more. however, in the area where i live, the number of those infected has increased tenfold from , to , in just one week. it is a real outbreak. the number of infected people increased all at once and overwhelmed the hospitals. they are lacking beds and ventilators. some doctors and nurses are infected, and there are not enough hospital staff. because of the healthcare system collapse, even if you are infected with coronavirus you will be unable to receive a test or treatment. if i or my family are infected and our condition becomes critical, we will likely die. i am scared to go grocery shopping. i always disinfect my purchases with alcohol, but soon my alcohol will run out. if you continue to go out, the number of those infected could jump to the tens of thousands, and the situation in your area will be the same as it is here. please stop going out. stay at home." please avoid leaving your house as much as possible. staying at home can save lives and prevent the spread of infection. according to the traditional definition, grinding one's teeth is when somebody makes a sound by strongly grinding the teeth together, usually unconsciously or while asleep. nowadays, it is often referred to as 'teeth grinding,' a term which also covers various actions that we do while awake. whether you are sleeping or awake, the non-functional biting habit of grinding one's teeth dynamically or statically, or clenching one's teeth, can also be referred to as bruxism (sleep bruxism if it occurs at night). bruxism can be categorized into the movements of: sliding the upper and lower teeth together like mortar and pestle (grinding); firmly and statically engaging the upper and lower teeth (clenching); and dynamically bringing the upper and lower teeth together with a tap (tapping). bruxism is difficult to diagnose, as it often has no noticeable symptoms. stress and dentition are thought to be causes of bruxism, but it is currently unclear and future research is anticipated. splint therapy, which involves the use of a mouthpiece as an artificial plastic covering on one's teeth, and cognitive behavioral therapy are being researched as treatments for bruxism. world health organization, coronavirus disease (covid- ) pandemic the positive impact of lockdown in wuhan on containing the covid- outbreak in china covid- : uk lockdown is "crucial" to saving lives, say doctors and scientists inter nation social lockdown versus medical care against covid- , a mild environmental insight with special reference to india coronavirus: the world in lockdown in maps and charts the ministry of health, labour and welfare coronavirus: the us resistance to a continued lockdown i want my life back": germans protest against lockdown a protection motivation theory protection motivation and self-efficacy: a revised theory of fear appeals and attitude change public perceptions, anxiety, and behaviour change in relation to the swine flu outbreak: cross sectional telephone survey perceived risk, anxiety, and behavioural responses of the general public during the early phase of the influenza a (h n ) pandemic in the netherlands: results of three consecutive online surveys predicting vaccination using numerical and affective risk perceptions: the case of a/h n influenza, vaccine who takes precautionary action in the face of the new h n influenza? prediction of who collects a free hand sanitizer using a health behavior model effects of a narrative hpv vaccination intervention aimed at reaching college women: a randomized controlled trial the ministry of health the uk covid- response: a behavioural irony? the attentional mechanism of message sensation value: interaction between message sensation value and argument quality on message effectiveness features of empathy-arousing strategic messages ethical decision making and patient autonomy: a comparison of physicians and patients in japan and the united states media coverage of health issues and how to work more effectively with journalists: a qualitative study intention to stay at home (cronbach's α . ) ( ) would you like to cancel or postpone plans such as "meeting people," "eating out," and "attending events" because of the new coronavirus infection? ( ) would you like to reduce the time you spend shopping in stores outside your home because of the new coronavirus infection? all questions above were on a scale of to , ranging from "extremely unlikely" to "unlikely," "a little unlikely," "a little likely," "likely," and "extremely likely." key: cord- - u s y authors: ten have, h.a.m.j. title: sheltering at our common home date: - - journal: j bioeth inq doi: . /s - - -x sha: doc_id: cord_uid: u s y the current covid- pandemic has reactivated ancient metaphors (especially military ones) but also initiated a new vocabulary: social distancing, lockdown, self-isolation, and sheltering in place. terminology is not ethically neutral but reflects prevailing value systems. i will argue that there are two metaphorical vocabularies at work: an authoritarian one and a liberal one. missing is an ecological vocabulary. it has been known for a long time that emerging infectious diseases are associated with the destruction of functioning ecosystems and biodiversity. ebola and avian influenza viruses have been significant warnings. obviously, this pandemic will not be the last one. as the planet is our common home, the major metaphor to explore is sheltering at this home. catastrophic risk for the future (global priorities project ). in , it was estimated that since more than thirty-five new infectious diseases have emerged in humans; one every eight months (smolinski et al. ) . since then the list has only grown (for example, the severe acute respiratory syndrome (sars) coronavirus, swine influenza (h n and other sub-types), the middle east respiratory syndrome (mers) coronavirus, ebola virus disease (evd), and the zika flavivirus). most of these outbreaks have been localized but the human immunodeficiency virus (hiv), sars, and avian influenza (h n and other sub-types) should have been warnings that globalization can easily occur. already in , the who launched its global influenza preparedness plan, urging countries to make national bio-preparedness plans, and many countries did so (who ) . furthermore, it has been known for some time that infectious diseases are promoted by environmental degradation as a result of biodiversity loss and climate change. destruction of ecosystems is shrinking the wildlife habitat and increasing contacts between wildlife and human beings. it is estimated that zoonotic pathogens cause per cent of emerging infectious diseases in humans (jones et al. ; daszak et al. ) . the global threat of pandemics therefore does not emerge spontaneously as a natural event but is the product of human behaviour. it is a consequence of the human way of life and exploitation of the planet. destruction of biodiversity creates the conditions for the emergence of new viral diseases (quammen ) . although much is unclear, studies indicate that bats are the reservoir hosts for the novel coronavirus sars-cov- causing covid- , while pangolins might be possible hosts. bats are very common mammals. they harbour around thirty different coronaviruses but in fact many more viruses, mostly unknown. pangolins are the most frequently trafficked mammals, especially in china, used as a food source and for traditional medicine. they have been traded in the wet market in wuhan where the infection emerged (lam et al. ) . live animal markets, industrial livestock farming, trade in wild animals, and consumption of wildlife meat bring virus reservoirs in close contact with human beings. the only way to prevent future zoonotic diseases is to study the origin of pandemics. instead of waiting for the next pandemic, epidemiological research should be expanded and stringent measures taken to prevent the "jumping" of viruses to humans. what is missing in the pandemic management responses so far is the ecological perspective that pandemics are related to the current economic global order which assumes a separation of humans and nature and regards nature as a resource to be exploited and commodified. the absence of an ecological perspective is highlighted in the images and words associated with covid- . sheltering in place is a notion from the cold war. when there is an imminent nuclear threat, people should take refuge in a small, interior room, lock all windows and remain indoors, or move to special shelters. this usually takes a few hours, not days or weeks. (american red cross, ) . the concept is also used for biological and chemical threats, as well as for extreme weather events. the basic idea is to wait until the worst is over; then go outside and resume normal activities. it assumes a specific view of disasters: they are sudden events with immediate but often localized impact such as tsunamis and tornadoes. pandemics, however, are gradual disasters; they have slow impact, and move across the globe, potentially affecting everyone. the difference is important for the degree of preparedness. since pandemics come in waves, not all regions and countries are simultaneously affected. this leaves time for preparation. it also means that sheltering will be extended for weeks perhaps months, not knowing how long it will provide security. during a pandemic, sheltering at home seems a more acceptable term. it avoids connotations of mandatory quarantine or isolation. it is restricting freedom of movement but appeals to the responsibility of individuals. contrary to shelter-in-place, sheltering at home is more lenient since it allows to go out for essential business and walking, keeping physical distance to other people. the notion of "home" generally has positive connotations. in distinction to "place" it is not a neutral location. it is where people live together in a space of intimacy and privacy, often regarded as a haven or refuge, a secure place to retreat and feel comfortable, a setting for caring relationships and conviviality (mallet ) . at home means more than residing in a specific place. of course, not all homes are the same (e.g. nursing homes), not all homes are safe (e.g. domestic abuse), and not everybody has a home. now that more than half of the world population is confined to their homes, philosopher gaston bachelard reminds us that beingat-home is more fundamental than activities such as working (bachelard ) . nevertheless, the emphasis on sheltering and isolation reflects an individualistic perspective, assuming that people can easily withdraw from social interactions. in many cases, connections with environing conditions cannot be severed. for numerous people, especially in low-and middle-income settings, this is not an option. also, poor people in affluent countries cannot shelter but have to expose themselves in order to subsist. the image of sheltering at home has become incorporated in popular discourse. previously used in epidemiology, new words (e.g. self-isolation, social distancing, and lockdown) are now disseminated to advance images of control and containment. they visualize the spread of the virus, what we can do to avoid infection and to become aware of the effects of our behaviour. these images are associated with the war metaphor dominating current policies. the disease is regarded as a threat, the virus as enemy, leaders as commanders, and vaccines as new weapons. today's metaphor is associated with the older discourse of bio-invasion. since the s, many countries have developed policies to protect native biodiversity against invasive species. non-native species are considered as aliens, enemies; we need to act to protect nature. the assumption is that nature and humans can be separated. nature, and wildlife in particular, is regarded as a source of danger. however, bio-invasion is impossible to prevent. when mobility and interconnectedness are the hallmarks of globalization, bio-invasion is a global phenomenon par excellence since borders are irrelevant. the same applies to new, "emerging" viruses. viral diseases have been with us since the beginning of humanity. they are now more easily disseminated through global traffic. the point is that these "new" viruses do not simply "emerge" as natural events. their impact is the result of human activities. the military metaphor is currently applied in most countries. the effect is reinforcement of boundaries. first, between inside and outside, enemies and friends. it blames people for "bringing in the virus." second, individuals and social context are disconnected. terminology is not ethically neutral but reflects prevailing value systems. when the virus moved across the world, some words (e.g. mandatory quarantines, containment zones, home confinement) were less often used in liberal societies. while the military metaphor is predominant, it is articulated in distinct policies: authoritarian and liberal ones. both appeal to different normative frameworks which are often mixed in practical approaches. for example, "lockdown" and "quarantine" emphasize state measures beyond individual rights and freedoms. on the other hand, "self-isolation" appeals to individual responsibility. the term "social distancing" is typically neoliberal; it does not recognize the communal nature of many societies. what is at stake is physical (not social) distancing, while in many countries social connections and solidarity have grown. emphasizing self-interest risks that other persons are seen as threats. many countries, especially in the west, struggle with the balance between authoritarian and liberal policies. they are concerned with the protection of human rights and civil liberties. the discussion about the use of surveillance technologies and their impact on privacy is an example (gostin, friedman, and wetter ) . since both authoritarian and liberal policies are animated by the military metaphor, they share the same urge to control. they reflect a system of governance that administers, fosters, and secures life by controlling the population and disciplining the individual. this application of "biopower" is closely linked to the ideology of neoliberalism in emphasizing internal regulation by autonomous subjects rather than external force and pressure (foucault ; kakuk ) . even in authoritarian countries, stringent policies will not succeed if they do not appeal to the responsibility of citizens. emphasizing individual responsibility and empowerment, however, neglects the social, political, and economic dimensions of human life. it narrows bioethical discourse since it is difficult to conceptualize the significance of the context in which problems arise and to develop practices based on relationality and connectedness which are articulated in global bioethics with an ecological vocabulary. interconnectedness and interdependency articulate that humans cannot be separated from the surrounding world, not only society and culture but also the natural world of animals and plants. the starting point for bioethical discourse is therefore not individual autonomy but the broader context in which individuals are embedded. self-isolation in this perspective is not merely protecting oneself but first of all protecting fellow citizens. the experience of togetherness is not restricted to humans but involves all forms of life, even viruses. regarding humans as part of an interconnected web of life means moving from an anthropo-centric to biocentric approach with a relational concept of the self, dependent on biodiversity. this shift has been advocated by many environmental ethicists as well as in indigenous worldviews (rolston ; johnson ) .the ecological perspective implies that the military language of the pandemic is distorting the human embeddedness in the natural world. emphasizing the antagonism between humans and the virus as enemy, blames nature for diseases ignoring that diseases emerge due to environmental degradation as a result of human exploitation of biodiversity. it also disregards that microbes are inhabitants of our world; they have been and will be always there. rather than eradication, cohabitation will be required. the military metaphor encourages the search for "magic bullets" that can attack and eliminate the virus. it also creates an atmosphere of secrecy, suspicion, and mistrust where facts, findings, and potential weapons are disputed and concealed. another consequence of the ecological perspective is a broader notion of health. human health, animal health, and healthy ecosystems are linked. human beings cannot be healthy when the planet is not healthy. the implication is that governance should be global. it should be focused on health as one, as a planetary concern. applying the vision of one health means monitoring and surveilling human connections with animals, specifically in the bioindustry. another implication is that attention should not merely focus on morbidity and mortality but on prevention. future pandemics will emerge if environmental destruction and loss of biodiversity are not addressed. global interconnectedness implies that citizens in one country will be exposed to diseases when they emerge in another country. the ecological perspective therefore stresses the need for solidarity. this is not just an ethical requirement, but a medical necessity. closing borders, restricting travel, and concentrating on national interests had only a limited effect on the dissemination of covid- . public health as a common good is essential for the well-being and survival of humanity. it will require cooperation and collective action, especially in the early stages of a pandemic disease when the caseload is still manageable and secondary prevention is possible. in an ecological perspective, vulnerability to infectious diseases is not confined to specific individuals, populations, or nations. while covid- and its impact will be temporary, the effect of climate change is already there and will continue, requiring sustained action for a very long time (guterres ) . both global threats are interpreted from a similar perspective: humans are not embedded in nature. the earth is a resource that can be commodified and exploited; it is not regarded as a living organism that creates and nourishes life (humans, animals, and microorganisms). the fact that many of us are now confined to our homes is hopefully an incentive to realize that we all share a common home. it demonstrates not merely interconnectedness of human beings manifested in society and culture but furthermore their embeddedness in the natural world. what affects the health of the planet will unquestionably deteriorate human health. concepts such as "one health" and "planetary health" articulate the connection between healthcare and earthcare. they make clear that the focus of bioethics should go beyond individual health and that effective policies should be based on collective action (ten have ). given the interconnection between health and biodiversity, the notion of sheltering at our common home is most appropriate in the current circumstances. the earth is our home, as stated in the preamble of the rio declaration (united nations ) . like all homes, this common home has dark sides, clearly noticeable today. but humans have no other dwelling place. our actions can destroy this place but they can also turn it into a home where everyone feels safe and secure. facing the covid- pandemic is an opportunity to make ourselves at home in the world and to preserve our common home. fact sheet on shelter-in-place the poetics of space conservation medicine and a new agenda for emerging diseases the birth of biopolitics: lectures at the collège de france global catastrophic risks. stockholm: global challenges foundation responding to covid- : how to navigate a public health emergency legally and ethically press conference by secretary-general antonio guterres at united nations headquarters indigenous jingle dress dancing goes "viral" on social media to help heal the world. cbc news global trends in emerging infectious diseases . bioethics and biopolitics. theories, applications and connections identifying sars-cov- related coronaviruses in malayan pangolins understanding home. a critical review of the literature spillover. animal infections and the next human pandemic environmental ethics: duties to and values in the natural world microbial threats to health: emergence, detection, and response united nations. . rio declaration on environment and development. united nations general assembly a / c o n f . / who global influenza preparedness plan. the role of who and recommendations for national measures before and during pandemics publisher's note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations key: cord- - ekgb zx authors: hjálmsdóttir, andrea; bjarnadóttir, valgerður s. title: “i have turned into a foreman here at home.” families and work‐life balance in times of covid‐ in a gender equality paradise. date: - - journal: gend work organ doi: . /gwao. sha: doc_id: cord_uid: ekgb zx this article explores the gendered realities of work‐life balance in iceland during the covid‐ pandemic, in particular how these societal changes reflect and affect the gendered division of unpaid labor, such as childcare and household chores. the study draws on open ended real‐time diary entries, collected for two weeks during the peak of the pandemic in iceland. the entries represent the voices of mothers in heteronormative relationships. the findings imply that, during the pandemic, the mothers took on greater mental work than before. they also described intense emotional labor, as they tried to keep everyone calm and safe. the division of tasks at home lay on their shoulders, causing them stress and frustration. the findings suggest that, even in a country that has been at the top of the gender gap index for several years, an unprecedented situation like covid‐ can reveal and exaggerate strong gender norms and expectations towards mothers. this article is protected by copyright. all rights reserved. the covid- pandemic is not only a health emergency and economic hazard but has also resulted in dramatic changes in people's personal lives, and roles within families have been disrupted. during the pandemic, many countries have taken drastic measures to reduce the spread of the virus, such as social distancing, lockdowns, and closing schools, public institutions, and workplaces. children and adults alike have been forced to stay at home for a shorter or longer time and upturn their lives as the home became the school, the workplace, the playground, sports facility, and family sanctuary. unesco has estimated that more than % of the world's student population, or around , billion students, has been affected by either temporary school closings or restricted services (unesco, ) . this entails increased care responsibilities for parents across the world. even though the number of dual earner households has been increasing for the last decades, findings of several studies indicate that women still bear the burden of childrearing and household labor in industrialized countries (alon, doepke, olmstead-rumsey, & tertilt, ; carlson, petts, & pepin, ; friedman, ; knight & brinton, ; t. miller, ; schwanen, ) . it can therefore be assumed that they are more affected by the closing of schools than their male partners. in fact, several studies (alon et al., ; andrew et al., ; carlson et al., ) and media coverage (see e.g. ascher, ; c. c. miller, ; topping, ) on the impact of covid- on families have indicated complications and challenges, as this unprecedented situation appears to have revealed or exaggerated existing gender inequalities and divisions within families. some have even referred to this strange situation as the s was revisiting homelife (ferguson, ) , indicating a backlash in terms of gender equality and power positions in the home during these circumstances. during previous crises, women have been more likely to either reduce their working hours or temporarily step down from work (alon et al., ; andrew et al., ) . we still pressure for the last few months and that mothers have spent less time on paid work and more time on household responsibilities as compared to fathers during the pandemic (andrew et al., ; carlson et al., ; collins, landivar, ruppanner & scarborough, ; craig & churchill, ; hennekam & shymko, ; manzo & minello, ; qian & fuller, ) . studies have indicated that young children tend to seek help and attention by interrupting their mothers, and that the mothers in turn experience time as more fragmented (collins, ; collins et al., ; sullivan & gershuny, ) which can become a bigger challenge in lockdown as the one during covid- . since the lockdown, more mothers participating in andrew's et al. ( ) research have reduced their working hours and those who have stopped working do twice as much child care and household duties as their male partners who are still working. conversely, in families where the male partner has stopped working but not the female, the parents share childcare and household duties equally even though the mother works at least five hours of paid work a day. qian and fuller ( ) argue that the pandemic is far from being an equalizer when it comes to gender equality, as their research indicates a widening gender employment gap among canadian parents with young children. the pandemic has not only affected schools, as many companies and businesses have been forced to adopt to the circumstances with more working-from-home and telecommuting opportunities for their workers (alon et al., ) . juggling childcare and paid work has been very challenging for parents, but then again, this has meant increased flexibility for many employees, flexibility that has often been discussed as the solution to a better work-life balance, especially for women (gatrell, burnett, cooper, & sparrow, ; sullivan, ; wheatley, ) . however, there are various intricacies around the interactions of gender equality and work-life balance in normal times, which seem to have intensified during the this article is protected by copyright. all rights reserved. pandemic as the pressure on parents' time increases (e.g. andrew et al., ; carlson et al., ) . iceland has been considered a frontrunner, even among the other nordic countries, in gender equality (the world economic forum, ), which makes it a particularly interesting setting in this regard. we believe that times like the covid- pandemic provide a unique opportunity to explore and shed light on deeply entrenched and gendered social structures within the organization of the family. in fact, research has already pointed in that direction (auðardóttir & rúdólfsdóttir, ) . thus, the focus of this study is to look at how the societal changes reflect and affect the gendered division of labor, especially concerning the unpaid labor of childcare and household chores, from the perspectives of mothers in heterosexual relationships. this was done by collecting daily real-time diary entries from almost mothers for two weeks during the peak of the pandemic in iceland while severe restrictions were being followed. important steps towards gender equality have been taken in the western part of the world over the years, not least in the nordic countries. these include improved legal frameworks, rising female employment and educational levels, and improvement in fathers' involvement in childrearing (evertsson, ; eydal & gíslason, ; gíslason & símonardóttir, ; jóhannsdóttir & gíslason, ) . despite these steps, the gender pay gap remains unbridged, reflecting the persistent idea of male provider roles (petersen, penner, & høgsnes, ; snaevarr, ) . iceland's reputation as the most gender equal country in the world has been quite prominent in public discourse and in the media, both in iceland and around the world. this media discourse has portrayed iceland as a paradise for women, implying that gender equality has more or less been achieved in iceland (hertz, ; jakobsdóttir, ; kilpatrick, ; this article is protected by copyright. all rights reserved. tuttle, ), which has even been used for international branding purposes (einarsdóttir, ) . despite the importance of recognizing that the ranking of gender equality as practiced by the global gender gap index, among others, has its limitations and overlooks important institutional variables such as social norms and values (einarsdóttir, ) , certainly iceland is doing well in international comparisons. women's educational attainment in iceland has steadily increased over the last few decades (bjarnason & edvardsson, ) , and in the year , icelandic women had the highest labor ratio among the oecd countries at . %. the same applies to men's labor force participation of . % (oecd, ) . despite this active participation in the labor force, icelandic women have established families at relatively young ages and the average birthrate has been rather high up until very recently in comparison with other northern european countries (hognert et al., ; jónsson, ) . in iceland, as elsewhere, women work part-time jobs in higher numbers, and mothers reduce their labor participation following childbirth more often than do fathers (gíslason & símonardóttir, ) . regardless of international trends towards increased active female participation in the workforce, the labor market is still very gender divided, and the rates of gender segregation both in line of work and educational choices are striking (dinella, fulcher, & weisgram, ) . the same manifestation applies to iceland (snaevarr, ) . over the last few decades, the government of iceland has taken some important steps in making laws and policies to facilitate fathers' involvement in childrearing responsibilities. the most substantial step is probably an act on shared parental leave passed in , which gave parents nine months in total, "dividing the nine months so that three are sharable while each parent has three that are strictly non-transferable" (gíslason & símonardóttir, , p. ) , and was lengthened by a month on january , (act on maternity/paternity leave and parental leave no. / with amendments). in iceland, research has indicated that discourses on motherhood in this article is protected by copyright. all rights reserved. relation to breastfeeding imply more intensive mothering that starts when the children are very young. this is somehow in opposition to the governmental emphasis on gender equality that aim to get fathers more in involved in parenting (gíslason & símonardóttir, ) . despite all these advancements, there are some signs that these have been achieved at a cost and there are some cracks in icelandic's glossy image as the frontrunner of gender equality (einarsdóttir, ) . in recent years, media coverage about people experiencing burnout has been more common, especially among professions like nurses and elementary school teachers (halldórsdóttir, skúladóttir, sigursteinsdóttir, & agnarsdóttir, ; the icelandic nurses' association, ; the icelandic teachers union, n.d.) , which in iceland are typically female professions. it appears that people are increasingly experiencing stress in their everyday live, which, if prolonged, can result in both poor physical and mental health (jónsdóttir, ) . over the last few years, research results from iceland have indicated that conflicts between work and family are quite frequent among icelandic parents, even though they do not consider housework alone to be a great burden (Þórsdóttir, ) . family obligations and issues related to the care of children are more likely to be woven into the mothers' working hours than fathers' (hjálmsdóttir & einarsdóttir, ) . there are also indications that parents are more likely to express difficulties when it comes to everyday chores than are workers without children and that parents experience conflict in balancing work and family (eyjólfsdóttir, ; hjálmsdóttir & einarsdóttir, ; Þórsdóttir, ) . work-life balance refers to the ability of every individual, regardless of gender, to coordinate work and family obligations successfully. work, in this context, refers to paid labor performed outside the home (wheatley, ) . studies have found that, when parents manage to balance family and working life, they are more satisfied with their life, which positively this article is protected by copyright. all rights reserved. impacts their mental and physical health (haar et al., ) . successful work-life balance can, therefore, be considered to be an important public health issue (lunau, bambra, eikemo, van der wel, & dragano, ) . a growing number of people describe increased time pressure in their daily lives and experience time being a scarce resource for all the task in their daily schedules (fyhri & hjorthol, ) . time is gendered, and bryson and deery ( ) have claimed that gender inequalities are sustained by differences in the use and experience of time among men and women and "that 'time cultures' are bound up with power and control" (p. ). research has indicated that men have, on average, more control over their time outside work than women. more claims are laid on women's time from family members. they feel more rushed in their daily lives and are more likely to be expected to attend to household work. women are also more inclined to multitask than men (bryson, ; craig & brown, ; friedman, ; rafnsdóttir & heijstra, ; sullivan & gershuny, ) . for the last few decades, some countries have been changing their policies to improve the opportunity parents have to balance work and family (gatrell, burnett, cooper, & sparrow, ; sullivan, ; wheatley, ) . such policies are often based on more access to subsidized childcare or flexibility. work flexibility has been argued to be desirable and a step towards gender equality, since it has enabled people's work-life balance (gatrell et al., ; haar et al., ; sullivan, ; wheatley, ) . alon et al. ( ) predict that the somehow forced flexibility of many workplaces caused by covid- might last after the pandemic has run its course and be beneficial for both mothers and fathers. nevertheless, work related flexibility has both pros and cons and can even cause stress. the division between work and home can become more blurred when the employees bring their work home and take care of family matters during working hours (hjálmsdóttir & einarsdóttir, ; wheatley, ) . it has also been argued that not all professions offer an this article is protected by copyright. all rights reserved. opportunity to enjoy the of taking work home or having different working hours. such flexibility is often dependent on educational level, as well as being related to the gendered division of the labor market (pedulla & thébaud, ) . female dominated profession, like teachers and nurses, often have strict attendance obligations in their workplaces and less opportunity for work flexibility (pétursdóttir, ; wheatley, ) . men enjoy the opportunity to have flexible working hours or work from home more often, and flexibility can be more likely to have a negative effect on women's careers (friedman, ) . as such, seemingly supportive policies can have different consequences for men and women (pedulla & thébaud, ) . the structure of the family as an institution has changed in recent years, including the composition of families and the roles of the genders, and each family member now has more complex roles (júlíusdóttir, ) . starting a family and having children has turned out to have different effects on the lives of men and women, and it seems to be less beneficial for mothers. more families now rely on dual-earnings, and although the number of females working in paid labor has been on the increase, there is still a lack of active participation among men in the home. this applies to iceland and many other countries (gíslason, ; petersen, penner, & høgsnes, ) . having children and family relations maintain and support gendered positions and divisions of labor in public and private lives. petersen et al. ( ) underline how important it is to take such aspects into consideration when it comes to the positions of men and women on the labor market. t. miller ( ) claims that the reasons behind caring practices and their gendered performances "can be multiple and are interrelated, operating at the interpersonal and broader structural, political, policy and cultural levels" (p. ). research has indicated that social structures and prevailing attitudes can influence the gendered division of labor in relationships this article is protected by copyright. all rights reserved. (dotti sani, ; evertsson, ) . household labor has often been referred to as invisible work (hochschild & machung, ) , and the conceptualization of family work can be ambiguous since scholars often use different explanations of what such work actually entails (robertson, anderson, hall, & kim, ) . here, we follow these lines of thought and the three constructs of family work, commonly referred to in family work studies: housework, childcare, and emotional labor. emotional labor relates to activities relevant to the emotional wellbeing of other family members and giving them emotional support (curran, mcdaniel, pollitt, & totenhagen, ) . in an attempt to distinguish between emotional labor and mental work, robertson et al. ( , p. ) suggest mental work as the fourth construct of family work which "includes the invisible mental work related to managerial and family caregiving responsibilities", such as managing, monitoring, scheduling, knowing, and organizing the family life. mental work cannot be delegated to someone who does not belong to the family, and within families, mothers are much more likely to be household managers (ciciolla & luthar, ; curran et al., ; hjálmsdóttir & einarsdóttir, ; robertson et al., ) . this type of work often goes unnoticed by other family members along with the mental burden that such responsibilities require but impacts the mother's wellbeing with feeling of being rushed and strained in everyday life (ciciolla & luthar, ; craig & brown, ) . it has also been pointed out that it can be difficult to detect mental work since it is quite often closely connected with other activities related to the family (robertson et al., ) . in addition, many parents, especially mothers, experience work-family guilt when combining work and family, experiencing conflict between the tasks in the public and private spheres (borelli, nelson, river, birken, & moss-racusin, ) , which can add to the mental load of everyday life. this article is protected by copyright. all rights reserved. also, people had to ensure that they kept a distance of at least two meters between individuals. this entailed closing of swimming pools, gyms, pubs, and museums. however, no changes were made to the organization of schools (government of iceland, b) from the previous measures. due to these actions, those who possibly could work from home were encouraged to do so (sveinsdóttir, ) . health, ), including no more than children in the same group and groups not being allowed to interact. it was common for students to attend school every other day, for school days to be shorter and for meals to be available for a small part of the student body. parents were, in some cases, encouraged to let their children stay at home if they possibly could, while parents in occupations such as doctors, nurses, and police were identified as priority groups. this meant that they were somewhat less affected by school closures and restrictions. students in th to th grade ( -to -year-olds) had to study from home via distance education. this article is protected by copyright. all rights reserved. after-school care was closed; sports and other extra curriculum actives were cancelled, and children were encouraged to only meet with the kids in their small groups outside school (icelandic association of local authorities, ). as in other countries, all these measures had severe impact on families with children, even though the schools technically never closed, and lockdowns were not imposed. this is the context in which this study was conducted in march and april of . on may , , social distancing restrictions were eased, meaning that all children's activities were more-or-less back to normal (government of iceland, a) -at least for the time being. this article draws from a real-time diary study conducted during the ban on public gathering in iceland. the first week of the diary study started on march th , and the second week kan, ; kitterød & lyngstad, ) . for the purpose of this study, we only analyze and present findings from the open diary entries. according to bolger et al. ( ) , diary studies are well suited to capturing the experiences and particulars of the life of the participants. since this is a real-time study with a minimum of time lapse between the experience and reflections, the likelihood of retrospection is minimized. one of the benefits of real-time diary studies like this one is that events are reported in a natural, spontaneous context. by doing so, the data becomes richer and important contextual information and meanings are pieced together to include in the study. this article is protected by copyright. all rights reserved. the sample is self-controlled as it consists of individuals who responded to an advertisement that we posted in various large and active icelandic facebook groups, such as brask & brall (a sales group with around . members), and through our own extended networks. facebook is the most popular social media in iceland, used regularly by nearly all icelanders (facebook nation, ), which makes it a good forum for reaching a considerable part of the population. in all, parents participated in the study, seven male and female. in an effort to shed light on the everyday life of mothers during covid- , we analyzed the open diary entries from female participants in heteronormative relationships, or mothers. about half of them lived in the reykjavík metropolitan area (n = ) while the others were spread around the country. the number of children in the homes of these mothers varied from one to six, but the majority (n = ) of the mothers had two children. the educational level of the participants was rather high, as a majority of participants held a university degree, with bachelor's degrees and with master's degrees. twenty-eight were in paid labor, four were on parental leave, one was an independent laborer, one was a student, one was both studying and working, one was on sick leave, and one was on disability. in most of the cases, both parents primarily or solely worked from home during the time of the study, and most of them were working full-time the whole period, even though some worked reduced hours due to the pandemic. in all cases, the children could attend schools up to some extent, but with severe restrictions of many sorts. after providing informed consent, participants were asked to answer a questionnaire consisting of background questions. then, they received a daily questionnaire via microsoft forms for two weeks. the purpose of the questionnaire was twofold; to collect structured time-use data (fisher, et al., ) , and open-ended diary entries in which participants would this article is protected by copyright. all rights reserved. write an "old style" diary, reflecting on everyday life during covid- . in the diary entries, participants were asked to reflect on their day, the impact of covid- on their life, division of household duties and responsibilities, and other issues they wanted to share. it is important to consider the risk of failure in distinguishing participants' reports of atypical experiences related to or caused by a major event or general experiences (bolger et al., ) . therefore, participants were asked to reflect specifically on their experiences in the context of covid- . the total word count of the written reflections was around . words, which provided us with rich qualitative data. we analyzed the written reflections drawing on braun and clarke's ( ) phases of thematic analysis. the text was sorted by date and participant before we read it several times, added notes, and discussed the content together. then, we coded the text, applying an inductive approach. this means that the initial coding of the diary entries was open and emphasized understanding the participants' experiences without engaging too much with existing literature and theories. similar codes and text segments were then collated in order to identify repeated patterns of meaning across the data: stress, work-life balance, and division of household duties. participants were promised confidentiality and that measures would be taken to prevent identification. we provided participants with a random personal participant number to ensure their anonymity. information that could link participants' names to the number was deleted right after the data collection period. participants were able to withdraw from the study at any time, and some did for unknown reasons. due to the limited time for the study, we decided to use the most convenient way possible to share information about the research and recruit participants, facebook. that probably affected both the number of participants, as the window of time to recruit this article is protected by copyright. all rights reserved. participants was limited, and how homogeneous the group became, particularly in terms of educational level. analysis of the data generated two themes, presented in two sections. the first concerns the complexities of work-life balance in covid- times, particularly the gendered interactions of stress, work-life balance, and mental work. the second section specifically draws on the emotional labor performed by the women in the study, some of which is represented by how conscious the women were of the well-being of their family members. the diary entries quite clearly described complications and stressful situations as the women were trying to juggle their time between work duties and childcare. they described how strained they were and how their stress level was increasing, using words like overwhelmed, frustrated, tired, annoyed, and angry to describe their situations. below are a few diary entries from mothers who were all working - % that reflect this. in the following example, a mother of a -year-old working in mass media, who worked entirely from home as did her husband, described one of her days like this: "i'm a little anxious because of all this, the situation in society. then, i do not have the energy to do much, only the necessary things. the child wore pajamas the whole day." she mentioned how the whole situation made her feel anxious and drained her energy. this was true of many of the other women, like this mother of three ( , and ) who worked in a nursing home explained: "now we have spent more than a month in quarantine and home-schooling. it has started to take its toll mentally, and the day today was difficult. i was almost in tears." her husband was still working in his workplace while she had taken a leave for the first weeks of covid- . juggling home-schooling, childcare, and work created a lot of pressure on the mothers and some of them described the guilt they were experiencing from feeling that they could not keep this article is protected by copyright. all rights reserved. up with everything. the next example is from a mother who worked full time at her workplace. she had two children, and years old, and wrote about her experience in the follow way. i experienced a slight panic attack on the way home over juggling all these different duties, and i cried a little. i went to the grocery store to get some time for myself and shopped for my sister who is in quarantine . . . no one has energy to start putting the kids to bed, so they went to sleep too late. . . jesus, how the parental-fuse is short, and i feel guilty about that. as these examples show, the mothers experienced stress, a lack of energy, and even guilt. as during 'normal' times mothers are more likely to experience work-family guilt, as they feel guilty about not being the best while not spending enough time with their kids, despite being on the run all the time (borelli et al., ; hjálmsdóttir & einarsdóttir, ) . during covid- , this pattern seems to have intensified, supported by research from other contexts as well (e.g. hennekam & shymko, ) . the levels of guilt and how it affected them was addressed by more participants. this mother had two children ( and years old) and was working full time. she and her husband were both working from home. i feel as if i should be able to organize my time better. the day passes, and i have not had time to enjoy one cup of coffee in peace. i do not sit down, but still the apartment is in chaos, the children neglected, and work unfinished. these examples show how much time pressure these mothers were under, and how they experienced guilt over not being able to complete their tasks, neither work nor family related. studies have shown that parents are under significant time pressure in their daily lives (fyhri & hjorthol, ) , especially women (sullivan & gershuny, ) . this pressure seemingly this article is protected by copyright. all rights reserved. increased greatly during the pandemic, as other research has indicated as well (alon et al., ; andrew et al., ) . the above example also indicates a level of multitasking as did entries from several other mothers in the study. according to previous studies (e.g. bryson, ; craig & brown, ; friedman, ; rafnsdóttir & heijstra, ; sullivan & gershuny, ) , women multitask more often than men. the experiences of these women indicate that their perceived time pressure and increased need for multitasking laid heavily on their shoulders. towards the end of the study, when restrictions because of covid- were somewhat lifted, some mothers mentioned that they had just realized how much constraint was caused by having to erase the boundaries between work and family life. in the following diary entry, a mother with a six-month-old child, who worked as a manager in a half time job, explained how. i went to my workplace for the first time in weeks. it was so different. i do not think that i realized until yesterday how much constraint comes from working from home with a child at home. i cannot wait until i can return to my workplace every day and create these boundaries between private life and work. this description is interesting in the light of how flexibility and working from home has often been portrayed as the solution to work-life balance, especially for women, to improve parents' opportunities to better balance work with home life (gatrell et al., ; wheatley, ) . some of the other mothers also described how the boundaries between home and work had been blurred. these experiences indicate that working from home can be difficult for parents, particularly mothers, since they find their work time being interrupted by other duties. this has been documented in previous research (e.g. wheatley, ) . alon et al. ( ) predicted that changes in working practices adopted during covid- might be permanent, but we argue that it is important to consider that working from home and having this article is protected by copyright. all rights reserved. flexible working hours must be considered very carefully in favor of the working parents, bearing in mind gendered social structures. it was clear from the diaries that these unprecedented times revealed or intensified unequal divisions of duties at home, which made the mothers realize and reflect on their positions at home. a mother of two ( and years old), who was a teacher working full time but had started working from home, as well as her husband, said that: today, there was a little clash at home. i have noticed that i usually write the diary before dinner, and a lot of work awaits me afterwards. i usually put the kids to bed, bathe them, tidy up endlessly (usually in the evenings when they are asleep), read, and tuck them in. today, i threw a tantrum over this, . . . but we had a good conversation, and everyone agreed to contribute more . . . [my husband] agreed with me that he could be more present in these daily routines around the kids and home. this example shows how being responsible for the kids and home was on her shoulders, as well being responsible for taking action to change the balance. a few days later, the same woman explained how she was starting to realize how the situation affected the division of tasks, partially because her husband prioritized differently, e.g., around work or exercise, and also because the children asked her for help even though their father was also at home. we knew that the division of tasks is rather equal in our everyday life, but now that we are both working from home, it is obvious that he takes his space when he needs to attend to 'his' things, and i run, and i sprint from my work much more than he does. this example shows how the mother was easily interrupted with household responsibilities, which is in accord with other research findings that suggest that mother's time is more often fragmented (collins, ; collins et al., ; sullivan & gershuny, ) . according to this article is protected by copyright. all rights reserved. andrew's et al. ( ) study, mothers more frequently combined their paid work with other activities during the pandemic. this illustration also supports the notion of time being gendered (bryson & deery, ) , as she perceived that her husband had more control over his time to tend to matters unrelated to work or family. this is in accordance with previous studies on gendered control of time among parents (bryson, ; friedman, ) and new research conducted during covid- that indicate that unpaid work performed by mothers has increased during the pandemic (craig & churchill, ; manzo & minello, ) . the responsibility to divide duties at home lay on the mothers' shoulders, as they explained in several diary entries. this shows how mental work (robertson et.al., ) was central to their gendered realities. as one said, "everyone has to have certain duties in the home if domesticity is supposed to work without me losing my mind." this mother had two teenagers and was working full time from home while her husband worked in his workplace. another one, who had two children ( and years old) and was working full time, explained her situation in this way. it is not easy working from home with a two-year-old. i had to make sure that his father takes him to his parent's home, who were away, so that i could get some peace. then, i put him down to nap after lunch and had to make sure that father and son woke up at the right time . . . usually, i must make sure that things work . . . how are you supposed to be an employee, parent, leisure worker, cook, and a teacher all at once? this outlines quite well how she experiences the responsibility of managing the household. the father is a participant, but she is the manager and carries responsibilities that add to the mental burden of everyday life (ciciolla & luthar, ) , exacerbating to the mental draining women have felt during covid- (hennekam & shymko, ) . another this article is protected by copyright. all rights reserved. mother, with a two-year-old child, who worked full time from home along with her husband, similarly wrote that: i have turned into a foreman here at home. i am trying to get clearer oversight over what has to be done and activate my husband to prevent everything from becoming a mess, and i do not want to take care of it all by myself. so, i had a family meeting and put up a clear division of duties. this mother also wrote that, on an everyday basis, they did not have a clear division of tasks, but during covid- , it became necessary. this indicates that times of crisis can reveal deeply rooted norms and structures on gender roles within the home. the experience of another mother, who had three children ( , and years old), further supports this. she was a care worker and she and her husband were both working in their workplaces. i became tired today and reprimanded my husband. i take care of the management, division of tasks and responsibility for the children's education and practices. i feel like we are dangerously close to the gender development as it was before the middle of the last century. also, it is my responsibility to remind [him] of that this is not supposed to be like this, so that also adds to my basket of duties. all of these examples show how the situation during the pandemic revealed and exaggerated the mothers' roles as household managers (ciciolla & luthar, ; curran et al., ) . they planned and organized family life to make sure that everything worked. this is consistent with research from australia where mothers felt unsatisfied with the division of labor in their homes during the covid- (craig & churchill, ) . drawing on previous studies (e.g. craig & brown, ) , this invisible mental work became a burden for the women and clearly affected their everyday wellbeing. interestingly, this also added to their this article is protected by copyright. all rights reserved. duties, as they became somewhat responsible for getting other people in the household, particularly the fathers, to take on more responsibility to even the load. some of the women in the study described how they made an effort to hide their stress and anxiety from their children and other family members in order to ease the atmosphere and keep the family calm. in accordance with studies and theories of gendered aspects of emotional labor (ciciolla & luthar, ; craig & brown, ; robertson et al., ) , the women performed that kind of labor in addition to other duties. this is reflected in the words of a mother of two children, nine and ten, working full time mostly from home with a husband who mostly worked away from home. the days are getting really difficult, and i will take my first summer holiday tomorrow. the younger child is not happy about [the situation] and cries over everything that seems like adversity, even as little things like when she is asked to read or tidy up. the little patience i have is running out, but i try my best not to let her see it. the day after, the situation became worse, as the family was facing possible quarantine and they were waiting for further directions from a national team of contact tracers. she wrote this in her diary. now we possibly have to start days of quarantine. we will know tomorrow. at least we have to remain in quarantine for hours until the test results. i am pained by this situation, but i try to stay positive, especially with my husband and children. they cannot may not see [my] anxiety because then they become afraid. i continue to meditate and do yoga; everything will be ok. this article is protected by copyright. all rights reserved. as these diary entries show, this mother found it important to keep her anxiety to herself in order to keep the family calm. another mother with a five-and eight-yearold who worked in an elementary school was working full-time from home as did her husband. she described how difficult her day was, as one of her children cried a lot because she missed her friends so dearly. the day "was spent tending emotionally to the children." the women in the study had to devote time to emotional labor instead of work. another reflected on how she tried to calm the people around her. i am really focused on being well informed so that i can answer [questions] and calm elderly people and children around me. i am very cautious and try to follow up with my children on how to be careful without frightening them. one of the women explained how her husband was irritated because of the situation and tired because he was working shifts, so much so that he "exploded" at times. therefore, she made an effort to try to make sure that his irritation did not affect the children ( , and years old) too much. she was working % from home while he was working away from home. she explained. i take care of the children and the home every day, since he is asleep until he has to go to work or loafs around on the computer. everyone has a short fuse, but i make sure that i intervene and suggest a break, that everyone goes out, plays or when the children are starting to nag. it is difficult to be able to concentrate on work. this article is protected by copyright. all rights reserved. another example of the women's emotional labor included dealing with difficult thoughts and decisions related to the pandemic. a mother of two ( and years old) wrote that: despite a lot of physical resting lately, my mind has been spinning around worries and difficult decisions. should the children attend school or not? can i meet my father [who has heart problems] if i keep a m distance? is it necessary to disinfect all the groceries? according to curran et al. ( ) , this kind of work can be called emotional labor, as these women emphasize how they tend to the emotional wellbeing of other family members. this kind of labor was not limited to their children; it also applied to other relatives. for example, the emotional labor involved phone calls to parents or other relatives, sometimes several times a day. other studies have shown that this is often part of women's routines (ciciolla & luthar, ; robertson et al., ) . the months of covid- have been and are quite challenging for many families, and the drastic measures that have been taken to prevent its spread have meant severe changes to people's participation in everyday live and social contact (brooks et al., ) . in accordance with new research on the effect of covid- on everyday life (andrew et al., ; carlson et al., ; collins et. al., ; craig & churchill, ; manzo & minello, ; qian & fuller, ) , the time during the social restrictions was not easy. it is apparent from the diary entries of our participants that the period with the tightest restrictions was challenging for the mothers and their families, and they expressed feelings of frustration and being overwhelmed. despite advances in gender equality over the last decades, drastic events such as during the this article is protected by copyright. all rights reserved. covid- pandemic, can elicit situations that we do not necessarily pay attention to in our busy daily lives or even resist recognizing. in iceland, which has been portrayed as a "paradise for women" (jakobsdóttir, ) and which is considered a global frontrunner when comes to gender equality (the world economic forum, ), parents face challenges related to gendered realities, and gender equality has not been achieved regardless of what the dominant discourse may say. despite remarkably high labor participation, there are indications that women in iceland shoulder the greater burden of childcare and household labor (hjálmsdóttir & einarsdóttir, ; Þórsdóttir, ) , as elsewhere around the world (alon et al., ; knight & brinton, ; t. miller, ) . the diary entries of the mothers in the study demonstrates a gendered reality in which they experience burdens that seem to have escalated during the pandemic. it was stated in a media coverage that the covid- pandemic had brought back the s regarding gendered division of labor (ferguson, ) . the same phrase was used by one of our participants. some of the women wrote about how surprised they were about how much of the household chores and the childcare remained on their shoulders. despite some steps towards gender equality in the last few decades, there are few signs of a revolution, especially within the home. the focus on the struggle for gender equality has somehow been more on the public sphere, as reflected in the measures used for gender equality indexes that overlook the gendered division of labor in the home along with social norms and values (einarsdóttir, ) . one of the patterns identified in the reflections of the women in our study was how they seemed to be stunned by how uneven the division of labor turned out to be during the pandemic and how much time and energy they devoted to household chores and the management of the household, carrying out the mental work within the family. their experiences support the idea of time being gendered (bryson, ) , as they described how this article is protected by copyright. all rights reserved. their time was more restricted from childcare and household chores and how they prioritized their children's needs over work. when the families were pushed into the home due to lockdowns and social restrictions, women faced an uneven division of labor that they might have been too busy in our daily lives to observe or might have found difficult to acknowledge. we argue, based on this study as well as emerging findings from larger studies from different countries (andrew et al., ; collins et. al., ; craig & churchill, ; manzo & minello, ; qian & fuller, ) , that the situation caused by the pandemic brought to light pre-existing gendered performances and social structures, more than it caused drastic gendered division of labor in the home. in iceland, where the dominant discourses have centered on the country as a global leader in gender equality, the existing inequalities have been overlooked. our findings suggest that there is an uneven division of labor within icelandic homes as the mothers in the study bore the burdens of housework, childcare, emotional labor, and household mental work. if the aim is to close the gender gap both in the public and the private sphere, a focus on the gendered division of labor within the home is essential. the impact of covid- on gender equality. crc tr discussion paper series how are mothers and fathers balancing work and family under lockdown? the institute for fiscal studies coronavirus: 'mums do most childcare and chores in lockdown'. bbc news chaos ruined the children's sleep, diet and behaviour: gendered discourses on family life in pandemic times. gender, work & organization. online advance publication university pathways of urban and rural migration in iceland diary methods: capturing life as it is lived household time allocation. theoretical and empirical results from denmark gender differences in work-family guilt in parents of young children successful qualitative research. a practical guide for beginners the psychological impact of quarantine and how to reduce it: rapid review of the evidence time, power and inequalities public policy,'men's time'and power: the work of community midwives in the british national health service us couples' divisions of housework and childcare during covid- pandemic invisible household labor and ramifications for adjustment: mothers as captains of households is maternal guilt a cross-national experience? qualitative sociology, - . advance online publication covid- and the gender gap in working hours. gender, work & organization, - . advance online publication feeling rushed: gendered time quality, work hours, nonstandard work schedules, and spousal crossover dual-earner parents' couples work and care during covid- . gender, work & organization, - . advance online publication gender, emotion work, and relationship quality: a daily diary study sex-typed personality traits and gender identity as predictors of young adults' career interests men's employment hours and time on domestic chores in european countries all that glitters is not gold: shrinking and bending gender equality in rankings and nation branding gender ideology and the sharing of housework and child care in sweden samraeming fjölskyldulífs og atvinnu: hvernig gengur starfsfólki á íslenskum vinnumarkaði að samraema fjölskyldulíf og atvinnu? (m.sc. dissertation) iceland magazine i feel like a s housewife': how lockdown has exposed the gender divide. the guardian exploring new ground for using the multinational time use study. iser working paper series still a "stalled revolution"? work/family experiences, hegemonic masculinity, and moving toward gender equality children's independent mobility to school, friends and leisure activities work-life balance and parenthood: a comparative review of definitions, equity and enrichment parents, perceptions and belonging: exploring flexible working among uk fathers and mothers faeðingar-og foreldraorlof á Íslandi: Þróun eftir lagasetninguna árið mothering and gender equality in iceland: irreconcilable opposites? iceland eases restrictions -all children's activities back to normal stricter measures enforced in iceland: ban on gatherings of more than people outcomes of work-life balance on job satisfaction, life satisfaction and mental health: a study across seven cultures tengsl streituvaldandi þátta í starfsumhverfi, svefns og stoðkerfisverkja hjá millistjórnendum í accepted article this article is protected by copyright. all rights reserved. heilbrigðisþjónustu [correlation between stressful factors in the working environment coping with the covid- crisis: force majeure and gender performativity. gender, work & organization why iceland is the best place in the world to be a women. the guardian mér finnst ég stundum eins og hamstur í hjóli the second shift: working parents and the revolution at home high birth rates despite easy access to contraception and abortion: a cross-sectional study icelandic association of local authorities how to build a paradise for women. a lesson from iceland vinnutengd streita. orsakir, úrraeði og ranghugmyndir [work related stress. causes, resources, and misbeliefs Ársrit um accepted article this article is protected by copyright childbearing trends in iceland, - : fertility timing, quantum, and gender preferences for children in a nordic context fjölskyldur -umbreytingar, samskipti og skilnaðarmál reykjavík: félagsvísindastofnun háskóla Íslands measuring housework participation: the gap between "stylised" questionnaire estimates and diary-based estimates iceland has become the first country to officially require gender pay equality diary versus questionnaire information on time spent on housework-the case of norway one egalitarianism or several? two decades of gender-role attitude change in europe a balancing act? work-life balance, health and well-being in european welfare states ) mothers, childcare duties, and remote working under covid- lockdown in italy: cultivating communities of care nearly half of men say they do most of the home schooling. percent of women agree. the new york times paternal and maternal gatekeeping? choreographing care auglýsing um takmörkun á skólastarfi vegna farsóttar labour force statisics can we finish the revolution? gender, work-family ideals, and institutional constraint from motherhood penalties to husband premia: the new challenge for gender equality and family policy, lessons from norway within the aura of gender equality: icelandic work cultures, gender relations and family responsibility covid- and the gender employment gap among parents of young children balancing work-family life in academia: the power of time mothers and mental labor: a phenomenological focus group study of family-related thinking work gender differences in chauffeuring children among dual-earner families launamunur karla og kvenna [the pay gap between men and women key figures, statistics bad mum guilt': the representation of 'work-life balance'in uk women's magazines speed-up society? evidence from the uk and time use diary surveys kórónuveiran: fyrirtaeki hvött til að þjálfa fólk í fjarvinnu [the coronavirus: companies encourage to train workers for distance work the directorate of health and the department of civil protection and emergency management the icelandic teachers union. (n.d.). streita og kulnun the global gender gap report working mothers interrupted more often than fathers in lockdown -study. the guardian one country is making sure all employers offer equal pay to women covid- educational disruption and response good to be home? time-use and satisfaction levels among home-based teleworkers vinna og heimilislíf reykjavík: félagsvísindastofnun háskóla Íslands this article is protected by copyright. all rights reserved. key: cord- - yy exry authors: burton, jennifer k; bayne, gwen; evans, christine; garbe, frederike; gorman, dermot; honhold, naomi; mccormick, duncan; othieno, richard; stevenson, janet e; swietlik, stefanie; templeton, kate e; tranter, mette; willocks, lorna; guthrie, bruce title: evolution and effects of covid- outbreaks in care homes: a population analysis in care homes in one geographical region of the uk date: - - journal: the lancet healthy longevity doi: . /s - ( ) -x sha: doc_id: cord_uid: yy exry background covid- has affected care home residents internationally, but detailed information on outbreaks is scarce. we aimed to describe the evolution of outbreaks of covid- in all care homes in one large health region in scotland. methods we did a population analysis of testing, cases, and deaths in care homes in the national health service (nhs) lothian health region of the uk. we obtained data for covid- testing (pcr testing of nasopharyngeal swabs for severe acute respiratory syndrome coronavirus [sars-cov- ]) and deaths (covid- -related and non-covid- -related), and we analysed data by several variables including type of care home, number of beds, and locality. outcome measures were timing of outbreaks, number of confirmed cases of covid- in care home residents, care home characteristics associated with the presence of an outbreak, and deaths of residents in both care homes and hospitals. we calculated excess deaths (both covid- -related and non-covid- -related), which we defined as the sum of deaths over and above the historical average in the same period over the past years. findings between march and aug , , residents at care homes ( beds) were tested for covid- when symptomatic. a covid- outbreak was confirmed at ( %) care homes, of which ( %) were care homes for older people. the size of care homes for older people was strongly associated with a covid- outbreak (odds ratio per -bed increase · , % ci · – · ). confirmed cases of sars-cov- infection were recorded during the study period, and covid- -related deaths. ( %) covid- -related cases and ( %) covid-related deaths occurred in five ( %) of care homes, and ( %) cases and ( %) deaths were in ( %) care homes. ( %) covid- -related deaths occurred in the care homes with a confirmed covid- outbreak, ( %) deaths were in hospital, and two (< %) were in one of the care homes without a confirmed covid- outbreak. at the care homes with a confirmed covid- outbreak, excess non-covid- -related deaths were reported, whereas ten non-covid- -related excess deaths were observed in the care homes without a confirmed covid- outbreak. fewer non-covid- -related deaths than expected were reported among care home residents in hospital. interpretation the effect of covid- on care homes has been substantial but concentrated in care homes with known outbreaks. a key implication from our findings is that, if community incidence of covid- increases again, many care home residents will be susceptible. shielding care home residents from potential sources of sars-cov- infection, and ensuring rapid action to minimise outbreak size if infection is introduced, will be important for any second wave. funding none. internationally, institutional care settings for older adults have seen high rates of severe acute respiratory syndrome coronavirus (sars-cov- ) infection and covid- related mortality among residents and staff. in the uk, care homes provide -h nursing care, residential care, or both for older adults who cannot be accommodated at home or in other settings, with increasingly high frailty and needs. , in the uk and other countries, including the usa, care home funding is typically a mix of self-funded and state-funded, and the care sector has been under increasing financial and capacity strain because of population aging and constraints on public funding. robust national data for the care home population are scarce and data sources are fragmented, meaning our understanding of the needs and outcomes of residents is poor. , early epidemiological data identified very high mortality from covid- in some care home settings, for example, affecting % of residents in one us facility. atypical presentation of covid- is prevalent, with common presenting symptoms of delirium, postural instability, and diarrhoea in the absence of fever or cough. , the role of presymptomatic and asymptomatic transmission has become clearer over time. in one us study, % of residents testing positive for covid- were asymptomatic at the time of testing, with most developing symptoms within the next days after testing. in the uk, all residents and staff at four care homes in london with covid- outbreaks were tested twice, week apart. % of residents tested positive, of whom % were asymptomatic at the time of testing and % had atypical symptoms. % of staff tested positive, all of whom were asymptomatic, and viral genome sequencing found evidence of multiple introductions of infection. england had the highest cumulative rate of excess deaths (ie, deaths over and above the historical average for the time of year) in europe up to the end of may, , with scotland third highest, and deaths in care homes were a major contributor to this excess. national data are aggregated, which means our understanding of variation between care homes is limited. the aim of our study was to describe the evolution of outbreaks of covid- in all care homes in one health region in scotland, specifically the timing of outbreaks, number of confirmed cases in residents, care home characteristics associated with the presence of an outbreak, and deaths of residents in both care homes and hospitals. our study included registered care homes and one short-stay and respite facility run by the national health service (nhs), which were located within the nhs lothian health region in the uk, encompassing the city of edinburgh and surrounding region. nhs lothian is part of nhs scotland, which provides universal healthcare coverage funded by the uk taxpayer, and so there are no fees for the patient or co-payments for medical care. nhs scotland health regions have responsibility for delivery of all nhs care, including public health in their respective geographical area. state funding for social care is means-tested and as a result either funded by local authorities or self-funded with some state funding for personal or nursing care. social care provision for older people is primarily delivered by private providers. roughly million people live within the geographical area covered by the nhs lothian health evidence before this study we searched pubmed and the medrxiv preprint server on aug , , with the terms ("long-term care" or "nursing home" or "care-home" or "residential care") and ("covid- " or "sars-cov- " or "covid- and sars-cov- "). we restricted our search to publications in english. existing published work highlights the large effect that covid- has had in care homes and that atypical disease presentation, asymptomatic carriage, and a presymptomatic infectious period are common in both residents and staff. one living systematic review confirmed the international outbreak burden among residents and staff and high but varied international mortality rates. international modelling studies have not accounted for the care home environment and context and have made estimates informed by general community transmission of infection. only one peer-reviewed study was identified in which us nursing home characteristics associated with outbreaks were assessed, finding associations with larger facility size, urban location, and ethnicity but no association with quality ratings or ownership. we used publicly available national data for severe acute respiratory syndrome coronavirus (sars-cov- ) testing and deaths from covid- , which were linked to regulatory public health data, to describe the evolution of outbreaks of covid- in all care homes in one large health region in scotland. care homes for older adults had the highest proportion of outbreaks, and the size of these care homes was the key characteristic associated with an outbreak. many care homes recorded only one case or had short outbreaks, but sustained or repeated outbreaks were also seen. overall, almost one in six residents had confirmed sars-cov- infection, but cases were concentrated in a few care homes. excess deaths (ie, the sum of deaths over and above the historical average in the same period over the past years), both covid- -related and non-covid- -related, were concentrated in care homes with a confirmed outbreak of covid- , not only suggesting that quality and safety of care in the wider care system was not seriously affected but also consistent with covid- having a direct effect on care for other conditions in care homes with an outbreak. despite the large effect of covid- on the care home sector, a large susceptible population of residents remains in care homes that avoided an outbreak in the first wave of sars-cov- infection or that had a small outbreak. care homes for older people, particularly those of large sizes, are likely to be the most vulnerable to further outbreaks if community transmission rises in the future. systematic and regular testing and use of whole-genome sequencing is needed to inform understanding of transmission dynamics and support future outbreak detection and management. future research should consider the built environment and organisation of care as other potentially modifiable factors to support infection control. improving the quality of national and local data on the care home population is a priority both for covid- and for ensuring this vulnerable population receives better care in the future. region, of whom about % are aged years and older and approximately % are aged years and older. four integration joint boards, which have the same boundaries as local authority areas in the nhs lothian region, commission community services. key milestones in national policy and the local public health response to covid- are summarised in panel . local public health data for testing of care home residents for covid- were linked to publicly available data on care home services, collated by the national regulator (the care inspectorate) and published in april, . deaths of residents in care homes were identified from national records of scotland (nrs) death registrations and were defined as deaths with an institutional code compatible with a care home, with manual verification by study authors that the address recorded was that of a care inspectorate registered care home service. deaths of care home residents in hospital were identified from nrs death registrations for which the place of death was a hospital, with addresses linked to care inspectorate registered care home addresses using postcode and text matching. linked public health data and data for deaths are complete from march to aug , . since our analysis was of public health data at the care home level (with no individual or identifiable patient data), separate research ethics review was not needed and this work was undertaken under generic approval by the lothian research safe haven and by the nhs lothian and university of edinburgh dataloch partnership agreement. care inspectorate data are publicly available and licensed under open government, version . . in accordance with nhs lothian public health team practice during the covid- pandemic, we defined the start of a covid- outbreak in a care home as the date when the first resident had a positive test for sars-cov- , using regional virology laboratory pcr testing of nasopharyngeal swabs. we obtained care inspectorate data for five variables: ( ) type of care home, which was categorised into care homes for older people, care homes for other adult services (physical or sensory impairment, alcohol and drugs, mental health, respite care, or bloodborne viruses), care homes for people with learning disabilities, and care homes for children and young people; ( ) number of beds, with number of registered places used as a proxy in care homes where not available; ( ) risk assessment document score, which is a care inspectorate score to determine extent and frequency of inspection based on global assessment of care service quality and safety (low, medium, and high risk); ( ) care home ownership (private, voluntary or not for profit, and local authority); and ( ) locality (ie, the integration joint board or local authority in which the care home is located). we used the number of outbreaks of any infectious disease in care homes (primarily norovirus, influenza, and scabies) reported to nhs lothian public health since march, , as a measure of historical infection control practice (categorised into , - , and ≥ outbreaks). we did not investigate availability and quality of personal protective equipment (ppe) because no reliable data were available at the care home level during the study period. death was examined in terms of week of death registration, which is legally required to be within days of death, although most deaths are registered within in the early phases of the covid- epidemic, nhs scotland implemented contact tracing to contain community spread of sars-cov- . this time was also used to prepare the nhs for an anticipated influx of seriously ill patients needing hospital care and, frequently, intensive care. in addition to redesigning patient flows to manage increased infection risk, this process meant assertively discharging patients who needed hospital care, with an estimated people in scotland discharged from hospital to care homes early in the epidemic. the first positive cases of covid- were diagnosed within the nhs lothian health region, mainly in travellers returning from italy and spain. as positive cases began to be reported and numbers rapidly grew across scotland, the scottish government and public health scotland produced a series of guidance documents, in line with similar publications by public health england. the first document related to nursing home and residential care home residents and suspended routine visiting, just as the uk moved from the containment phase to the delay phase of the uk government's covid- response. documents were regularly updated and clarifications made about infection control. concerns arose about the availability and distribution of ppe, with many reports of scarcity for frontline nhs staff, particularly those in the social care sector. contact tracing was halted nationally on march , ; subsequently, covid- testing resources were directed towards hospitalised patients and, later, towards nhs staff. testing of care home residents was available within the nhs lothian health region from the first week of march but was initially restricted to only the first few cases, to establish the presence of an outbreak, with subsequent residents who showed symptoms of covid- assumed to have the disease. the exception to this policy was care homes with large and prolonged outbreaks, in which wider testing was deployed. similar to other parts of the uk, testing in scotland was extended to care home staff and, as availability of testing improved, the scottish government specified that all care home residents who had symptoms of covid- should be tested from april , . importantly, increased responsibility was placed on directors of public health for management of the epidemic in care homes, and nhs health regions were required to provide daily updates to scottish government. public health and health and social care partnerships increasingly provided support to care homes in relation to more systematic testing, infection control, ppe supply, and ensuring safe staffing. availability of resident testing was higher within the nhs lothian health region than in many other areas because the regional virology laboratory had capacity, and a public health outreach team was used to swab residents when care homes were unable to do so themselves. nhs=national health service. sars-cov- =severe acute respiratory syndrome coronavirus . ppe=personal protective equipment. days. deaths involving covid- (referred to hereafter as covid- -related deaths) were defined as any death for which a record of confirmed (international classification of diseases version [icd- ] code u . ) or suspected (icd- code u . ) covid- was made on the death certificate. all other deaths were defined as non-covid- -related. we used logistic regression at care home level to estimate univariate odds ratios (ors) of the presence of an outbreak by care home characteristics. we then fitted multi variate models, only retaining signifi cantly associated characteristics. since care home characteristics systematically varied by type of care home, the primary analysis was of care homes for older people and a sensitivity analysis was done of all care homes; for example, care homes for older people were much larger (median beds vs eight for all other types of care homes combined) and were more likely to be in private ownership ( % vs %). the number of beds for each type of home was divided by and fitted as a continuous variable; estimated ors are per -bed increase, which we considered clinically meaningful. the evolution of the covid- epidemic at care home and resident level was investigated descriptively, and the estimated dissemination ratio (edr) in care homes was calculated as the number of cases in a -day period divided by the number of cases in the preceding days. edr requires no assumptions about transmission routes or infectious periods and gives a direct assessment of the slope of the epidemic curve and how that is changing. an edr greater than indicates acceleration of an outbreak and an edr less than indicates slowing. we defined excess deaths (both covid- -related and non-covid- related) as the sum of deaths over and above the historical average in the same period over the past years; we examined excess deaths in all care homes and separately in those with and without an outbreak (but not further stratified because of small numbers). we used ibm spss statistics version . for all analyses. this study received no external funding. the corresponding author had full access to all data in the study and had final responsibility for the decision to submit for publication. between march (week of ), and aug , (week ), residents of care homes were tested for sars-cov- infection. ( %) care homes provided services for older people, ( %) were for other adult services, ( %) were for people with learning disabilities, and ( %) were for children and young people. these care homes had beds, of which ( %) were in care homes for older people. the first test for sars-cov- in a care home resident was done in the week beginning march , (week ) and the first positive test was in the week beginning march , (week ; figure a ). outbreaks were recorded in weeks - (weeks starting march to april ), with a further outbreaks in weeks - (weeks starting april to may ). the final outbreak started on may , , and the last positive test in a care home resident was on june , . the number of care home residents tested per day rose rapidly, peaking at - towards the end of april, , when policy changed from testing the first few individuals with symptoms in each care home to testing all people with symptoms. thereafter, the number of residents tested per day fell until a change in nhs lothian policy to test all residents in care homes with ongoing outbreaks at the end of may, (figure a). the -day moving average of number of residents with a confirmed positive case rose rapidly, peaking at per day on april , (figure b), then falling again. mirroring this trend, the edr was · on april , , falling to · on april , ; a second peak was noted, with an edr of · on april , , and a steady decline to below · from april , , with values remaining at this level (appendix p ). of care homes in the nhs lothian region, ( %) had a confirmed covid- outbreak. among these care homes, ( %) had one or more residents with negative tests before their first confirmed case (table ) . cases of sars-cov- infection were confirmed during the study period. ten ( %) of care homes only had one case, and ( %) had between two and four cases. ( %) of all cases were in just five ( %) of care homes, and ( %) of all cases were in ( %) care homes, which were widely spread across the nhs lothian region. the median number of positive cases per care home was seven (iqr - , range - ). the median detected incidence of covid- (confirmed cases per number of beds) in care homes was · % (iqr · - · , range · - · ), but no relation was noted between the number of beds in the care home and detected incidence (figure c). considerable heterogeneity was seen in patterns of diagnosed infection, with ( %) of care homes with a confirmed outbreak of covid- only having cases diagnosed on day and nine ( %) only having cases diagnosed over - days whereas only three ( %) of the other types of care homes did (table ) . univariate analysis of care homes for older people showed significant associations between a covid- outbreak and number of beds (per -bed increase, or · , % ci · - · ) and a history of previous outbreaks of infectious diseases (five or more vs none, · , · - · ), but no association was seen with regulatory risk assessment score, ownership, and locality (table ) . once care home number of beds was accounted for, no other characteristic was associated with the presence of an outbreak. similar results were found in the sensitivity analysis of all care homes (appendix p ). care home residents died and had covid- recorded on their death certificates. of these covid- related deaths, ( %) occurred in care homes and ( %) occurred in hospital. ( %) covid- -related deaths in care homes occurred in five ( %) care homes and ( %) were in ( %) care homes. the number of covid- -related deaths rose rapidly during the study period, peaking at - per week in weeks - (weeks beginning april to may , ; appendix p ). of covid- -related deaths occurring in care homes, ( %) were in the care homes with a confirmed outbreak. in these care homes, excess deaths were recorded in weeks - (weeks beginning march to june , ), representing % of all deaths in these care homes in that time, of which ( %) deaths were covid- -related and ( %) were non-covid- related excess, after which mortality was below historical averages. the peak ratio of observed to expected deaths was · in week (week beginning april , ). from week (week beginning june , ), total deaths consistently fell below expected levels, although five covid- -related deaths were recorded in this period (figure a). by comparison, two covid- -related deaths were reported in care homes without a confirmed outbreak; on the death certificates, one death was confirmed as covid- -related and one was suspected as covid- -related, but both were untested and not known to public health scotland. an additional ten non-covid- -related excess deaths were recorded in these care homes in weeks - (weeks beginning march to april , ); fewer deaths occurred throughout the remainder of follow-up than expected compared with historical averages (figure b). deaths of care home residents in hospital were non-covid- related, which is fewer than expected compared with historical averages ( figure c ). the findings of our population analysis show that, in the nhs lothian health region of the uk, just over a third of care homes ( of [ %]) had a confirmed covid- outbreak, but with wide variation in the size, duration, and pattern of outbreaks. the number of beds was strongly associated with the presence of an outbreak. no other care home characteristics were associated with outbreaks once number of beds was accounted for. however, care home size was not associated with outbreak size measured as the percentage of residents subsequently confirmed to have covid- . many care homes had only one reported case of covid- or a short outbreak, but in some care homes sustained or repeated outbreaks were reported. covid- -related deaths were recorded in care homes. in the care homes without a confirmed covid- outbreak, only two covid- -related deaths were reported; neither person had been tested for sars-cov- . ten non-covid- -related excess deaths were recorded in these care homes early in the epidemic period (march to april , ). care home residents died while in hospital with covid- , which was recorded on the death certificate. fewer non-covid- -related deaths occurred in hospital during the epidemic, which is consistent with some shift of deaths that would have occurred anyway from hospital to care home. the strengths of our analysis are that we included all care homes in one geographical area using linked data and investigated deaths in both care homes and hospitals. availability of resident testing in this region was higher and started earlier than in many other areas because the regional virology laboratory had capacity and a public health outreach team supported rapid testing as part of the outbreak response programme. the limitations of our analysis include under-ascertainment of cases due to false-negative tests and that testing policy varied over time. case numbers are, therefore, likely to be underestimated, particularly early in the epidemic. however, the absence of a large mortality effect in care homes without a confirmed covid- outbreak mean it is unlikely that any large outbreaks were missed. the decision to include covid- on death certificates, and day the first resident was tested for covid- days on which one or more residents were diagnosed with covid- figure : patterns of outbreak for care homes with an outbreak whether to code as confirmed or suspected covid- , probably also varied over time in relation to test availability. we, therefore, report the uk-wide definition of covid- -related deaths without subgroup analysis, but interpretation should be cautious. finally, we included care homes in our analysis and, thus, it is relatively underpowered to examine associations with care home characteristics. data from the care quality commission show that % of care homes in england had reported an outbreak of covid- by may , , compared with % of care homes in the nhs lothian health region in this study. in scottish care homes, a larger proportion of covid- deaths are reported to have occurred than in english care homes ( % vs %), , although these proportions are both within the range reported internationally (from % in hungary to % in canada). this difference could reflect differing hospital admission practices in england and scotland since approximately % of covid- -related deaths of care home residents in england are in hospital versus only % in our study. a london point-prevalence study of four care homes with about residents found % mortality, higher than that noted in our study, which probably reflects selection of care homes with large outbreaks. similar to our study findings, us data showed a significant association between confirmed covid- outbreaks in older people's nursing homes and home size and no association with regulatory quality ratings. by contrast with our findings, no association between presence of outbreaks and care home size was noted in a study of nursing homes for older people in ontario, canada, but, similar to our findings, the concentration of confirmed cases in care homes was considerable ( % of care homes had % of confirmed cases). in the same study, crowding (ie, more shared rooms, bathrooms, or both) was not associated with a confirmed covid- outbreak but it was associated with larger outbreak size and higher mortality rates, similar to findings of the uk vivaldi study, in which covid- incidence increased with higher occupancy and lower staffing ratios. a study in the us state of georgia reported associations between worse infection control practice and larger outbreak size. overall, there are consistent associations between care home size and the presence of an outbreak, whereas other characteristics could contribute more to outbreak size once an outbreak starts. the effect of covid- on care homes has been very large; in our study, cases and deaths were concentrated not only in care homes with a confirmed outbreak but also within this group, since a quarter of cases and deaths were in just five care homes and half were in care homes. however, most care homes for older people have not had a confirmed outbreak of covid- , or have rapidly controlled their outbreak, meaning that large numbers of residents will remain susceptible to sars-cov- infection. any future increase in community transmission is, therefore, likely to drive further care home outbreaks without stricter measures to control ingress. excess deaths not attributed to covid- largely occurred in care homes with a confirmed outbreak. at least some of these deaths would have happened anyway in hospital since we observed lower than expected numbers of non-covid- -related deaths of care home residents in hospital during the epidemic period. this finding suggests that non covid- -related excess deaths in care home residents in this health region were data are median (range) or n (%). *for physical or sensory impairment, alcohol and drugs, mental health, short-break and respite care (including a national health service-run service), and blood-borne viruses. not strongly related to wider changes to the system of care (eg, inappropriate withdrawal of primary care). whether some deaths not attributed to covid- were due to covid- (eg, false-negative tests or undiagnosed covid- in residents presenting with atypical symptoms) or were an indirect effect (eg, related to changes in care for uninfected residents when staff were overwhelmed or short-staffed) needs further detailed investigation. our analysis highlights that univariate associations with care home characteristics can be misleading, because many characteristics are strongly associated with care home size, which unsurprisingly dominates associations with the presence of a covid- outbreak. although care home size cannot be easily altered, discrete, selfcontained units could be created within care homes comprising smaller numbers of staff and residents. such efforts will be complicated by the built environment of the individual care home and will be difficult to sustain without rapid outside support during any large covid- outbreak, when staff absence through illness risk can compromise safe care. additional measures to respond to new outbreaks of covid- will be needed, including maintaining good provision of ppe, better support for infection control, active surveillance of residents and staff to ensure early detection of outbreaks and ongoing transmission, support for staff self-isolation, and staffing support for care homes with outbreaks (panel ). however, covid- has high infectivity, which is reflected in high rates of nosocomial infection in both health and social care settings. infection control is intrinsically difficult in care home settings because a priority is to maintain social and cognitive function through interaction. shielding care homes and its residents from further outbreaks is essential, but poses difficulties-for example, in relation to the effect of preventing or minimising family and friends visiting on the quality of life of residents. several outstanding issues need to be addressed. first, sars-cov- transmission dynamics in this context are not well understood, including how infection gets into care homes and the extent to which outbreaks are sustained by ongoing transmission within care homes or by introduction of new infections. more systematic testing of both residents and staff, with whole-genome sequencing to trace transmission chains, will be of great value and help inform public health response. second, in our analysis we investigated high-level care home charac teristics (eg, number of beds) and ignored spatial and other clustering effects, including when care homes have shared ownership. research is needed to understand the relative importance of the built environment, the nature and intensity of staff-resident and resident-resident inter actions (which will vary by resident group), variations in use of agency staff and investment in staff training, access to and effective use of ppe, and infection control procedures. some of these data can be obtained by survey but some might need direct observation of care, which is challenging during an epidemic. third, research is needed to better understand the causes of mortality, including investigating variation in the attribution of death to be covid- related, and the circumstances and likely causes of other deaths. finally, covid- has highlighted how difficult it is to reliably identify who lives in care homes from routine data. thus, our regression analysis is at care home level and we can only estimate incidence using number of beds as the denominator, which has hampered our understanding of the effect of covid- . more broadly, we need care home residence to be accurately recorded to support systematic understanding of the needs and patterns of care of a highly vulnerable but often overlooked population and care sector. similar issues apply to people receiving social care in their own homes, who are also vulnerable and largely invisible in routine data. covid- outbreaks have, up to now, been concentrated within a few care homes, with repeated or sustained outbreaks that have affected a large number of residents. many care homes in the nhs lothian health region have not yet had an outbreak. there is, therefore, considerable risk of further outbreaks with many deaths in care homes if community incidence of covid- panel : additional measures taken to contain outbreaks of covid- in care homes extended staff and resident testing in may, , nasopharyngeal swabbing and pcr testing for sars-cov- was introduced for all staff (permanent and agency) and residents in care homes (and other closed settings such as prisons) with new or sustained outbreaks. a key aim was to identify staff with no or low-level symptoms. for example, staff who tested positive for sars-cov- frequently did not show symptoms meeting the formal case definition for covid- (ie, fever, cough, or loss of sense of smell or taste) but about half of staff showed a range of other low-level symptoms of the disease. staff with positive tests for covid- underwent contact tracing, and advice about self-isolation and household isolation was reinforced (as many staff in care homes live with other care workers). care workers are a low-paid, marginalised workforce who typically have worse employment conditions than do nhs staff, in relation to hourly wage and paid sick leave, which makes self-isolation and household isolation challenging. the nhs lothian health region and public health scotland worked together to develop advice and behavioural interventions. in some care homes with ongoing outbreaks, minimal or no sick pay was a clear barrier to staff self-isolating. the nhs lothian health region supported rapid access to alternatives to employment-related sick pay via health and social care partnerships and the public health act (scotland) , although one barrier was ensuring that sick pay was promptly approved and paid. from the middle of may, , care homes with staffing difficulties in the face of an outbreak could request support from health and social care partnerships via access to the nhs lothian health region staff bank. bank staff are tested h before going into any care home. increases again. allowing families and friends to visit residents again is important for quality of life but needs to be balanced against the need to shield residents in areas where community incidence is high or increasing. early detection of outbreaks through regular testing, reliable ppe supply, support for robust infection control, and measures to ensure safe staffing are all likely to be needed to contain the size of established outbreaks. bg, ce, fg, nh, jes, lw, and jkb had the idea for the study. ket was responsible for pcr testing and quality assurance. gb, nh, ss, mt, dg, dmcc, and ro contributed to data collection and management. bg, nh, ss, mt, jkb, and bg did primary data analysis, with lw, fg, jes, ce, dg, dmcc, and ro contributing to interpretation. all authors contributed to drafting and revision and approved the submitted paper. we declare no competing interests. data are available on request from the corresponding author, subject to nhs scotland disclosure controls to prevent identification of individuals. covid- related mortality and spread of disease in long-term care: a living systematic review of emerging evidence changes in health and functioning of care home residents over two decades: what can we learn from population based studies? medrxiv who lives in scotland's care homes? descriptive analysis using routinely collected social care data - nursing home care in crisis in the wake of covid- identifying who lives in a care home: a challenge to be conquered covid- and lack of linked datasets for care homes epidemiology of covid- in a long-term care facility in king county, washington universal and serial laboratory testing for sars-cov- at a long-term care skilled nursing facility for veterans-los angeles covid- in older people: a rapid clinical review presymptomatic sars-cov- infections and transmission in a skilled nursing facility sars-cov- infection, clinical features and outcome of covid- in united kingdom nursing homes comparisons of all-cause mortality between european countries and regions deaths involving coronavirus (covid- ) in scotland mid-year population estimates mid- population estimates scotland risk assessment: information for care service providers (ops- - ). dundee, uk: the care inspectorate office for national statistics. deaths involving covid- , england and wales: deaths occurring in decision-support tools for foot and mouth disease control care quality commission. covid- insight deaths registered weekly in england and wales, provisional: week ending number of deaths in care homes notified to the care quality commission characteristics of us nursing homes with covid- cases association between nursing home crowding and covid- infection and mortality in ontario covid- infection and attributable mortality in uk long term care facilities: cohort study using active surveillance and electronic records assessment of infection prevention and control protocols, procedures, and implementation in response to the covid- pandemic in twenty-three long-term care facilities in fulton county nosocomial infections among patients with covid- , sars and mers: a rapid review and meta-analysis covid- in care homes: atypical presentations and high mortality rates mean outbreak management needs to include health and social care-early identification of atypical clinical signs, and complete segregation of cases, not cohorting, is essential we thank audrey pringle, jenni strachan, lindsey murphy, louise wellington, and peter harrison (nhs lothian health protection team) for data collection and comments on the paper; alison milne, dan clutterbuck, and members of the enhanced outreach testing team; and alison mccallum (director of public health, health data research uk) for support for policy and public dissemination. key: cord- -nkosr br authors: williams, katie; ruiz, fernanda; hernandez, felix; hancock, marian title: home visiting: a lifeline for families during the covid- pandemic date: - - journal: arch psychiatr nurs doi: . /j.apnu. . . sha: doc_id: cord_uid: nkosr br nan the district of columbia (district of columbia department of health, ). additionally, women who live in poverty, are immigrants, live with extreme stress, experience conflict situations, and have low social supports are at a higher risk of experiencing perinatal depression (who, ) . in recent months, us news reports have chronicled facts which illustrate that minority populations and underserved communities are significantly impacted by the coronavirus, the lack of resources and economic hardships. the coronavirus pandemic has brought forth chronic systemic issues of racism that have plagued the us for generations, with an overrepresentation of covid- related hospitalizations and deaths among black populations and minorities nationally (garcia-navarro, ; centers for disease control and prevention, ) . infection statistics in the district of columbia demonstrate stark differences in rates of covid- infection and related deaths. infection rates are heavily focused on communities with lower average income and higher rates of black and latinx populations and in parallel, death rates among black individuals represent % ( of deaths) of the total deaths, while they constitute only % of the district population (united states census, ; district of columbia, ). the economic downfall resulting from the pandemic and a never before seen demand to stay-at-home has unveiled higher rates of mental health concerns, life disruptions, as well as violence in the home. not only putting lives at risk, these effects are also detrimentally affecting our society's capacity to serve as positive role models and to foster healthy environments in which to grow our children. research links the effects of social isolation and loneliness to poor mental and physical health. parents, and especially low-income parents, are disproportionately worried about the infection, and disproportionately likely to feel "disrupted by the outbreak" panchal et al, ) . we have also seen the increase in domestic violence cases and considerable evidence points to the fact that domestic violence and child abuse often co-occur in nearly % of cases, experts believe the quarantine has high probability for increasing the rates of violence children are experiencing in the home (bosman, ; kamenetz, ; institute of medicine, ) . parenting is also impacted by social determinants of health. according to the most recent public dashboard published by child family services agency (cfsa) in the washington dc, % of the number of children served by cfsa are between and years of age, and the two groups with the highest incident of reports are african american and latinx families (child family services agency, ). the top family issues resulting in maltreatment reports for -to year age group include substance abuse, inadequate resources/unstable living situation, domestic violence and abandonment (child family services agency, ). the body of evidence is abundantly clear that social determinants of health and exposure to chronic stress has an impact on the body and overall health. however, risk is not destiny. research also tells us that protective factors and resiliency within individuals, families and communities, prevent and ameliorate the effects of social determinants of health. they allow us to respond to adversity in an adaptive and functional way. promoting protective factors and fostering resiliency is an effective strategy to address health disparities (palmer et al, ) . to this end, our federally qualified health care organization used this evidence base to develop and utilize the strategy of home visiting to foster resiliency among vulnerable individuals and families. home visiting is an essential preventative social service model that builds on the families' own strengths j o u r n a l p r e -p r o o f and supports them to navigate circumstances and stressors contributing to health inequities in underserved communities. home visitors provide services that improve health care access and education to participants; they collaborate with families to assist in navigating health and social systems and give dedicated attention that may be more problematic to obtain in the traditional health system (centers for disease control and prevention, ) . nurses and clinically trained technicians are also direct-care providers in some home visiting models, including nurse family partnership, supporting individuals with health education, counseling, and medical services outside of the clinic system. while there is no nationally recognized definition for home visiting, the district of columbia home visiting council has developed a definition to better represent the services and position home visiting specific to the spectrum of social and health services in our geographic region. this definition will be published in their upcoming annual report with an excerpt below. home visiting is a service delivery strategy that serves as a prevention and early intervention support for expecting parents and families of young children from before birth until entry into kindergarten. in these voluntary programs, trained home visitors and participant family members regularly meet in the home or another comfortable setting designated by the family. a key characteristic of these programs is that each implements a model for addressing specific maternal, family, and child outcomes through education, counseling, coaching, and other services. home visitors also provide families with connections to community-based services and resources relevant to their goals (dc home visiting council, ). moreover, home visiting programs are designed to support families who are overburdened. individuals and families currently managing the health and social consequences of the covid- pandemic are impacted greatly by the detriments of the health inequities that affect them. the specific tools, practices, and theories that guide home visiting programs are established to address extreme social challenges and therefore home visiting programs are well-positioned to support families in these extraordinarily difficult times. today, home visitors are the lifelines to many families. home visiting program models vary based on factors such as target audience, outcomes measured, duration and frequency of home visits, and evidence available on the practice. our organization, mary's center, currently offers four home visiting models supporting our organization's mission which is to embrace all communities and provide high-quality healthcare, education, and social services in order to build better futures. mary's center home visiting department's mission is to engage families through different phases of perinatal and early childhood years, involving all members of the family through programming and resources. healthy families america (hfa) and parents as teachers (pat) are evidence-based national models (home visiting evidence of effectiveness, ; ). hfa provides intensive home visitation services to overburdened families at risk for child abuse and neglect and supports them to ultimately prevent abuse and neglect (healthy families america, ) . pat is based on a theory that influencing parenting knowledge, attitudes, behaviors and family well-being affects the child's developmental trajectory, with an intentional focus on school readiness (parents as teachers, ). the father child attachment program is specifically designed to work with fathers in order to promote positive father involvement and j o u r n a l p r e -p r o o f work towards strengthening the father-child relationship. lastly, healthy start is a national initiative designed to improve maternal and infant health outcomes and reduce racial and ethnic differences in adverse perinatal outcomes and infant deaths. while eligibility criteria differ between programs, all four serve to engage families who live throughout the metropolitan washington dc area, including prince george's county in lower maryland. while each program is built and implemented differently, national research on home visiting strategies show that programs are instrumental in supporting families in their ability to process and navigate social and health challenges. us health and human services departments have supported the home visiting evidence of effectiveness programs (homvee) since , a team conducting thorough and transparent reviews of home visiting research literature and outcomes. positive health outcomes unveiled through homvee and locally-hosted evaluations include the frequency of child visits for preventative care, improved school readiness, improved family economic self-sufficiency, and positive parental attitudes about their ability and competency as parents (dc home visiting council, ; opre, ). health and livelihood outcomes demonstrate that families who participate in home visiting programs are more likely to have healthy babies and healthy moms, confident parents with positive parenting practices and safe homes (munns, ; national home visiting resource center, ) . in addition, cost savings from home visiting programs are manifested in lower rates of emergency room visits for children, reduced involvement in government systems such as child protective services, as well as benefits to society encompassed in maternal and child health outcomes. studies have found a return on investment of $ . success within the parameters of home visiting has been quantified, revealing effectiveness on meeting health and social needs for families, women, and children. however, home visiting as a strategy looks differently for every family. to quantify what success looks like when each strategy is tailored to the needs of the family can miss the mark on how home visiting inevitably shows up and impacts a community as a whole. home visiting's real success may be more difficult to measure in areas such as employment, or learning and practicing a different, less punitive strategy to parenting. strategies applied in home visiting programs support participants and their families in developing tools and accessing resources to garner growth, confidence and self-sufficiency. resources are not only those tangible and observable ones, such as a stress-management course for young parents or transportation to a health appointment, but also intangible, personal tools to support participants in becoming their best selves. some of these practices and resources with impact on health equities are described below. standardized screenings are an integral part of home visiting that facilitate the early and regular identification of risk factors negatively affecting the health and livelihood of our participants. screenings serve to monitor health and social risk factors for all participants, invite opportunities for discussion and allow for exploration of sensitive and difficult experiences, and identify risk situations warranting referral for further follow up. while screenings are often dictated by funders, those applied in mary's center programs include evidence-based tools to monitor depression and perinatal mood disorders, intimate partner violence, adverse childhood experiences, substance abuse, and child development milestones. family goal planning is a tool used to facilitate participant and home visitor working together to develop goals and break those goals into meaningful and manageable steps/objectives. when facing chronic social hardship, trauma, and challenge, it is difficult for one to think beyond survival, losing the ability to consider the future and possibly damaging one's feelings of self-worth and perceived or actual threats to family functioning. the process of breaking larger goals into small steps assists parents in developing problem-solving skills, increases the individual's sense of power over their situation, and supports adult brain development. the skills parents build in the process of outlining and achieving self-identified successes changes the way parents view the world, increases their self-efficacy, enhances internal motivation and builds protective factors. a strength-based approach is another practice integrated into mary's center home visiting programs which draws attention to a participant's strengths and abilities rather than the problems, deficits, and pathologies they may be facing (saleebey, ) . in strength-based practice, the participant is supported to identify and build upon these positive traits and work towards positive change. with individuals who have been raised in communities of hardship and limited social and emotional support, this change in perspective and attention to personal strengths elicits a shift towards a more positive mind-set, optimism and confidence, ultimately contributing to healthier and more positive behaviors. trauma-informed care is applied in home visiting to support participants in understanding the effects of trauma on their minds and bodies, as well as identify triggers, physical manifestations of stress, and methods of self-regulation and self-care. utilizing a trauma-informed lens in home visiting allows for the creation of a safer and more trusting environment where participants can explore emotions and past experiences without judgement or expectations. home visitors form connections, support participants in recognizing and naming emotions, help people improve their self-agency, and create consistent and clear boundaries (gates, ) . application of this approach with adults has been shown to help them to build positive attachments with children, create a safe environment and nurture relationships with their children (cairone, rudick & mcauley e., ). an essential part of home visiting is flexibility. prior to the pandemic, staff would hold visits where families were physically located; whether it be in the home or a doctors' office waiting room. using the facilitating attuned interactions approach, this presence is not only felt physically but also expressed emotionally (erikson institute, ) . home visitors tailor their support according to the needs of the participants and are consistently present adjusting to what may be most beneficial at the time. for example, a parent may be seeking a listening ear to express frustration with accessing health services, while a moment later, he/she may be seeking assistance in planning for her child's upcoming medical appointment. the tools and models outlined contribute to the development of trusting relationships while positively contributing to participants' sense of self and confidence. all the while, these approaches model practices that parents themselves can put in place with their children and contribute to more positive productive parent-child relationships. america provided guidelines and adaptations in response to covid- to continue to support local programs (national alliance of home visiting models, ). as an agency, mary's center quickly developed guidelines and protocols in response to the pandemic following the guidelines provided by the centers for disease control (cdc), home visiting national models, and allied professionals such as medicine and behavioral health who had research to support this service modality (hutkins seda, ). for example, in a systemic review of tele-behavioral health services using cognitive behavioral therapy (cbt), it was found that tele-behavioral health services are equal to in-person therapy and may have more long-term impact beyond the end of treatment (dettore, pozza & andersson, ; vogel et al., ) . in addition, mary's center has provided tele-medicine and tele-behavioral health services for several years showing success since our use of tele-health in . a managed care organization partner, amerihealth, has publicly commented that mary's center's telemedicine has been "extremely beneficial" with performance outweighing other similar providers, and exceeding national quality assurance benchmarks for medical services such as diabetes care (evans & koppelman, ) . it is with these successes that many protocols were easily adapted to home visiting programming. when visits became virtual, hfa released prompts to support home visitors with achieving the hfa best practice standards to "assess, address, and promote positive parent-child interaction, attachment, and bonding and the development of nurturing parent-child relationships" (healthy families america., ). these new guidelines allow for home visitors to either use observations through video visits, or openended questions to elicit parents description of their interaction with their children on phone calls (healthy families america, ). similarly, to adjust to tele-home visits, parents as teachers introduced "verbal videos," a technique that guides parents to narrate telephone visits, which allows parents to observe their children's cues while stimulating language development. with the parent-child interaction observations or narrations, home visitors continue to follow programmatic guidelines as part of in-person visits, and address specific strengths while introducing relevant curriculum to address parents' concerns. it is in this same space where home visiting has adapted its strategy to provide the support matching participants' most immediate needs. basic material needs including groceries, diapers and formula, safe transportation, and safe secure housing all came to the forefront as most sought-after resources during the initial months of the pandemic. within this context, many resources and opportunities became available in the metro area, yet logistics were consistently changing, eligibility criteria was often restricted or varied, and communication about what was available was challenged by the stay-at-home order itself. while families are required to stay at home, the home visitor is a central resource providing access to important services relevant and appropriate for families. home visitors also have already-established relationships with other community-based programs, consistently receiving up-to-date information and a direct contact to optimize family's time and chance of success. beyond the creative contact methods and structural strategies of home visiting, home visitors recognized that simply living under covid- is a new norm for participants. mary's center home visiting is aware that covid- has magnified issues already present in the environment and our program makes space to intentionally incorporate self-care strategies for our participants, especially parents. an example of this is the father-child attachment program that has opened forums for fathers to discuss masculinity and mental health amid the social upheaval of the pandemic and evolving awareness around police brutality. home visitors and participants have co-created space that allows for the discussion of the j o u r n a l p r e -p r o o f emotional and mental toll these stressors present. while the most notable consequences of the pandemic have been those hindering health and access to services, there are positive effects of the paradigm shift caused by the pandemic. access to some health services available through a tele-format has increased during the past few months. at mary's center we have seen an increase in number of patients seeking mental health services offered virtually. anecdotally, reasons for this increase may be attributed to participants having more time available to attend clinical appointments remotely while increased need for these services may also be a factor. in complement to individual therapy, group care is increasing across the country; postpartum support international reports the number of women participating in online support groups has increased % from february to april (maternal mental health leadership alliance, ). this expansion is not exclusive to mental health services and the potential of tele-health services expanding access to other areas of care is changing entire landscapes of health systems. at mary's center, tele-health services are already an integral component of our service delivery strategy, and are growing in areas of medical, dentistry, behavioral health, social services, and home visiting, improving access for those who previously did not attend inperson appointments. national home visiting models have made these easy, establishing guidelines for tele-visits years ago, and now expanded support and investment for their implementation is warranted within this system as well as nationally (healthy families america, ; nurse family partnership, ). families have been negatively impacted by the pandemic yet the effect is deeper among families who are suffering from social and health inequities. the pandemic has unveiled countless examples of the wideranging disparities -unemployment, food scarcities, anxieties, depression, loneliness and family stressors. as these social determinants and upstream aspects of well-being and health are supported with safety net services such as home visiting, these programs need to be financed, utilized and expanded now more than ever. there is a call for investment in innovative home visiting models to address the new and developing needs of families in this time of crises. nfp is an evidence-based model where nurses deliver in-home clinical and social services directly to women and families during vulnerable periods of life such as pregnancy and postpartum. programs where fathers and male partners are engaged limited even as the literature focuses attention to the role of the father in a child's development and the importance of the family unit. mary's center is at the forefront of moving these new models forward, through participation in local advocacy and leadership in home visiting coalitions. increased investment and support for this work would extend the reach and the impact of home visiting services to those who most need it. while existing evidence demonstrates positive outcomes, additional research on innovative home visiting models would support funding and expansion of such services. research on the fidelity of programs to a national model is informative. of even greater value would be further understanding of program outcomes in different contexts and amid new social and economic challenges. particularly now, as models across the country are adjusting to virtual engagement, understanding of home visiting best-practices and effectiveness of this strategy is warranted. until larger systemic changes occur in social and economic policy to address racial and ethnic disparities, families will continue to experience hardships resulting from inequity in social determinants of health. domestic violence calls mount as restrictions linger: 'no one can leave'. the new york times home visiting issues and insights creating a trauma-informed home visiting program. health resources and services administration infant mortality covid- in racial and ethnic minority groups collaborating with community health workers to enhance the coordination of care and advance health equity fy needs assessment efficacy of technology-delivered cognitive behavioral therapy for ocd versus control conditions, and in comparison with therapist-administered cbt: meta-analysis of randomized controlled trials perinatal health and infant mortality report national nurse-led care consortium, public health management corporation trauma informed care and communication with children trauma informed care training at mary's center randomized controlled trial of family connects: effects on child emergency medical care from birth to months kff coronavirus poll hfa best practice standards guidance for healthy families america sites in response to covid- healthy families america (hfa). u.s. department of health & human services parents as teachers (pat). u.s. department of health & human services health centers on the frontlines: mary's center on virtual enabling services, internal communication, and finances during covid- the co-occurrence of child maltreatment and intimate partner violence child sexual abuse reports are on the rise amid lockdown orders. national public radio policy recommendations maternal mental health during the covid- pandemic congressional briefing effectiveness and experiences of families and support j o u r n a l p r e -p r o o f journal pre-proof workers participating in peer-led parenting support programs delivered as home visiting programs model guidance in response to covid- black women's maternal health: a multifaceted approach to addressing persistent and dire health disparities how the coronavirus crisis is impacting the latino community. national public radio nurse-family partnership: outcomes, costs and return on nurse family partnership and telehealth home visiting evidence of effectiveness review: executive summary social determinants of health: future directions for health disparities research the implications of covid- for mental health and substance abuse. kaiser family foundation the strengths perspective in social work practice quick facts district of columbia videoconference-and cell phone-based cognitive-behavioral therapy of obsessive-compulsive disorder: a case series social determinants approaches to public health: from concept to practice key: cord- -evzl v authors: hollinghurst, j.; lyons, j.; fry, r.; akbari, a.; gravenor, m.; watkins, a.; verity, f.; lyons, r. a. title: the impact of covid- on adjusted mortality risk in care homes for older adults in wales, united kingdom: a retrospective population-based cohort study for mortality in - date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: evzl v background: mortality in care homes has had a prominent focus during the covid- outbreak. multiple and interconnected challenges face the care home sector in the prevention and management of outbreaks of covid- , including adequate supply of personal protective equipment, staff shortages, and insufficient or lack of timely covid- testing. care homes are particularly vulnerable to infectious diseases. aim: to analyse the mortality of older care home residents in wales during covid- lockdown and compare this across the population of wales and the previous -years. study design and setting: we used anonymised electronic health records (ehrs) and administrative data from the secure anonymised information linkage (sail) databank to create a cross-sectional cohort study. we anonymously linked data for welsh residents to mortality data up to the th june . methods: we calculated survival curves and adjusted cox proportional hazards models to estimate hazard ratios (hrs) for the risk of mortality. we adjusted hazard ratios for age, gender, social economic status and prior health conditions. results: survival curves show an increased proportion of deaths between rd march and th june in care homes for older people, with an adjusted hr of . ( . , . ) compared to . compared to the general population in - , adjusted care home mortality hrs for older adults rose from . ( . , . ) in - to . ( . , . ) in . conclusions: the survival curves and increased hrs show a significantly increased risk of death in the study periods. all authors critically reviewed the manuscript and contributed to the writing. joe hollinghurst performed the statistical analysis and created linked datasets for the research. jane lyons created population level datasets for the analyses. richard fry helped to create the care home index and residential level linkage. ashley akbari facilitated data transfer to receive updated data streams. mike gravenor and alan watkins provided advice on the statistical analysis. fiona verity provided social care expertise and developed the context of the results in relation to national social care policy. ronan lyons developed the research questions for the study and provided clinical expertise. mortality in care homes has had a prominent worldwide focus during the covid- outbreak [ ] , [ ] but few detailed analyses have been conducted. care homes are a keystone of adult social care. they provide accommodation and care for those needing substantial help with personal care, but more than that, they are people's homes [ ] , [ ] . in , there were , care homes in the uk, with a total of , residents [ ] . within care homes people live in proximity, and may live with frailty and many different health conditions, making them susceptible to outbreaks of infectious disease [ ] . covid- is described by lithande et al, as '…a dynamic, specific and real threat to the health and well-being of older people' ( ,p. ) [ ] . the impacts of covid- on this population group have been reported widely in both international and uk media, and in a growing peer reviewed literature. multiple and interconnected challenges face the care home sector in the prevention and management of outbreaks of covid- [ ] . in the literature, these challenges are reported to include poor access and supplies of personal protective equipment (ppe) for care home staff [ ] , [ ] , [ ], [ ] , staff shortages [ ] , [ ] , insufficient or lack of timely covid- testing [ ], [ ] and related clinical challenges as some older adults with covid- may be asymptomatic, or not display expected symptoms [ ] , [ ] , [ ] , [ ] . once there is an outbreak the disease can spread quickly within a care home setting, and be difficult to contain [ ]- [ ] . a further challenge is in managing the impact of practices to shield care home residents and isolate those who are infected. these practices can result in social isolation from families, friends and communities, with negative impacts on health and wellbeing [ ] , [ ] . set against these challenges is the caring, innovative, and resilient response of care home staff and residents in managing the situations they face [ ] . this confluence of events in the context of the pandemic, and impacts for residents, their families and care home staff, has been framed as a human rights issue [ ] . in the uk there is also contestation regarding the implications of underinvestment in the care home sector, and the interface with the health sector, for example, of the rapid hospital discharge policies in the early period of the lockdown [ ] , [ ] , [ ] . covid- is a rapidly evolving complex issue requiring near real time data, analyses and a multidisciplinary team to devise, implement and evaluate a wide variety of inter-and cross-sectoral interventions to minimise population harm. the use of existing anonymised routinely collected longitudinal data can help to provide rapid access to large-scale data for studies and provide robust evidence for commissioning decisions and policy [ ] . in this study, we utilise the secure anonymised information linkage (sail) databank [ ] - [ ] to investigate mortality in care homes in wales in the initial phase of the uk lockdown, and compare this with corresponding data from the four most recent years to estimate excess mortality. we aimed to compare the mortality risk for older care home residents ( +) in wales for each year between and . to do this we performed two sets of analyses: we used anonymised electronic health records (ehrs) and administrative data from the secure anonymised information linkage (sail) databank to create a cross-sectional cohort study. our cohorts were created using data held within the sail databank [ ] - [ ] . the sail databank contains longitudinal anonymised administrative and healthcare records for the population of wales. the anonymisation is performed by a trusted third party, the national health service (nhs) wales informatics service (nwis). the sail databank has a unique individual anonymised person identifier known as an anonymous linking field (alf) and unique address anonymised identifier known as a residential anonymous linking field (ralf) [ ] that are used to link between data sources at individual and residential levels, respectively. individual linking fields, nested within residential codes, are contained in the anonymised version of the welsh demographic service dataset (wdsd), replacing the identifiable names and addresses of people registered with a free-to-use general practitioner service. our cohort of older care home residents was determined by linking to an existing index for anonymised care home addresses from a previous project [ ] and utilising the wdsd for address changes. we determined if someone was a care home resident by linking their deidentified address information to the residences indexed as a care home in the wdsd. the anonymised care home index was created using the care inspectorate wales (ciw) [ ] data source from and assigning a unique property reference number (uprn) to each address [ ] . we included care homes with a classification of either care homes for older adults, or care homes for older adults with nursing in our list. the uprn was doubleencrypted into a project level ralf and uploaded into sail to create a deterministic match to the wdsd. from an analysis perspective, both residents and care homes are deidentified prior to any analysis. to answer our research questions we created separate data sets, both with different settings and participants. the hospital frailty risk score (hfrs) was developed using hospital episode statistics (hes), a database containing details of all admissions, emergency department attendances and outpatient appointments at nhs hospitals in england, and validated on over one million older people using hospitals in / [ ] . the hfrs uses the international classification of disease version [ ] (icd- ) codes to search for specific conditions from secondary care. a weight is then applied to the conditions and a cumulative sum is used to determine a frailty status of: low, intermediate or high. we additionally included a hfrs score of 'no score' for people who had not been admitted to hospital in the look back period. we calculated the hfrs using the patient episode database for wales (pedw), the welsh counterpart to hes, on the entry date for each of our studies, with a two year look back of all hospital admissions recorded in wales. we for our first analysis, the kaplan-meier survival function was estimated from rd march to th june for each year of care home residency ( - ). cox regression was used to determine hazard ratios (hrs) for mortality with % confidence intervals. adjusted hazard ratios included: the cohort year, care home residency, age, gender, hfrs and wimd ( version). we included a cluster level effect for each residence. computation restrictions meant we were unable to include a cluster level effect for the second analysis. we analysed over , individuals per year in more than care homes for older adults. we present the descriptive data for the cohorts in table , kaplan-meier survival curve in figure and cox proportional hazards models in table . to check the influence of individuals being present in more than one cohort we have included the number of individuals who are common across each study year in table s . we independently calculated adjusted hrs for the cohort against each of the study years, the results are presented in table s . we also present the hrs without a cluster level effect in table s . our extended analysis included over million individuals in the - and periods of study. the demographic information of each of the cohorts is presented in table and the corresponding regression model results are displayed in table . additional models with the individual covariates are presented in table s . our results show a substantial excess mortality and substantial reduction in survival in care home residents during the first phase of the lockdown period, when compared to previous years and after adjustment for age, sex, deprivation and hospital frailty risk score. the baseline demographics shown in table show a consistent trend across each study year with the exception of mortality in . this is consistent with the diverging kaplan-meier curves displayed in figure and the increased hazard ratios for the cohort year presented in [ ] . we found that the wimd was statistically insignificant and did not alter the remaining hrs for mortality when included in the first analysis, but was a significant factor in the population level analyses. the cluster effect term indicated there was variation between care homes, this is likely because of differences in the case mix of care home residents and the varying exposure to covid cases. the km curves may indicate a flattening of the divergence in mortality in more recent weeks. we plan to repeat these analyses as more data become available. inclusion of data on the timing of interventions and policy changes, both across the health care system and in care homes would help understand the effectiveness of different approaches on reducing transmission of infection and clinical outcomes. table details the differences in demographic information between care home residents and the general population. specifically, the care home residents are more likely to be women and have increased mortality, frailty and age. the analysis in table although we used a consistent list of anonymised care home addresses there is a varying number of care homes included in each year of study. this is due to the list of care homes being created from the extract from ciw, and care homes being opened and closed. we aimed to mitigate bias in our comparisons by using a consistent list across study years. our cohorts were created at cross sectional time points, this means that individuals may appear in more than one cohort. although we calculated the covariates at the individual level at the start of each cohort interval, there may still remain correlation between the cohorts. we performed a retrospective population-based cohort study, comparing the mortality risk in care homes between - . it was found that the mortality risk in care homes has increased significantly in compared to previous years. the conclusion of increased mortality risk in remained the same when we included additional demographic variables, the hfrs, and increased the observation window. mortality associated with covid- outbreaks in care homes : early international evidence commentary: covid in care homes-challenges and dilemmas in healthcare delivery dependency in older people recently admitted to care homes care homes market study. final report. competitions and markets authority covid- in older people: a rapid clinical review american geriatrics society policy brief: covid - and nursing homes covid- : the support uk care homes need to survive care homes have seen the biggest increase in deaths since the start of the outbreak. covid- chart series my home life england, covid- : voices from the care home frontline: th advocacy for the human rights of older people in the covid pandemic and beyond: a call to mental health professionals david oliver: let's not forget care homes when covid- is over coronavirus spotlight: recent nhs discharges into care homes using electronic health records for population health research: a review of methods and applications the sail databank: linking multiple health and social care datasets the sail databank: building a national architecture for e-health research and evaluation a case study of the secure anonymous information linkage (sail) gateway: a privacy-protecting remote access system for health-related research and evaluation residential anonymous linking fields (ralfs): a novel information infrastructure to study the interaction between the environment and individuals' health study protocol for investigating the impact of community home modification services on hospital utilisation for fall injuries: a controlled longitudinal study using data linkage care and social services inspectorate wales (cssiw) unique property reference number (uprn) development and validation of a hospital frailty risk score focusing on older people in acute care settings using electronic hospital records: an observational study icd- : international statistical classification of diseases and related health problems: tenth revision external validation of the electronic frailty index using the population of wales within the secure anonymised information linkage databank development and validation of an electronic frailty index using routine primary care electronic health record data frailty in elderly people this work uses data provided by patients and collected by the nhs as part of their care and support. we would also like to acknowledge all data providers who make anonymised data available for research.we wish to acknowledge the collaborative partnership that enabled acquisition and access to the de-identified data, which led to this output. none to declare. the data used in this study are available in the sail databank at swansea university, swansea, uk. all proposals to use sail data are subject to review by an independent information governance review panel (igrp). before any data can be accessed, approval must be given by the igrp. the igrp gives careful consideration to each project to ensure proper and appropriate use of sail data. when access has been approved, it is gained through a privacy-protecting safe haven and remote access system referred to as the sail gateway. sail has established an application process to be followed by anyone who would like to access data via sail https://www.saildatabank.com/application-process.this study has been approved by the igrp as project . key: cord- - xzuilc authors: michel, pierre-antoine; piccoli, giorgina barbara; couchoud, cécile; fessi, hafedh title: home hemodialysis during the covid- epidemic: comment on the french experience from the viewpoint of a french home hemodialysis care network date: - - journal: j nephrol doi: . /s - - -z sha: doc_id: cord_uid: xzuilc nan a recent paper in kidney international on the french experience with covid- in dialysis patients states that between march and may , , of the infected patients listed in the rein registry, patients died, a confirmation of the high death toll among dialysis patients during the covid- epidemic [ ] . in this nationwide report, the prevalence of patients with covid- varied between regions from less than % to over %. the incidence of the disease was higher in males, and in patients with diabetes and other comorbidities, while being on dialysis at home was associated with a lower rate of infection. in fact, during the sars-cov- pandemic, numerous studies showed that end-stage kidney disease (eskd) is a major risk factor for developing severe covid- [ , ] . acknowledging this grim prognosis has been a stimulus for reconsidering dialysis policy from a different point of view [ , , ] . home dialysis has been advocated as a safer option in times of epidemic and, among others, the french health care authorities strongly supported the development of home-based techniques in their documents which appeared in response to the covid- epidemic [ , ] . potential drawbacks were also underlined, as were patients' need to have frequent contacts with a dialysis center and to avoid being isolated. home hemodialysis is still a cinderella in europe: while daily hemodialysis is considered to be one of the best renal replacement treatments, combining higher survival and a good quality of life, its penetration is limited. in france this technique has undergone a relatively rapid diffusion in the last years. according to the data from the french biomedicine agency, during the peak period of the epidemic, between march and june , , only of the patients on home hemodialysis in france were diagnosed with covid- ; the incidence is similar to that observed in patients treated with peritoneal dialysis ( . %). even considering the different distribution of home dialysis in france ( fig. ) , the recorded incidence is significantly lower than that observed in patients on in-center hemodialysis ( covid out of , patients, . %; p = . ) [ ] . interestingly, the virus diffusion was the highest in the regions with the highest prevalence of home hemodialysis, and the favorable effect was more evident in settings with high virus circulation. for instance, in the ile de france region, one of the most affected by the pandemic, data from the biomedicine agency indicate that out of , patients ( . %) on in-center hemodialysis were diagnosed with covid- , whereas only out of patients on home hemodialysis developed the disease ( . %) (p = . ). presumably because of the lower age (mean years ± years) and comorbidity burden, none of the patients on home hemodialysis died. furthermore, while home dialysis encompasses % of all french dialysis patients, data from the french biomedicine agency show that the proportion of home dialysis patients (whether on hemodialysis or on peritoneal dialysis) represented . % of the total number of dialysis patients diagnosed with covid- during the period march-october [ out of patients]; this proportion would appear to remain stable during the second epidemic wave. the organization of a home hemodialysis network is not simple. in our network of care (based upon cooperation between the tenon hospital and the aura association) we are presently following home hemodialysis patients, in a setting (paris) that had a high virus circulation. in our dialysis network, in normal conditions, outside of the epidemic, half of the patients who are trained for home hemodialysis are referred by our center and the other half by other centers. they are first evaluated by a nephrologist and a nursing team during a consultation in which our training policy is explained, and the advantages as well as the constraints of home treatment are set forth. the training period usually lasts eight weeks, during which the patients learn the management of dialysis and get accustomed to self-needling using the button-hole method. training includes how to set up the generator, the management of alarms and how to adapt their dry weight. nurses evaluate the patient's home and discuss how to solve possible issues (such as storage or waste management). the first dialysis session which is performed at home is organized in the presence of a nurse and a nephrologist. the disposables are sent once or twice a month to the patient's home by a non-profit association with experience in managing home hemodialysis in france (aura for the ile de france region), and waste retrieval is carried out weekly by a private company. each month one dialysis session is organized in the training center, thus providing an opportunity for blood tests to be done, as well as for clinical evaluation and discussion of any problems that may have occurred during the period. our training unit is located on the same floor as the hemodialysis unit, but is separated from the main unit, with dedicated waiting rooms. the nursing team is entirely dedicated to supervising home hemodialysis. during the covid- epidemic, the dialysis network needed to be adapted, balancing the need for closely monitoring the fragile patients' clinical condition, with the need to minimize their exposure to the hospital [ ] . providing home assistance by a trained nurse, as is routinely done in peritoneal dialysis, was not proposed, as in france this option is not allowed for home hemodialysis. training for home hemodialysis was performed on an intensified daily basis, balancing the risks of frequent hospital visits with the advantage of receiving treatment in a safer setting. the risks of social isolation were kept in mind, and a policy of distant monitoring was established on a case-by-case basis. we were able to train eight patients during the first phase of the epidemic and to secure them on home hemodialysis. the delivery of consumables for hemodialysis was carried out respecting the barrier measures. access to interventional radiology for the management of vascular access complications remained operational in our region during the period of the study. the creation of a new vascular access was however limited to emergencies. we also chose to maintain the regular dialysis sessions and controls in the training unit, but we increased the intervals between visits from the usual monthly frequency to once every - weeks, adapting the control schedule to each patient's circumstances. conversely, patients who had technical problems or experienced vascular access difficulties were immediately referred to the training center to try to promptly solve the problems. we considered that in such cases direct interaction played an important role in reassuring patients, and this advantage was balanced against their exposure to a hospital setting, with an increased risk of contamination. the longer intervals between visits were compensated by regular phone contacts, in order to strengthen monitoring, to reassure our patients and to remind them of the importance of respecting the barrier measures and employing personal protective equipment whenever they were outside their homes. of our patients, presented symptoms consistent with a viral infection. they all underwent a sars-cov- pcr. two tested positive, negative. furthermore, globally of our patients later agreed to have a sars-cov- serology test performed, which was positive in the patients therefore, within the limits of a small series, and while waiting for additional data, we would like to confirm that our experience underlines the importance of developing an efficient home hemodialysis network, able to patients in a time of epidemic. the catastrophic covid- pandemic will presumably not be the last one in our globalized world. home hemodialysis allows effective containment, and this effect is particularly high in endemic areas, potentially reducing mortality in dialysis patients. this consideration should further support the development of home hemodialysis, overcoming the many barriers to its development. performing home hemodialysis, however, involves more than merely moving the dialysis machine from hospital to home. developing a home hemodialysis network is a complex and demanding task, and in many european countries reimbursement fails to fully cover the costs, in particular if patients are closely monitored. in france, for example, the average cost of a home dialysis session was estimated at € . , while the flat reimbursement rate for home hemodialysis is only € . . the lack of profit in home dialysis is a disincentive to its growth, despite its benefits for quality of life and, possibly, survival [ ] . in addition to this problem, there are significant disparities in access to home dialysis among regions, mainly reflecting the involvement of each region's nephrology team. a lack of training of nephrologists and lack of information for patients are further important barriers to the development of home hemodialysis. the present report, therefore, is a call for dedicated investment in home hemodialysis, and for an unbiased appraisal of its complexity, to implement the old, but always valuable concept of "home dialysis first" for patients who cannot receive a preemptive kidney transplantation [ ] . ) in the name of the french rein registry low incidence of sars-cov- , risk factors of mortality and the course of illness in the french national cohort of dialysis patients exposure to novel coronavirus in patients on renal replacement therapy during the exponential phase of covid- pandemic: survey of the italian society of nephrology minimizing the risk of covid- among patients on dialysis time to expand access and utilization of home dialysis: lessons from the covid- pandemic situation de l'épidémie de covid- chez les patients dialysés et greffés rénaux en france situation of the covid- epidemic in patients on peritoneal dialysis on / / in france: rdplf data-base home haemodialysis: how it began, where it went wrong, and what it may yet be home dialysis as a first option: a new paradigm we would like to thank all the dialysis centers participating in the rdplf and the rein registries which, despite this difficult period, with a significant work overload, actively collected data and were available for additional information. conflict of interest all authors declare that they have no conflicts of interest.ethics approval this article does not contain any studies with human participants performed by any authors. key: cord- -clzt kyg authors: clavijo, raul; ramasamy, ranjith; halpern, joshua; melnick, alexis; stewart, joshua; rosenwaks, zev; brannigan, robert title: “online” and “at-home” versus traditional models of health care: enhancing access or impeding optimal therapeutics? date: - - journal: fertil steril doi: . /j.fertnstert. . . sha: doc_id: cord_uid: clzt kyg nan pro: ''online'' and ''at home'' health care enhances access to optimal therapeutics pro . raul clavijo, m.d. before the advent of telehealth, prescription medication was available to patients only through a physical encounter in a hospital or clinic with a physician. currently, in the united states, policies exist allowing the prescription of a wide range of medications after a telehealth visit ( ) . our first instinct is to be skeptical of virtual efforts to treat reproductive and sexual health conditions because of our ingrained notion that a physical examination is essential in formally evaluating all medical conditions, and therefore assessing risk-benefit profiles for medications. however, this skepticism is best imparted individually in our field, based on the diagnosis and potential therapeutic options, separating sexual health from infertility diagnoses. first, it is important to understand that con: ''online'' and ''at home'' health care impedes access to optimal therapeutics con . alexis melnick, m.d. in recent years, we have seen an upswing in the number of direct-to-consumer telehealth companies offering prescription medications. this trend has now reached the reproductive and sexual health spheres, with companies such as roman and hims garnering the most attention for treating men with ed. more recently, we have seen the emergence of athome in vitro fertilization kits, which provide patients with a protocol of oral ovulation induction drugs and a nasal gnrh antagonist after an initial telehealth visit. the patient is first seen in person at the time of their retrieval, after monitoring for ovulation at home with urine luteinizing hormone test strips. although these approaches seemingly allow for increased convenience and privacy, they pose sig-stigma is more likely stigma associated with a patient seeking advice for sexual concerns compared with infertility ( ) . one study showed that < % of patients with sexual dysfunction sought care with a physician in comparison with another study revealing that % of couples with infertility sought professional care ( , ) . thus, owing to the lack of physical exposure to clinical settings, it is likely that our patients with sexual dysfunction, with or without infertility, who stand to benefit the most from our taking a potential risk of prescribing medications after virtual care. this being taken into account, medications approved by the u.s. food and drug administration for sexual dysfunction are more likely to be considered in a virtual care setting than is the off-label use of medications ( ) . diagnosing and treating erectile dysfunction (ed) with phosphodiesterase type inhibitors such as sildenafil is a prime example of how sexual health prescription medications can be prescribed online safely. the safety profile in a patient can be mostly derived from history taking and careful chart review, focusing on medications such as nitrates that can lead to potentially fatal conditions. it is rare that a physical examination finding alone would deter a physician from prescribing phosphodiesterase type inhibitors. however, if there is a need to move on to second-line options such as penile injections or vacuum erection devices, a physical examination is useful to assess for conditions such as buried penis that would limit the efficacy of those options. at least, by this point, patients have a baseline physician relationship established, likely facilitating their choice to present at a physical clinic. similar to the reliance on history to diagnose ed, certain sexual dysfunction diagnoses such as hypoactive sexual desire disorder in premenopausal women do not strictly require a physical examination ( ) . however, prescribing medications such as flibanserin, despite being approved by the food and drug administration, becomes problematic in the minds of many, mostly owing to a lack of overwhelming safety data and side effect profiles, such as that available for phosphodiesterase type inhibitors. in fact, this difference is obvious in a comparison of the menu of treatment options available through widely advertised digital health companies. men are offered treatment for conditions such as ed and premature ejaculation, whereas the menu for women has no mention of conditions such as hypoactive sexual desire disorder or dyspareunia. the makers of flibanserin, nevertheless, do offer telemedicine options advertising the ability to avoid physical clinical encounters. along these lines, reproductive medications such as clomiphene citrate are relatively more appropriate for online procurement in men. for example, in men with oligospermia and low testosterone, both of which can technically be determined with at-home testing, it is conceivable that clomiphene can be prescribed empirically without a formal physical examination because contraindications such as thrombotic coagulopathies can be derived from a history. the risk in this situation would be missing a testicular tumor because no physical examination is available. for women, empiric treatment with clomiphene after an isolated virtual encounter becomes problematic because most practitioners nificant risks to patient health while likely providing suboptimal care. the greatest limitation of these modalities is the inability to conduct a complete physical examination at the time of the telehealth encounter. this is particularly concerning for ed patients. ed has been shown across several studies to be a proxy of overall health and a sentinel marker for cardiovascular disease, diabetes mellitus, and metabolic syndrome, particularly in men under years old-the demographic most likely to use direct-to-consumer services ( ) . for this reason, the american urological association guidelines recommend a complete physical examination and selective laboratory testing in all men presenting with ed, which cannot be achieved with even the most comprehensive screening questionnaire and telehealth visit ( ) . consequently, for many men using direct-to-consumer platforms, life-threatening comorbidities will not be identified. the lack of an in-person encounter also restricts the ability to screen for contraindications before prescribing medications. self-administered checklists may be effective for most patients but not all. a study of women screening for contraindications to the use of oral contraceptive pills revealed underreporting of hypertension ( ) . therefore, simply relying on a patient's report of a recent blood pressure measurement, as hims and roman do, is insufficient. the remote screening for women using at-home in vitro fertilization kits will similarly fail to adequately identify contraindicated conditions for ovulation induction and/or pregnancy, such as hypertension, thyroid disease, and ovarian cysts. furthermore, not all risk factors for ovarian hyperstimulation syndrome can be assessed remotely. although the incidence of ovarian hyperstimulation syndrome from clomiphene and letrozole is low, it is not zero. given the potential for severe disease in women with ovarian hyperstimulation syndrome, it is prudent to identify upfront those patients at risk. last, and perhaps most importantly, the direct-to-consumer approach to sexual and reproductive health allows patients to circumvent their general medical care. a report from accenture found that only % of generation z patients have a primary care physician, in contrast to % for prior generations ( ) . whereas online health platforms clearly state that they are not a substitute for a primary care physician, by allowing for a ''quick fix'' they discourage a visit to the doctor in which a discussion of chief complaint will be followed by a thorough health history, a comprehensive physical examination, and a conversation about preventive care. it is often a problem-focused visit that leads to the establishment of a long-term doctor-patient relationship. the direct-to-consumer approach may therefore cause more harm than good, both within the domains it is aiming to treat and to the overall health of its consumers. pro: ''online'' and ''at home'' health care enhances access to optimal therapeutics (continued) con: ''online'' and ''at home'' health care impedes access to optimal therapeutics (continued) advocate for a baseline pelvic ultrasound and hysterosalpingogram before a clomid cycle is attempted, both of which require physical interaction with a clinic. overall, the availability of prescription medications with well-defined risk profiles to patients through virtual sources is only likely to enhance the access to care for sexual and reproductive health conditions by easing the pain of embarrassment some patients may experience. furthermore, the ability to provide prescription medications virtually will increase the relevance of virtual health visits because ''something was done to treat my condition'' in the minds of patients. given the current circumstances of the covid- pandemic, where both patient-centered care and social distancing are important issues, home-based testing for fertility is becoming increasingly important. semen analysis (sa) evaluation with manual microscopic analysis and computer-assisted sa are labor intensive, time limited, and expensive ( ). furthermore, many men are reluctant to seek conventional clinical testing because of embarrassment, long wait times, inconvenience, and social stigma. men may be more willing to use homebased sa kits that can provide point-of-care fertility diagnostic analysis ( ) . a valid critique of the existing home sa kits includes that they lack adequate quality control, they are vulnerable to false-negative results by the provision of rudimentary quantitative or qualitative results, and they are prone to sample handling errors ( ) ( ) ( ) . however, new approaches to home sa testing are overcoming the challenges of current technology by including paper-based diagnosis ( ), smartphone-based computer-assisted sa system ( ), digital holography ( ) , and microfluidic channels ( ) . with the development of the y smartphone-based computer-assisted sa system, which uses the smartphone's camera and light source to measure motile sperm concentration, there's great potential to support home testing and evaluate fecundity in a young generation familiar with information technology without formal training ( ) . both the y device in addition to the increased availability of direct-to-consumer prescription medications, we have also witnessed a dramatic shift in the number of patients using at-home fertility testing. what was once only available through the physician's office is now easily accessible through the internet or in grocery store aisles. after home collection of a finger prick blood sample, patients can send away for anti-m€ ullerian hormone, folliclestimulating hormone, and thyroid hormone levels. additionally, at-home testing is also available for sa and genetic carrier screening. ancestry and andme, just two of the many commercial companies branded as ''health and ancestry services,'' offer direct-to-consumer home dna kits. at-home testing within the reproductive health space presents unique implications for both patients and healthcare providers, particularly as it relates to counseling, reliability, and privacy. commercial companies are not mandated to provide pretest and posttest counseling for the testing they offer, and when it is provided, it often requires the patient to take the initiative. in many situations, the individuals undergoing testing are not aware of the possible implications of the results on themselves, their families, and society as a whole. for example, at-home ovarian reserve testing is often marketed to individuals with amenorrhea or suspected polycystic ovary syndrome. after receiving the results, the consumer is left to interpret them on her own, which may result in false reassurance or the opposite-unnecessary anxiety. real harm may be encountered if in-pro: ''online'' and ''at home'' health care enhances access to optimal therapeutics (continued) con: ''online'' and ''at home'' health care impedes access to optimal therapeutics (continued) and paper-based devices claim to show . % and % agreement with the results of computer-assisted sa, respectively ( , ) . currently, less than a quarter of cancer patients bank sperm, and the most common reason for not doing so is lack of access to facilities ( ) . timely cryopreservation is critical for cancer patients because in some cases, > visit will be required to cryopreserve a sufficient amount of sperm, or there's an urgent need to start anticancer therapy ( ) . hence, home-based cryopreservation kits will be a valuable alternative. home sperm-testing kits can be used to evaluate azoospermia after vasectomy. however, goldstein et al. ( ) observed that home sa kits failed to significantly improve compliance and suggested that there be partner involvement. home-based ovulation predictor kits have the potential to increase autonomy and empowerment to women who face barriers to enacting decisions in relation to their sexuality and reproduction. ovulation predictor kits aid women in fertility awareness with regard to when ovulation should occur during their menstrual cycle and identify anovulatory cycles, which may prompt them to seek medical assistance earlier. during artificial reproduction treatment, patients need to be monitored by serial endovaginal ultrasound, which entails economic, logistic, emotional, and potential environmental cost and also reduces practitioners' time for more complex tasks. self-operated endovaginal telemonitoring was specifically designed for this use and proved noninferior to traditional two-dimensional transvaginal sonographic monitoring ( ) . despite physical separation and asynchronous communication, couples stated a better doctor-patient relationship when home-based diagnostic tests were used ( ) . in light of the current situation of the covid pandemic along with the boom of telemedicine, physicians should consider incorporating home-based kits for both male and female fertility testing with the caveats that even though we may not get accurate data all the time, data from these kits can be used to guide care. the coronavirus pandemic has quickly catapulted telemedicine to the forefront of healthcare delivery ( ) . the value of telemedicine during the pandemic is clear-the ability to treat patients without the risk of exposure to and spread of the highly infectious covid- virus is paramount. but dividuals substitute at-home testing for a thorough medical evaluation and counseling regarding the overall health and fertility implications of certain conditions. furthermore, diagnosis of genetic carrier status and risk of associated health conditions, such as with brca testing, requires thoughtful interpretation regarding the implications for individuals and families. this testing and concurrent counseling should be conducted in conjunction with an experienced genetic counselor and physician. the reliability of test results is another major issue with athome testing, even with one of the most widely used tests, urinary ovulation predictor kits. while luteinizing hormonebased ovulation tests have demonstrated accurate and superior ovulation detection when compared with basal body temperature charting, calendar calculation, or observation of cervical discharge changes, errors can still occur ( ) . furthermore, these kits have not been consistently associated with increased pregnancy rates when used alone. in one prospective cohort study in a population that conceived via donor insemination using either home monitoring with urinary luteinizing hormone kits compared with laboratory serum luteinizing hormone testing, pregnancy rates were significantly reduced in those performing home testing: . % per cycle versus . % over the same time period (p< . , % ci . - . ) ( ) . with all forms of athome testing, there is significant variability in the sensitivity and reproducibility of various tests, as well as user error, which may account for these differences in outcome. last, issues of data privacy and confidentiality must be considered with at-home fertility testing. commercial testing allows significant data mining, often without consumers' consent or knowledge. testing results may become part of large databases that incorporate demographic and genetic information, which may have unintended negative consequences for consumers. at the time of this publication, the covid- pandemic has fundamentally changed the way we deliver care to our pa-pro: ''online'' and ''at home'' health care enhances access to optimal therapeutics (continued) con: ''online'' and ''at home'' health care impedes access to optimal therapeutics (continued) telemedicine offers advantages that will persist beyond the pandemic, such as increased access, cost savings, and patient and physician satisfaction. access to care is among the greatest barriers to delivering quality healthcare in reproductive medicine. the american society for reproductive medicine recognizes the responsibility of providers and policy makers to address disparities in access to reproductive medicine, including the need to reach underserved populations and geographic areas ( ). nangia et al. ( , ) found substantial geographic disparities in access to both artificial reproduction treatment and male reproductive specialists, and harris et al. ( ) estimated that approximately . million women of reproductive age lived in an area without an artificial reproduction treatment clinic. women and men seeking fertility care who are geographically distant or cannot present for in-person visits can establish care through telemedicine. although physical examination and in-office diagnostics are paramount for the evaluation of both female and male fertility, an initial telehealth visit can uncover pertinent history, identify risk factors, and establish the physician-patient relationship. a telemedicine visit not only provides the couple with initial counseling and a sense of progress but also can initiate a diagnostic cascade, most of which can be performed locally such as serum hormone and sperm analyses, and possibly formulate treatment approaches. hernandez et al. ( ) found that implementation of an electronic telehealth intervention for women presenting for fertility evaluation resulted in shorter time to diagnostic testing and artificial reproduction treatment. telemedicine is also useful for couples seeking a second opinion because telehealth democratizes access to national experts, enabling couples to seek consultation beyond their typical geographic boundaries. last, zwingerman et al. ( ) demonstrated that telemedicine can improve access to fertility preservation services among women presenting with cancer at geographically remote satellite centers, offering an expedient solution for a time-sensitive problem. implementation of telehealth can be seamless with rapid integration in just a few days ( ) . and whereas the initial investments in training and infrastructure for telemedicine may be costly, there is a long-term savings potential. telehealth decreases the use of on-site resources, reducing the need for and optimizing the use of clinical space. zholudev et al. ( ) found that urologic telemedicine visits were $ cheaper and more efficient than face-to-face encounters. the wide availability of telemedicine through free interfaces such as doximity or even a simple phone call has democratized access for both physicians and patients alike. there are already robust data to suggest that patients prefer telemedicine. reed et al. ( ) found % patient satisfaction with telemedicine across specialties within a large healthcare system, and others have shown high patient satisfaction within urology specifically ( ) ( ) ( ) . although data regarding physicians' perspectives are limited, the potential tients. one significant change has been an increased use of telehealth services. certainly, even before the current health crisis, patients were increasingly using social media and fertility tracking applications on their electronic devices to obtain and engage with reproductive health information ( ) . although these technological advances may offer some benefits, it is critical to ensure the safe delivery of the highest quality care and the dissemination of accurate information. the greatest limitation to telehealth is the lack of an inperson physical examination. unlike other areas of medicine that may be amenable to video consultation, many topics and diagnoses within sexual and reproductive health cannot be easily diagnosed and discussed. subjective aspects of the physician-patient interaction, such as body language, are often lost during telehealth encounters, making patients feel less at ease, especially when discussing sensitive topics. without the face-to-face interaction, the physician's ability to make an accurate diagnosis can be limited, with the potential for greater patient loss to follow-up. technical issues such as slow internet speed and poor audio or video quality can further complicate these encounters. many telehealth applications require patients to set up and log into third-party portals, which often are not patient friendly and can be overly burdensome. this has been shown to lead to lower use of telehealth services by men and women of lower socioeconomic status, further accentuating health disparities in the delivery of care ( ) . to effectively deliver reproductive health care through telehealth, we need to first improve user-centered design to optimize patient engagement. additional concerns with telehealth involve privacy, physician liability, and reimbursement ( ) . currently, standardized guidelines are not available to support appropriate safeguards and regulatory oversight, such as ensuring that these telehealth applications are compliant with the health insurance portability and accountability act. furthermore, delivery of reproductive medicine services via telehealth may present unique quality and safety risks for patients and may increase physician liability. for instance, given that as telehealth allows the delivery of care across state lines, physicians and practices are confronted with the complex issue of conflicting state licensure requirements. last, current reimbursement structures present a major barrier to the adaptability of this technology. the current procedural terminology codes have been insufficiently updated to facilitate reimbursement in both fee-for-service and value-based models of care delivery, and additional research is required to determine the effect of alternative payment models that use bundled telehealth services. all in all, physicians and patients should recognize that these emerging technologies require further refinement and may not always adequately substitute for previously accepted, traditional approaches to medical care. pro: ''online'' and ''at home'' health care enhances access to optimal therapeutics (continued) con: ''online'' and ''at home'' health care impedes access to optimal therapeutics (continued) for increased flexibility in hours and practice location has great upside for physicians and could even have a significant impact in reduction of burnout, which also confers clear long-term cost savings. detractors may point to potential hurdles to the implementation of telemedicine for reproductive health, but they are easily overcome. data have already shown equivalent outcomes for obstetric and fertility care provided via telemedicine ( , ) . the lack of physical examinations could result in missing critical diagnoses such as testicular masses, but telemedicine is intended not to supplant but to augment inperson examination ( ) . others have raised concerns regarding the regulatory burden, reimbursement, and medical-legal liability of practicing telemedicine, particularly across state lines. however, fogel and kvedar ( ) found no cases of medical malpractice pertaining to telemedicine. if physicians and institutions familiarize themselves with federal, state, and payer requirements, telemedicine can be practiced safely and with optimal physician reimbursement. as providers, payers, regulators, and professional societies scramble to determine a roadmap for the implementation of telemedicine, one thing is clear: telemedicine is here to stay. the american society for reproductive medicine has task forces and guidelines in place to usher our specialties into the era of telemedicine. while we look forward to future studies examining efficacy across a variety of metrics we should continue to proceed with telemedicine integration, albeit with caution, given the many potential benefits of this novel platform. pro: ''online'' and ''at home'' health care enhances access to optimal therapeutics (continued) con: ''online'' and ''at home'' health care impedes access to optimal therapeutics (continued) home sperm testing device versus laboratory sperm quality analyzer: comparison of motile sperm concentration standard operating procedures for taking a sexual history group. a population-based survey of sexual activity, sexual problems and associated help-seeking behavior patterns in mature adults in the united states of america international estimates of infertility prevalence and treatment-seeking: potential need and demand for infertility medical care fda approval of flibanserin-treating hypoactive sexual desire disorder hypoactive sexual desire disorder: international society for the study of women's sexual health (isswsh) expert consensus panel review paperbased quantification of male fertility potential emerging technologies for home-based semen analysis home testing for male factor infertility: a review of current options validation of a smartphone-based, computer-assisted sperm analysis system compared with laboratory-based manual microscopic semen analysis and computerassisted semen analysis compact and light-weight automated semen analysis platform using lensfree on-chip microscopy portable lensless wide-field microscopy imaging platform based on digital inline holography and multi-frame pixel super-resolution toward a microfluidics-based home male fertility test a novel approach to improving the reliability of manual semen analysis: a paradigm shift in the workup of infertile men access to male fertility preservation information and referrals at national cancer institute cancer centers optimizing fertility preservation for pre-and postpubertal males with cancer home testing does not improve post-vasectomy semen analysis compliance selfoperated endovaginal telemonitoring versus traditional monitoring of ovarian stimulation in assisted reproduction: an rct patients' ideas, expectations and experience with self operated endovaginal telemonitoring: a prospective pilot study real-time patient-provider video telemedicine integrated with clinical care disparities in access to effective treatment for infertility in the united states: an ethics committee opinion access to assisted reproductive technology centers in the united states distribution of male infertility specialists in relation to the male population and assisted reproductive technology centers in the united states geographic access to assisted reproductive technology health care in the united states: a population-based cross-sectional study impact of telemedicine on assisted reproduction treatment in the public health system expanding urgent oncofertility services for reproductive age women remote from a tertiary level fertility centre by use of telemedicine and an on-site nurse navigator implementation guide for rapid integration of an outpatient telemedicine program during the covid- pandemic comparative cost analysis: teleurology vs conventional face-to-face clinics telemedicine online visits in urology during the covid- pandemic: potential, risk factors, and patients' perspective examining the value of video visits to patients in an outpatient urology clinic evaluating the patient experience with urological video visits at an academic medical center treatment of opioid use disorder in pregnant women via telemedicine: a nonrandomized controlled trial increased incidence of testicular cancer in men presenting with infertility and abnormal semen analysis reported cases of medical malpractice in direct-toconsumer telemedicine erectile dysfunction in young patients is a proxy of overall men's health status erectile dysfunction: aua guideline accuracy of self-screening for contraindications to combined oral contraceptive use millennial and gen z consumers paving the way for nontraditional care models, accenture study finds urinary-based ovulation and pregnancy: point-ofcare testing ovary and ovulation: home ovulation testing in a donor insemination service infertility influencers: an analysis of information and influence in the fertility webspace barriers and facilitators that influence telemedicine-based, real-time, online consultation at patients' homes: systematic literature review key: cord- - uqnlpvc authors: johannson, kerri a. title: remote monitoring in idiopathic pulmonary fibrosis: home is where the bluetooth-enabled spirometer is date: - - journal: am j respir crit care med doi: . /rccm. - ed sha: doc_id: cord_uid: uqnlpvc nan in the midst of a global pandemic, the medical world has scrambled to find alternative ways of providing clinical care. there are specific challenges for respiratory patients given that access to pulmonary function testing (pft) and diagnostic imaging is largely restricted, and virtual clinic visits have replaced in-person appointments. there are unique considerations for patients with interstitial lung disease (ild) ( ) . they are frequently older, have impaired lung function, and may be systemically immune suppressed, all reasons to minimize potential exposures to severe acute respiratory syndrome coronavirus (sars-cov- ). however, as we are learning, it is difficult to evaluate a patient's clinical status without pfts, chest imaging, or physical examination. although we long for the glory days of usual care, there are also important limitations to intermittent clinic visits. hospital-based pfts require patients to travel to the clinic and provide only a crosssectional snapshot of disease. furthermore, the typical clinic data obtained every - months may not capture the impact of disease on the whole person. home-monitoring programs and medical mobile applications are increasingly available to remotely track everything from blood pressure to migraine to mood. within pulmonary medicine, handheld spirometry has been used to monitor sarcoidosis and lung function post-transplant ( , ) . mobile health tools have been proposed as useful for patients with idiopathic pulmonary fibrosis (ipf) given the complex progressive nature of disease and challenges associated with clinical trials of therapeutics. beyond simple spirometry, home monitoring in ipf has extended to include measures of physical activity, symptoms, quality of life, and medication tolerability ( ) ( ) ( ) ( ) . in this issue of the journal, moor and colleagues (pp. - ) build on their previous work with data from a multicenter randomized controlled trial of home monitoring in patients with ipf ( ) . through patient collaboration, the authors built a secured personal platform that integrates hand-held spirometry with patient-reported outcome measures, symptom scores, medication side effects, an information library, and access to electronic consultations. ninety patients were randomized at antifibrotic treatment initiation ( to home monitoring and to standard care), with between-group change in the king's brief ild score as the primary outcome. from baseline to weeks, the king's brief ild score improved by . (sd = . ) points in the homemonitoring group versus . (sd = . ) in the standard care group, with higher scores indicating improvement. the betweengroup difference was . ( % confidence interval, . to . ; p = . ), whereas the minimal clinically important difference is estimated to be . points. the psychological domain increased by . points (sd = . ) in the home spirometry arm versus . (sd = . ) with standard care, a between-group difference of . points ( % confidence interval, . to . ; p = . ). patients in the home-monitoring arm reported greater general well-being than those receiving standard care. there were no differences in cough, dyspnea, or fatigue. interestingly there were more medication changes and dose adjustments in the home-monitoring group versus the standard care group (mean, vs. . per patient) despite similar rates of side effects and selfreported medication satisfaction. in the home-monitoring group, there were numerically higher hospitalizations ( vs. ) and additional appointments with healthcare providers ( vs. ) . most exceptional about this paper is the program of patientcentered home monitoring that has been developed by this group in the netherlands. their collaborative approach involving key stakeholders (i.e., patients) is reflected in compliance and satisfaction measures. the mean adherence to daily home spirometry was % over weeks, whereas the overall mean adherence to the intervention was %. nearly all patients would recommend this home-monitoring program to others, and % believed it provided better insights into their disease course without being burdensome. consistent with prior reports, home fvc was highly correlated with hospital-based fvc measures in this study from start through weeks. these data support the feasibility and utility of such a platform. there are four major applications for home monitoring in patients with ipf. the first is to provide an alternative to hospitalor clinic-based care, which minimizes travel and inconvenience for patients. this is particularly important for patients of older age or with advanced disease whose oxygen supplies may run out during travel. it is also important for those with long-distance commutes to ild specialty clinics in rural or geographically remote locations. second, home monitoring allows for increased frequency of assessments, with daily or weekly testing, compared with the usual every - months. more data points allow for a more precise estimate of change to delineate clinical trajectory and may allow for earlier intervention and prognostication ( , ) . the granularity of remotely collected data extends to symptoms, quality of life, and physical activity levels, providing a comprehensive patient-centered evaluation. third, home monitoring should be empowering for patients with ipf. lung function data should be unblinded and accessible in real time for disease monitoring and management while providing reassurance or medical follow-up as clinically indicated. the devices must be user-friendly and not burdensome while providing accurate measures to inform disease status. fourth, a driving impetus for home-monitoring platforms in ipf has been to facilitate clinical trials of therapeutics. there is an ongoing need to optimize trial efficiency and minimize visits while maximizing enrollment, and creative trial designs are needed. beyond fvc, home monitoring allows for frequent symptom, activity, and quality-of-life measurements, all potential parts of a meaningful composite endpoint. in an age of social distancing and virtual visits, are platforms such as this the future for clinical follow-up? perhaps. but the results of moor and colleagues may not be generalizable to other clinical or research programs without paying heed to the key considerations outlined above. to date, there have been successes and less-than-successful applications of home monitoring in ipf, and it recently proved challenging for implementation in a large clinical trial ( ) . an invested coordination team is critical to provide training and troubleshoot technical issues so that data acquisition is optimized and patients are supported. future work should evaluate the cost effectiveness of such platforms considering both the clinic and patient perspectives. such tools should also be viewed through a lens of accessibility with a goal of reducing disparate access to ild specialist care. for successful implementation of such home-monitoring platforms, clinicians and trialists should emulate moor and colleagues' patientcentered approach. n practical considerations for the diagnosis and treatment of fibrotic interstitial lung disease during the covid- pandemic daily home spirometry to detect early steroid treatment effects in newly treated pulmonary sarcoidosis home spirometry in bronchiolitis obliterans after allogeneic haematopoietic cell transplant mobile health monitoring in patients with idiopathic pulmonary fibrosis a home monitoring program including real-time wireless home spirometry in idiopathic pulmonary fibrosis: a pilot study on experiences and barriers physical activity and activity space in patients with pulmonary fibrosis not prescribed supplemental oxygen air pollution exposure is associated with lower lung function, but not changes in lung function, in patients with idiopathic pulmonary fibrosis home monitoring in patients with idiopathic pulmonary fibrosis: a randomized controlled trial daily home spirometry: an effective tool for detecting progression in idiopathic pulmonary fibrosis home monitoring improves endpoint efficiency in idiopathic pulmonary fibrosis pirfenidone in patients with unclassifiable progressive fibrosing interstitial lung disease: a double-blind, randomised, placebo-controlled, phase trial copyright © by the american thoracic society despite decreases in the incidence of certain cancers and associated mortality, cancer remains highly lethal and very common. about % of americans will develop some form of cancer (including nonmelanoma skin cancer) in their lifetimes. one-fifth of americans will die of cancer. notwithstanding important progress made in the reduction of lung cancer in the united states with antismoking campaigns, it still tops the list for the most common cause of cancer death in the united states, as well as the world. lung cancer is a global public health problem. there were an estimated . million lung cancer cases and . million deaths in worldwide. incidence and mortality rates vary -fold between regions, mainly because of variation in carcinogen exposure such as tobacco smoking. however, if tobacco smoking were removed altogether, lung cancer would still be in the top cancers worldwide ( ). there are a number of wellknown lung carcinogens to which exposure occurs mainly in the workplace. but studies of lung cancer in occupational populations are often hampered by small sample size and inability to control for, or assess interactions with, tobacco smoking. it is critical to understand the risks posed by exposures to occupational lung carcinogens to develop effective control programs for this deadly disease.in this issue of the journal, two papers by ge and colleagues (pp. - and pp. - ) address major issues related to occupational lung cancer ( , ) . one critical feature in this published key: cord- - ksbvisv authors: sloane, philip d. title: cruise ships, nursing homes and prisons as covid- epicenters: a ‘wicked problem” with breakthrough solutions? date: - - journal: j am med dir assoc doi: . /j.jamda. . . sha: doc_id: cord_uid: ksbvisv nan i was not surprised that some of the earliest signs of covid- outside of china were outbreaks on cruise ships. several years ago, during a month on a -passenger cruise ship, i learned firsthand how rapidly viral infections can travel through those floating communities. i was the trip physician; the month was december; respiratory virus season had arrived early that year; and we unknowingly welcomed several unwanted guests when our passengers boarded in nassau. within two weeks over half the passengers were actively coughing and the clinic was inundated. on just one typical clinic day, i diagnosed three cases of influenza a; eight patients with viral bronchitis; one case of pneumonia, and three cases of gastroenteritis. and this was a "small" voyage; more common are passenger lists at least five times larger! news headlines soon shifted from cruise ships to nursing homes. the canary in the coal mine was a five-star-rated home in kirkland, washington, whose staff had the misfortune of being blindsided because they had no forewarning that covid- was in the area when a cluster of febrile respiratory infections hit the facility, leading within two weeks to deaths. after that, the floodgates opened, such that as of mid-april over , deaths -a fifth of all u.s. covid- mortality -were linked to skilled nursing facilities. in new york, long-term care facilities had five or more deaths each; in new jersey, almost two-thirds of nursing homes had recorded covid- infections; and in pennsylvania % of covid- deaths were reported to have been among residents of nursing homes or personal care homes. next, we began to hear similar reports from prison complexes. cook county (illinois) jail, one of the country's largest, reported that over inmates and staff tested positive for covid- , with inmates constituting two-thirds of the cases and all three of the deaths. closer to my own home, the neuse correctional institution in goldsboro nc, a state prison, reported that inmates tested positive for the coronavirus, and that the vast majority were asymptomatic; and practically in my backyard, the federal prison in butner, nc reported that inmates had tested positive for the virus, at least five of whom died of the infection. while at first glance cruise ships, prisons, and nursing homes are very different institutions, in fact they share many commonalities. each is a densely-population congregate setting with cramped housing units that do not lend themselves well to sheltering in place. each prepares meals in a central kitchen and serves them to large gatherings. each sponsors activities that bring large groups together on a regular basis. each has relatively large numbers of staff who have extensive contact with the residents and work under demanding conditions for modest pay. each has medical resources that compete with other, non-medical priorities. each has health care regulations that, while extensive, could not possibly have fully prepared them for covid- ; instead, in the face of an impending outbreak, rapid, nimble responses were needed, and these have proven hard to initiate and coordinate in all three settings. thus, each setting can be considered high risk for amplifying infectious diseases such as covid- , because the conditions that prevent disease dissemination are nearly impossible to achieve. indeed, so daunting are the prospects for avoiding the spread of covid- in these settings that a case can be made for getting as many people out as soon and safely as possible. for the cruise ship industry, the short-term solution was to suspend all operations for days, with a longer furlough likely. the challenge, of course, will be whether and if so when and how operations can be safely resumed. reducing the prison population is a more challenging proposition and requires legal action. nonetheless, many states have acted to reduce bookings and/or to release persons who are older, have chronic disease, or have been jailed for nonviolent crimes. , in california, noting that older inmates are at particularly high risk if they acquire the infection, a motion was filed to allow older inmates to be released even if they had been incarcerated for violent crimes. no similar movement has taken place around discharging nursing home residents, despite significant family concerns and some recommendations that families look for alternatives. instead, most experts, including the u.s. centers for disease control and prevention (cdc), do not recommend contemplating such moves, because acceptable living arrangements are not readily apparent. a few families have taken independent action, particularly to bring post-acute patients home earlier than anticipated, but this has been infrequent. more common is the opposite situation -hospitals looking to discharge covid- patients to nursing homes for post-acute care, and in response some nursing home units and entire nursing homes devoting themselves to covid- care. these transitions, as well as outbreaks in the nursing homes themselves, place tremendous pressure on the nursing home industry to in short order develop the policies and procedures, provide the requisite staffing, and acquire the protective equipment and testing capacity that are necessary to safely manage covid- patients. during my "viral" december as a cruise ship doctor, i had several advantages in comparison to nursing home or prison health care. my population was relatively healthy, educated, and health-conscious; the average age was . i had numerous opportunities to provide public health messages about basic hygiene, which were understood and occasionally followed. the crew -largely minorities from the developing world who worked long hours -had minimal turnover and were meticulous in their work. furthermore, cruise ships that visit u.s. ports are required to follow cdc policy recommendations and have their infection control processes inspected twice annually and the results posted publicly. , on the ship i held clinic twice a day; access was on an as-needed basis; and the ship provided nurses to support the medical clinic and conduct a wide variety of prevention and surveillance activities. the clinic's on-site testing included an influenza kit, a cbc, and an x-ray machine; so, while resources were limited, our diagnoses were immediate, and positive flu cases could be isolated within minutes after presenting to the clinic. on the other hand, the unavailability of many tests and the lack of ready access to referral resources came into sharp focus when, hours away from the next port, a passenger in his 's presented with incipient sepsis, having spent the previous hours alone in his cabin awaiting spontaneous resolution of what proved to be bacterial pneumonia. furthermore, even on that short trip i had to deal with outbreaks of acute gastroenteritis and, aware that norovirus can spread like wildfire on cruise ships, struggled to decide whether or not to isolate patients. still, these issues were minor compared with what i would have experienced had we encountered a more deadly outbreak such as covid- . in contrast, nursing home care is far more challenging. the average patient is in their low 's, has multiple chronic illness and disabilities, needs hand-on care with activities of daily living, and has some degree of cognitive impairment. post-hospitalization admissions come daily, often bringing with them such subacute problems as delirium, gastrointestinal upset, pressure ulcers, and atelectasis. shortages and rapid turnover of nursing and personal care staff create care challenges almost daily. medical care providers are off-site most of the time and have competing responsibilities; in consequence, decisions are often made over the telephone, with nursing staff assuming far more responsibility than they do in other health care settings. laboratory specimens are collected on site but transported to outside laboratories for processing, resulting in diagnostic delays. covid- magnifies the challenges of providing medical care in the nursing home. it brings into sharp focus the fact that infection control leadership tends to be assigned to a parttime nurse whose position turns over more than % per year, meaning that institutional knowledge and the ability to provide leadership in the face of an infection outbreak is often compromised. and, while many staff show tremendous loyalty and perseverance in the face of a coronavirus outbreak, a covid- outbreak leads to increased staff absenteeism due to the need for isolation among persons who become ill or from fear of contracting the disease, thereby worsening an already difficult staffing situation. shortages of personal protective equipment occur rapidly, without a clear avenue to obtain more, and access to testing is limited, with results often not returning for four or more days. prison medicine is in many ways similar, with the exception that the average patient is younger, has fewer chronic illnesses, and rarely has cognitive impairment. perhaps even more than nursing homes, prisons have difficulty keeping and retaining physicians and nurses -in my home state of north carolina, for example, it is the norm to have as many as a quarter of prison healthcare staff positions unfilled. furthermore, as with nursing homes, lack of access to rapid testing is a major problem, with covid- results typically taking four or more days to be reported. a world health organization guide to preparedness, prevention and control of covid- in prisons advocates ready access to testing, routine hand washing, hand sanitizer access, physical distancing, availability and use of disposable tissues when coughing or sneezing, admonition to avoid touching the face if hands are not clean, use of masks for any person with respiratory symptoms, environmental cleaning measures capable of killing viruses, restriction of movement when cases present, and use of personal protective equipment for staff attending to persons with suspected covid- disease. unfortunately, these are no more than a pipe dream in many settings. given the many risks in and limitations of these settings, working in health care at this time has come to be considered a heroic act. efforts to recognize and support health care workers have ranged from audible displays such as howling, screaming, applauding, and beating pots and pans, to fundraising and volunteer efforts to provide needed personal protective gear and mental health support. , i can only hope that the public's applause, approbation, and vocal support for hospital staff and emergency medical providers extends all the way to the staff of nursing homes and prisons, where the resources are usually far less available, the workload especially massive, and the remuneration lower. unfortunately, a common first reaction from the media, policy makers, and regulators to a covid- tragedy has been to look for someone to blame. a perfect example of such blame was the levying of a $ , fine on life care center of kirkland, washington, for failing to report the outbreak, for giving inadequate care, and for failing to provide -hour emergency physician services. i can understand the regulators' point of view. nursing homes have been known for years to be an especially hazardous component of the health care system, with high rates of multidrug resistance and multiple problems around infectious disease prevention. infection control issues have chronically been and continue to be the most common single reason for deficiency citations. to help improve infection control practices, the u.s. centers for medicare & medicaid services in released new requirements for long-term care facilities, all components of which were to have been initiated by november . so, levying a punitive fine to a nursing home that had been previously cited for infection control violations would seem a reasonable reaction. but the covid- pandemic is too unprecedented an event to expect any residential care setting to have been adequately prepared to handle an outbreak. instead of blaming, a much more helpful approach would be to pull together as rapidly as possible to identify and address the problems and needs, and to support rather than to blame. after all, it appears that covid- is going to be with us for years, and that the current short period of intense scrambling and tight isolation is going to give way to a long, arduous "dance" in which we seek to keep the disease at bay while trying to maximize restitution of our pre-covid- lives and routines. in planning and policy, the term "wicked problem" is used to describe issues that are complex, intractable, and open-ended. solutions to wicked problems are neither easy nor apparent, do not lie within existing decision-making pathways, require imagination and transdisciplinary thinking, call for changes in society, are the best that can be done at the time, and need to be continually re-examined. the covid- pandemic has exposed a wicked problem for the cruise ship industry, the prison system, and the nursing home industry. since the pandemic will persist for at least a few more years and, if the virus mutates as does influenza, perhaps permanently, changes in all three industries are needed beyond the stopgap measures that are currently being pursued. i don't know enough about the cruise ship industry or the prison system to hazard a guess about which directions the ultimate problem-solving should take. however, by virtue of having worked in post-acute and long-term care for over years, i feel prepared to highlight a few issues that need priority attention: physical plant limitations, chronic staffing problems, poor infection control, and limited health care capacity. together they embody the wicked problem of how to best care for older persons who have numerous morbidities and functional limitations, many of whom are near the end of life. of course, these issues have already been pervasive in the nursing home industry; all that covid- has done is to shine a spotlight on them. will the tragedy of covid- for long-term care settings mobilize positive change, through out-of-the-box, interdisciplinary problem-solving? will it lead policy makers to eliminate multi-person rooms, shared bathrooms, and large wards, and possibly large buildings, because they increase infection risk? will it lead to real solutions to the staffing problems that have existed in long-term care for decades? will it truly integrate the long-term care, acute care, and primary care systems in a manner that is not only seamless but in which acute care settings no longer receive most of the resources? given the societal ageism that has been exposed by the covid- pandemic, and the persistent economic problems that will follow the pandemic for the foreseeable future, i would not bet money on major changes occurring in the long-term care system in the near future. but i would be thrilled to lose that wager. covid- in a long-term care facility they're death pits': virus claims at least , lives in u.s. nursing homes cruise industry suspends operations in response to coronavirus prison policy initiative. responses to the covid- pandemic prosecutors, defense attorneys press to release inmates, drop charges and thin jail population in response to the coronavirus epidemiologist says covid- may be more infectious than thought. the harvard gazette families anxious over loved ones in nursing homes, assisted living centers for disease control and prevention. guidance for cruise ships on influenzalike illness (ili) management physician practice in the nursing home: missing in action or misunderstood a -year pragmatic trial of antibiotic stewardship in community nursing homes world health organization. preparedness, prevention and control of covid- in prisons and other places of detention. interim guidance supporting the health care workforce during the covid- global epidemic washingon nursing home faces $ , fine over lapses during fatal coronavirus outbreak prioritizing prevention to combat multidrug resistance in nursing homes: a call to action nursing home infection control program characteristics, cms citations, and implementation of antibiotic stewardship policies: a national study reform of requirements for long-term care facilities programs-reform-of-requirements-for-long-term-care-facilities the hammer and the dance. medium wicked problems in public policy tackling wicked problems through transdisciplinary imagination detection of sars-cov- among residents and staff members of an independent and assisted living community for older adults covid- in italy: ageism and decision-making in a pandemic key: cord- -st fltpy authors: jacobsen, grant d.; jacobsen, kathryn h. title: statewide covid‐ stay‐at‐home orders and population mobility in the united states date: - - journal: world med health policy doi: . /wmh . sha: doc_id: cord_uid: st fltpy many jurisdictions enacted stay‐at‐home orders (also called shelter‐in‐place orders, safer‐at‐home orders, or lockdowns) when sars‐cov‐ began spreading in the united states. based on google mobility data, every state had substantially fewer visits to transit stations, retail and recreation facilities, workplaces, grocery stores, and pharmacies by the end of march than in the previous two months. the mean decrease in visitation rates across destination categories was about percent in states without stay‐at‐home orders and percent in states with stay‐at‐home orders. similarly, there were fewer routing requests received by apple in large cities for public transportation, walking, and driving, with a percentage point greater mean reduction in metropolitan areas under statewide stay‐at‐home orders. the pandemic led to large decreases in mobility even in states without legal restrictions on travel, but statewide orders were effective public health policy tools for reducing human movement below the level achieved through voluntary behavior change. the public health measures used to prevent and control the transmission of infectious diseases include a variety of nonpharmaceutical interventions (npis). for contagious infections, one of the most valuable npis is limiting the number of contacts between potentially infected individuals and those who might be susceptible to the pathogen. during an epidemic or a pandemic of an infectious disease, public health prevention and control interventions may include restrictions on local and international travel and trade (jacobsen, ) . some forms of "social distancing" or "physical distancing" may be voluntary, but others may be mandated by governments and enforceable by law. one way to reduce contacts is to separate infectious individuals from the general population. measures used to prevent individuals who have a confirmed diagnosis of an infectious disease from infecting caregivers, other health-care staff, and other patients have typically been described as isolation (wilder-smith & freedman, ) . isolation protocols in hospitals may require patients to be treated in negative pressure rooms, and personnel who enter the treatment room may need to wear full protective gear, including gloves, gowns, eye protection, and face masks or shields. a second option is to restrict the movements of apparently healthy contacts of infected individuals so that those individuals will not be at risk of infecting others if there is a period of contagiousness before the onset of symptoms. this approach is generally referred to as quarantine, and it typically involves healthy contacts of infected individuals being required to stay away from others until they become ill (at which time they may be considered to be under isolation rather than being quarantined) or enough time has passed that there is no risk that they are contagious even in the absence of symptoms (parmet & sinha, ) . quarantine is usually applied to primary contacts, defined as individuals who are known to have had contact with a case. quarantine may also be applied to secondary contacts, who are individuals known to have had contact with a primary contact of a case. quarantine often occurs at home, but it is also legal to confine quarantined individuals at another location. quarantine measures imposed inequitably, without transparency, or for longer than strictly necessary may raise ethical concerns about human rights violations (passaro, ; wynia, ) . the sars-cov- pandemic required a rethinking of the options for controlling the spread of a pathogen within borders and across borders (cohen & kupferschmidt, ) . china banned travel out of heavily affected cities and implemented lockdowns on millions of residents (fang, wang, & yang, ; kraemer et al., ) , italy implemented quarantines in a few towns in the north before expanding those restrictions nationwide (paterlini, ) , and other countries also moved quickly to identify the options for slowing the rate of new infections, whether through national edicts or locally imposed rules. isolation and quarantine measures typically are applied to just a few patients and the few individuals who may have had contact with those patients, and it is unusual to quarantine an entire neighborhood or town. because implementation of widespread restrictions on movement in response to a pandemic has historically been rare (barbisch, koenig, & shih, ) , there were few examples of large-scale mobility limitations to draw on when the novel coronavirus emerged. there was also limited evidence of whether such measures would be acceptable to the public and whether the proportion of the population in areas under movement restriction orders who strictly adhered to the required behavior changes would be sufficient to significantly reduce the transmission rate. in the united states, the first coronavirus-related activity restrictions were issued on march , , when a community within new rochelle, new york, was declared to be a "containment area." a traditional quarantine order would require individuals presumed to be exposed to stay at home. this containment order was not intended to limit individual movement. instead, it mandated the closure of schools and large gathering places within the zone, including religious buildings (chappell, ) . residents were allowed to enter and leave the containment zone, but they were not allowed to gather in large groups within the designated geographic area. on march , , a "shelter-in-place" order was issued for six counties in the san francisco bay area (allday, ) . shelter in place was a term many californians were familiar with due to its use during wildfires and other natural disasters, active shooter drills, and other short-term emergency situations. in those contexts, "shelter in place" means "stay where you are," but that was not what the covid- orders were asking residents to do. the order did not require individuals to stay where they happened to be located when the order was released. residents were allowed to leave home for essential purposes, including food, medical care, and outdoor exercise, and people working at businesses deemed to be "essential"-such as grocery stores, hospitals, pharmacies, veterinary clinics, utilities, hardware stores, auto repair shops, funeral homes, and warehouses and distribution facilities-were allowed to continue onsite work. within a few weeks after the first shelter-in-place orders were issued in the united states there was a shift toward this type of decree generally being referred to as a stay-at-home order (opam, ) . the new language was required because stay-at-home orders that apply to whole nations or entire states or provinces are not traditional quarantine measures due to most individuals under the orders not being confirmed contacts of individuals with confirmed infections. later on, some governors and mayors began using the term safer-at-home to describe their orders. colloquially, the term lockdown was also used. however, as of the end of april the terminology remained unsettled and somewhat confusing. the first statewide order in the united states that restricted mobility to reduce the transmission of coronavirus was issued by california's governor on march , , and it required all residents to remain at home except when engaging in essential activities (friedson, mcnichols, sabia, & dave, ) . this was quickly followed by statewide orders restricting nonessential travel outside the home in illinois and new jersey on march , new york on march , and six additional states on march (connecticut, louisiana, ohio, oregon, washington, and west virginia). as testing showed that local transmission of sars-cov- was occurring in jurisdictions across the united states, local-and state-issued stay-at-home orders became increasingly common. although there was no national directive mandating that states implement particular coronavirus control actions, the number of states with statewide stay-at-home orders increased from on march , to on march , on march , and on april (mervosh, lu, & swales, ) . this piecemeal action led to calls for more coordinated decision making across states with respect to measures that might limit the spread of the novel coronavirus (haffajee & mello, ) . part of the hesitancy some government officials expressed about implementing and enforcing stay-at-home measures was uncertainty about their effectiveness. for example, when defending the decision not to implement a stay-at-home order, governor asa hutchinson of arkansas said he continued to ask himself "are you accomplishing anything by doing that order?" (brantley, ) . the lack of an evidence base about what types of restrictions are necessary, how long the restrictions must stay in place to be effective, and how stay-at-home orders should be enforced made decision making difficult (gostin & wiley, ) . computer models could predict outcomes of "lockdowns" based on various sets of parameters (sjödin, wilder-smith, osman, farooq, & rocklöv, ) , but the scarcity of real-world data about the impact of large-scale mobility restrictions meant that there was considerable uncertainty about the validity of the models' projections. an important limitation of the computer models was that they could not predict whether residents would actually adhere to guidelines or mandates, especially in places with small police forces that did not have the means (or, in some cases, the desire) to fine, arrest, and imprison people who violated the orders. evidence about the effectiveness of stay-at-home orders at generating populationlevel behavior change will be critical for enabling policymakers to make informed decisions about when to implement stay-at-home orders, when they can safely be relaxed, and how they should be enforced. this paper examines how mobility patterns changed during the early stages of community spread of sars-cov- in the united states and the extent to which stay-at-home orders were effective at generating behavior change. google's covid- community mobility reports present state-specific information about trends in google users' locations over time (google, ). we merged these data with information on the date of enactment of stay-at-home orders in order to compare visits to various types of destinations in states that had and had not implemented stay-at-home orders by march , (mervosh et al., ) . in our analysis, change in visits reflects the change in visits by march , , relative to the median visitation rate between january and february , . we use this date in part due to data availability as of the writing of this manuscript in april , but also because march was a date when only about half of states had issued stayat-home orders so the impacts of policy differences could be examined. the rate of decrease in travel to various types of locations was accessed for observations ( states plus the district of columbia). the mean rates of decrease for destinations was calculated for states with and without stay-at-home orders. tests for differences in the mean rates of decrease in visits were conducted using independent samples t tests. for states without statewide stay-at-home orders, we also used t tests to compare differences in visitation rates based on whether local (city or county) stay-at-home orders had been initiated anywhere within the state as of march . apple's apple covid- mobility trends reports present data about changes in the rate of apple map route requests in selected cities around the world, including metropolitan areas in the united states: atlanta, baltimore, boston, chicago, dallas, denver, detroit, houston, los angeles, miami, new york city, philadelphia, san francisco (bay area), seattle, and washington dc (apple, ). routing requests are generated when a customer uses an apple map application to generate a pathway between a starting location and a destination. users can select which modes of transportation are desired for the trip. to be consistent with the analysis of google's statewide mobility data, we examined changes in apple's city data through march , . changes in the frequency of routing requests for different modes of transportation are reported relative to a baseline date of january , . based on google's mobility data, every state had substantially decreased visits to public spaces by march , , compared with approximately weeks earlier (table ) . however, there were larger reductions in visits in states that issued stay-athome orders before the end of this observation period. significant differences between states with a statewide stay-at-home order and the without a statewide order were observed for all destination categories, including transit stations, such as bus and train stations (− percent versus − percent); retail and recreation facilities, such as restaurants, cafes, and shopping centers (− percent versus − percent); workplaces (− percent versus − percent); grocery stores and pharmacies (− percent versus − percent); and parks, including national and local parks, public beaches and marinas, plazas, and public gardens (− percent versus + percent). many states exempted parks from the stay-at-home restrictions, and some actively promoted outdoor exercise, so visits to parks did not follow the pattern of other destinations. excluding parks, states without a stay-at-home order had mean average decreases in visitation rates across destination categories of . percent. in states with stay-at-home orders, the mean decrease in visitation rates across the same categories was . percentage points lower at . percent. among the states that had not implemented statewide stay-at-home orders, states had some cities and/or counties that had enacted local stay-at-home orders. google's mobility data show that mobility behaviors in the states with stay-at-home orders applying to only part of the state's residents were not statistically different than those in states without stay-at-home orders in all jurisdictions ( table ). this observation suggests that local orders had limited impact on changing statewide behavioral patterns. the data from apple further support the observations from the google data (table ) . routing requests across all three modes of transportation decreased substantially in all cities, falling by at least percent even in states without stay-at-home orders. however, cities in states with stay-at-home orders had decreases in routing requests that were . to . percentage points greater than those occurring through voluntary behavior change. the mean difference in mobility trends across categories, − . percent, is very similar to the mean difference found in the google data, − . percent. the observed differences in statewide mobility patterns provide evidence that stay-at-home orders are effective in reducing population-level movement below the rate that can be achieved by individuals voluntarily changing their behaviors. the observed differences in movement within cities from the apple data further support the greater effectiveness of statewide orders over local ones. the limited effectiveness of local orders is likely the result of economic integration across jurisdictions. suppose that county a issues a stay-at-home order while adjacent county b remains open for business. residents of county a who work in county b will continue to drive to work, and some businesses that primarily operate in county a will shift their work to county b. residents of county a who are unable to engage locally in commercial and other activities that are not allowed in county a may choose to travel to county b for shopping and entertainment. while travel to some types of destinations within county a may decrease under the stay-athome order, some individuals will travel even farther than typical to access goods and services. our analysis also shows that even in states without statewide mobility orders residents made substantially fewer trips away from home as alarm about the threat of covid- in the united states grew. this suggests that many individuals and households will choose to continue to limit their own mobility voluntarily as long as cases of covid- are occurring locally, and that expectation is consistent with other studies (andersen, ; engle, stromme, & zhou, ) . if sars-cov- transmission is still occurring in a city or county when a state-or local-level stay-athome order is lifted, mobility patterns are unlikely to immediately rebound to prepandemic levels. voluntary reductions in travel to public spaces are likely to continue, even as governments allow individuals to resume more of their usual prepandemic routines. one of the concerns about stay-at-home orders is that they are not effective at generating sustained behavior change. by the end of april, as there were more calls to "reopen the economy," cell phone data from the united states showed that individuals in places that were still under stay-at-home orders were beginning to make more trips away from home than they had in the middle of april (zaveri, ) . law enforcement officers could have forced the closure of places where groups were congregating in violation of stay-at-home orders, but most government officials were reluctant to ask the police to break up those gatherings. compliance with stay-athome orders might be greater early in an epidemic before public goodwill and patience are expended. coordinated and widespread orders are likely to be more effective than local ones at limiting the number of contacts between residents. the associations between stay-at-home orders and epidemiological outcomes related to covid- will need to be evaluated more fully later in the pandemic when more data are available. location data from mobile phones, like the data used in this analysis, will be valuable for examining movement patterns and understanding how the pandemic has affected human behaviors, economics, and politics (allcott et al., ; barrios & hochbert, ; painter & qiu, ) . our analysis focuses on the early weeks of the covid- pandemic when awareness of substantial rates of community-spread of sars-cov- within the united states was first emerging. due to the timing of this special issue, the analysis examines changes in movement behaviors only through march . mobility reports based on cell phone data may not be representative of mobility changes in the general population, as people who use cell phones may behave in systematically different ways than those who do not. google's dataset includes aggregated data only from mobile phone users whose device settings allow their location history data to be used for this type of purpose, and those who opt in to sharing location data may not be representative of all mobile phone users. apple's dataset includes only requests for directions from the apple maps application, and those users may be systematically different from users of other mapping apps and operating systems. the data from google and apple, and the way google classifies public locations into various categories, are not able to be independently verified. a second limitation that it is not possible to examine the degree to which stayat-home policies may have been implemented in response to observations about voluntary changes in mobility among constituents. governors of states where a large proportion of residents voluntarily opted to restrict their own movement in march may have been more likely to implement stay-at-home orders early in the pandemic than governors of states where residents perceived the threat from covid- to be minimal and did not substantially change their behaviors during march. our analysis might, therefore, overestimate the impact of stay-at-home orders in states where clusters of covid- detected early in the pandemic caused voluntary changes in movement behavior prior to the issuance of legal stay-athome mandates. however, if this mechanism was driving the results, we might also expect there to be some differences evident in our analysis of how states without any stay-at-home orders compared to states with local stay-at-home orders. as per table , we did not observe such differences. as places that have been under stay-at-home orders begin to ease their restrictions, government authorities will need to create clear vocabulary about the exact activities that are allowed and not allowed at various stages of intensifying and relaxing activity constraints. stay-at-home orders are not blanket mandates not to leave a place of residence. these orders must define which businesses, schools, and service providers may remain open or must close; explain what types of commercial and recreational activities are allowed; and specify details about what other activities are deemed to be essential, allowable, or banned. the language used with the public to describe these orders and the way they change over time will need to be simple, memorable, and unambiguous. for example, a color-coding system (red, orange, yellow, and green) may be suitable shorthand for the phases of movement restrictions, but only if the activities associated with each color are readily understood. however, ending stay-at-home orders when many residents still perceive an infectious disease to be a threat in their communities may not lead to dramatic resurgences of social and economic activity, because reduced population movement during pandemics is a function of both voluntary and government-imposed behavior change. our analysis found that movement decreased dramatically in the united states during the early emergence of the pandemic even in states without statewide stay-at-home orders. future research that evaluates the dynamic effects of mobility restrictions over the duration of their implementation will be valuable for understanding their effectiveness during the various stages of a pandemic emergency. as the covid- epidemic evolves, information about human mobility trends may be valuable to policymakers who are making decisions about when to enact stay-at-home orders and how long to maintain legal restrictions on movement. identifying the specific measures that work best under various conditions to achieve public health and socioeconomic goals will improve the ability of communities and nations to respond quickly and effectively to future emerging infectious disease events. grant d. jacobsen, phd, is an associate professor and director of the master of public administration (mpa) program in the school of planning, public policy, and management at university of oregon. kathryn h. jacobsen, phd, mph, is a professor of epidemiology and global health at george mason university. conflicts of interest: none declared. polarization and public health: partisan differences in social distancing during the coronavirus pandemic only essential businesses open in counties early evidence on social distancing in response to covid- in the united states apple. . covid- mobility trends report is there a case for quarantine? perspectives from sars to ebola risk perception through the lens of politics in the time of the covid- pandemic coronavirus today: two more deaths and a defense of the state's policies coronavirus: new york creates 'containment area' around cluster in new rochelle strategies shift as coronavirus pandemic looms staying at home: mobility effects of covid- human mobility restrictions and the spread of the novel coronavirus ( -ncov) in china did california's shelter-in-place order work? early coronavirus-related public health effects google. . covid- community mobility reports governmental public health powers during the covid- pandemic: stay-at-home orders, business closures, and travel restrictions thinking globally, acting locally-the u.s. response to covid- in the oxford handbook of global studies the effect of human mobility and control measures on the covid- epidemic in china see which states and cities have told residents to stay at home it's not 'shelter in place': what the new coronavirus restrictions mean political beliefs affect compliance with covid- social distancing orders covid- -the law and limits of quarantine reforming quarantine: moving towards a more ethical and effective approach to outbreak management on the front lines of coronavirus: the italian response to covid- only strict quarantine measures can curb the coronavirus disease (covid- ) outbreak in italy isolation, quarantine, social distancing and community containment: pivotal role for old-style public health measures in the novel coronavirus ( -ncov) outbreak ethics and public health emergencies: restrictions on liberty quarantine fatigue' has more people going outside key: cord- - j axc d authors: isaia, gianluca; marinello, renata; tibaldi, vittoria; tamone, cristina; bo, mario title: atypical presentation of covid- in an older adult with severe alzheimer disease date: - - journal: am j geriatr psychiatry doi: . /j.jagp. . . sha: doc_id: cord_uid: j axc d nan we would like to report the case of an alzheimer disease patient affected by covid- admitted to the hospital at home service (hhs) of the university teaching hospital of turin, italy. hhs is a multidisciplinary service operating days a week that can be directly activated by hospital wards to allow early and supported discharge from hospital. four doctors and nurses operate days a week and look after patients a day, on average. the hhs provides substitutive hospital-at-home care in a ''clinical unit'' model. several examinations and treatments can be carried out at home, including blood tests, electrocardiogram, spirometry, pulse oximetry, ultrasonographic investigations, placement of peripherally inserted central catheters, oxygen and other respiratory therapies, intravenous fluids and drugs, blood transfusions, surgical treatment of pressure ulcers ( , , , , ) . on march th , an year old woman was admitted to the emergency department (ed) from her private home with mild fever ( , °f) and drowsiness. her medical history included only a longstanding history of alzheimer disease with dysphagia and total functional dependence, and a left arm fracture one month prior to hospitalization. in terms of her mental status, caregivers reported that she was aware of her surroundings at her home, while at hospital admission and during the hospital length of stay she was minimally conscious. she was not able to swallow food and drink, neither to swallow medications. blood pressure at admission was / mmhg; she had low oxygen blood saturation (spo %) without dyspnea or cough. other blood values were the following: wbc cells/mm , hemoglobin . g/dl, creatinine . mg/dl, pcr mg/l. chest x-ray was negative for pneumonia. while she did not have any history of exposure to covid, she underwent nasopharyngeal swab which resulted negative. she was then moved to an acute medical ward, where she was treated with cephalosporin and fluid supplementation with marginal improvement of clinical conditions (oxygen supplementation was stopped) and blood chemistries (creatinine . mg/dl, pcr mg/l), but persistently high wbc count ( cells/mm march rd, the patient returned home with the support of hhs program. on march th a new episode of blood oxygen saturation (spo - %) occurred, associated with diarrhea but without fever. a second nasopharyngeal swab was done, which was positive for covid- infection. according to recommendations from an infectious disease specialist, the patient was treated only with supportive measures, including oxygen supplementation, parenteral nutrition, low-dose heparin and corticosteroids (betamethasone mg twice daily). it was not possible to administer hydroxicloroquine due to an inability to swallow, while the nasogastric tube was not considered appropriate. on april th, the patient is still alive and hemodynamically stable. home care for demented subjects: new models of care and home-care allowance substitutive "hospital at home" versus inpatient care for elderly patients with exacerbations of chronic obstructive pulmonary disease: a prospective randomized, controlled trial hospital at home for elderly patients with acute decompensation of chronic heart failure: a prospective randomized controlled trial delirium in elderly home-treated patients: a prospective study with -month follow-up the rad-home project: a pilot study of home delivery of radiology services the authors report no funding to disclose or conflicts with any product mentioned or concept discussed in this article. key: cord- - rbxdimf authors: narushima, miya; kawabata, makie title: “fiercely independent”: experiences of aging in the right place of older women living alone with physical limitations date: - - journal: j aging stud doi: . /j.jaging. . sha: doc_id: cord_uid: rbxdimf this study explores the experience of aging among older canadian women with physical limitations who live by themselves. while aging in place has been a policy priority in rapidly greying canada, a lack of complementary public supports poses challenges for many older adults and their family members. employing a qualitative methodology, and drawing from the notion of aging in the right place, we collected personal narratives of women (aged to ) in two geographic areas in ontario, including residents of regular houses, apartments, condominiums, assisted living and community housing for seniors. through thematic analysis, we identified four overarching themes: ) striving to continue on “at home”, ) living as a “strong independent woman”, ) the help needed to support their “independence”, and ) social activities to maintain self. our findings illustrate how, despite their mobility limitations, older women can change their residential environment and their behavior by deploying the coping strategies and resources they have developed over time. however, we also found that older women are largely silent about their needs, and that experiences varied depending on life histories, health conditions, and the availability of supports in their wider environment (home care, alternative housing options, accessible transportation, opportunities for social and physical activities). we hope these findings will incite further studies and discussion to help make aging in the right place a real choice for anyone who wishes to do so. population aging in canada will keep accelerating over the next decade. the ratio of "senior citizens" (aged years and older) is expected to grow from . % in to . % by (statistics canada, ) . "old-old" canadians in their late s and above are among the fastest growing age group (hudon & milan, ) . like many countries, canada's policy response to this demographic change is the promotion of aging in place, generally understood as being able to remain in familiar homes or communities for as long as possible. the premise is to promote independent living in later life, while shifting care for the older adults from institutions to home and community (dalmer, ; lehning, nicklett, davitt, & wiseman, ) ; a shift long criticized by social gerontologists for being part of the devolution of aging and long-term care policies. policy makers have largely supported this strategy as a cost-effective long-term care alternative. more than anyone, however, it is older adults themselves who are in favor of the idea. aging in place has become common in canada. comparing the and censuses, the ratio of people aged and older living in "collective dwellings" (e.g., assisted living, supportive housing, retirement residences, seniors' apartments, continuum care facilities, and nursing homes) has dropped from . % to . % (garner, tanuseputro, manuel, & sanmartin, ; statistics canada, ) . given the increasing numbers of older canadians, one would expect this number to grow, not decline. the census found only . % of seniors had moved in the past year, a much lower rate than the general population ( . %). this should not, however, be assumed to reflect older adults' satisfaction with their housing. in fact, almost a quarter of seniors reported their housing as "below standard" in terms of either affordability, adequacy, or suitability (federal/provincial/territorial ministers responsible for seniors, ). although health status among older adults is heterogeneous, chronic diseases and physical limitations increase with advancing age. more than three-quarters of canadians aged and older reported having at least one chronic condition, and one quarter reported three or more. one out of four of those aged and over reported a need for support in instrumental activities of daily living (iadl), while one in ten needed support in activities of daily living (adl). like the rest of the world, older women are disproportionately represented in these groups (canadian institute for health information, ) . older women in general are more likely to face challenges since women live longer and are more likely spend their later years with mobility problems and pain (bushnik, tjepkema, & martel, ) and nearly twice as likely to live alone than their male counterparts. the census found . % of seniors lived alone, . % of who were women (tang, galbraith, & truong, ) . in addition, women living alone comprised . % of seniors with "core housing needs" (federal/ provincial/territorial ministers responsible for seniors, ). given these demographic, health, and socio-economic trends, more research on the experience of aging in place among older women, especially those living alone with physical limitations, is needed (gonyea & melekis, ) . from "aging in place" to "aging in the right place" the conceptual development of aging in place began when american environmental gerontologists (lawton & nahemow, ) introduced the "ecological model of aging" to examine the relationship between people and their environments. in this model, an older person's functioning is determined by the "fit" between "personal competences" (e.g., physical, psychological, and social functions) and "environmental characteristics" (e.g., the immediate and wider environments). as changes happen in either or both, older adults can try to adapt their physical and social environments to find a comfort zone by deploying their resources (greenfield, ; lawton & nahemow, ; peace, holland, & kellaher, ; stafford, ) . this theoretical framework helps us to understand aging in place as a dynamic process of personenvironment interactions. wahl, iwarsson, and oswald, and their collogues in germany and sweden have extended this framework to, "maintaining the highest autonomy, well-being, and preservation of one's self and identity as possible, even in the face of severe competence loss" (wahl, iwarsson, & oswald, , p. ). this process is influenced by two concepts: "belonging" and "agency". belonging involves an older person's sense of connection with others and the environment and preserved identities over time. agency refers to sufficient control of their environment to maintain autonomy. belonging grows in importance as people get older, especially when they develop functional impairments (oswald, wahl, schilling, & iwarsson, ; wahl et al., ) . this model reminds us of the benefits of taking a life-course perspective to understand the experience of aging in place. in the same vein, golant ( golant ( , , an american environmental gerontologist, has put forward the notion of aging in the right place. pointing to the unequal capabilities and resources among older adults, golant ( golant ( , criticizes how aging in place has been promoted as a cultural imperative in america, emphasizing an individual's self-reliance in sustaining a healthy active lifestyle. even when older adults have chronic health problems, disabilities, or cognitive deficits, he argues, if they are offered "enabling residential and care opportunities that strengthen their coping skills to achieve their evolving needs and goals", they can still "age successfully" (golant, , p. ). golant thus advocates shifting public discourse, and older adults' thinking, from aging in place to aging in the right place, which includes expanding the various alternative housing options being consideredsuch as group housing, active adult communities, senior apartments, assisted living residences, continuum care, and the like. in this model, regardless of residential type, older adults can achieve "residential normalcy" where they feel comfortable, competent, and in control. older adults may use various coping strategies when their residential normalcy becomes incongruent. moving to alternative housing such as assisted living, active adult communities, and nursing homes can be seen as adaptive responses to aging. golant ( ) also noted that enriched coping strategies are products of the resilience of both older persons and their environments. despite this theoretical development, the public discourse surrounding aging in place in canada seems to have stagnated. for example, in a public guide issued by the federal government, "aging in place" is defined as "having access to services and the health and social supports and services you need to live safely and independently in your home or your community for as long as you wish and are able" (federal/provincial/territorial ministers responsible for seniors, , p. ). the guide also notes that an individual can achieve this goal through early planning in such areas as home, community, transportation, care and support services, social connection, healthy lifestyle, finance, and information. as dalmer ( ) has noted, such neoliberal rhetoric frames aging in place as "a matter of choice" that can be responsibly managed by individuals. given the lack of affordable housing alternatives and the unmet need for long-term home care services for many older canadians, however, this so-called choice is often illusory. as mentioned, according to the census, only . % of canadians aged years and older lived in "collective dwellings," including nursing homes (the most common) and other alternative senior residences such as assisted living and retirement homes. this suggests that moving to alternative housing, as advocated by aging in the right place, is still uncommon in canada. this is partly due to a lack of affordable senior residences. in ontario, the average monthly rent for a standard space for a resident without high-level care needs was $ canadian in (canada mortgage and housing corporation, ). given seniors' average annual income -$ , for men and $ , for women (statistics canada, ) -alternative housing is unaffordable for most older canadians, especially women. as more and more older adults age in place, their homes and communities increasingly become locations for health and social care services (hereafter "home care"). since long-term home care is not universally insured under the canada health act, older adults who don't qualify need to resort to community agencies that often require a co-payment or privately hire help (armstrong, zhu, hirdes, & stolee, ; gilmour, ; government of ontario, ; johnson et al., ; lee, barken, & gonzales, ) . according to the / canadian community health survey, over one-third ( . %) of people with home care needs did not have their needs met, especially among those with home support services for maintenance of daily living (gilmour, ) . the current policy of aging in place needs more complementary public supports to reduce the challenges facing many older adults and their families. it is within this context that we explore the experiences of aging in place among older canadian women with physical limitations who live alone. our research questions include: ) what is it like to live at "home" alone for older women with physical limitations? ) what support do they receive and how? and ) what are the enabling and disabling factors for their independent living? this study employed a qualitative research methodology (merriam & tisdell, ) , more specifically, combining personal narrative analysis (maynes, pierce, & laslett, ) with a narrative gerontology approach (de medeiros, ) . a qualitative approach lets us explore inductively how older women construct and make sense of their experience of aging in place (merriam & tisdell, ) , connecting their individual experience and life trajectories with broader cultural and social forces (maynes et al., ) . this reinforces what narrative gerontology advocates: listening to older people's lives as stories to understand their social world -personal, interpersonal, structural and cultural (de medeiros, ) . this study is part of a larger study, and ethics clearances were obtained from the research ethics boards of both researchers' universities. we recruited participants in two areas (a large metropolitan area and a medium sized city) in southern ontario. the criteria for inclusion were: women years and older, who lived by themselves at home with chronic physical conditions, and who were using or had used home care services. following the notion of aging in the right place, we included both regular house, condominium, and apartment, as well as alternative housing such as assisted living and community housing for seniors. we created a flyer, noting we were "looking for participants in a research study to learn their experience of and opinions about living with chronic physical conditions." approximately flyers were either posted in their residences or directly delivered to potential participants through personal support workers (psws) in collaboration with five different community organizations. recruitment was harder than we had expected. since only two participants voluntarily called back, we asked our participants, colleagues, and friends to deliver the flyer to whoever might meet the criteria. eventually, we had interviewees. although every interview will be used in our larger study, participants met all the criteria for this study. the participants ranged between and (the average age was ), and lived in various residential types in varying states of health. all have been given pseudonyms (see participants' profiles in table ). the data collection was conducted in the spring and summer of . the first author and a student research assistant conducted all interviews together. eleven interviews were conducted in participants' homes and one was in a public space. visiting their residences let us observe their daily living and neighborhood environments. each interview lasted from to min. we began by asking participants to tell us their life histories, followed by questions about their daily and weekly routines, current physical condition, strategies and challenges for managing their independent living, the support they receive, and their opinions about aging in place in general. since one chinese immigrant participant (hong, ) had difficulty speaking english, her daughter (lin, ) joined the interview as a translator, also providing some of her own insights as a family carer. following each interview, we provided a gift card of $ with a thank you note. then the two interviewers debriefed each other, recording what they had noticed in the field notes. all interviews were audio recorded, transcribed verbatim, and sent to participants to check accuracy and to modify if requested.the twelve transcripts comprised pages in total. following the steps of thematic analysis (merriam & tisdell, ) , we started open coding by reading the first participant's data set (transcript and field notes), then underlined any segments that might be meaningful and attached labels (i.e., code and themes). next, we moved to axial coding by sorting these codes and themes into more comprehensive groups (i.e., categories). then, we created a matrix to display the categories, themes, and supporting quotations for the first participant transcript. we went through the same procedures for the second data set, and compared the two matrices to create a master list of crosscase categories and themes. this master list was used as a basis for analyzing the other participants' data. comparing all participants' matrices, we generated four overarching themes as findings. to increase trustworthiness, our design included data triangulation, member checking of interview transcripts, a reflexive journal, and peer debriefing with research team members (creswell, ; merriam & tisdell, ) . we found the following four overarching themes: ) striving to continue on "at home", ) living as a "strong independent woman", ) the help needed to support their "independence", and ) social activities to sustain self. these overarching themes contain several subthemes. the first theme involves our participants' efforts to live in their homes comfortably and safely. as shown in table , many participants had lived in the same residence for decades, while a quarter had moved in the past four years due to changes in their mobility or marital status. in any event, all participants seemed comfortable in their residence, which they called "home". the first thing that we noticed was that these homes preserve their personal histories and identities. their well-kept living rooms were stuffed with vintage furniture, family photos, art, crafts, books, instruments, souvenirs, plants, pets, etc. participants four participants mentioned they might have to move in the future when they could no longer take care of themselves. yet their narratives suggested the difficulty of moving to alternative housing. certainly, i couldn't afford one of these fancy private assisted retirement homes. i've been to one of them to visit a friend of mine. she pays about $ a month for one room. i cannot afford that on my pension (dorothy, ). my mom [hong, ] is on the waiting list. well, it's been years already since she registered. it's one of the chinese long-term care homes. […] oh, yes, it's common. they say it normally takes over years! (lin, ). these comments underline the lack of affordable alternative housing many older adults face. during our visit, we were also impressed by their efforts to control their home environment to live safely. all participants had at least one chronic health condition. however, their biggest challenges were mobility issues -especially difficulty in walking, falls, and the fear of falling. despite their use of mobility aids (e.g., cane, walker, wheelchair), many participants talked about their occasional falls. all had made some home adaptations by installing safety features (e.g., staircase railing, grab bar, special chair and non-slip mat for bathrooms). they were also using assistive devices. ten of participants carried an emergency alert pendant or had installed an alert system with pull cord for their bathrooms. this was a lifesaver for some. valerie, , who has had multiple falls, related: i've used it twice. one time, they were able to get in through the kitchen window. the other time, i was doing christmas decorations when my daughter phoned, and when i turned, i fell. my daughter phoned a friend's husband to come, but before he arrived, i phoned the emergency alert and asked them if there was a particular way he should pick me up. they immediately sent somebody and got me on the chair. valerie's story suggested how unexpectedly and easily falls can happen at home, and how the assistive device helps in those instances. many participants were also using other technologies to help increase their sense of control and autonomy. half used a tablet or a computer for frequent communication with their families, reading news, and searching information. a participant with vision problems showed us a sight enhancement reading machine. one had a mobile chair lift for the staircase. the most advanced case of impairment was renelsa, who at spent most of her day in bed due to her frailty, but she could still live alone in her one-bedroom apartment in community housing. her building had a security camera to screen visitors, and her apartment door could be opened with a remote control beside her bed. we had no idea about how limited her mobility was until she greeted us in her bedroom. participants in assisted living appreciated similar safety features in their units, and the railings in the hallways and elevators. in addition, mei lien, , explained how her residence gave her "peace of mind": "last year, in the middle of night, i had to call somebody, and they [staff] came up. i don't have family in canada, so at least you know somebody is there if you call". margaret, , who was recently widowed, reflected on her decision to move from her house to a seniorfriendly condo: the very last thing i wanted to do was move into this building… do i want to live here? no! but should i live here? absolutely! … if you think your health is going to be the same tomorrow as it is today, you are wrong. we all progress to some extent from day to day … i did not know the presence of a garbage disposal in the hallway was so convenient. so in the big picture, it was a very wise thing. in this way, each participant was negotiating their own physical and social conditions, and actively managing to control their home environment as best they could. the second theme involves our participants' distinctive shared character. although their life histories and current conditions varied, we were struck by their positive, spirited, and persevering attitudes. contrary to our expectation, participants rarely brought up their needs. we thus had to ask if there was anything to complain about. dorothy, , who had just recovered from a fall on ice, laughed and said: well, i think, oh, god, i ache, i ache, i ache, but i shouldn't complain, especially when i see other people… at least, i can still walk around, i can still look after myself, and do my own thing in my own house. so you know, i would say i'm fortunate. […] well, you have to make the choices yourself, don't you? you either sit there and wither away, or you get involved and do something. luisa, , mentioned that she had learned it from her role model: i am a contented person. i am not always looking for what i don't have. i learned that from my mother. she independently lived in her own apartment until , climbed stairs to the fourth floor, and always baked and cooked for visitors. you know, she never complained about her situation. she was fiercely independent. as these comments imply, many of our participants held to a similar principle in their lives. in fact, participants commonly described themselves as brave, independent women. their life stories were full of personal and historical events: the great depression, world war ii, immigration, marriage, divorce, separation, accident, the deaths of spouses, children, and friends, and their own health problems. every participant had an occupation at some point, and many repeatedly used the word "independent" to describe themselves. as hannah, , who had immigrated from germany with her husband after world war ii, put it: i was always this independent (laughter). i was married, and i was independent. i became a widow at the age of , and raised three children. when my husband got sick, i had a job [a lab aid in a hospital] and i took a year of absence to take care of him at home. but i needed the money, so i cleaned houses, took in other people's clothes. i wanted my children to have a better education. i never went on welfare, i worked and all my children went to university. if you came from a different country, you help yourself, you don't rely too much on the country. it's my job to look after the family. a former university professor, margaret, who was mourning her husband's death and managing her own health problems, described her efforts to be a strong role model for others at years old: i am very strong-willed person. i was always a determined youngster. even as a girl, i was an independent child (laughter). even now, i just have to get really strong to be a good role model for women. i always try to be, because who is going to be the one to make me look and feel strong? me! you will only be strong if you work to be that way. […] i just live today, that's exactly how i think. i believe you stay the strongest person you can be each day you are alive. as these comments suggested, our participants' self-identity as strong independent women developed through various life experiences, sustains them in the face of the challenges of later life. nevertheless, we also learned that participants' "independent" lifestyles were supported by many other people in a mix of formal and informal care. due to our recruitment criteria, all participants had had an experience of publicly funded "formal" home care. however, at the time of our interview, only four were eligible for long-term home care, receiving min to . h a day. for the other eight participants, publicly funded home care ended two to three months after a hospitalization. once this post-acute care was over, they were back on their own. the four participants who could afford it hired a paid housekeeper a few hours a week. two more, thanks to their retirement benefits, continued regular physiotherapist visits at home or attended weekly exercise classes through community agencies. compared to those living in regular houses or apartments, participants in assisted living had an advantage in the availability of and accessibility to long-term home support services right in their own buildings. however, some expressed hesitation to use additional support services due to their worry about the additional cost: "if you need the extra service, you have to pay. it depends if you or your family can afford it. so you just hope and pray you won't need more services" (mei lien, ). like mei lien, many participants saw cost as a barrier to longer-term formal home care. as mentioned before, however, none explicitly advocated a more affordable publicly supported long-term home care system. in contrast, participants talked much more openly about informal care and support -their reliance on their family members, friends, and neighbors for regular help for transportation and household chores. ten out of participants, regardless of residential type, had at least one close family member nearby. while most participants still managed to clean their homes, do laundry, and cook simple meals, carrying groceries and to taking public transportation were getting harder. family members were the primary source for a wide range of household chores. luisa, , described the support from her son's family: it helps me a lot that my son and daughter-in-law live here [in the same city]. i've been calling them to do things. he installed the railing on the basement stairs, because i've had three falls since last december. it just makes me feel more secure. and my daughter-inlaw takes me to a rheumatologist in another city, because i don't drive highways anymore. for participants whose family members lived far away, friends and neighbors were crucial sources of social support: "i have a good friend who takes me grocery shopping and to doctors' appointments" (hannah, ); "when i had the cancer, i had radiation times in december. every morning i told my friends, i cannot do it one more day, but i did thanks to them" (elizabeth, ). as these comments suggest, most participants were grateful for the informal support and care provided by family members, friends and neighbors. clearly, these provided crucial instrumental and emotional support to all participants. overall, participants' narratives suggested an imbalance between formal and informal home care and support. even for participants receiving publicly funded long-term home care, that was not enough to live alone at home with disability and frailty, due to the limited time and tasks performed by the personal support workers (psws). for example, although psws help renelsa three times a day for a total of . h, it is her brother who brings over meals twice a week to store in her freezer. for hong ( ), who speaks limited english, communication with the psw is challenging. as her daughter said, "the agency working in this building has no psw who speaks chinese. for showering, communication is very important. that's why i need to translate. otherwise, i could be preparing breakfast during that time" (lin, ). participants in assisted living also reported regular informal support from their family members. katharine, , who no longer cooks for herself, mentioned: "i can have dinner at the dining hall downstairs, but my niece and nephew do weekly shopping for my breakfast and lunch." compared with participants living in houses, however, those in assisted living did not have to rely family and friends for daily personal care. overall, regardless of residential type, our participants' narratives suggest their independent life was unattainable without support from many others. the fourth theme involves the benefits of opportunities for continued social participation. despite noticeable physical discomfort, most participants kept trying to maintain the activities and the relationships that they valued, which were clearly an important part of their social identity. three participants living in houses were still earning a small income. many participants also kept volunteering in their communities. in particular, participants in assisted living had many opportunities within their own buildings. for example, tami, , a master of d origami, taught it to her fellow residents while volunteering at a nursing home once a week. as she explained: in , when i got this problem [a rare and progressive degenerative disease], i started volunteering. the volunteer work makes me happy. sometimes, it's just sitting and talking to them [the residents in a nursing home]. but if i talk to them, they smile. they are losing their smile all day, so i want to make them smile. smile … like cheeks up. their smiles make me happy. like tami, many participants mentioned their joy at making themselves useful to others, despite, or possibly because of, their own mobility and health challenges. tami also appreciated the wheel-trans system that made her volunteering possible. most participants also stayed active in the groups to which they belong. elizabeth, , a former entrepreneur, described her monthly routine: "i go to church on sundays, probus club and torch club once a month…i also go to all sorts of classes". although elizabeth had no family members in canada, her long-term involvement in her local community had helped her develop a circle of good friends who she could rely on. renelsa, , a former nurse and devoted christian once nicknamed "the sister in the operating room", could no longer attend church, so three fellow congregants visited her twice a month: "on sunday, we have church right here in my apartment! i really look forward to when they come". many residents in assisted living had an even busier schedule of social, cultural, and physical activities. emily, , showed us her monthly calendar on which she had circled her activities. on some weekdays, her schedule is packed from : am to pm! we also noticed a notable difference in the accessibility for exercise between those living in their own house and apartment and those in assisted living. most participants in assisted living continued to attend using their canes and walkers, while those living in their own houses stopped going to exercise classes in their communities due to a lack of transportation and coverage for long-term physiotherapy. participants' narratives make it clear that these opportunities for civic engagement and social and physical activities give them a routine to leave their "homes" to socialize, and enable them to keep playing a social role in their communities. moreover, older women mutually support each other in various ways by giving rides, bringing soups, etc. they not only receive support from others, they kept providing support to each other. overall, our study's findings illustrate how older women living alone with physical limitations can, with support from others, manage to maintain their independence in places where they feel "at home". all were achieving "residential normalcy" (golant, ) in "homes" that were "uniquely their individual domain" (kontos, , p. ) , where they could feel comfort, autonomy, security, self-identity, and continuity of self (golant, ; stones & gullifer, ; wiles, leibing, guberman, reeve, & allen, a) . their familiar belongings-what coleman and wiles's ( ) termed their "objects of meaning"-symbolically connected their past, present, and perhaps future selves. this also overlaps with the concept of "belonging". as wahl et al. ( ) noted, familiarity, routines, and emotional attachment developed over time help preserve identity and enable aging well in the right place. despite their physical discomfort, all were "fiercely independent", a phrase used by two participants (elizabeth, ; louisa, ) . as prescribed by aging in place policy, they strove to alter their home environment to live as independently and safely as possible, deploying the strategies and resources available and affordable in their contexts. they practiced problem-focused "assimilative coping", but many also used emotion-focused "accommodative coping" by accepting and being content with what they have (golant, , p. ) . these conscious behaviors exhibit our participants' "competences" (lawton & nahemow, ) and "agency" (wahl et al., ) , another enabler in person-environment interactions. one unexpected finding is their emphasis on being strong-willed "independent women". this self-image, developed over their life course, provides a psychological resource to cope with challenges in later life. clearly, they are "resilient" people (golant, , p. ) who are motivated and confident, with the physical capabilities, mental stamina, and flexibility to find appropriate solutions to the environmental obstacles they face. yet, based on their life stories, we suspect that their resilience is not an innate personality trait so much as an ability to "adapt well" learned and developed over time in relation to others and to their environments ( van kessel, ; wiles, wild, kerse, & allen, b) . we found this learning process to be resilient operating even among very old and frail participants. this supports peace et al.'s ( ) finding that, while frailty and decline of personal competence are related, they are not synonymous. older adults can confront challenges by bringing their life experiences to their person-environmental interactions. despite their limited mobility, many stayed involved in social and volunteer activities, using their skills and sustaining and developing relationships. importantly, our participants did not passively receive care. they also actively provided it to others. this finding overlaps with the concepts of "vitality and agency in frailty" for preserving selfidentity and continued self-development in later life (bjornsdottir, ; latimer, ) . it also highlights the crucial role of opportunities for social participation, meaningful and reciprocal contribution, and relationship building to aging in place. a recent increase in innovative community-based participatory approaches to aging in place, such as the naturally occurred retirement community (norc), for example, includes this reciprocal exchange of support and care by creating resourceful community environments (greenfield, scharlach, lehning, & davitt, ; sixsmith et al., ) . nonetheless, our findings also suggest some disabling factors. the constant "balancing act" (golant, , p. ) person-environment interactions in later life demands was difficult for some, especially for those with severe mobility limitations, multiple comorbidities, few close family members and friends, and low income. also, the quality of our participants' aging in place was influenced by local environments, including the availability of affordable home care services, physical activities, and safe and reliable public transportation (e.g., wheel-trans). most notably, our participants were facing the challenges of pain and balance: falling posed a real threat, as found in previous studies (e.g., bushnik et al., ) . nevertheless, for many participants -especially those living in houses and apartments without transportation and private home care insurance -regular exercise classes, physiotherapy, and fall prevention programs were neither affordable nor accessible. given the proven benefits of interventions for falls and fear of falling (e.g., whipple, hamel, & talley, ) , it is essential to develop strategies to make those programs more available. policies in aging, health, and social services should support greater collaboration between community-based formal and informal care (ryser & halseth, ) . in the current discourse surrounding aging in place, independent living tends to refer to an autonomous lifestyle achieved through the personal efforts of individuals. in reality, however, as our findings show, aging in place for older women with physical limitations inevitably requires a view of "independent living" which promotes reciprocity and interdependence between individuals and their communities, including both formal and informal supports. in other words, as golant ( , p. ) advocated, we need to adopt an "it takes a village" perspective. nevertheless, consistent with previous studies (johnson et al., ; kadowaki, wister, & chappell, ) , publicly supported long-term home care -especially for maintenance and prevention purposes, such as home support services and physiotherapy -was still unavailable for many of our participants. our study adds further contextual evidence to canada's need for the publicly supported long-term home care system many have advocated over the past decade (canadian home care association, ; gilmour, ; kadowaki et al., ; special senate committee on aging, ; turcotte, ) . overall, the findings of our study support the notion of aging in the right place proposed by golant ( ) . they suggest that, despite their tireless individual efforts to be independent in a place of their own, older women can reach a point where the changing balance between personal competence and environmental pressure requires a new strategy to maintain self-identity, what peace et al. ( ) term "option recognition" (p. ). participants who could afford it or were eligible for public subsidy often moved into assisted living to regain control. given the lack of a universal long-term home care system in canada, moving to assisted living helps reduce the heavy burden placed on some older adults and their family members (ryser & halseth, ) . at the same time, our participants' narratives reaffirm that alternative senior residences -such as active adult communities, assisted living, and continuum care retirement communities -are not a readily available or affordable option for many middle-income older canadians (dalmer, ) . finally, the most unexpected finding in our study is the collective silence of older women, the so-called "shadow story" (de medeiros & rubinstein, ) , about their unmet need for more formal and structural support reported in previous studies (e.g., canadian home care association, ; gilmour, ; turcotte, ) . this may be partly because the interviewers were "others" (dorothy, ), making it hard for participants to reveal their true feelings, and partly because respondents wanted to present themselves as role models for their interviewers, who were of their daughter's and granddaughter's generation. complaining and demanding that their needs be met contradicted their core principle of "being independent". finally, adopting the neoliberal rhetoric of being self-reliant and autonomous model citizens, older women may see their growing care need for daily activities as an individual matter that they should take care of themselves, rather than a structural issue connected to the long struggle over public policy. further study is required to clarify these points and investigate how a "sociological imagination," as coined by c. wright mills ( ) , might be used to collectively empower older women and inform public policies alike. this study has several limitations. due to our small number of selfselected participants who are resilient and have positive outlooks, our findings reflect more the experiences of older women who are successfully aging in the right place, despite their physical conditions. the voices of older adults who live with cognitive impairment, depression, and social isolation, or whose lack of resources make them more vulnerable, are missing. furthermore, the data was collected before the covid- pandemic, which has likely altered older women's perceptions and experiences. all these areas are important, and deserve further study. despite these limitations, our research provides a valuable window into experiences of aging in the right place of an understudied groupolder women living on their own with physical challenges in canada. no matter how fiercely and successfully independent older women try to be, framing aging in place as a matter of individual efforts alone is misguided. it is crucial that more structural supports and improved community-based care that is informed by recipients themselves become an integrated part of public policy. the shifting of public perceptions from aging in place to aging in the right place has the potential to foster subjectively-defined aging well among older adults with different needs and resources. we hope these findings will encourage further studies and the political will to make aging in the right place a real option for older adults in canada and far beyond. this study was funded by a grant from the japan society for the promotion of science (# k ). none. rehabilitation therapies for older clients of the ontario home care system: regional variation and client-level predictors of service provision holding on to life': an ethnographic study of living well at home in old age health reports. health-adjusted life ex seniors' housing report -ontario better home care in canada: a national action plan health care in canada, : a focus on seniors and aging being with objects of meaning: cherished possessions and opportunities to maintain aging in place qualitative inquiry and research design: choosing among five approaches a logic of choice: problematizing the documentary reality of canadian aging in place policies narrative gerontology in research and practice shadow stories" in oral interviews: narrative care through careful listening thinking about your future? plan now to age in place -a checklist report on housing needs of seniors transitions to longterm and residential care among older canadians unmet home care needs in canada commentary: irrational exuberance for the aging in place of vulnerable low-income older homeowners the quest for residential normalcy by older adults: relocation but one pathway women's housing challenges in later life: the importance of a gender lens using ecological frameworks to advance a field of research, practice, and policy on aging-in-place initiatives a conceptual framework for examining the promise of the norc program and village models to promote aging in place senior women. women in canada: a gender-based statistical report. catalogue no. - -x. ottawa: statistics canada no place like home: a systematic review of home care for older adults in canada influence of home care on life satisfaction, loneliness, and perceived life stress resisting institutionalization: constructing old age and negotiating home home care and frail older people: relational extension and the art of dwelling ecology and the aging process utilization of formal and informal home care: how do older canadians' experiences vary by care arrangements social work and aging in place: a scoping review of the literature telling stories: the use of personal narratives in the social sciences and history qualitative research: a guide to design and implementation housing-related control beliefs and independence in activities of daily living in very old age option recognition' in later life: variations in ageing in place informal support networks of low-income senior women living alone: evidence from fort st ageing well in the right place: partnership working with older people. working with older people canada's aging population: seizing the opportunity aging and place: clarifying the discourse census in brief no. : living arrangements of seniors statistics canada catalogue no. - -x . ottawa, on: statistics canada the daily. canada's population estimates: age and sex income of individuals by age group, sex and income source, canada, provinces and selected census metropolitan areas at home it"s just so much easier to be yourself': older adults' perceptions of ageing in place living alone in canada. insights on canadian society canadians with unmet homecare needs the ability of older people to overcome adversity: a review of the resilience concept aging well and the environment: toward an integrative model and research agenda for the future fear of falling among community-dwelling older adults: a scoping review to identify effective evidence-based interventions the meaning of "aging in place" to older people resilience from the point of view of older people the sociological imagination we would like to send our heartfelt thanks to all participants in this study for generously sharing their life experiences and insights. our appreciation also goes to the organizations and their staff members, our colleagues and friends, who assisted in our recruitment, and ms. jessica wong and ms. ramesha ali for their assistance in data collection. we extend our acknowledgement to dr. beard and two anonymous reviewers for their encouraging and constructive feedback. key: cord- -e a u authors: marshall, jennifer; kihlström, laura; buro, acadia; chandran, vidya; prieto, concha; stein-elger, rafaella; koeut-futch, keryden; parish, allison; hood, katie title: statewide implementation of virtual perinatal home visiting during covid- date: - - journal: matern child health j doi: . /s - - - sha: doc_id: cord_uid: e a u purpose: this evaluation describes efforts taken by miechv administrators and staff during the pandemic using data collected from miechv staff surveys and nine statewide weekly focus groups. description: the florida maternal, infant and early childhood home visiting (miechv) initiative funds perinatal home visiting for pregnant women and families with infants throughout the state. florida miechv has shown resilience to disasters and times of crises in the past, while generating a culture of adaptation and continuous quality improvement among local implementing agencies. florida miechv responded to the covid- pandemic crisis within the first few days of the first reported case in florida by providing guidance on virtual home visits and working remotely. assessment: findings highlight the role of administrative leadership and communication, staff willingness/morale, logistical considerations, and the needs of enrolled families who face hardships during the pandemic such as job loss, limited supplies, food insecurity, technology limitations, and stress. home visitors support enrolled families by connecting them with resources, providing public health education and delivering evidence-based home visiting curricula virtually. they also recognized the emotional burden surrounding covid- impacts and uncertainties along with achieving work-life balance by caring for their own children. conclusion: this evaluation helped in understanding the impact of the pandemic on this maternal and child health program and fundamentals of transition to virtual home visiting services. virtual home visiting appears to be feasible and provides an essential connection to supports for families who may not otherwise have the means or knowledge to access them. the maternal, infant, and early childhood home visiting (miechv) initiative is funded by the health resources and services administration (hrsa) to all u.s. states and territories to provide perinatal home visiting support to pregnant women and families with infants in high-need communities. florida miechv, operating since , funds local implementing agencies (lias) in high-need communities and four contiguous counties across the state, and served families last year (florida miechv ) . participating communities were identified through a statewide needs assessment, which calculated composite risk based on poverty, parent education, birth outcomes, and other demographic and socioeconomic factors. the grantee for this program is the florida association of healthy start coalitions (fahsc) . fahsc also contracts externally for professional development and an independent evaluation (miech v.healt h.usf.edu). florida miechv, operating three evidence-based home visiting models-nurse family partnership (nfp), parents as teachers (pat), and healthy families america (hfa)-has demonstrated positive outcomes related to benchmark indicators in six areas: maternal and child health, childhood injuries and abuse and neglect, school readiness, domestic violence, family economic selfsufficiency, and coordination of services. florida miechv programs have a history of adapting quickly and collaboratively during times of crisis, including: hurricanes irma, maria, and michael; mass shootings; and immigration policy changes. the programs also collaborate when opportunities emerge, working together across sites for quality improvement initiatives and coordinating with state agencies. the first cases of the -novel coronavirus were reported in december in wuhan, china (du toit ), and the virus quickly spread worldwide. it is believed to have reached the u.s. in january (centers for disease control and prevention [cdc] a; holshue et al. ). the u.s. department of health and human services (dhhs) declared a state of emergency on january , (u.s. department of health and human services [dhhs] a), and the world health organization declared the outbreak a global pandemic on march , (cdc b). the first covid- case in florida was reported in march and at the time of writing exceeds , (florida department of health [fdoh] ). the covid- pandemic is a particularly high threat in vulnerable populations (e.g., pregnant women, families with children, and low-income populations) and communities that lack resources to manage the infection (dashraath et al. ). these groups have unique needs for care during the covid- pandemic (e.g., dunn et al. ; qiao ) , as many parents and caregivers face job loss and children are out of school and childcare (cluver et al. ) . in response to the pandemic, states have taken steps to support modified home visiting operations for miechv (zero to three ). as of may , , hrsa allocated $ million to support telehealth providers during the covid- pandemic through the cares act to address the need for increased training and resources for telemedicine (dhhs b). the florida program had to rapidly adapt services to support enrolled families throughout the covid- crisis. because the program is evidence-based, it adheres to specified guidance around home visiting curricula, participant enrollment, home visit completion/frequency, activities, and documentation. by the second week of march, florida miechv leadership announced plans for transitioning to virtual operations, and by the third week provided written guidance that included: overarching principles; basic cdcinformed guidance on preventing covid- transmission for staff, for their families, and for their clients; considerations for technology, security/confidentiality, and fidelity to home visiting model; guidance for educating families on covid- resources (e.g., cdc and fdoh updates, mental health resources, contacting health care providers for concerns, and preparing supplies, quarantine and childcare); and suggestions for the lia organizations to support their staff with contact information, regular communication, data entry contingency plans, restructuring group activities/events, and staff supervision. in april, hrsa began sending updates regarding miechv grantee deadlines, responsibilities, and parameters for utilization of funds in compliance with federal regulations. this evaluation of florida's efforts was reviewed by the university of south florida institutional review board and determined exempt. evaluation questions included: ( ) how are home visitors/miechv staff doing in this situation (enforced physical distancing and virtual home visits), both personally and professionally?; ( ) how do miechv home visitors/staff perceive that the families are doing?; ( ) how are miechv home visitors/programs supporting enrolled families?; and ( ) what resources and processes are needed to implement virtual perinatal home visiting in florida miechv? the evaluation was conducted using a statewide miechv staff survey and a series of weekly focus groups with program staff, administrators, and supervisors led by the state leadership team. the evaluation team surveyed staff via a secure qualtrics survey link from april -april , with a series of questions on their role (supervisor/administrator, home visitor, or other), county served, extent to which visits were virtual, and open-ended questions corresponding to the evaluation questions above. additionally, the state leadership team held nine weekly focus groups between march and may ; these calls are ongoing. participation in the survey and focus groups/calls was anonymous; staff only provided their role and county served in the survey. the focus groups were facilitated by the statewide miechv project coordinator who prompted three open-ended questions about challenges, best practices/strategies, and logistics related to virtual home visiting. with participant permission, the calls were digitally recorded, transcribed, and transcriptions were reviewed for accuracy. analysis on the obtained data from survey responses and focus group transcripts were conducted using deductive qualitative analysis approach. the open-ended survey responses and call transcripts were first reviewed to create an initial, deductive codebook focusing on three main domains pertinent to the research questions: ( ) miechv workforce well-being ( ) family needs ( ) virtual miechv services (table ) . under each broad domain, several subcodes were identified. this initial deductive codebook was then used to code the qualitative survey data in excel and transcripts in maxqda. focus group data were coded by two research assistants (one phd anthropology candidate, and one masters in public health student) who have - years of experience in qualitative data analysis. to ensure inter-rater reliability (dependability in the coding process), coding for the transcripts was done twice by two independent coders on two of the transcripts. the results from this coding process were then compared ( % agreement). following initial coding, the codebook was refined and discrepancies were reconciled. once all transcripts were coded, the results were summarized, based on content analysis and frequency in the coded transcript segments and surveys. in the first two weeks of april, surveys from supervisors/administrators, home visitors, and others were collected. according to the survey respondents, all but two programs had fully transitioned to virtual visits. by the maintaining a sense of confidence and optimism was also mentioned as an important facilitator during focus groups (n = ) and on the survey ( of ). staff described how the positive response from families fostered an optimistic approach. it's just been amazing that everyone has just adapted to this. i'm just so proud of the whole team and all of miechv, honestly, because it sounds like everybody's doing the exact same thing. it just makes me proud to be a part of this. -administrator/supervisor. support from other home visitors and agencies was also mentioned as a facilitator in the weekly focus groups (n = ). regular virtual check-ins with staff and creative ways to boost staff morale contributed to feelings of support. one way i've found to motivate my team is by having our celebration and kudos each time we meet. we also do some unique ways of i want to say affirming them. so, we have rounds of applause, roller coaster claps, and firecracker claps which we get from early childhood classrooms. they tend to like seeing that happen, so we find unique ways to motivate each other and make sure that we keep a positive spin on the current situation. so, i think that that does help. -administrator/supervisor. barriers challenges with virtual interaction with families was the most commonly mentioned barrier to virtual home visiting (n = ), including being unable to observe parentchild relationship due to lack of video, difficulty familiarizing clients to virtual software, and lack of efficient internet service. we're just trying to transition our families into this new form of service division, being that we don't really have a lot of families who have the capacity to do, or the capability to do the virtual visit by zoom, so we're having to rely on the telecommunication form of visit to serve this provision. so, just trying to navigate that and get our families comfortable with the whole process, but also figuring out how to meet the requirements that our models are wanting at the same time. -administrator/supervisor. other barriers to transitioning to virtual home visiting included concern regarding benchmark expectations and anxiety and uncertainty due to the pandemic. we know performance measures are unfortunately going to take a dip in many cases… and so we're hoping that that will be loosened up a little bit and that there will be some understanding that everybody is doing the best they can. -administrator/supervisor. i mean, i'll be honest, our staff is feeling the stress of this pandemic that we're all experiencing. there's reporting not sleeping well, and having nightmares, and things like that. …some of my staff live alone, some have pets and some don't, so i worry about them the most. we talk about it and then we keep going. -administrator/supervisor. when asked how families are doing, staff reported various hardships due to the pandemic, including financial trouble, lack of parenting support, lack of access to mental health services, and transportation and housing challenges. the most common need among families was financial assistance due to unemployment; this was mentioned by almost % of staff members ( of ). home visitors reported that many families have household members who were laid off as a result of the pandemic, causing families to struggle with covering necessities, such as rent and food. staff also reported that many families are ineligible for unemployment benefits. most of our needs are for rental assistance because people were laid off due to the virus and are not able to pay their rent. these are paycheck to paycheck. sometimes they don't even make it paycheck to paycheck. -supervisor. parenting support in the surveys, staff described that families need parenting support, including childcare, internet for their children's schoolwork, and various items, including food (e.g. wic-eligible food items limited), diapers, and cleaning supplies. focus groups corroborated that families needed diapers, formula, wipes, or toiletries (n = ) and food (n = ). most miechv families that i have been working with are in need of basic supplies such as diapers, wipes, internet for children's school work. they also need help applying for unemployment as we have tried every method without any luck. -home visitor. mental health issues, such as anxiety and depression, were mentioned in the focus groups (n = ). one coordinator reported that, while access to mental health services was already a challenge prior the pandemic, it was now "nearly impossible." another reported that many mental health providers were not "set up to do telehealth." intimate partner violence during the pandemic is a severe issue as well, as is reported here by one coordinator. it was a woman that came on -it wasn't a home visit, but it was a video conference. the home visitor noticed that the woman had essentially marks on her neck. this client was alone, and the home visitor asked just how she's been doing and asked about, 'oh, what happened?' the woman went on to talk about the abusive relationship that she was in. some of us might have just frozen in that moment when you see that and not really being sure what to do, but this home visitor, to take the opportunity to make sure she was alone but then to ask her about it. … a client could have put a scarf around her neck, she could have put make up on to cover the marks, but she didn't. we think that she probably wanted the home visitor to ask her about it. it's such an opportunity for the relationships that the home visitors have with the clients to really be there for them during what is probably a more difficult time right now for women that are living in situations like that." -supervisor. transportation challenges staff also mentioned that families experienced transportation and housing challenges challenges due to lack of accessibility for various reasons. some are seeing little change because they have no transportation and live in rural areas so they were limited on socializing already. some have been laid off from low wage jobs with no pay. some are still working and nervous for their families and what they may be bringing home to them. -home visitor. our clients continue to worry. they've voiced concerns about the ability to pay rent, lost wages, and the lack of affordable housing which is nothing new to all of us. -supervisor. home visitor support to families despite the sudden and unexpected transition to virtual home visiting, most home visitors reported continuing their services (communication, support, education, referrals) albeit through different means. resources and supplies staff reported using time during virtual visits to share resources with families regarding food banks, unemployment benefits, and food stamps. most of our needs are for rental assistance because people were laid off due to the virus and are not able to pay their rent. these are paycheck to paycheck. sometimes they don't even make it paycheck to paycheck. -administrator/supervisor. our families, like a lot of your families out there, are in service industries that rely solely on tips. -administrator/supervisor. several coordinators mentioned collaborating with local food banks to provide essential items to families. the nurses are still going out and dropping off dia-pers…wipes… whatever the moms may need. i was very skeptical when this whole thing started [virtual home visits] …but they have been amazing. they picked up the ball, the clients have been so thank-ful… i'm just so proud of the whole team and all of miechv, honestly, because it sounds like everybody's doing the exact same thing… makes me proud to be a part of this. -administrator/supervisor. we connected with [food bank] and my program assis-tant… made us all masks. we went out and dropped food at people's homes and they were so, so happy about that. they were very relieved. a lot of our foodinsecure families who can't get out were pleased… the first week we had about families. -administrator/ supervisor. moreover, home visitors serve as public health educators by providing information on covid- safety from the cdc and department of health and support regarding logistics of their virtual visits based on the families' preferences and technological resources. additionally, home visitors consider 'checking in' with parents a way to promote self-care. making sure that if they can't go outside to walk, they can find a craft or something like that, anything thatcooking, whatever it maybe to give them something. i don't know. i just ask them about what they're doing to take care of themselves. -home visitor. when asked what resources and processes would be most helpful for them right now, tips and activities for conducting virtual visits (n = ), easy access to miechv documents (n = ), and self-care activities (n = ). survey responses reflected the same needs, in addition to assistance for families, including financial assistance for families, and equipment for videoconferencing. i am having a hard time with reaching some of my families who normally would meet regularly with home visits. a few will not answer the phone or return calls and won't reply back to text messages since this transition. so some suggestions on keeping them engaged through this time of uncertainty would be helpful. -home visitor. despite the challenges faced by miechv staff and administrators during the covid- pandemic, miechv staff reported that they were managing effectively and maintaining a sense of confidence and optimism, aided by family engagement and support from miechv and other agencies. participants reported that families are experiencing unique needs due to the pandemic, including financial assistance, parenting support, accessible mental health services, transportation, and housing. miechv home visitors have been providing a range of services for families, including resources and supplies, education, and support. resources requested by miechv staff include tips and activities for conducting virtual visits, easy access to miechv documents, and self-care activities. our findings suggest that the program continues to serve florida families virtually and to address their needs by providing wraparound, individualized support (alitz et al. ) . virtual platforms allow continuation of communication with the families to assure needed resources, including supplies, health information, mental health services, and referral to other programs, are provided. miechv staff and administrators also continue to communicate among themselves to obtain the support and resources needed to successfully serve miechv families. home visitor support is the bedrock of quality services (alitz et al. ) , and our results indicate that miechv staff feel supported but require additional resources to accommodate virtual home visiting, including videoconference equipment and at-home access to miechv documents. meanwhile, the nation hopes for an end to the pandemic and braces for the anticipated and unanticipated long-term impacts of covid- on the economy, healthcare system, and society. vulnerable populations, including pregnant women and children, individuals with low income, and those living in disenfranchised communities will bear the brunt of these impacts. as the respondents in this evaluation noted, it would be helpful to reduce all barriers to providing financial assistance and supplies to help families with their most basic needs before desperation sets in. the federal administration, state agencies, and local programs provide financial relief and benefits; home visitors are an essential connection, and sometimes a lifeline, to those supports for families who may not otherwise have the means or knowledge to access them. health disparities could continue to exacerbate among this vulnerable population making continuation of support and guidance for these home visiting programs pivotal. as miechv programs across the state and nation consider the possibility of continued virtual supports as an augmentation to in-person home visiting or in a hybrid format, findings from this research will guide future efforts to support miechv staff and families. work-related stressors among miechv home visitors: a qualitative study situation summary parenting in a time of covid- coronavirus disease (covid- ) pandemic and pregnancy outbreak of a novel coronavirus feeding low-income children during the covid- pandemic florida's covid- data and map dashboard demographics and services utilization report first case of novel coronavirus in the united states widening the scope of social support: the florida maternal, infant, and early childhood home visiting program what are the risks of covid- infection in pregnant women? determination that a public health emergency exists hhs awards $ million to support telehealth providers during the covid- pandemic key: cord- -hjgf ay authors: griffith, matthew f.; levy, cari r.; parikh, toral j.; stevens-lapsley, jennifer e.; eber, leslie b.; palat, sing-i t.; gozalo, pedro l.; teno, joan m. title: nursing home residents face severe functional limitation or death after hospitalization for pneumonia date: - - journal: j am med dir assoc doi: . /j.jamda. . . sha: doc_id: cord_uid: hjgf ay objectives: pneumonia is a common cause of hospitalization for nursing home residents and has increased as a cause for hospitalization during the covid- pandemic. risks of hospitalization, including significant functional decline, are important considerations when deciding whether to treat a resident in the nursing home or transfer to a hospital. little is known about postdischarge functional status, relative to baseline, of nursing home residents hospitalized for pneumonia. we sought to determine the risk of severe functional limitation or death for nursing home residents following hospitalization for treatment of pneumonia. design: retrospective cohort study. setting and participants: participants included medicare enrollees aged ≥ years, hospitalized from a nursing home in the united states between and for pneumonia. methods: activities of daily living (adl), patient sociodemographics, and comorbidities were obtained from the minimum data set (mds), an assessment tool completed for all nursing home residents. mds assessments from prior to and following hospitalization were compared to assess for functional decline. following hospital discharge, all patients were evaluated for a composite outcome of severe disability (≥ adl limitations) following hospitalization or death prior to completion of a postdischarge mds. results: in and , a total of , nursing home residents were hospitalized for pneumonia, of whom . % ( , ) experienced the composite outcome of severe disability or death following hospitalization for pneumonia. although we found that prehospitalization functional and cognitive status were associated with developing the composite outcome, % of residents with no prehospitalization adl limitation, and % with no cognitive limitation experienced the outcome. conclusions and implications: hospitalization for treatment of pneumonia is associated with significant risk of functional decline and death among nursing home residents, even those with minimal deficits prior to hospitalization. nursing homes need to prepare for these outcomes in both advance care planning and in rehabilitation efforts. pneumonia is a common cause of illness among nursing home residents, with approximately case occurring for every days of nursing home care provided, prior to the current covid- global pandemic. pneumonia was also the leading cause of hospitalization and death among nursing home residents, accounting for % of hospitalizations and % to % of deaths prior to the current pandemic. e the current global covid- pandemic has disproportionately affected american nursing home residents, with at least in nursing home residents suffering a confirmed sars-cov- infection, and has led to an increase in hospitalizations for pneumonia. approximately in nursing home residents with covid- has been hospitalized, primarily because of pneumonia symptoms (cough, fever, and shortness of breath) and more than in ( %) has died. , advance care planning for episodes of pneumonia was already challenging for residents and facilities; however, the uncertainty surrounding short and long-term effects of hospitalization for pneumonia during the current pandemic has amplified the difficulty of advance care planning. at the same time, centers for medicare & medicaid services (cms) considers pneumonia the leading cause of potentially avoidable hospitalizations among nursing home residents and penalizes nursing homes and hospitals for avoidable pneumonia readmissions. the conflicting recommendation by triage tools and health care organizations makes it challenging for nursing home residents, their caregivers, and providers to make informed decisions about the most appropriate treatment decision. to reach informed decisions around hospitalization for pneumonia (including covid- ) , residents, families, and caregivers must understand patient preferences, potential benefits, and potential harms. functional decline is a potential harm of inpatient pneumonia care that must be factored into shared decision making regarding hospitalization for pneumonia. prior studies have found that functional decline is a potential outcome of hospitalization, particularly among patients with cognitive impairment. , loss of a single activities of daily living (adl) is associated with a decline in health-related quality of life and an increased likelihood of requiring long-term nursing home care. among patients with mild to moderate functional limitation at baseline, loss of adl could have a profound effect on a patient's health-related quality of life and lead to the perception that such a loss would be "worse than death." , although patients and their surrogates may be familiar with the risks of hospitalization for exacerbations of chronic diseases that they have suffered for many years (eg, chronic obstructive pulmonary disease or congestive heart failure), providing them with an estimate of functional outcomes following hospitalization for an unplanned acute illness like pneumonia allows for shared decision making through scenario planning. , every nursing home resident whose care is paid for by medicare, medicaid, or the veterans health administration is evaluated using the minimum data set (mds), a federally mandated, validated instrument that assesses health conditions, disease diagnoses, treatments, and functional and cognitive status. mds evaluations are completed on admission to the nursing home and quarterly thereafter, as well as at the time of acute changes in clinical status and readmission from a hospital. information from mds assessments submitted to cms. the mds assessment includes an evaluation of adl independence available prior to and following hospitalization to quantify functional decline in the perihospitalization period for nursing home residents. this study was designed to assist nursing home residents, surrogates, providers, and facilities conduct appropriate scenario planning to prepare for unplanned acute care hospitalizations, by describing functional decline among nursing home residents hospitalized for pneumonia and evaluating patient and hospitalization characteristics associated with severe functional decline and death. these findings will aid patients, families, and caregivers in advance care planning and decisions regarding hospitalization during the current pandemic. this study evaluated cms data for patients hospitalized with pneumonia identified using medicare part a claims submitted between january , , and discharge by october , . this was a retrospective cohort analysis of nursing home residents, receiving either post-acute or long-term care, hospitalized for pneumonia during their nursing home stay. after initially identifying all fee-for-service medicare beneficiaries with a claim submitted for hospitalization during the study period, patients were identified as nursing home residents based on the completion of a mds assessment during the days prior to the index hospital admission. hospitalized nursing home residents were included if they had ( ) a primary discharge diagnosis of pneumonia or a primary diagnosis of septicemia and secondary diagnosis of pneumonia associated with the hospitalization, ( ) age years; and ( ) resided in united states (excluding puerto rico). we included patients with a primary diagnosis of sepsis and secondary diagnosis of pneumonia as there has been a substantial increase in coding patients with clinical signs and symptoms of pneumonia as having sepsis over the years prior to the study. nursing home residents were excluded if they were ( ) discharged to another hospital following the index admission, as we sought to collect information for only episode of inpatient care per patient, or ( ) lacked an mds assessment submitted within days following the index admission. the first claim submitted during the study period was considered the index hospitalization. this study was reviewed and approved by our institutional review board, who waived the requirement for patient consent. the primary outcome was a composite of severe functional limitation or death following hospitalization. severe functional limitation was defined as or more adl impairments documented in the mds-adl long form scale completed posthospitalization. adl assessed bed mobility, transfer, locomotion, dressing, eating, toilet use, and personal hygiene. most individuals with or more adl limitations on this scale are functionally bed bound; therefore, we set this cutoff for our definition of severe functional limitation. failure to perform an adl without assistance was considered an adl deficiency. death was defined as dying during the hospitalization or within days of discharge. in order to identify whether hypothesized patient characteristics and comorbidities would be associated with functional decline following hospitalization, specific comorbidities and patient characteristics of interest were included in an a priori model. sociodemographic characteristics including age, race and ethnicity, sex, and state of residence were identified from the medicare beneficiary enrollment file. patient cognitive status, baseline adl limitations, active medical comorbidities contributing to the risk of functional limitation (dementia, cancer, aphasia, congestive heart failure, diabetes, stroke, paraplegia, hip fracture, renal failure, schizophrenia, and chronic lung disease) e and significant patient conditions, including weight loss (loss of % or more in last month or % or more in last months), difficulty eating, and dependency on a feeding tube, were identified from the mds completed days or less before the index hospitalization. the model included receipt of invasive mechanical ventilation using procedure codes (current procedural terminology [cpt]). bivariate analyses were performed to describe differences in baseline characteristics and characteristics of hospitalization between patients who did and did not experience the outcome. a multivariable logistic regression model was created to evaluate the association between covariates defined in our a priori model and our composite outcome of severe disability and death, adjusted for receipt of mechanical ventilation. analyses allowed for robust variance estimates to account for clustering of persons within hospitals. all data analysis was conducted in stata, version . (stata corp, college station, tx)). between january , , and october , , a total of , medicare beneficiaries were hospitalized for pneumonia with an mds completed within days prior to hospitalization. among those patients, , ( . %) did not have an mds completed within days following discharge and did not die during that period, so they were excluded. among excluded patients, , ( . %) were discharged to home, an assisted living facility, or an adult family home, ( . %) were discharged to hospice care, and ( . %) were readmitted to the hospital before their next mds assessment. the remaining , ( . %) patients excluded from the cohort lacked an mds assessment submitted within days but were discharged from the hospital alive and did not go to any of the previously listed locations. likely they were discharged to a nursing home but an mds was not submitted in a timely fashion. the resulting cohort consisted of , patients. among patients in this cohort, . % (n ¼ , ) were female, . % white (n ¼ , ), and . % black (n ¼ , ), and had a mean age of . years (standard deviation . ) (table ) . overall, the cohort had a high prevalence of cognitive impairment (cognitive performance score > , . %, n ¼ , ), and . % (n ¼ , ) had a feeding tube. nearly half of patients ( . %, n ¼ , ) had severe disability before hospitalization (table ) . among the members of the cohort, , ( . %) died during or within days of hospitalization and , ( . %) had severe disability following admission, for a total of , ( . %) with the primary composite outcome. among patients without severe disability prior to hospitalization (< adl limitations, n ¼ , ), . % (n ¼ , ) experienced the primary outcome of severe disability or death. the majority of patients with no prehospitalization adl limitations ( . %) experienced the composite outcome, as did the majority of patients with all levels of prehospitalization functional limitation. among patients with severe disability prior to hospitalization, . % (n ¼ , ) experienced the primary outcome and . % (n ¼ , ) of these patients died during or within days of hospitalization. severe functional limitation and dementia prior to hospitalization were associated with severe functional limitation or death following hospitalization for pneumonia (table ) . adjusting for prehospitalization functional and cognitive status, male gender, race (black non-hispanic, asian, and hispanic), certain pre-existing medical comorbidities [congestive heart failure (adjusted odds ratio . , % confidence interval . - . patients with pre-existing feeding tubes were not at increased risk of the outcome ( . , . - . ). patients who received mechanical ventilation during the hospitalization were at increased risk of the outcome ( . , . - . ). being admitted from a stay in long-term care (admissions not following a prior hospitalization) was associated with increased risk of the primary outcome ( . , . - . ). in the largest study to date of functional decline following hospitalization for nursing home residents, we found that most residents hospitalized for pneumonia developed severe disability or died. notably, among those with no prehospitalization functional limitation, the majority developed significant disability or experienced death by days following hospitalization. individuals with severe cognitive, physical or neurologic dysfunction prior to hospitalization were at the greatest risk of severe disability or death. these findings suggest that, during the current pandemic, nursing homes must plan for the influx of a high proportion of nursing home residents returning with severe functional limitation requiring a higher level of care. additionally, during this time, when admitting new residents or readmitting former residents, providers should discuss likely outcomes following hospitalization for pneumonia to inform advance care planning. our findings build on prior studies demonstrating persistent functional decline following hospitalization for infectious and noninfectious acute care admissions among community-dwelling older adults, particularly for those with cognitive and functional impairment assessed on admission. , , e these studies have demonstrated that almost every group of older adults is at risk for a perceptible decline in function following hospitalization that can last for months after discharge or become permanent. however, because community dwelling adults do not undergo detailed functional assessments as performed as part of the mds, these studies relied on patient or caregiver report of functional status at the time of hospitalization or most recent primary care assessment of functional status. use of mds data ensured that we had an accurate assessment of function as close to the time of admission as possible, and a similarly accurate assessment following hospitalization. the few prior studies of functional decline among nursing home patients following pneumonia have relied on assessments performed up to months prior to admission or performed assessments of functional status at the time of discharge, which may have over-or underestimated the severity of function in the days to weeks following discharge. , this study is the first to use mds data to characterize functional decline following hospitalization for pneumonia for the entire spectrum of patients in nursing homes, including patients with few functional and cognitive limitations receiving post-acute care and those with more severe baseline limitations residing in long-term care. engaging nursing home residents and their families in advance care planning reduces bothersome or burdensome care received at the end of life and improves family member and caregiver satisfaction with care at the end of life. e however, approximately of nursing home residents fail to have any advance care plan documented. , a major barrier to advance care planning is choosing the correct time to initiate it. discussions occurring too early may not accurately reflect patient preferences over time and discussions that occur too late fail to protect patients from receiving care that was not consistent with their wishes. when informed about the high likelihood of a poor outcome, nursing home residents, their families, and their providers are more likely to engage in advance care planning. our study demonstrates that nursing home admission, particularly with individuals suffering from cognitive and physical limitations who are admitted for long-term care, is likely the right time to initiate advance care planning around the decision to hospitalize for covid or other pneumonias, as we found that residents are more likely to experience functional decline or death at days following hospitalization than individuals diagnosed with metastatic nonesmall cell lung cancer. presently, only % to % of nursing home residents have documented do-not-hospitalize orders, with the proportion ranging from % among those with mild cognitive impairment to % to % among those with severe impairment. , e we anticipate that once aware of how poor prognosis is after hospitalization, nursing home residents, their families, and their providersdwho are already concerned about visitation limitations once hospitalized for coviddwill be more likely to engage in advance care planning and the decision not to hospitalize, rather than delay these discussions. do-not-hospitalize orders can be effective in preventing hospitalization and burdensome treatment for covid or other causes of pneumonia, particularly given the stresses of relocation to the hospital and the limited contact family members and caregivers may have with their loved one once hospitalized; however, many patients and families change their minds during episodes of acute illness and agree to hospitalization regardless of documented preferences. , e we believe that, in many cases, this is the result of a lack of appropriate scenario planning between patients, their families or caregivers, and nursing home providers. as our findings suggest that the risk of severe functional limitation and death varies among patient populations, there are specific populations of patients that are at greater risk for severe functional limitation and death following hospitalization for pneumonia, suggesting that scenario planning during advance care planning conversations could include discussion of these risk factors when making decisions about covid hospitalization and do-nothospitalize orders. there are limitations to this study. first, all patients in our study were hospitalized for pneumonia. most nursing home residents who develop pneumonia (w %) are treated in their facility rather than in the hospital. , , despite this, septicemia and pneumonia remain the most common reasons for hospitalization of nursing home residents. we were unable to reliably identify individuals treated for pneumonia in the nursing home; however, prior observational studies have demonstrated that individuals hospitalized for pneumonia are no more likely to survive than those treated in facilities and likely experience a reduction in quality of life after hospitalization. , additionally, fewer than in residents with critical illness due to pneumonia are hospitalized, suggesting that our cohort of patients may not have had more severe disease than those treated in facilities. therefore, it is plausible that we would not find a difference in mortality between the cohort of patients included in this study and those who were treated in the facility. second, few if any individuals were hospitalized for viral pneumonia due to coronaviruses such as covid- , sars, or mers. despite this, we can generalize that the severity of disease and prognosis among those included in our study was similar to those hospitalized with covid pneumonia, as we found an overall mortality of %, higher than the overall mortality for nursing home residents with covid ( %). at this time, there are no estimates of inpatient mortality for nursing home residents with covid to provide a direct comparison. third, we may not have captured all hospitalizations during which pneumonia was treated, as we only looked for individuals with a primary diagnosis of pneumonia or septicemia. patients with hospital-acquired pneumonia or ventilator-associated pneumonia likely were not included in our study; however, our primary interest was to identify patients who would benefit from scenario planning in the event of pneumonia and not to identify those who acquired pneumonia during a hospital transfer for another indication (eg, stroke, myocardial infarction, or hip fracture). because of the high prevalence of comorbid medical conditions, functional limitations, and dementia, nursing home residents are at risk for severe complications resulting from covid- . therefore, it is crucial to discuss possible outcomes of seemingly routine care with patients and their families well in advance so that appropriate decisions can be made in times of acute illness. the results of this study should inform patient and family decisions regarding hospitalization for covid- and other causes of pneumonia at the time of admission to the nursing home as well as inform planning for a high proportion of hospitalized patients returning with new or significantly worsened functional limitations. further research evaluating severity and duration of decline caused by covid- erelated pneumonia from other etiologies is warranted as there are additional comorbidities associated with covid- such as thrombosis and myocarditis that may exacerbate functional loss. , additionally the social isolation resulting from covid-related closures of nursing homes to outside visitors, leading to functional and cognitive decline among individuals without acute illnesses, warrants further study as well. pneumonia in residents of long-term care facilities: epidemiology, etiology, management, and prevention potentially avoidable hospitalizations for elderly long-stay residents in nursing homes potentially avoidable hospitalizations of dually eligible medicare and medicaid beneficiaries from nursing facility and home-and community-based services waiver programs hospital transfers of nursing home residents with advanced dementia frequency and pattern of emergency department visits by long-term care residentsda population-based study causes of death in elderly nursing home residents autopsies and death certificates in the chronic care setting division of nursing homes/quality safety and oversight group/center for clinical standards and quality special-programs-initiatives-covid- -nursing-home/covid- -nursing-home-dataset/s uc- wxp characteristics associated with hospitalization among patients with covid- dmetropolitan atlanta, georgia, marcheapril initial and repeated point prevalence surveys to inform sars-cov- infection prevention in skilled nursing facilitiesddetroit medicare-medicaid eligible beneficiaries and potentially avoidable hospitalizations shared decision makingdpinnacle of patientcentered care physical function and disability after acute care and critical illness hospitalizations in a prospective cohort of older adults elderly patients with cognitive impairment have a high risk for functional decline during hospitalization: the gifa study the onset of adl difficulties and changes in healthrelated quality of life states worse than death among hospitalized patients with serious illnesses measuring preferences for health states worse than death intervention thresholds: a conceptual frame for advance care planning choices exploring the utility of the vignette technique in promoting advance care planning discussions with cancer patients and caregivers making the investment count: revision of the minimum data set for nursing homes, mds . comparison of trends in sepsis incidence and coding using administrative claims versus objective clinical data measuring change in activities of daily living in nursing home residents with moderate to severe cognitive impairment scaling adls within the mds cognition moderates the relationship between facility characteristics, personal impairments, and nursing home residents' activities of daily living dementia is the major cause of functional dependence in the elderly: -year follow-up data from a populationbased study functional limitation and disability associated with congestive heart failure long-term cognitive impairment and functional disability among survivors of severe sepsis the role of intervening illnesses and injuries in prolonging the disabling process the relationship between intervening hospitalizations and transitions between frailty states change in disability after hospitalization or restricted activity in older persons recovery of activities of daily living in older adults after hospitalization for acute medical illness trajectories of disability among older persons before and after a hospitalization leading to a skilled nursing facility admission adverse effects of pneumonia on physical functioning in nursing home residents: results from the incur study changes in physical function after hospitalization in patients with nursing and healthcare-associated pneumonia end-of-life transitions among nursing home residents with cognitive issues satisfaction with end-of-life care for nursing home residents with advanced dementia improving the end-of-life for people with dementia living in a care home: an intervention study systematic implementation of an advance directive program in nursing homes: a randomized controlled trial are hospital/ed transfers less likely among nursing home residents with do-not-hospitalize orders? advance directives among nursing home residents with mild, moderate, and advanced dementia strategic targeting of advance care planning interventions: the goldilocks phenomenon improving end-of-life outcomes in nursing homes by targeting residents at high-risk of mortality for palliative care: program description and evaluation survival by histologic subtype in stage iv nonsmall cell lung cancer based on data from the surveillance, epidemiology and end results program racial differences in hospitalizations of dying medicare-medicaid dually eligible nursing home residents the cost-effectiveness of the decision to hospitalize nursing home residents with advanced dementia advance directives in nursing home residents aged > or ¼ years: united states interventions associated with the management of suspected infections in advanced dementia changes in care goals and treatment orders around the occurrence of health problems and hospital transfers in dementia: a prospective study call the family instead of calling the ambulance do-not-hospitalize orders for individuals with advanced dementia: healthcare proxies' perspectives effects of nursing home ownership type and resident payer source on hospitalization for suspected pneumonia a multifaceted intervention to implement guidelines did not affect hospitalization rates for nursing home-acquired pneumonia transitions between nursing homes and hospitals in the elderly population does hospitalization impact survival after lower respiratory infection in nursing home residents? pneumonia management in nursing homes: findings from a cms demonstration project thrombosis in hospitalized patients with covid- in a new york city health system clinical predictors of mortality due to covid- based on an analysis of data of patients from wuhan, china key: cord- -jzkh rgm authors: chadborn, neil h.; devi, reena; hinsliff-smith, kathryn; banerjee, jay; gordon, adam l. title: quality improvement in long-term care settings: a scoping review of effective strategies used in care homes date: - - journal: eur geriatr med doi: . /s - - -w sha: doc_id: cord_uid: jzkh rgm purpose: we conducted a scoping review of quality improvement in care homes. we aimed to identify participating occupational groups and methods for evaluation. secondly, we aimed to describe resident-level interventions and which outcomes were measured. methods: following extended prisma guideline for scoping reviews, we conducted systematic searches of medline, cinahl, psychinfo, and assia ( – ). furthermore, we searched systematic reviews databases including cochrane library and jbi, and the grey literature database, greylit. four co-authors contributed to selection and data extraction. results: sixty five studies were included, of which had multiple publications ( articles overall). a range of quality improvement strategies were implemented, including audit feedback and quality improvement collaboratives. methods consisted of controlled trials, quantitative time series and qualitative interview and observational studies. process evaluations, involving staff of various occupational groups, described experiences and implementation measures. many studies measured resident-level outputs and health outcomes. studies reported improvements to a clinical measure; however, four of these articles were of low quality. larger randomised controlled studies did not show statistically significant benefits to resident health outcomes. conclusion: in care homes, quality improvement has been applied with several different strategies, being evaluated by a variety of measures. in terms of measuring benefits to residents, process outputs and health outcomes have been reported. there was no pattern of which quality improvement strategy was used for which clinical problem. further development of reporting of quality improvement projects and outcomes could facilitate implementation. electronic supplementary material: the online version of this article ( . /s - - -w) contains supplementary material, which is available to authorized users. , people live in uk care homes for older people [ ] . care homes is the generic term for long-term care facilities including both residential homes and nursing homes. in england there are nursing homes and , residential homes. in both settings, the bulk of care is provided by care workers, but nursing homes have at least one resident nurse on site at all times. for residential homes, nursing care is provided through in-reach by the national health service (nhs) [ , ] . all uk care homes, even residential homes, meet the international definition of nursing home [ ] . both types of care homes look after people with advanced frailty, % have dementia and all have significant functional dependency. multimorbidity and polypharmacy are common [ ] . the average life expectancy for nursing home residents is year and for those in a residential home is years [ ] . there is considerable variation in how care delivery is structured in uk care homes and this leads to variability in the quality of care [ ] . clinical governance is complex and negotiated, with care home providers responsible for routine care provision, whilst the nhs, particularly general practitioners, are accountable for medical care provided. this can lead to confusion and uncertainty about who has responsibility for some aspects of care [ ] . only recently, during the covid- pandemic, has a "clinical lead role" been established for a health-care professional to support care homes-however, this is loosely specified and falls someway short of the rigid lines of accountability seen with medical directors and elderly care physicians for nursing homes in the usa and netherlands, respectively [ ] . there is increasing recognition of the interdependence of the care home sector and the much smaller acute hospital bed base [ ] . these observations, coupled to increased emphasis on integration of health and social care by central government [ ] , have led to a number of initiatives to improve quality of care in care homes [ ] [ ] [ ] . however, the extent and level of development of quality improvement (qi) in care homes has not been well described. care homes differ from hospitals in terms of structure, function, client and staff groups. for this reason, principles of quality improvement (qi) which are well established in hospitals will need at least adaptation to work within the care home setting [ ] . meanwhile, there is sufficient similarity between care homes in different countries [ , ] , to mean that principles of qi that work in institutional longterm care homes may be similar between nations. this review aimed to provide an overview of quality improvement projects in care homes, to establish the current extent of internationally reported qi projects in care homes, describe the strategies used, the occupational groups involved, and the outcomes reported. we defined a qi intervention, based on a definition from the us agency for healthcare research and quality as "a change process in health care systems, services, or suppliers for the purpose of increasing the likelihood of optimal clinical quality of care, measured by positive health outcomes for individuals and populations" (p [ ] ). these were applied in the medline database is summarised in appendix . databases were searched from the year up until . the start date was chosen because of a previous mapping review which showed very little care home research published prior to this date [ ] and because of the recency with which qi has become a focus of interest in care homes. inclusion criteria were that articles had to describe work undertaken in care homes for older people ( years and older) and to describe qi as change management, rather than describing a method for gaining new knowledge about the resident-level intervention itself (i.e. a research protocol). articles describing specific quality improvement strategies, such as quality improvement collaboratives (qics) [ ] , or plan-do-study-act (pdsa) cycles [ ] were included. articles describing end-of-life care in care homes were included. articles were excluded where they focused on projects for temporary residents of care homes, such as those receiving respite and intermediate care, because these are paid for and organised differently from long-term care. projects focusing on improvement of hospital admission and discharge pathways, on care homes for children, on those with learning disabilities, or on hospices were excluded. also excluded were research studies where the focus was on knowledge generation about the clinical intervention itself; where the intervention was tightly specified and protocolised, as these would not shed light on the process of implementing the intervention within local contexts and involving staff teams. title and abstract screen was conducted by the first reviewer (nc) and articles were divided randomly between three second reviewers (rd, khs, ag). selection on the basis of full article and also data extraction were conducted by a second reviewer in conjunction with the first reviewer (nc), where disagreements were resolved by discussion, until consensus was reached. an audit trail was maintained as authors independently and sequentially conducted initial data extraction for all sources. testing was conducted to ensure agreement and testing of the extraction form and cross-checking of data occurred throughout the process with two members of the team. to adopt a consistent approach, we described data on qi strategies (structured approaches to change management) separately from the resident-facing interventions which they sought to implement. this enabled us to understand both the range of organisational approaches adopted and the breadth of changes to resident care described. data extraction forms were developed (see appendix ) to collate, firstly, the following information about the quality improvement strategy (name of the qi strategy, number of staff, occupational groups involved, number of participating care homes, any control of comparator, and which process or outcome measures were reported), and, secondly, the resident-level intervention (number of participants, intervention descriptor, any control or comparator, outcome measures and results). quality appraisal was not a selection criterion because the scoping review aimed to report on the breadth of literature. instead, methodological weaknesses were captured and discussed. a descriptive synthesis will be performed on the extracted data; firstly, data evaluating the qi strategy (change management) will be synthesised, that is data at staff, team or organisational level. secondly, data reporting impacts or outcomes at resident level will be synthesised. this report has followed the guidance on reporting scoping reviews: the extended prisma guideline as described in appendix [ ] . one thousand and sixty-fifth were retrieved from academic bibliographic databases and a further from grey literature. a prisma diagram summarising de-duplication and screening is shown in fig. . articles were included in the review, with only two articles being grey literature (a list of excluded articles is available on request to the authors). six studies have multiple articles, so studies are reported [ , , . the publication rate increased over each complete -year period included in the review. for example, articles were published during the - period, compared with articles between -and . the majority of articles came from the usa (n = ), with smaller contributions from canada (n = ), uk (n = ), australia (n = ), the netherlands (n = ) and other european countries. the majority of papers (n = ) described or evaluated a single quality improvement project. most studies (n = ) reported single arm intervention studies with comparison of quantitative data captured about clinical outcomes before and after the quality improvement project was carried out . qualitative studies were the second largest group (n = ) [ , , , , [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] , including the following methods: participatory action research (n = ) [ , ] , observational (n = ) [ , [ ] [ ] [ ] , interviews (n = ) [ ] , questionnaire (n = ) [ ] . eleven studies were interventional studies with a comparator arm, with quantitative outcome measures, including; randomised controlled trials, all of which were cluster randomised at care home level [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] . four were non-randomised controlled trials [ ] [ ] [ ] [ ] . five articles drew comparison between multiple qi initiatives or multiple implementation sites; these papers included reports of characteristics of implementation and descriptive statistics, for example of quality indicators [ - , , ] . articles came from six studies that published multiple papers about a single qi intervention, for example protocol articles, intervention development and analysis of a subset of the data. these were not duplicate publications, but rather publications of complementary descriptions and analyses of, often complex, qi projects. the six studies were scope (safer care for older persons (in residential) environments) [ , , ] , connect for quality [ , ] , interact (interventions to reduce acute care transfers) [ , , , ] , prosper (promoting safer provision of care for elderly residents) [ , , ] . we found only five articles which applied standardised reporting guidelines. four followed the consort guidance for trials [ , , , ] and one used the squire . quality improvement checklist [ ] . due to the diversity of methods reported within studies, it was not possible to use a formal tool to appraise quality across all articles. the review team did, however, identify weaknesses in study design and reporting. we found studies either had deficiencies in methods [ , , , , , - , , , , - , - ] or were descriptive without process or outcome data [ , , - , , , , , , , , , ] . weaknesses included small sample size (for example, one care home sampled), no comparator or baseline, and number of participants not reported. several studies reported the number of beds and identified the number of cases per bed, making it difficult to elucidate the numbers of participants in the study. selection bias was identified in three studies, where underperforming care homes were recruited [ , , ] . this represents a tension in qi literature, where legitimate targeting of qi interventions may limit the generalisability of findings to care homes which are already delivering high quality care. considering quality improvement strategies adopted, five studies reported using quality improvement collaboratives, or breakthrough series [ , , , , ] , nine studies reported using 'plan do study act' (pdsa) or similar iterative change management [ , , , , , , , , ] and one reported using the toyota method, also known as kaizen or continuous improvement [ ] . other studies described components quality improvement, but without specifying a particular strategy. thirty-eight studies engaged with a qi expert to oversee and deliver the qi approach in the care home setting. furthermore, of these studies reported that the qi external expert was not engaged with the study team (i.e. qi consultants). in studies, a member of the study team acted as external facilitator. nine studies required care homes to the occupational groups taking part in qi improvement initiatives were predominately nurses (in studies), care assistants (in studies) and care home managers or administrators (in studies) (see table ). other occupational groups were rehabilitation therapists (including physiotherapists and occupational therapists) (in studies), doctors (in studies), social workers (in studies), directors of nursing (or care) (in studies), dietary staff (including dieticians, nutritionists and chefs) (in studies) and pharmacists (in studies). studies described teams of multiple occupational groups or professions ( or more staff groups) taking part in the qi intervention (see right hand column in table ). five studies described multiprofessional teams, or that all staff of the care home participated in qi, but it is unclear which occupational groups these descriptions may include [ , ] . evaluation of change at staff or organisational level included the assessment of work life, well-being or satisfaction [ ] , staff learning or confidence [ , , , , ] , and adaptation or adoption of care processes or protocols [ , , , , , , , ] . specifically, the following process measures were assessed: hourly rounding [ ] , care planning [ ], collaborative practice [ ] . finally, one study described changes to the care home (social) environment, such as mealtime ambience [ ] . overall, these data indicate that quality improvement strategies can be successfully implemented in care home settings, but do not differentiate between various quality improvement strategies applied. the resident-facing interventions delivered as part of qi focused on management of the following: falls (n = ), pressure ulcers (n = ), pain (n = ), medication management and polypharmacy (n = ), nutrition (n = ), incontinence (n = ), end-of-life care (n = ), dyspnoea and pneumonia (n = ), depression (n = ) and heart failure (n = ). five papers focused on comprehensive multimodal assessment which was similar in nature to comprehensive geriatric assessment (cga) [ ] , although it was not always explicitly labelled as such. twenty-one studies used data from minimum dataset (mds) as an outcome measure. mds is a system of assessing resident needs and is used for quality assurance and payment of care homes. it was developed in the usa, where it is now mandated, and it is used in canada and many european countries. the majority of these studies were from the usa [ ] , with two from canada. it was often difficult to elucidate the precise details of many resident-facing interventions deployed as part of qi, with no use of standardised reporting frameworks (e.g. tidier [ ] or epoc [ ] ). analysing the above factors indicates that there is no pattern or association between the type of qi strategy and the staff groups involved, or the resident-facing intervention. to illustrate this, the following analysis describes one qi strategy, audit and feedback. of the studies involved nursing staff, and involved care assistants with several other occupational groups involved in many studies. studies described resident-facing interventions which addressed clinical topics such as falls [ , , ] , end-of-life care [ , ] , incontinence [ ] , depression [ ], and medication [ ] . staff-level changes reported for audit and feedback included the following: increased self-rated staff competency [ ], improved staff interactions and relationships with residents [ ] , improvement in quality indicators [ ] . finally, for studies of audit and feedback, resident outcomes reported include decrease in hospitalisation [ ] , decrease in antipsychotic [ ] . in summary, there was no evidence that a particular qi strategy had been chosen to address a particular resident problem. furthermore, there was no pattern of a particular qi strategy being applied to a particular occupational group. the main finding of this review is that there is a sizeable and increasing body of literature, mostly based in the usa, describing quality improvement (qi) initiatives in care homes settings. the literature predominantly focused on qi interventions at an organisational level, with a smaller literature reporting resident-level process or health outcome metrics, and an even smaller number of articles reporting both organisational-level and resident-level outcomes. much of the work was descriptive, but the value of descriptions was limited by the lack of reporting according to standardised checklists for qi or resident-level interventions. in many articles, whilst components of change management were specified, such as education or care pathways, the quality improvement strategy was not explicitly stated. there was no association of the type of qi approach with the clinical issue being addressed, neither was there a pattern of the type of qi approach applied to certain occupational groups. the strengths of this review relate to the structured approach to the literature using both academic and grey literature databases, the inclusive search terms used, and the way in which we separated out quality improvement strategies (change management) from resident-level outcomes in our analysis. a consequence of the lack of statements of quality improvement strategy is that much of the literature uncovered here will have been missed in previous systematic reviews with a focus on a particular quality improvement strategy, for example those focussing just on quality improvement collaboratives [ ] . the weaknesses of our approach relate to the fact that much qi work appears in grey literature that may have been beyond the reach of the databases we consulted. another weakness is the fact that the breadth of the literature retrieved precluded structured approaches to quality appraisal or risk of bias. such quality appraisal is not usually, though, part of scoping reviews [ ] , and the variability with which interventions were reported would have challenged systematic review approaches. reporting qi initiatives is not easy. to do so comprehensively, authors must report on the change management, and also describe resident interventions and outcomes. to do so within the editorial limitations of a journal article is challenging and this may be reflected in the six qi interventions included here where the authors chose to describe intervention development and evaluation over multiple papers [ , , , , , ] . the squire checklist [ ] is relatively recent ( ) and was published after many of the papers included in our review and this may explain why many authors did not adhere to this reporting guideline. tidier [ ] and epoc [ ] come from the academic disciplines of clinical trials and systematic reviews, respectively, and may not be well known to the clinical and qi communities. we suggest that, from our experience reviewing these articles, the use of such structured reporting would add considerable clarity. an important care home-specific consideration which we identified in the literature was that most facilitation of qi came from outside the care home sector, with relatively little evidence of efforts to generate qi expertise within care home staff. there are, though, a number of care home-specific contextual factors which can influence the impact of improvement interventions [ ] and a much larger literature suggesting that interventions work in care homes only when they enlist the full support of care home staff [ ] . we propose that this is required to develop qi expertise and capacity amongst care home staff. this work is important to the readership of european geriatric medicine because some-such as elderly care physicians in the netherlands [ ]-may already be directly involved in supporting improvement work in care homes. in other instances, such as in the uk, geriatricians and allied health professionals have been recruited to provide leadership around improvement in care homes. it is important for these professionals to understand the uncertainties in the evidence base for the work they are being asked to do. in conclusion, the literature demonstrates a growing interest in qi in care homes across a number of countries. however, there is a tendency for qi to be reported in vague terms, making the work difficult to understand or synthesise. this in turn makes it difficult for those within the sector to replicate work described in reports. we advocate for a more robust approach to reporting qi interventions in care homes, with attention to describing both the quality improvement strategy (change management), how it leads to improved processes of resident-level care and finally to health outcomes. more attention is required to describe outcomes of qi projects, particularly how they change outcomes for residents. there is limited evidence of efforts to upskill care home staff in qi and this should be a specific focus of future initiatives. conflict of interest jb: director of jay banerjee consultancy ltd, providing commissioned training and coaching for healthcare professionals. nc, rd, khs, alg declare no conflicts of interest. ethical approval not applicable. care of older people-uk market report. laing and buisson, laing and buisson . skills for care ( ) care homes with nursing in the adult social care sector skills for care ( ) care only homes in the adult social care sector. skills for care an international definition for "nursing home health status of uk care home residents: a cohort study survey of admissions to residential and nursing home care: final report of the month follow-up provision of nhs generalist and specialist services to care homes in england: review of surveys explaining the barriers to and tensions in delivering effective healthcare in uk care homes: a qualitative study covid- highlights the need for universal adoption of standards of medical care for physicians in nursing homes in europe making our health and care systems fit for an ageing population. king's fund london long term plan an evaluation of a safety improvement intervention in care homes in england: a participatory qualitative study a quality improvement collaborative aiming for proactive healthcare of older people in care homes (peach): a realist evaluation protocol reducing hospital admissions in older care home residents: a -year evaluation of the care home innovation programme (chip) what we know about designing an effective improvement intervention (but too often fail to put into practice) we're all different and we're the same: the story of the european nursing home resident quality improvement interventions to address health disparities) identifying published studies of care home research: an international survey of researchers a systematic mapping review of randomized controlled trials (rcts) in care homes are quality improvement collaboratives effective? a systematic review systematic review of the application of the plan-dostudy-act method to improve quality in healthcare prisma extension for scoping reviews (prisma-scr): checklist and explanation scopeout: sustainability and spread of quality improvement activities in long-term care-a mixed methods approach managing deterioration in older adults in care homes: a quality improvement project to introduce an early warning tool advance care planning in the nursing home setting: a practice improvement evaluation hourly rounding: a fall prevention strategy in long-term care impact of intervention to improve nursing home resident-staff interactions and engagement a model for implementing guidelines for person-centered care in a nursing home setting small" things matter: residents involvement in practice improvements in long-term care facilities report of a pilot study of quality improvement in nursing homes led by healthcare aides exploratory study of nursing home factors associated with successful implementation of clinical decision support tools for pressure ulcer prevention improving heart failure disease management in skilled nursing facilities: lessons learned promoting quality improvement in long-term care: a multi-site collaboration to improve outcomes with pneumonia, falls, bacteriuria and behavioural issues in dementia improving pain management in longterm care: the campaign against pain improving care in nursing homes using quality measures/indicators and complexity science ameliorating pain in nursing homes: a collaborative quality-improvement project assessing the safety culture of care homes: a multimethod evaluation of the adaptation, face validity and feasibility of the manchester patient safety framework pathways to quality improvement for boarding homes: a washington state model reducing perceived barriers to nursing homes data entry in the advancing excellence campaign: the role of lanes (local area networks for excellence) implementing a pain management program in a long-term care facility using a quality improvement approach effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: a cluster-randomized controlled three-armed trial connect for better fall prevention in nursing homes: results from a pilot intervention study evaluating a dementia learning community: exploratory study and research implications effects of an intervention to reduce hospitalizations from nursing homes: a randomized implementation trial of the interact program do gerontology nurse specialists make a difference in hospitalization of long-term care residents? results of a randomized comparison trial can district nurses and care home staff improve bowel care for older people using a clinical benchmarking tool? randomized multilevel intervention to improve outcomes of residents in nursing homes in need of improvement randomized clinical trial of a quality improvement intervention in nursing homes translating evidence-based falls prevention into clinical practice in nursing facilities: results and lessons from a quality improvement collaborative implementation and evaluation of a nursing home fall management program the evaluation of an interdisciplinary pain protocol in long term care improving the quality of care of long-stay nursing home residents in france the influence of corporate structure and quality improvement activities on outcome improvement in residential care homes encouraging best practice in residential aged care program: final evaluation report. centre for health service development scope: safer care for older persons (in residential) environments: a study protocol connect for quality: protocol of a cluster randomized controlled trial to improve fall prevention in nursing homes degree of implementation of the interventions to reduce acute care transfers (interact) quality improvement program associated with number of hospitalizations interventions to reduce hospitalizations from nursing homes: evaluation of the interact ii collaborative quality improvement project nursing home physician educational intervention improves endof-life outcomes adaptation of a nursing home culture change research instrument for frontline staff quality improvement use role of comprehensive geriatric assessment in healthcare of older people in uk care homes: realist review better reporting of interventions: template for intervention description and replication (tidier) checklist and guide getting evidence into practice: the work of the cochrane effective practice and organization of care group (epoc) a typology of reviews: an analysis of review types and associated methodologies squire . (standards for quality improvement reporting excellence): revised publication guidelines from a detailed consensus process setting priorities to inform assessment of care homes' readiness to participate in healthcare innovation: a systematic mapping review and consensus process a systematic review of integrated working between care homes and health care services a structured process description of a pragmatic implementation project: improving integrated care for older persons in residential care homes we carried out a systematic search of academic and grey literature databases, anticipating that quality improvement projects may be reported both within and outside academic literature. for formal academic publications, we searched medline, cinahl, psychinfo and assia. for grey literature, we searched opengrey, the healthcare management information consortium (hmic) database, the national institute for health and care excellence (nice) database and social care online.we used search terms to capture articles about quality improvement, such as "quality improvement", "quality indicators, health care" or "health services research". we also included terms to identify specific quality improvement strategies, such as "pdsa", "model for improvement" and "six sigma". finally, to retrieve articles on care homes we included a search approach established through a recent consensus exercise [ ] , including terms such as "nursing home", "long-term care", "care home", "residential home", "residential facility", "institutional care", "skilled nursing facility", "institutionalisation", "care facility" and "homes for the aged". an example search string of how key: cord- -mqsgqfbs authors: bonilla-molina, luis title: covid- on route of the fourth industrial revolution date: - - journal: postdigit sci educ doi: . /s - - - sha: doc_id: cord_uid: mqsgqfbs nan model of content unable to keep up with the accelerating innovation; and (g) the impetus for a conversion of the teaching profession into curricular administration. following covid- lockdowns and transitions to online education, the global pedagogical blackout is now more clearly evidenced as a consequence of the transformation of the capitalist mode of production through the acceleration of scientific-technological innovation (bonilla-molina a, b, c, d) . the preventive quarantine has been used to enhance the construction of hegemony upon a new model of education, virtual education at home (bonilla-molina e, f), which is already in proposal by the inter-american development bank (idb), world bank, organization for economic development (oecd), and the us trump administration. the contingent shift towards a virtual home education model is closely linked to the covid- pandemic, yet this opportunity accelerates the construction of hegemony for near future. in just few months, educational neoliberalism has mainstreamed tensions between face-to-face education in schools and virtual education at home in global public discourse. this is a false dichotomy because virtuality can complement face-to-face educational process without replacing them. as paulo freire ( ) emphasized, we all learn together. certainly, schools will gradually reopen their doors in a few weeks or months, but educational neoliberalism has already created the illusion that schools are outdated-an illusion which is a useful justification for capital to start a new phase of the destruction of public schools. the 'home school' or 'home education' model has been making its way for decades, as capital bet to lower the costs of sustaining national and local school equipment. in the s, the paradigm of the 'education society' was promoted, which sought to transfer the responsibilities of the state to communities and families; the central idea was for families to pay for their children's education and for the state to address only those lagging behind. presented through the discourse of citizen co-responsibility, this initiative gained a special push with the appointment of the trump administration's director of education betsy devos, a militant devotee of the home education model (bonilla-molina g). during the covid- pandemic and its social distancing context, parents and families are abruptly given the responsibility to endow their students with equipped computers, the internet, access to platforms, and a 'virtual pedagogy.' this is not a temporary situation as we are led to believe, but an integral part of the political and ideological architecture of education and schooling that has been in the making for a long time (bonilla-molina g). together with initiatives to make the home education model possible, the world of work has inevitably begun to change (bonilla-molina h). the global pedagogical blackout is the beginning of a planetary-scale process of social reengineering to reorder the world of work, consumption, sociability, and governance. cognitive capitalism changes models of consumption, trade, merchandise, (material and immaterial) production, sociability, and education. my view is that the 'family home' will play a central role in this reordering. work in the first and second industrial revolution had industrial factories for production, and offices for the bureaucracy, as the central places of employment. a good amount of informal and artisanal work was also organized around these axes. however, the third industrial revolution began to reorient this trend. in the last decades, telework from home has become a new work phenomenon. the eurofound and the international labor organization report entitled 'working anytime, anywhere: the effects on the world of work' ( ) noted that, depending on the country, telework ranged from to % and in its full range of expression would mostly fall into the range of informal or flex-based work. according to the report, this implies a drastic change in the organization of work time, which in many cases can exceed the maximum legally permitted workload. the most relevant part of the report is that telework shows a clear trend towards expansion over the next five years. the experience of social isolation has led many governments to consider quick development of telework-related legislation, thus reallocating various office tasks to the once 'private' space of the home. after the second world war, the dominating trade model implied that the goods went to the consumer. during the s, crises of overproduction and oil prices began to reorient consumption towards shopping malls, prompting the consumer to go where the goods were. scheduled obsolescence of goods and slow incorporation into consumption of those living without electricity, education, or little drinking water, partially solved the problem of failed capitalist gain projections. the internet made way for online commerce or e-commerce, which concentrated consumption in a new place: the home. social media and increased connectivity have strengthened the tendency to relocate consumption. according to the 'global consumption report on e-commerce: key figures globally' (e-commerce nation ), annual average online purchases vary by zones, with asia having the largest number of . online purchases per year. north america had online purchases per year, western europe . , and austria and new zealand . . areas with the lowest numbers of online purchases per year are latin america with . , africa and the middle east , and eastern europe and russia . . the report predicted that these numbers were to exponentially grow by . covid- -induced lockdowns and quarantines have further enhanced online mode of consumption, bringing medicines, food, non-perishable products, books, technology, among other things, from commercial premises to customer's doorstep. the financial crisis showed capital's ability to move from place to place using online commerce. this trend has been accentuated in recent years, and today many commercial and financial transactions are done from home. this dynamic gave way to business-to-business e-commerce that reported as early as january a % growth compared with (we are social ). this is more than evident in the asia pacific, which today is one of the most important dynamizers of the capitalist economy, and where % of operations are carried out in this format. economy and consumption have moved to an online model, which centrally includes working from home. bars, cinemas, restaurants, and other places of leisure and fun play a decisive role in human encounters and the construction of sociability. social networks have been reconfiguring these human needs for a while, and much of the dialogue and the construction of affinities is now done digitally. however, these trends do not include everyone. the hootsuite report (cooper ) demonstrating ' social media statistics that are important to marketers in ' notes that % of the world's population or some . million people have access to the internet, % of whom use social media. the report indicates that % of the world's population use some social network and/or platform, which means that the other %, among which are students, parents, and teachers, have no online experience. clearly, these statistics significantly influence home education initiatives within the framework of the covid- pandemic. state-of-the-art technological developments, especially those associated with artificial intelligence, nanotechnology, facial biometric recognition, and metadata analysis, are being experimented on for social control, with china as a leader in the field. the idea of big brother becomes indispensable from production and consumption in the fourth industrial revolution. such developments cause numerous problems, threaten to leave half of global population on the economic periphery, and increase social discontent, unrest, and revolt. to avoid revolutions, the home has become the primary control unit. this global governance model has been furthered with social distancing and quarantine introduced during the covid- pandemic. 'stay at home' is a form of social control and an experiment in how long the population will endure under the aegis of induced fear. similarly, a dominant discourse related to the global ecological crisis is now being constructed around the idea that citizens confined in their homes have caused a significant reduction in pollution. in this discourse, which blames the people rather than the capitalist system, the solution is not to overcome the profitfocused model but to reduce people's mobility (bonilla-molina i). the confinement at home is presented as a determining factor in a solution to the ecological crisis. the twenty-first century cognitive and transnational capital/capitalism seems to be revaluing the role of a 'family home' in the economy, consumption, work, and education. the home appears as one of the potential new epicenters for social reengineering. this process of assembly is denounced within the global pedagogical blackout. this does not imply that there should not be any 'virtual pedagogies,' more so that the essence of pedagogy, the human encounter, is being threatened. covid- lockdowns and quarantines have opened up various strategies and approaches focused on the model of home education. more often than not, this 'transition' fails to take into account economic, social, and technological inequalities. unesco's pre-pandemic ( ) data is frightening: of the . million children out of school, million had no computer and approximately million had no internet connection. just before the global lockdown, million school-aged children and adolescents were out of school. adding these numbers, more than a billion children and young people have remained out of (online) school coverage during the covid- pandemic. the world has a bit over . billion inhabitants, billion of which do not have access to electricity (iea, irena, unsd, wb, who ). according to the international labour office ( ), the world's employed population before covid- was . billion. two billion people were in informal employment, . billion of which were in highly unstable (day-to-day) employment. teachers account for ca % of the world's employment. between and % of public education expenditure goes to the teaching payroll. based on the promise of reducing this expenditure, the model of home education becomes a trojan horse to initiate a neo-privatization of education. however, the home education model has highlighted a number of problems. the first problem is pedagogical: the model of frontal classroom education, focused on the blackboard, plays little or no role in new models of online education. interactivity, multimedia, and brevity of ideas characteristic for online communications do not fit well with schools focused on orality and classical written forms. schools are not equipped with technological infrastructure (computers, cameras, internet connectivity) and platforms offered by ministries of education are often inadequate. lot of online educational content fails to appropriately utilize digital affordances. in many instances, the home education model is not more than an online extension of freire's ( ) model of banking education. second, teachers have little and/or inadequate training for supporting their students at home. this is the responsibility of educational ministries and teacher training centers, which often lag behind technological and pedagogical developments. many teachers work in institutional cultures that see technology as the enemy. this creates a clash between educational policies and realities. for instance, before the covid- pandemic, documents and policies such as the 'unesco guidelines for mobile learning policies' ( ) were adopted in many countries, yet the use of cell phones in educational institutions was nevertheless prohibited. third, the false tension between virtual education and face-to-face education in schools has generated a neo-conservative wave of an uncritical defense of face-to-face schooling, ignoring its structural deficiencies in developing a freirean model of liberating, transformative education. fourth, the lack of understanding of global processes leading to the model of virtual education at home has generated the fatuous hope that after the end of the covid- pandemic things will return to the old 'normal.' however, this return is impossible. during the pandemic, neoliberalism has sowed the idea of obsolescence of the face-to-face school deeply into public discourse. the world of employment is also changing, and the old newtonian educational machine built for capital's requirements within the framework of the first and second industrial revolution is no longer relevant and/or needed (bonilla-molina j). the only way to build alternatives is to come together and think of a different education. this requires building philosophical foundations, principles, and values for a new school, and developing practical strategies to instrumentalize these ideas. now more than ever, the pandemic world requires a unity of teachers, guilds, trade unions, academics, collectives, companions of popular education, and everyone else interested in the future of education. another world is possible. that is why the international contact group supports the first american summit of anti-neoliberal educators in bringing together teachers that resist and fight neoliberal educational policies and practices within the region. we all have our own ideas about what will come and how to shape the future, but times of individual heroes are irreversibly gone. the future of education during and after covid- requires global collective action. las reformas educativas en clave de resistencias el ods- en la perspectiva de la pedagogía radical de las resistencias en casa y sin tocar a los otros: coronavirus o reingeniería social a escala planetaria la escuela y la universidad en el capitalismo de la primera y segunda revolución industrial la cultura evaluativa y la virtualización educativa: dos tenazas del capitalismo cognitivo de la tercera revolución industrial coronavirus: google y la nasa en la reingeniería educativa pongámonos serios ¿educación virtual en casa los desaparecidos y torturados por el modelo global de educación en casa coronavirus, nuevas profesiones y máquina educativa newtoniana el presupuesto para la nómina docente en el centro de interés de la neo privatización educativa avengers, coronavirus y cambio climático coronavirus, nuevas profesiones y máquina educativa newtoniana el covid- en la ruta de la cuarta revolución industrial estadísticas de redes sociales que son importantes para los mercadólogos en . hootsuite informe global de consumo sobre ecommerce: cifras clave a nivel mundial luxembourg and geneva: publications office of the european union, and the international labour office d% d-publ/documents/publication/wcms_ .pdf. accessed pedagogy of the oppressed. harmondsworth: penguin education specials world employment and social outlook: trends . geneva: international labour office directrices de la unesco para las políticas de aprendizaje móvil we are social acknowledgments this article was written for postdigital science and education in may . the first draft of the article, written in spanish language, was published as a blog post (bonilla-molina k). the draft was translated by jorge f. rodriguez, reviewed, and extensively edited in collaboration between the author, the translator, and the pdse editorial team.postdigital science and education extends special thanks to jorge f. rodriguez, who quickly and masterfully translated the article, thus allowing the journal to offer a truly global perspective on the covid- pandemic. key: cord- -xherv wt authors: suner, c.; ouchi, d.; mas, m. a.; lopez alarcon, r.; massot mesquida, m.; negredo, e.; prat, n.; bonet simo, j. m.; miralles, r.; teixido colet, m.; verdaguer puigvendrello, j.; henriquez, n.; marks, m.; ara, j.; mitja, o. title: risk factors for mortality of residents in nursing homes with covid- : a retrospective cohort study date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: xherv wt background nursing homes have shown remarkably high covid- incidence and mortality. we aimed to explore the contribution of structural factors of nursing home facilities and the surrounding district to all-cause and covid- -related deaths during a sars-cov- outbreak. methods in this retrospective cohort study, we investigated the risk factors of covid- mortality at the facility level in nursing homes in catalonia (north-east spain). the investigated factors included characteristics of the residents (age, gender, comorbidities, and complexity and/or advanced disease), structural features of the nursing home (total number of residents, residents who return home during the pandemic, and capacity for pandemic response, based on an ad hoc score of availability of twelve essential items for implementing preventive measures), and sociodemographic profile of the catchment district (household income, population density, and population incidence of covid- ). study endpoints included all-cause death and covid- -related death (either pcr-confirmed or clinical suspicion). findings the analysis included nursing homes that provide long-term care to , residents. between march and june , , , deaths were reported in these nursing homes; , ( , %) of them were covid- -confirmed. the multivariable regression showed a higher risk of death associated with a higher percentage of complex patients (hr , ; %ci , to , per % increase) or those with advanced diseases ( , ; , to , ), lower capacity for implementing preventive measures ( , ; , to , per -point increase), and districts with a higher incidence of covid- ( , ; , to , per cases/ , population increase). a higher population density of the catchment area was a protective factor ( , ; , to , per log people/km increase). interpretation presence of residents with complex/advance disease, low capacity for pandemic response and location in areas with high incidence of covid- are risk factors for covid- mortality in nursing homes and may help policymakers to prioritize preventative interventions for pandemic containment. the analysis included nursing homes that provide long-term care to , residents. between march and june , , , deaths were reported in these nursing homes; , ( · %) of them were covid- -confirmed. the multivariable regression showed a higher risk of death associated with a higher percentage of complex patients (hr · ; %ci · - · per % increase) or those with advanced diseases ( · ; · - · ), lower capacity for implementing preventive measures ( · ; · - · per -point increase), and districts with a higher incidence of covid- ( · ; · - · per cases/ , population increase). a higher population density of the catchment area was a protective factor ( · ; · - · per log people/km increase). presence of residents with complex/advance disease, low capacity for pandemic response and location in areas with high incidence of covid- are risk factors for covid- mortality in nursing homes and may help policymakers to prioritize preventative interventions for pandemic containment. funding: crowdfunding campaign yomecorono (https://www.yomecorono.com/), and generalitat de catalunya. evidence before this study we searched pubmed for studies exploring the management of covid- in long-term care settings. the search was performed on may , , and included the keywords "covid- ", "nursing home", "long term care", and "skilled nursing facility" with no language restriction. in addition to descriptive reports of covid- mortality in the long-term care setting, we found studies providing evidence on the influence of age and comorbidities to mortality at the individual level. some authors reported comparisons in the incidence and mortality of covid- between facilities and country areas, and suggested the characteristics of each area/facility that may explain differences in mortality. however, we found no published works specifically investigating the contribution of structural features of the facility and sociodemographic characteristics of the area to explaining differences in covid- mortality among long-term care facilities. this is the first analysis of risk of mortality at a facility level of residents with covid- in nursing homes. we enrolled up to nursing homes providing long-term care to , residents and we actively identified risk factors for covid- mortality at the facility level. we found that nursing homes with lower capacity for pandemic response, and located in districts with a higher incidence of covid- had significantly higher risks of covid- mortality. the percentage of complex and/or advanced disease patients was also a risk factor. our findings provide policymakers with critical information to prioritize long-term care facilities at higher risk when deploying preventative interventions to minimize mortality in this setting. the association between mortality within the nursing home and covid- incidence in the catchment area reinforces the importance of preventing the entry of sars-cov- into facilities. nursing homes with limited capacity to implement containment measures should be prioritized when deploying preventative interventions for minimizing covid- mortality in long-term care facilities. six months after the first outbreak of the novel coronavirus disease , the global death toll associated with the pandemic amounted to nearly half a million. to date, various authors have reported on the major role of long-term care (ltc) facilities, such as nursing homes, in spreading sars-cov- to the most vulnerable populations during the covid- pandemic. this group has experienced an extremely high death toll and also has overwhelmed local health systems. in some countries, ltc residents account for more than % of deaths attributed to covid- . in catalonia (north-east spain), the government reported approximately , deaths among residents of ltc facilities between march and april . to date, large variations in covid- death rates across ltc facilities have been observed. whether the high death rates are linked to the structural features of such settings or the poorer health of individuals in these facilities compared to those living elsewhere is still unclear. because of the different policy implications of the relative influence of these features, there is a need to deepen into the determinants of sars-cov- spread and mortality in ltc facilities. , potential risk factors of the residential setting are a communal living area, multiple residents in a single room, care provided by multiple caregivers -who may work across multiple different facilities, shortage of healthcare resources (e.g., tests, and personal protective equipment), limited access to skilled healthcare professionals, and the lack of specific guidance for managing the outbreak in the residential setting. , , in addition to these setting-specific risk factors, the higher death rates are likely associated primarily with older age, high levels of multicomorbidity, disability, and immune senescence of old-age. , [ ] [ ] [ ] finally, some authors have identified risk factors associated with the characteristics of the population in the catchment area, such as the mean household income or the population density. , we aimed to assess whether living in a nursing homes for ltc is associated with an increased risk of death from covid- beyond the risk associated with age and chronic health conditions. we used data from nursing homes, including residents' health characteristics, structural features, and the demographic and epidemiological profile of the district where the nursing home is located, to investigate the association between potential risk factors at the facility level and mortality in the residential setting during the sars-cov- outbreak in spain. this was a retrospective cohort study of covid- mortality risk factors in the residential setting in catalonia (north-east spain). the study included clinical, mortality, and structural information corresponding to all public and private nursing homes in the administrative health region metropolitana nord (population , , people) in barcelona, spain between march . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; and june , , during the covid- outbreak. skilled nursing facilities (i.e., intermediate care) and mental health facilities were excluded from the analysis. on march , , the department of health of catalonia launched a comprehensive disease control program to minimize covid- spread and mortality among residents in nursing homes. the containment strategy was implemented in all ltc facilities in the study area and involved primary care teams that reported daily information regarding the epidemiological status of each nursing home. the primary care teams provided preventive epidemiological recommendations, including the partition of communal living areas, isolation of suspected cases and contacts, guidance on personal protective measures to nursing home workers. in the advent of a confirmed or suspected case of covid- , the teams also conducted systematic screening of close contacts-or all residents, in centers with high incidence-using real-time reverse transcription-polymerase chain reaction (rt-pcr) from nasopharyngeal swabs. the study protocol was approved by the institutional review board of hospital germans trias pujol. demographic and clinical data of residents were extracted from electronic medical records using a standardized data collection form. the structural and organizational features of each nursing home were gathered at facility assessment visits by the study team. the demographic and epidemiological profile of the nursing home district was retrieved from the statistical institute of catalonia. deaths were identified from the mortality registry of the department of health of catalonia. all data were handled according to the general data protection regulation / on data protection and privacy for all individuals within the european union and the local regulatory framework regarding data protection. variables regarding the residents' health characteristics in each nursing home included demographic characteristics (i.e., age and gender), and clinical characteristics (i.e., number of comorbidities and percentage of residents with high dependence in activities of daily living, defined as a barthel score < ). we also recorded the percentage of residents identified on electronic medical records as complex chronic patients (ccp) and patients with advanced chronic disease (acd) by their primary care teams, according to clinical guidelines of the catalan health department. these guidelines define ccp based on their clinical condition (e.g. multimorbidity, disability, difficult symptom control) and/or social environment (e.g., lack of support from family or caregivers, isolated household). patients with acd are those with advanced and irreversible chronic conditions that limit their life expectancy to approximately months. comorbidities were codified according to the icd- system and included dementia, . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint asthma or chronic obstructive pulmonary disease, hypertension, type- diabetes mellitus, type- diabetes mellitus, chronic kidney disease, cerebrovascular disease, cardiovascular disease. structural features of nursing homes were characterized according to their capacity for pandemic preparedness and response (snq score) and other relevant organizational variables such as current number of residents and percentage of residents who return home to live with their relatives due to the pandemic. the capacity of the nursing home for pandemic preparedness and response was assessed using an ad hoc set of essential items that yields a score, called snq (sine qua non conditions for implementing the measures). the score indicates the number of unmet requirements, which ranges from (all requirements are met) to (all requirements are unmet). the requirements are related to three areas: ) personal protective equipment (ppes) (adequate supply, routine use, and use for waste management and cleaning/disinfection), ) surveillance and communication (routine monitoring of symptom onset by non-healthcare professionals and communication of symptoms to occupational health services), and ) cleaning and waste management (regular hand washing before and after contact with covid- patients or their contacts, adequate laundry procedures, cleaning and disinfection of surfaces, use of an adequate disinfectant, adequate disposal of used ppes). the district demographic and epidemiological profile was assessed and defined using the household income and density of population in the municipality, and the population incidence of covid- in the post code district (lowest administrative division) where the nursing home is located. deaths were classified as covid- -related when individuals had a positive rt-pcr or a clinical suspicion of covid- . clinical suspicion of covid- was defined based on the national guidelines available at the time as individuals with clinical features of acute respiratory disease of sudden onset and any severity, primarily characterized by fever, cough, and shortness of breath. other symptoms such as odynophagia, anosmia, dysgeusia, muscular pain, diarrhea, chest pain, or headache could also be considered suggestive of sars-cov- at the physician's discretion. continuous and categorical variables were presented as the mean and standard deviation (sd) (or median and interquartile range [iqr], defined by th and th percentiles) and number (%), respectively. the excess deaths were defined as the difference between deaths reported in and the median of - for the same months of the year; the covid- contribution to the excess deaths was computed by the difference between confirmed or suspected covid- deaths and all-cause mortality. in our primary analysis to determine the risk factors associated with mortality, we used univariate and multivariate poisson regression models at facility level. variables for the multivariate model were treated as linear, and were chosen using an akaike information criteria (aic)-based backward stepwise procedure. results were presented as the . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this this version posted november , . ; hazard ratio (hr) and the % confidence interval (ci). in a secondary analysis, we grouped the nursing homes according to their characteristics using cluster analysis based on k-nearest neighbor classifier. , the resulting clusters were described in a heatmap that represents the intensity of each characteristic based on the difference (below or above) between the average of the given cluster and that of the overall sample. we used a random forest classifier and the gini measure of importance to determine the weight of each variable in each cluster. the significance threshold was set at a two-sided alpha value of . . all analyses and plots were performed using r version . . crowdfunding campaign yomecorono (https://www.yomecorono.com/), and generalitat de catalunya. the analysis included nursing homes providing long-term care to , residents. table summarizes the characteristics of the nursing homes included in the analysis. the mean age was · years, · % of them were classified as ccps and/or acd patients, and · % were identified as highly dependent. the median snq score was · unmet preventative items, reflecting an overall high level of pandemic preparedness. the individual demographic, clinical, and epidemiological characteristics of included residents are summarized in table s . between march and june , , a total of , deaths were reported in the nursing homes included in the analysis. of these, , ( · %) were registered as covid- deaths in the mortality registry of the department of health. the cause of the death of the remaining deaths could not be confirmed. overall, the excess deaths in the analyzed nursing homes compared with the same period in the four previous years were estimated to be deaths; covid- -confirmed deaths accounted for · % of all excess mortality (figure ). at the nursing home level, the median (iqr) mortality rate was · ( · - · ) deaths/ residents/ -month study period for all-cause death, and · ( . - · ) for covid- confirmed deaths. according to the multivariate analysis, the risk of covid- related deaths was higher in nursing homes with a higher percentage of ccp patients (hazard ratio · ; %ci · - · per units increase) or acd patients ( · ; · - · per units increase), lower capacity for pandemic preparedness and response ( · , · - · per unit increase) and located in areas with . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this this version posted november , . ; high incidence of covid- ( · ; · - · per cases/ , population increase) ( table ). the risk factors of all-cause death were the same as those of covid- related death. for covid- -related deaths, the univariate analysis revealed a higher risk of death in nursing homes with a high percentage of residents who returned home to live with their relatives. this variable was selected in the stepwise method, but it was not significantly associated with covid- related deaths in the multivariate analysis. the only variable associated with lower all-cause deaths was living in high-density population areas ( · ; · - · per log people/km ). the risk factors significantly associated to all-cause death were the same as those of covid- related death ( table ). the cluster analysis based on the k-nearest neighbor classifier identified eight groups of nursing homes that were significantly different from each other. resident health characteristics, structural features, and sociodemographic factors were stratified according to each phenogroup. figure illustrates the intensity of each characteristic (i.e., the extent of the difference between the mean of a given cluster and that of the entire sample) in the resulting clusters and the contribution of each characteristic to the definition of a given phenogroup. key characteristics of each cluster were as follows: nursing homes in cluster were placed in low densely populated areas with high population incidence of covid- , and high household income; cluster were facilities with a high proportion of ccp and acd patients, and located in areas with low population incidence of covid- ; cluster had low proportion of ccps and highly dependent residents; cluster had higher number of residents than the median, although with a very low proportion of ccps; nursing homes in this cluster were placed in areas with low household income; cluster had low proportion of acd patients and dependent residents, and had higher number of residents that returned home with their relatives; cluster were placed in areas with high household income and low population incidence of covid- ; cluster had high proportion of ccp and acd patients; nursing homes in this cluster were located in densely populated areas; cluster had a high snq score-indicating very limited capacity for pandemic preparedness and response-and high proportion of ccps and older residents than the median. the mortality rate in each phenogroup is shown in figure . during the study period, the median (iqr) proportion of all-cause deaths and covid- -related deaths in the eight nursing home clusters was · % ( · - · ) and · % ( · - · ), respectively. clusters , , and had a greater all-cause mortality rate than the median. correspondingly, clusters , , and had a greater covid- -related mortality rate than the median. . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint to our knowledge this is the first study on risk of mortality at a facility level of residents with covid- in nursing homes. our analysis revealed that a ten percent increase in the proportion of residents with complex or advanced diseases increased the mortality risk by % and %, respectively; a -point increase in the -points score of unmeet measures for containing sars-cov- spread increases the mortality risk by %, and an increase in population incidence of covid- cases per , population increases the mortality risk by %. location in a highly densely populated area was the only factor associated with a reduced mortality rate, which might be related to improved access to hospitals with intensive care units in urban areas, as previously suggested. the clustering of nursing homes according to their residents' profile and structural capacities provided a global perspective of the type of nursing homes that might be more susceptible to covid- mortality in the advent of future outbreaks. consistently with our regression analysis, clusters with greater mortality than the median (phenogroup numbers , , , and ) were all located in neighborhoods with high incidence of covid- . these results align with previous studies that reported a significant relationship between ltc mortality and covid- incidence in the catchment area. , , the increasing evidence on the influence of the local incidence of covid- on mortality underscores the paramount importance of early detection-and response to-sars-cov- entry into facilities-often with new residents, staff, or visitors-for preventing uncontrolled outbreaks in this setting. , these finding also suggests that population efforts to contain covid- incidence may also contribute to reducing covid- deaths at their local nursing homes the multiple regression and cluster analysis were also consistent regarding the importance of the capacity of the nursing home for pandemic preparedness and response. although most nursing homes showed low snq scores-indicating few unmet needs for applying containment measures-facilities in phenogroup , characterized by higher snq scores (mean of unmet items over a total of essential requirements) than the median, experienced high mortality levels. finally, our multivariate analysis revealed a significant relationship between higher percentages of ccp and/or acd patients and increased mortality risk. according to local clinical guidelines, ccp and acd patients are characterized by high clinical complexity and the presence of an advanced-often terminal-disease, respectively, suggesting an increased likelihood of death in the advent of any infection or acquired disease. interestingly, phenogroup no. , characterized by the higher health risk of its residents, had similar mortality than phenogroups , , and , with a more favorable resident health profile. these conflicting results suggest that the mechanisms driving mortality risk in nursing homes are complex and may depend on the conjunction of various factors. . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; our analysis had the intrinsic limitations of retrospective studies, particularly regarding data completeness. owing to the overload of the healthcare system during the investigated period, a large number of deaths could not be tested for sars-cov- pcr and remained unconfirmed. we were unable to gather information regarding the worker profiles in each nursing home. unlike skilled nursing homes aimed at intermediate care or mental health resources, which tend to be coordinated by the healthcare authorities, non-specialized nursing homes aimed at longterm stay are a case-mix of organizational models. hence, the inclusion of the characteristics of the work team profile (e.g., skills, resident/worker ratio, and presence of physicians) might have provided interesting insights regarding the capacity of the residence to cope with the outbreak. our results raise important policy implications by suggesting structural factors of the nursing homes and their surrounding districts that are important drivers of covid- -related mortality in this setting. identification of facilities with low capacity for pandemic response, located in areas with high incidence of covid- and low density of population (e.g., rural areas) could help public health officers to identify facilities where preventative interventions need to be prioritized. the presence of complex patients and those with advanced chronic diseases also increased mortality risk, though these factors alone seem not to explain mortality trends at facility level. efforts should be geared to protecting older adults living in the highest risk facilities. we declare no competing interests. is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) preprint the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint s i t u a c i ó d e p a n d è m i a p e r c o v i d coronavirus disease (covid- ) situation report - nursing homes or besieged castles: covid- in northern italy covid- : the precarious position of spain's nursing homes covid- deaths in long-term care facilities: a critical piece of the pandemic puzzle epidemiology of covid- in a long-term care facility in king county, washington nursing home healthcare workers' experiences during covid- clinical features of covid- in elderly patients: a comparison with young and middle-aged patients what lies beneath : clinical and resource-use characteristics of institutionalized older people . a retrospective , population-based cohort study in catalonia coronavirus disease in geriatrics and long-term care: the abcds of covid- mapping community-level determinants of covid- transmission in nursing homes: a multi-scale approach variation in sars-cov- prevalence in u.s. skilled nursing facilities predictors of functional recovery in patients admitted to geriatric postacute rehabilitation catalan ministry of health. health plan for catalonia - . a person-centred system: public, universal and fair data-driven phenotypic dissection of aml reveals progenitor-like cells that correlate with prognosis fast unfolding of communities in large networks random forests r: a language and environment for statistical com puting. r found mitigation policies and emergency care management in europe's ground zero for covid- discontinuation of transmission-based precautions and disposition of patients with covid- in healthcare settings (interim guidance) staffing levels and covid cases and outbreaks in us nursing homes the authors would like to thank gerard carot-sans for providing medical writing support during the preparation of the manuscript. key: cord- -c l gjn authors: tull, matthew t.; edmonds, keith a.; scamaldo, kayla m.; richmond, julia r.; rose, jason p.; gratz, kim l. title: psychological outcomes associated with stay-at-home orders and the perceived impact of covid- on daily life date: - - journal: psychiatry res doi: . /j.psychres. . sha: doc_id: cord_uid: c l gjn the covid- pandemic has resulted in the widespread implementation of extraordinary physical distancing interventions (e.g., stay-at-home orders) to slow the spread of the virus. although vital, these interventions may be socially and economically disruptive, contributing to adverse psychological outcomes. this study examined relations of both stay-at-home orders and the perceived impact of covid- on daily life to psychological outcomes (depression, health anxiety, financial worry, social support, and loneliness) in a nationwide u.s. community adult sample (n = ; % women, mean age = ). participants completed questionnaires assessing psychological outcomes, stay-at-home order status, and covid- ’s impact on their daily life. being under a stay-at-home order was associated with greater health anxiety, financial worry, and loneliness. moreover, the perceived impact of covid- on daily life was positively associated with health anxiety, financial worry, and social support, but negatively associated with loneliness. findings highlight the importance of social connection to mitigate negative psychological consequences of the covid- pandemic. the world health organization (who) announced on january , that the severe acute respiratory syndrome coronavirus (covid- ) was a public health emergency of international concern. currently, covid- has infected over million people and resulted in over , deaths worldwide (who, ) . currently, approximately , , individuals in the u.s. have been infected with covid- and over , have died due to the virus (centers for disease control and prevention [cdc] , ). moreover, due to covid- 's long incubation period, ease of transmission, high mortality rate (relative to the seasonal flu), and lack of pharmacological interventions (linton et al., ; shereen et al., ) , governments have had to implement extraordinary physical distancing interventions to slow the spread of the virus. within the u.s., stay-at-home orders have been implemented in most states and the district of columbia (mervosh et al., ) . from a public health perspective, there is strong justification for such interventionsphysically separating people is an effective strategy for preventing the spread of infectious diseases (ahmed et al., ; jackson et al., ) , including covid- (flaxman et al., ; thakkar et al., ) . however, although stay-at-home orders are vital for protecting physical health (cdc, ) , such interventions can also be socially and economically disruptive (chen et al., ; reger et al., ; thunström et al., ) . indeed, recent reviews have suggested that the negative social and economic consequences of current stay-athome orders and the covid- pandemic itself (e.g., economic downturn, frequent exposure to distressing media coverage) could contribute to adverse psychological outcomes, including increased loneliness, reduced social support, depression, anxiety, and financial concerns (asmundson & taylor, ; courtet et al., ; reger et al., ) . given the recent and sudden emergence of covid- , research in this area is understandably limited. however, several studies from china during the initial covid- outbreak revealed associations of covid- with increased anxiety, depression, and stress (cao et al., ; wang et al., ; zhang et al., ) . further, the overall negative impact of covid- on the economy, daily life, social activity, and the ability to work were associated with greater psychological difficulties (cao et al., ; zhang et al., ) . although research on the psychological outcomes associated with covid- is limited, available findings are consistent with those obtained in past studies on the psychological consequences of other pandemics. for example, hawryluck et al. ( ) found that quarantine during the sars outbreak was associated with high rates of depression ( . %) and anxiety ( . %). likewise, elevated levels of anxiety were observed during the h n pandemic (wheaton et al., ) . to extend this research to the psychological impact of covid- in the u.s., the present study examined associations of stay-at-home orders and the perceived impact of covid- on daily life to relevant psychological outcomes (i.e., depression, health anxiety, financial worry, perceived social support, and loneliness). we predicted that both stay-at-home orders and the perceived impact of covid- on daily life would evidence significant positive associations with all psychological difficulties and a significant negative association with social support when controlling for relevant demographic variables. we also predicted a significant interaction of stay-at-home orders and perceived impact of covid- on the outcomes of interest, such that the relation of stay-athome order status to negative psychological outcomes would be stronger for participants who perceived covid- as having a greater impact on their daily life. participants included a nationwide community sample of adults from states in the u.s. who completed online measures through an internet-based platform (amazon's mechanical turk; mturk) from march , , through april , . the study was posted to mturk via cloudresearch (cloudresearch.com), an online crowdsourcing platform linked to mturk that provides additional data collection features (e.g., creating selection criteria). mturk is an online labor market that provides "workers" with the opportunity to complete different tasks in exchange for monetary compensation, such as completing questionnaires for research. as such, mturk provided the opportunity to collect a large nationwide sample in a relatively short amount of time, facilitating timely examination of the initial impact of the covid- pandemic in the u.s. data provided by mturk-recruited participants have been found to be as reliable as data collected through more traditional methods (buhrmester et al., ) . mturk samples also have the advantage of being more diverse than other internet-recruited or college student samples (buhrmester et al., ) . for the present study, inclusion criteria included ( ) u.s. resident, ( ) at least a % approval rating as an mturk worker, ( ) completion of at least , previous mturk tasks (referred to as human intelligence tasks [hits]), and ( ) valid responses on questionnaires (i.e., assessed by accurate completion of multiple attention check items). participants ( % women; . % men; . % transgender; . % non-binary; . % other) ranged in age from to years (mage = . ± . ). all states in the u.s. were represented, with the exception of delaware, new hampshire, north dakota, vermont, and west virginia. the states with the greatest representation in the sample were florida ( . %), california ( . %), pennsylvania ( %), texas ( . %), new york ( . %), north carolina ( . %), michigan ( . %), ohio ( %), illinois ( . %), and washington ( %). most participants identified as white ( %), followed by black/african-american ( . %), asian/asian-american ( . %), latinx ( . %), and native american ( . %). regarding educational attainment, . % had completed high school or received a ged, . % had attended some college or technical school, % had graduated from college, and . % had advanced graduate/professional degrees. most participants were employed fulltime ( . %), followed by employed part-time ( . %) and unemployed ( . %). annual household income varied, with . % of participants reporting an income of < $ , , . % reporting an income of $ , to $ , , and . % reporting an income of ≥ $ , . regarding household composition, . % of participants reported living alone and the remaining . % reported living with at least one other person (ranging from - other household members; mean = . ± . ). in addition, . % of participants reported having at least one child in their household (ranging from - children in the household; mean = . ± . ). few participants reported having sought out testing for covid- ( %) or having been infected with covid- ( . %). all procedures received approval from the university's institutional review board. to ensure the study was not being completed by a bot (i.e., an automated computer program used to complete simple tasks), participants first responded to a completely automatic public turing test to tell computers and humans apart (captcha) prior to providing informed consent. on the consent form, participants were also informed that "…we have put in place a number of safeguards to ensure that participants provide valid and accurate data for this study. if we have strong reason to believe your data are invalid, your responses will not be approved or paid and your data will be discarded." data were collected in blocks of nine participants at a time and all data, including attention check items and geolocations, were examined by researchers before compensation was provided. attention check items included three explicit requests embedded within the questionnaires (e.g., "if you are paying attention, choose ' ' for this question"), two multiplechoice questions (e.g., "how many words are in this sentence?"), a math problem (e.g., "what is plus "), and a free-response item (e.g., "please briefly describe in a few sentences what you did in this study"). participants who failed one or more attention check items were removed from the study (n = of completers). workers who completed the study and whose data were considered valid (based on attention check items and geolocations; n = ) were compensated $ . for their participation. a demographic questionnaire assessed age, sex, annual income, household composition, and racial/ethnic background. covid- related experiences and stressors were assessed via a -item measure developed for this study. participants were asked about a variety of relevant experiences associated with the covid- pandemic. of interest to the present study were two questions from this measure assessing: ( ) stay-at-home order status (i.e., "do you live in a state that has instituted a stay-at-home order?" [ = no; = yes]); and ( ) perceived impact of covid- (i.e., "to what extent has the situation associated with covid- affected the way you live your life?"). participants responded to the latter question using a -point likert-type scale ranging from (no impact at all) to (impacted my life a great deal). current depression symptoms were assessed using the depression subscale of the -item version of the depression anxiety stress scales (dass- ; lovibond & lovibond, ) . participants are presented with a series of statements reflecting the experience of symptoms of depression (e.g., "i found it difficult to work up the initiative to do things," "i felt that i had nothing to look forward to"). participants are instructed to rate each item on a -point likert-type scale indicating the extent to which the item applied to them in the past week ( = "did not apply to me at all", = "applied to me some of the time", = "applied to me a good part of the time", = "applied to me most of the time"). all items from the depression subscale were summed to create one composite score (ranging from - ), with higher scores indicating greater depression symptoms. this measure has demonstrated good reliability and validity (lovibond & lovibond, ) . internal consistency of the depression subscale was acceptable (α = . ). the short health anxiety inventory (shai; abramowitz et al., ; salkovskis et al., ) is an -item self-report measure assessing health anxiety symptoms. for each item, participants choose one response from a group of four statements of increasing severity (e.g., . the shai has demonstrated good reliability, internal consistency, and construct validity (salkovskis et al., ) . all items were summed to create one composite score (ranging from - ), with higher scores indicated greater health anxiety. internal consistency in the present sample was acceptable (α = . ). financial worry was assessed using three items from the family economic strain scale (fess; hilton & devall, ) , which assesses concerns about the availability of finances in the future ("i am afraid that my income will decrease;" "i worry about having money to celebrate holidays and other special occasions;" and "i worry about financial matters"). participants rate items on a -point likert-type scale ranging from (never) to (always). previous research using the full scale has provided evidence for its reliability and construct validity (hilton & devall, ) . all items were summed to create one composite score (ranging from - ), with higher scores indicting greater financial worry. internal consistency of the items used in this study were acceptance (α = ). the ucla loneliness scale -version (uls- ; russell, ) is a -item self-report measure of perceptions of loneliness and social isolation. participants rate items (e.g., "no one really knows me well;" "i lack companionship;" "there are people i feel close to [reverse scored]") based on how often they apply to themselves on a -point likert-type scale ranging from (never) to (often). higher scores are indicative of greater loneliness. the uls- has demonstrated adequate test-retest reliability and good construct validity (russell, ) . all items were summed to create one composite score (ranging from - ), with higher scores indicating greater loneliness. internal consistency in the present sample was acceptable (α = . ). perceived availability of social support was assessed using the multidimensional scale of perceived social support (mspss; zimet et al., ) . the mspss is a -item measure designed to assess perceived availability of social support from three primary sources: family (e.g., " i can talk about my problems with my family"), friends (e.g., "i can count on my friends when things go wrong"), and significant others/special persons (e.g., "there is a special person who is around when i am in need"). participants rate items on a -point likerttype scale ranging from (very strongly disagree) to (very strongly agree). the mspss has demonstrated good test-retest reliability and discriminant and construct validity (zimet et al., ) . all items were summed to create one composite score (ranging from - ), with higher scores indicating greater social support. internal consistency in the present sample was acceptable (α = . ). descriptive statistics for the primary variables of interest (stay-athome order status, perceived impact of covid- , depression symptom severity, health anxiety, financial worry, loneliness, and social support) were computed, as were point-biserial and pearson product-moment correlations to examine zero-order associations among variables. next, a series of hierarchical linear regression analyses were conducted to evaluate hypotheses. demographic variables (i.e., age, sex, racial/ ethnic background [racial/ethnic minority vs. non-minority], income level [< $ , /year vs. ≤ $ , /year], and whether participants lived alone or with others) relevant to the outcome variables were entered in the first step of each model. stay-at-home order status and perceived impact of covid- (centered) were entered in the second step of each model, followed by the product of these variables in the third step. depression symptom severity, health anxiety, financial worry, loneliness, and social support served as dependent variables. given that five regression models were conducted, p was set at . . unstandardized betas are presented to allow evaluation of effect size. a power analysis demonstrated that a sample size of offered sufficient power (≥ . ) to detect a medium effect with an alpha level of p = . (faul et al., ). at the time of data collection, . % (n = ) of participants were living in states with active stay-at-home orders. participants living in states with stay-at-home orders had been under these orders for an average of . days (sd = . ). descriptive data for and correlations among the primary variables of interest are presented in table . of note, one participant did not complete the perceived impact of covid- item and another did not complete the financial worry items. outcomes for all regression models evaluating hypotheses are presented in table . the overall model was significant, accounting for % of the variance in depression symptom severity, f ( , ) = . , p < . , f = . . however, neither stay-at-home order status nor perceived impact of covid- accounted for a significant amount of unique variance in depression symptom severity above and beyond the covariates, Δr = . , f ( , ) = . , p = . , f = . , although both age and income level were uniquely negatively associated with depression symptom severity in this step of the model. the addition of the interaction between stay-at-home order status and perceived impact of covid- did not significantly improve the model, Δr = . , f ( , ) = . , p = . , f = . . note. p values are presented in parentheses following the correlation statistic. stay-at-home = "do you live in a state that has instituted a stay-at-home order?" ( = no; = yes); covid- impact = "to what extent has the situation associated with covid- affected the way you live your life?" the overall model was significant, accounting for % of the variance in health anxiety, f ( , ) = . , p < . , f = . . the addition of stay-at-home order status and perceived impact of covid- in the second step of the model accounted for significant variance in health anxiety above and beyond covariates, Δr = . , f ( , ) = . , p < . , f = . , with both stay-at-home order status and perceived impact of covid- demonstrating significant unique positive associations with health anxiety. likewise, female sex was uniquely positively associated with health anxiety and income level was uniquely negatively associated with health anxiety in this step of the model. the addition of the interaction between stay-at-home order status and perceived impact of covid- did not significantly improve the model, Δr = . , f ( , ) = . , p = . , f = . . the overall model was significant, accounting for % of the variance in financial worry, f ( , ) = . , p < . , f = . . stay-athome order status and perceived impact of covid- accounted for significant unique variance in financial worry above and beyond covariates, Δr = . , f ( , ) = . , p < . , f = . , with both stay-at-home order status and perceived impact of covid- emerging as significant unique predictors. in addition, income level was uniquely negatively associated with financial worry in this step of the model. the addition of the interaction between stay-at-home order status and perceived impact of covid- did not significantly improve the model, Δr = . , f ( , ) = . , p = . , f = . . the overall model was significant, accounting for % of the variance in loneliness, f ( , ) = . , p < . , f = . . the addition of stay-at-home order status and perceived impact of covid- in the second step of the model accounted for significant variance in loneliness above and beyond covariates, Δr = . , f ( , ) = . , p < . , f = . . however, whereas stay-at-home order status was significantly positively associated with loneliness, the perceived impact of covid- was significantly negatively associated with loneliness. in addition, income level was uniquely negatively associated with loneliness in this step of the model. the addition of the interaction between stay-at-home order status and perceived impact of covid- did not significantly improve the model, Δr = . , f ( , ) = . , p = . , f = . . the overall model was significant, accounting for % of the variance in perceived social support, f ( , ) = . , p < . , f = . . stay-at-home order status and perceived impact of covid- accounted for significant variance in perceived social support above and beyond the covariates, Δr = . , f ( , ) = . , p < . , f = . . however, only perceived impact of covid- was uniquely associated with perceived social support, and this association was positive (vs. negative as hypothesized). in addition, income level was uniquely positively associated with perceived social support in this step of the model. the addition of the interaction between stay-at-home order status and perceived impact of covid- did not significantly improve the model, Δr = . , f ( , ) = . , p = . , f = . . given evidence of robust age and sex differences in the outcomes of interest (altemus, ; borys & perlman, ; christensen et al., ; luhman & hawkley, ) , as well as evidence that the impact of covid- may vary as a function of age and sex (dowd et al., ; wenham et al., ) , a series of hierarchical linear regression analyses were conducted to explore whether age or sex moderated associations between (a) stay-at-home orders and psychological outcomes ( -way interaction); (b) the perceived impact of covid- and psychological outcomes ( -way interaction); and (c) the interaction of stay-at-home order status and the perceived impact of covid- and psychological outcomes ( -way interaction). none of the examined interactions significantly improved the models. specifically, none of the -way or way interactions involving age accounted for significant variance in any of the psychological outcomes (Δr s = . to . , fs < . , ps > . , fs < . ). likewise, none of the interactions involving sex accounted for significant unique variance in any psychological outcomes (Δr s = . to . , fs < . , ps > . , fs = . ). finally, given that the presence of children in the household could exacerbate some of the negative psychological outcomes associated with covid- and related stay-at-home orders (e.g., health anxiety, financial worries), an exploratory hierarchical linear regression was conducted to examine the main and interactive effects of having children in the home on psychological outcomes. given the overlap table main and interactive associations of stay-at-home order status and perceived impact of covid- to psychological outcomes (n = ). health anxiety financial worry loneliness social support step note. p values listed as . are p < . . race = racial/ethnic background ( = racial/ethnic minority, = non-minority); sex ( = male; = female); income = income level ( = < $ , /year; = < $ , /year); live alone = whether participants live alone or have other individuals in their household ( = live alone; = live with others); stay-at-home = "do you live in a state that has instituted a stay-at-home order?" ( = no; = yes); covid- impact = "to what extent has the situation associated with covid- affected the way you live your life?;" interaction = stay-at-home status × perceived impact of covid- . between variables representing whether participants lived alone and whether participants had children in their home (χ = . , p < . ), the former variable was removed from this model. results revealed no significant unique associations between having children in the home and any of the psychological outcomes of interest (bs = -. to . , ps > . ). likewise, none of the interactions of having children in the home with stay-at-home order status or the perceived impact of covid- were significant in any of the models (Δr s = . to . , fs < . , ps > . , fs < . ). notably, the same pattern of non-significant associations for all main and interactive effects involving having children in the home was found when using a continuous variable reflecting the number of children in the household (vs. the dichotomous variable reflecting the presence or absence of children in the home). the goal of the present study was to examine associations of stay-athome orders and the perceived impact of covid- on daily life to relevant psychological outcomes (i.e., depression, health anxiety, financial worry, perceived social support, and loneliness). study hypotheses were partially supported. although the interaction of stay-athome order status and the perceived impact of covid- on daily life did not account for significant variance in any of the outcomes, each of these factors was independently associated with several psychological outcomes. as predicted, being under a stay-at-home order was associated with greater health anxiety, financial worry, and loneliness, consistent with the theorized unintended negative consequences of such orders (reger et al., ) and past research on the psychological consequences of quarantine during a pandemic (brooks et al., ) . moreover, consistent with research on the psychological consequences of covid- in china (cao et al., ; wang et al., ; zhang et al., ) and past research on the psychological consequences of other pandemics (tausczik et al., ; wheaton et al., ) , the perceived impact of covid- on daily life was associated with greater health anxiety and financial worry. contrary to predictions, the perceived impact of covid- was negatively associated with loneliness and positively associated with social support. stay-at-home orders or experiencing changes to daily life habits due to covid- may increase perceptions of risk for harm to one's physical, social, and financial health, resulting in increased health anxiety and financial worry. moreover, stay-at-home orders may result in sudden changes to one's social life. reduced contact with once common social connections may initially bring about increased feelings of loneliness and social isolation. however, findings also suggest that one potential positive outcome of this pandemic may be an increase in social support seeking or connectedness as individuals try to adjust to changes in daily life. although being under a stay-at-home order was associated with increased loneliness, the perception that covid- had a greater impact on one's daily life was associated with increased social support and reduced loneliness. these findings are consistent with suggestions that the wide-spread shared experience of covid- may increase closeness and social cohesion (courtet et al., ) , similar to what has been observed in past mass tragedies (calo-blanco et al., ; hawdon & ryan, ) . notably, despite evidence that the impact of covid- may vary as a function of age and sex (dowd et al., ; wenham et al., ) , results revealed few associations between age or sex and the psychological outcomes of interest. likewise, none of the examined associations of stay-at-home order status or the perceived impact of covid- on daily life with psychological outcomes varied as a function of age or sex. together, these results suggest that the associations of stay-at-home orders and the perceived impact of covid- with psychological outcomesat least in the early stages of this pandemic and related public health interventionsdo not differ as a function of age or sex. however, whether these associations will become stronger for individuals of a particular sex or age group as the pandemic persists remains to be determined. conversely, income level was uniquely inversely associated with health anxiety, financial worry, and loneliness, and uniquely positively associated with perceived social support. as such, these findings suggest that individuals with lower incomes may be particularly at-risk for the negative psychological outcomes of covid- and related social and economic consequences. as this pandemic and related social distancing interventions persist (even if to a lesser degree), widespread interventions focused on promoting mental health and well-being (including a sense of connection) among less financially secure individuals are also needed. study limitations warrant consideration. the use of cross-sectional data precludes conclusions about the nature or direction of the associations examined. we also do not know the extent with which these psychological symptoms existed prior to covid- and the implementation of stay-at-home orders. likewise, self-report questionnaires may be influenced by social desirability or recall difficulties that could affect the validity of provided data. future studies would benefit from incorporating structured clinical interviews and/or timeline follow-back procedures to assess psychological symptoms and their temporal relation to physical distancing or covid- -related stressors. given our recruitment methods and sample (relatively non-diverse selfselected mturk workers), results may not generalize to the larger u.s. population, other countries, or vulnerable populations (e.g., individuals with chronic medical conditions; health care workers; hospitalized patients). replication of findings is needed within other samples and populations. in addition, results only speak to the early associations of stay-athome orders and the perceived impact of covid- to psychological outcomes, and these variables accounted for only a modest amount of the variance in the examined outcomes. longer-term prospective studies are needed to evaluate if the observed relations increase or decrease in magnitude as the pandemic continues. indeed, studies on the trajectory of psychological symptoms over the course of past pandemics have found that, although initial reactions tend to be characterized by elevated levels of anxiety and worry, these symptoms tend to decrease over the course of the pandemic (jones & salathé, ; tausczik et al., ) . given the relatively high mortality rate associated with covid- , the lack of adequate testing in some countries, and the absence of effective pharmaceutical interventions for covid- , it remains to be seen whether a similar trajectory will occur with the current pandemic. finally, it will be important for future research to examine the relation of these psychological outcomes to future adaptive and maladaptive behaviors. for example, individuals with elevated health anxiety may engage in greater help-seeking behavior (e.g., visiting emergency rooms, visiting multiple doctors), taxing health care resources. alternatively, health anxiety may be associated with the avoidance of seeking out care due to fears of contagion, potentially putting the individual's physical health at risk if they are infected with covid- or suffering from another medical problem that requires attention (asmundson & taylor, ) . likewise, loneliness may contribute to alcohol abuse (Åkerlind & hörnquist, ) or increased suicide risk (calati et al., ; joiner et al., ) . despite limitations, results of this study highlight associations between stay-at-home orders, the perceived impact of covid- on an individual's life, and a variety of positive and negative psychological outcomes. in the absence of effective infection prevention efforts, widespread testing and tracking, and/or pharmacological interventions (e.g., vaccines) for covid- , large-scale public health interventions such as physical distancing or stay-at-home orders are necessary to reduce the spread of the virus and infection-related mortality. however, in the context of these necessary public health interventions, results of this study highlight the need for concurrent psychological interventions aimed at mitigating the potential negative psychological consequences of covid- and related social distancing interventions, including interventions aimed at increasing social connection and social support (reger et al., ) . in particular, as this pandemic persists, it is imperative that evidence-based tele-mental health services are made available and accessible to vulnerable individuals throughout the duration of stay-at-home orders and other social distancing interventions (reger et al., ) . the short health anxiety inventory: psychometric properties and construct validity in a non-clinical sample effectiveness of workplace social distancing measures in reducing influenza transmission: a systematic review loneliness and alcohol abuse: a review of evidences of an interplay sex differences in depression and anxiety disorders: potential biological determinants how health anxiety influences responses to viral outbreaks like covid- : what all decision-makers, health authorities, and health care professionals need to know gender differences in loneliness the psychological impact of quarantine and how to reduce it: rapid review of the evidence amazon's mechanical turk: a new source of inexpensive, yet high-quality, data? suicidal thoughts and behaviors and social isolation: a narrative review of the literature natural disasters and indicators of social cohesion the psychological impact of the covid- epidemic on college students in china social and economic impact of school closure resulting from pandemic influenza a/h n age differences in depression and anxiety symptoms: a structural equation modelling analysis of data from a general population sample keep socially (but not physically) connected and carry on: preventing suicide in the age of covid- demographic science aids in understanding the spread and fatality rates of covid- statistical power analyses using g* power . : tests for correlation and regression analyses estimating the number of infections and impact of non-pharmaceutical interventions on covid- in european countries. imperial college covid- response team social relations that generate and sustain solidarity after a mass tragedy sars control and psychological effects of quarantine the family economic strain scale: development and evaluation of the instrument with single-and two-parent families the effects of school closures on influenza outbreaks and pandemics: systematic review of simulation studies nonsuicidal self-injury, suicidal behavior, and their co-occurrence as viewed through the lens of the interpersonal theory of suicide early assessment of anxiety and behavioral response to novel swine-origin influenza a (h n ) incubation period and other epidemiological characteristics of novel coronavirus infections with right truncation: a statistical analysis of publicly available case data the structure of negative emotional states: comparison of the depression anxiety stress scales (dass) with the beck depression and anxiety inventories age differences in loneliness from late adolescence to oldest old age see which states and cities have told residents to stay at home suicide mortality and coronavirus disease -a perfect storm? jama psychiatry published online ucla loneliness scale (version ): reliability, validity, and factor structure the health anxiety inventory: development and validation of scales for the measurement of health anxiety and hypochondriasis covid- infection: origin, transmission, and characteristics of human coronaviruses public anxiety and information seeking following the h n outbreak: blogs, newspaper articles, and wikipedia visits social distancing and mobility reductions have reduced covid- transmission in king county, wa. report prepared by institute for disease modeling the benefits and costs of flattening the curve for covid- immediate psychological responses and associated factors during the initial stage of the coronavirus disease (covid- ) epidemic among the general population in china covid- : the gendered impacts of the outbreak psychological predictors of anxiety in response to the h n (swine flu) pandemic world health organization unprecedented disruption of lives and work: health, distress, and life satisfaction of working adults in china one month into the covid- outbreak the multidimensional scale of perceived social support m. t. tull and k. l. gratz developed the study concept. m. t. tull, k. l. gratz, j. p. rose, k. edmonds, and j. richmond designed the study. k. scamaldo and k. edmonds collected the data. m. t. tull analyzed the data, with assistance from j. richmond and k. scamaldo. m. t. tull, k. edmonds, k. scamaldo, and j. richmond drafted the manuscript, and k. l. gratz and j. p. rose provided critical revisions. all authors approved the final manuscript for submission. authors have no conflicts of interest to declare. supplementary material associated with this article can be found, in the online version, at doi: . /j.psychres. . . key: cord- -jjdkwalk authors: moretti, antimo; menna, fabrizio; aulicino, milena; paoletta, marco; liguori, sara; iolascon, giovanni title: characterization of home working population during covid- emergency: a cross-sectional analysis date: - - journal: int j environ res public health doi: . /ijerph sha: doc_id: cord_uid: jjdkwalk evidence about the characterization of home workers in terms of both work-related outcomes and health issues is lacking. the purpose of this cross-sectional study was to examine the impact of home working on perceived job productivity and satisfaction, work-related stress, and musculoskeletal (msk) issues. we included mobile workers, collecting data about demographic characteristics, working experience, job productivity, and stress. job satisfaction was assessed through the utrecht work engagement scale (uwes), while msk pain was investigated by the brief pain inventory (bpi) and fear avoidance beliefs questionnaire (fabq). moreover, a home workplace analysis had to be carried out according to current italian regulations. participants declared that they were less productive ( . %) but less stressed ( . %) and equally satisfied ( %) compared to the time of office working. regarding msk disorders, low back pain (lbp) was referred by . % of home workers and neck pain by . % of them. neck pain worsened in % of home workers, while lbp did not exacerbate in . % of cases. home workers with msk pain reported a lower job satisfaction. depending on our data, the home environment seems to be not adequate in the mobile worker population, with an increased risk for mental health and msk problems, particularly affecting the spine. addressing these issues can significantly reduce risks for health, thus, improving job productivity and satisfaction and reducing cost. the covid- health emergency has profoundly changed working life. to minimize physical contact among individuals and prevent new infections, many companies implemented "mobile working" or "home working" or "remote working", a form of carrying out a job without specific place of work restrictions, with the possible use of technological tools [ ] . in , italy had the lowest percentage of remote workers across all europe [ ] , and this percentage amounted to about % of total employment at the end of april . during the covid- pandemic, the number of remote workers increased by % in italy, while it has been estimated that about % of the worldwide workforce has been affected by workplace changes [ ] . for most remote employees, it has probably been the first experience. among advantages, there are reduced commuting time, possible productivity gains, increased staff motivation, better work-life balance, and better control over time schedule, while among disadvantages there are difficulties monitoring performance, cost of working from home, communication problems, no clear separation between home and work tasks, and unsuitability with all works [ , ] . the home environment is likely to be faulty in many aspects in comparison to the workplace. in particular, the absence of ergonomic office furniture at home may impede the adoption of a healthy posture and may promote the onset of musculoskeletal (msk) disorders [ , ] . working in a sedentary position for prolonged periods increases the risk of neck pain and/or low back pain (lbp) [ , ] . home working may cause also stress, anxiety, and isolation, which influences job effectiveness, well-being, and work-life balance [ , ] . even if the effects of home working on various aspects (e.g., quality of life, health and safety, and productivity) have been also investigated, this research area is still developing. whilst the psychological benefits of home working-e.g., higher work engagement, work-related flow, and connectivity among staff-can attract many organizations to consider its implementation, the negative impacts such as blurred work-home boundary, fatigue, and mental demands should be addressed when/if home working is implemented [ ] . for many workers, the opportunity to work from a home office makes everyday life easier. among positive effects the most expected are higher efficiency at work, better concentration, reduction of psychological stress, and a better family life [ ] . working at home permits a better work-life balance, and this is important for workers caring for sick family members or children, but this results in little time for personal leisure activities [ , ] . on the other side, there are negative effects associated with remote working. for example, it has been found that home workers experience overlaps between work and home lives [ ] . moreover, they often experienced increased irritability and negative emotions, which were attributed to social isolation and being unable to share the troubles at work and find possible solutions with colleagues [ ] . however, studies concerning the characterization of the mobile worker population in terms of both work-related outcomes and health issues are lacking. the aim of this study is to investigate the role of home working on job satisfaction, occupational stress, perceived productivity, and msk issues. a population of mobile workers was included in the present cross-sectional study. participants were contacted by phone; they received a full explanation of the study and signed an informed consent about privacy regulations regarding their personal data. all individuals were employed as administrative officers that moved to work remotely since the beginning of covid- health emergency. office work lasted for h a day, with a h lunch break. this study was conducted in accordance with the declaration of helsinki and its later amendments. we prepared a questionnaire consisting of items. we investigated employees' subjective data such as age, gender, weight, height, education, job levels, and cohabitants, in particular children. subsequently, we asked participants about their previous remote working experience, focusing on the kind of job and its differences from traditional work (tasks, schedule, and salary). we also included questions about productivity, work-related stress, and job satisfaction. in particular, we asked about factors that might improve productivity (saved travel time to go to the office, time flexibility, autonomy, reconciliation of work life with personal and family life, enhanced attention) or might decrease it (distractions in the domestic environment such as children to look after, planning difficulties, impaired interaction with colleagues, technical failures). for questions about advantages and disadvantages of working at home on job productivity, it was possible to choose multiple answers. finally, the workers were asked whether they would continue working remotely after the end of the covid- emergency. low back pain was assessed by the brief pain inventory (bpi) [ ] . the pain intensity section of the bpi is composed by four items that are scored from (no pain) to (worst pain), while the functional interference section is composed by seven items that are scored from (no interference with activities of daily living, adls) to (total interference). the severity index is calculated on the basis of the mean of the four pain intensity items, and interference index is calculated from the mean of the seven pain interference items. workers' beliefs about how physical activity and work affect lbp and neck pain were rated using the fear avoidance belief questionnaire (fabq), which consists of items investigating how physical activity and work affect employees' pain [ ] . the fabq physical activity (fabq-pa) evaluates atti tudes and beliefs related to general physical activities (five items, range - ), and the fabq work (fabq-w) assesses attitudes and beliefs related to occupational activities (eleven items, range - ). each item is scored from ("do not agree at all") to ("completely agree"). the overall score is calculated by adding fabq-pa and fabq-w scores (range - ). job satisfaction was assessed by the utrecht work engagement scale (uwes) [ ] . this tool includes items divided into three dimensions (i.e., vigor, dedication, and absorption). items were measured on a -point rating scale, from (never) to (always). participants were asked about structural aspects of their workplace at home: chair (adjustable seat height, back height, back inclination), table (type, height), type of computer (desktop/laptop), monitor (adjustable in inclination, height, rotation), eye distance from the monitor, presence of external keyboard and its distance from the edge of the table, presence of a footstool. presence of breaks and periods with increasing amount of work were also investigated. for the general health risk assessment, we referred to current regulations and the italian organization for standardization (uni) standards (uni en - -"office work chairs-dimensions-determination of dimensions"; uni en - "office furniture-work tables and desks-dimensions"; uni -a "indoor lighting with artificial light") ( figure ). descriptive statistical analy sis was performed using the spss v. . software (spss inc.; chicago, il, usa). continuous variables are expressed as means ± standard deviations, while categorical ones are reported as absolute values and percentages, whereas the ordinal data are represented as medians. we performed the shapiro-wilk normality test for all the continuous data. if data followed a normal distribution, the student's t test was used to compare data across groups; if not, the two-sample wilcoxon rank-sum (mann-whitney) test was used when appropriate. statistical tests were carried out on a two-sided significance level of . . a total of home workers were included. the mean age was . ± . years, and the percentage of women was . %. most of the participants had three or more cohabitants ( . %), but only . % had children to look after. fifty-five percent of workers had a second level degree. the main population characteristics are reported in table . in % of cases, no differences were recorded between home and office working in terms of tasks, schedule, and salary. thirty-nine percent of the subjects self-perceived to be less productive but less stressed, while % were equally satisfied. among mobile working advantages, the most appreciated was saved travel time ( . %) and the least appreciated was greater autonomy ( . %). impaired interaction with colleagues ( . %) and distractions in the domestic environment ( . %) were judged to be the worst disadvantages. thirty-nine percent of employees stated that they would like to continue working at home only occasionally. characteristics and quality of remote work are showed in table . note: values are expressed as counts (percentages). * for these items, more than one answer was possible. concerning health problems, . % of participants reported msk pain, most frequently at the low back ( . %) or neck ( . %), and . % in multiple sites (table ) . pain severity and pain interference during everyday activities have been found slightly higher for neck pain compared to lbp (table ). in the fabq subscales, the mean score was higher in the work component than in the physical activity component for subjects affected by lbp or neck pain. moreover, workers with neck pain reported a higher mean score on the fabq work component than those with lbp (table ) . worsening of previous neck pain was reported by % of participants, while in . % an improvement of neck pain occurred. in . % of subjects, there was no exacerbation of lbp since they work remotely, whereas . % reported an increase of lbp severity, and only . % showed pain improvement (table ). home workers without pain reported a significantly higher job satisfaction assessed by uwes than those with pain (p = . ) ( table ) . regarding structural aspects of the home workplace (tables and ), most of the participants reported using a conventional four-leg kitchen chair ( . %), and that the seat was not adjustable in height ( . %). in most cases, the back was concave ( . %), not adjustable in height ( . %) or inclination ( . %). although most workers used a worktable with height ± . cm (home table) the number of home workers who used a desktop computer was higher ( . %), with monitor adjustable in height only for . %. in two-thirds of cases, eye distance from the monitor was - cm. external keyboard was used by . % of individuals, and in almost all workers ( . %) there was enough space for the upper limbs as the keyboard was positioned cm away from the table edge. nobody used a footstool. forty-one percent used a laptop. finally, all participants reported taking self-managed breaks. periods with increasing amount of work were reported by % of home workers. to the best of our knowledge, this is the first study investigating how home workers set up their home workplace and the impact of existing equipment on msk health. moreover, no previous study had ever measured mobile working-related job satisfaction on a specific scale. we characterized a population of mobile workers in terms of work-related outcomes, such as perceived productivity and job satisfaction, and onset or changes of previous msk disorders, particularly lbp and neck pain. over % of workers reported no difference in tasks, although . % had a different schedule, with % of the population declaring, surprisingly, less than working hours per week, according to regular hours of employment for office workers in italy. in our population, working at home resulted in relevant productivity changes (a decrease in . % and an increase in . % of participants). these data are in contradiction with results publicized by flexjobs' th annual survey, where about % of workers assessed their productivity as higher at home than in a traditional office [ ] . the reduction of productivity in our study could be explained by the presence of distractions in the domestic environment and impaired interaction with colleagues, whereas in participants reporting increasing productivity, a main role may be played by reduced stress and/or commuting time. in our population, about half of the participants did not report any variation in job satisfaction between remote and office work. this finding might likely be due to unchanged job type and amount during the home working period. our data are consistent with that of other studies [ , ] demonstrating a negative correlation between job satisfaction and the increased amount of home working. forced social isolation coupled with a marked reduction in physical activity could negatively impact both physical and mental health [ ] [ ] [ ] . therefore, remote working seems to also be associated with an increased risk of mental and physical health issues. regarding occupational stress, no significant change occurred in mobile workers, considering that . % of participants declared a reduced stress level since they work remotely, . % reported an unchanged level, and one-third of subjects experienced increased stress. on the contrary, in the research conducted by the international labour organization and eurofound, about % of home workers declared that they felt stressed compared with % of their colleagues who work in the office [ ] . the stress reduction reported in our study could be due to saved travel time to go to the office, higher time flexibility, and better family life. concerning physical health issues related to remote working, increased sedentariness and poor posture due to the use of non-ergonomic equipment in our population seemed to promote the onset of msk disorders, particularly lbp and neck pain. this finding is not surprising, considering that spine pain is one of the most frequent health problems in the working-age population worldwide. according to a recent study, the prevalence and incidence of lbp ranged from . % to % and from . % to %, respectively, in workers [ ] . the overall mean prevalence of neck pain in the general population is . % [ ] , with a higher incidence in office and computer workers [ ] . italian estimated lifetime prevalence is % for lbp and % for neck pain [ ] . literature offers controversial evidence about the relationship between lbp and sedentary jobs. it has been argued that the risk of lbp seems to increase when office workers stay seated for more than h per day. however, no significant association between sitting itself and the risk of lbp has been demonstrated [ ] . this finding could be explained by the multifactorial nature of lbp [ ] . the incidence of this condition is significantly associated with anthropometric, ergonomic, and psychosocial factors, in particular age, gender, body mass index, body distance from computer screen, adjustable back support, body position while sitting, job satisfaction, and repetitive work [ ] . as stated by burdorf et al., a sustained sedentary job in a forced non-neutral trunk posture is a risk factor for lbp [ ] . due to low-grade activation of lumbar muscles while sitting, the load is conducted by passive structures such as ligaments and intervertebral discs. because of the viscoelasticity of these structures and deactivation of lumbar muscles, the lumbar spine may be predisposed to deconditioning and lbp [ ] . similarly, while an association between the increased use of computers and work-related neck pain has been observed, it is unclear whether this is a causal relationship, considering the complex etiology of neck pain that comprises physical, psychological, and environmental factors [ ] . office workers with neck pain usually show limited range of motion of the cervical spine and enhanced activity of the cervical flexors and cervical extensors muscles [ ] , which might prolong neck pain. a comfortable workplace may help in preventing msk disorders. some experts recommend [ ] that the worktable and chair must be adjustable in height so that the feet are supported to be always well placed on the ground. in the absence of a height-adjustable chair, the use of a footrest is recommended. moreover, the monitor must be at the appropriate eye level so as not to force a persistent head tilt. in our study, we found that most of the participants used a common kitchen chair, not adjustable in height, and nobody used a footrest during working hours. therefore, these factors may contribute to lbp, although no relevant changes in the onset and/or worsening of this condition were reported in our population. on the other side, both frequency ( . %) and worsening ( %) of neck pain were stepped up in workers who used laptops without any height-adjustable support. however, pain intensity and interference with adl (bpi scores) seemed to be negligible in home workers with lbp or neck pain. furthermore, the work component of fabq in people reporting low back and neck pain was mild. these data testify that remote working seems to not significantly affect spine pain, probably because subjects were practicing this job type since about months, a too brief period to produce the putative adverse effects of prolonged use of non-ergonomic equipment. according to a national survey [ ] , lbp and neck pain got worse during the lockdown, and % of individuals attributed this worsening to home working. our results are consistent with these data only for neck pain, while the participants have not declared a worsening of lbp during home working period. furthermore, participants with pain were less satisfied with working at home. however, . % of participants expressed the wish to continue remote working in the future, at least occasionally. the first limitation of our study is the small sample size, which can lead to unpersuasive findings. second, our results refer to italian workers from the campania region, so they may be not generalizable across different regions or countries. third, the cross-sectional design is not able to establish a cause-effect relationship because exposure and outcome are simultaneously assessed. finally, productivity, satisfaction, and msk issues in workers often have a variety of simultaneous influences that need to be accounted for. in the face of increasing use of home working, we did not find an adequate home environment, with a higher risk for health issues, particularly affecting the spine. our study suggests solutions for adapting the home environment, such as adjustable seating and worktable, which in our opinion can significantly reduce risks for health. this would lead to better productivity, lower costs, and enhanced job satisfaction. our results show reduced remote workers' perception about productivity. effective organization of the working day at home may improve job performance. it could be nice to make a list of daily goals, to create a space specifically reserved for work, and to reduce sources of distraction (i.e., by family members). in our perspective, management strategies should be provided to enhance productivity, particularly by adapting the home environment to allow comfortable working posture (height-adjustable chairs, tables, and monitors). these adjustments might lead to improving overall health and job performance. the covid- outbreak and social distancing have radically changed the work organization. current research investigated the impact of mobile working on work-related outcomes, mental health, and msk issues. in this survey, we have investigated for the first time how remote workers set up their home workplace and the impact of existing equipment on lbp and neck pain. in our study, home workers perceived themselves to be less productive, less stressed, and equally satisfied compared to their office working period. remote workers appreciated particularly saved travel time to go to work and were not pleased to be isolated from colleagues. the use of non-ergonomic equipment (conventional four-leg kitchen chair not adjustable in height, not height-adjustable monitor, the absence of a footstool) may increase msk disorders. most participants complained of worsening of neck pain, but no exacerbation of lbp was reported, probably due to the short duration of the study. moreover, our results suggest that msk disorders related to remote working might reduce job satisfaction. data provided by this survey would be useful to improve the home working environment and time organization in order to promote the mental and physical health of remote workers. further studies with a greater sample size are needed to examine, in a longer time span, the risks for msk well-being and the health-related burden of home working. funding: the authors would like to acknowledge the vanvitelli per la ricerca (valere) program for the allocation of funding that aims to publish university of campania "luigi vanvitelli" research products. the authors declare no conflict of interest regarding this study. eurofound and the international labour office. working anytime, anywhere: the effects on the world of work european union: luxembourg; the international labour office covid- and work from home: digital transformation of the workforce the balance careers. the pros and cons of a flexible work schedule employees working from home effectiveness of an ergonomic intervention on work-related posture and low back pain in video display terminal operators: a year cross-over trial mechanical low back pain the burden and determinants of neck pain in workers the short term musculoskeletal and cognitive effects of prolonged sitting during office computer work american psychiatric association foundation an exploration of the psychological factors affecting remote e-worker's job effectiveness, well-being and work-life balance psychological impacts of the new ways of working (nww): a systematic review impacts of home-based telework on quality of life for employees and their partners. quantitative and qualitative results from a european survey i'm home for the kids: contradictory implications for work-life balance of teleworking mothers working from home: characteristics and outcomes of telework the telework tradeoff: stress mitigation vs constrained restoration the psychological impact of teleworking: stress, emotions and health a validation study of an italian version of the brief pain inventory (breve questionario per la valutazione del dolore) the italian version of the fear-avoidance beliefs questionnaire (fabq-i): cross-cultural adaptation, factor analysis, reliability, validity, and sensitivity to change the measurement of work engagement with a short questionnaire annual survey finds workers are more productive at home the impact of extent of telecommuting on job satisfaction. resolving inconsistent findings the role of relationships in understanding telecommuter satisfaction employment impact of covid- crisis: from short term effects to long terms prospects the outbreak of covid- coronavirus and its impact on global mental health covid- and public administration: implications of smart working for management and workers' mental health real-world incidence and prevalence of low back pain using routinely collected data global, regional, and national burden of neck pain in the general population the epidemiology of neck pain social cost of chronic pain in italy low back pain and its relationship with sitting behaviour among sedentary office workers simulation of multifactorial causes of low back pain prevalence of low back pain in greek public office workers occupational risk factors for low back pain among sedentary workers lumbar posture and muscular activity while sitting during office work perceived muscular tension, job strain, physical exposure, and associations with neck pain among vdu users; a prospective cohort study neck movement and muscle activity characteristics in female office workers with neck pain your how-to guide. mayo foundation for medical education and research il mal di schiena è stato il disturbo più diffuso durante il lockdown, ne ha sofferto italiano su federchimica assosalute-associazione nazionale farmaci di automedicazione this article is an open access article distributed under the terms and conditions of the creative commons attribution (cc by) license key: cord- - ub xzsv authors: ralph, paul; baltes, sebastian; adisaputri, gianisa; torkar, richard; kovalenko, vladimir; kalinowski, marcos; novielli, nicole; yoo, shin; devroey, xavier; tan, xin; zhou, minghui; turhan, burak; hoda, rashina; hata, hideaki; robles, gregorio; milani fard, amin; alkadhi, rana title: pandemic programming: how covid- affects software developers and how their organizations can help date: - - journal: empir softw eng doi: . /s - - -y sha: doc_id: cord_uid: ub xzsv context: as a novel coronavirus swept the world in early , thousands of software developers began working from home. many did so on short notice, under difficult and stressful conditions. objective: this study investigates the effects of the pandemic on developers’ wellbeing and productivity. method: a questionnaire survey was created mainly from existing, validated scales and translated into languages. the data was analyzed using non-parametric inferential statistics and structural equation modeling. results: the questionnaire received usable responses from countries. factor analysis supported the validity of the scales and the structural model achieved a good fit (cfi = . , rmsea = . , srmr = . ). confirmatory results include: ( ) the pandemic has had a negative effect on developers’ wellbeing and productivity; ( ) productivity and wellbeing are closely related; ( ) disaster preparedness, fear related to the pandemic and home office ergonomics all affect wellbeing or productivity. exploratory analysis suggests that: ( ) women, parents and people with disabilities may be disproportionately affected; ( ) different people need different kinds of support. conclusions: to improve employee productivity, software companies should focus on maximizing employee wellbeing and improving the ergonomics of employees’ home offices. women, parents and disabled persons may require extra support. in december , a novel coronavirus disease emerged in wuhan, china. while symptoms vary, covid- often produces fever, cough, shortness of breath, and in some cases, pneumonia and death. by april , , the world health organization (who) recorded more than million confirmed cases and , deaths (who a). with wide-spread transmissions in countries, territories or areas, the who declared it a public health emergency of international concern (who b) and many jurisdictions declared states of emergency or lockdowns (kaplan et al. ) . many technology companies told their employees to work from home (duffy ) . thinking of this situation as a global natural experiment in working from home-the event that would irrefutably verify the benefits of working from home-would be naïve. this is not normal working from home. this is attempting to work from home, unexpectedly, during an unprecedented crisis. the normal benefits of working from home may not apply (donnelly and proctor-thomson ) . rather than working in a remote office or well-appointed home office, some people are working in bedrooms, at kitchen tables and on sofas while partners, children, siblings, parents, roommates, and pets distract them. others are isolated in a studio or one-bedroom apartment. with schools and childcare closed, many parents juggle work with not only childcare but also home schooling or monitoring remote schooling activities and keeping children engaged. some professionals have the virus or are caring for ill family members. quarantine work !== remote work. i've been working remotely with success for years, and i've never been close to burn out. i've been working quarantined for over a month and i'm feeling a tinge if burn out for the first time in my life. take care of yourself folks. really. -scott hanselman (@shanselman), april , while numerous studies have investigated remote work, few investigate working from home during disasters. there are no modern studies of working from home during a pandemic of this magnitude because there has not been a pandemic of this magnitude since before there was a world wide web. therefore, software companies have limited evidence on how to support their workers through this crisis, which raises the following research question. research question: how is working from home during the covid- pandemic affecting software developers' emotional wellbeing and productivity? to address this question, we generate and evaluate a theoretical model for explaining and predicting changes in wellbeing and productivity while working from home during a crisis. moreover, we provide recommendations for professionals and organizations to support employees who are working from home due to covid- or future disasters. to fully understand this study, we need to review several areas of related work: pandemics, bioevents and disasters; working from home; and productivity and wellbeing. madhav et al. ( ) defines pandemics as "large-scale outbreaks of infectious disease over a wide geographic area that can greatly increase morbidity and mortality and cause significant economic, social, and political disruption" (p. ). pandemics can be very stressful not only for those who become infected but also for those caring for the infected and worrying about the health of themselves, their families and their friends (kim et al. ; prati et al. ) . in a recent poll, "half of canadians ( %) report[ed] a worsening of their mental health" during the covid- lockdown (ari ). in australia, the pandemic appears to have doubled the incidence of mental health problems (fisher et al. ) . a pandemic can be mitigated in several ways including social distancing (anderson et al. ) : "a set of practices that aim to reduce disease transmission through physical separation of individuals in community settings" (p. - rebmann ), including public facility shutdowns, home quarantine, cancelling large public gatherings, working from home, reducing the number of workers in the same place at the same time and maintaining a distance of at least . - m between people (rebmann ; anderson et al. ) . the extent to which individuals comply with recommendations varies significantly and is affected by many factors. people are more likely to comply when they have more selfefficacy; that is, confidence that they can stay at home or keep working during the pandemic, and when they perceive the risks as high (teasdale et al. ) . however, this "threat appraisal" depends on: the psychological process of quantifying risk, sociocultural perspectives (e.g. one's worldview and beliefs; how worried one's friends are), "illusiveness of preparedness" (e.g. fatalistic attitudes and denial), beliefs about who is responsible for mitigating risks (e.g. individuals or governments) and how prepared one feels (yong et al. (yong et al. , prati et al. ) . people are less likely to comply when they are facing loss of income, personal logistical problems (e.g. how to get groceries), isolation, and psychological stress (e.g. fear, boredom, frustration, stigma) (digiovanni et al. ). barriers to following recommendations include job insecurity, lack of childcare, guilt and anxiety about work not being completed, and the personal cost of following government advice (teasdale et al. ; blake et al. ) . for employees, experiencing negative life events such as disasters is associated with absenteeism and lower quality of workdays (north et al. ) . employers therefore need work-specific strategies and support for their employees. employers can give employees a sense of security and help them return to work by continuing to pay full salaries on time, reassuring employees they they are not going to lose their job, having flexible work demands, implementing an organized communication strategy, and ensuring access to utilities (e.g. telephone, internet, water, electricity, sanitation) and organisational resources (north et al. ; donnelly and proctor-thomson ; blake et al. ) . work-specific strategies and support are also needed to ensure business continuation and survival. the disruption of activities in disasters simultaneously curtails revenues and reduces productive capacity due to the ambiguity and priorities shifting in individuals, organizations and communities (donnelly and proctor-thomson ) . as social distancing closes worksites and reduces commerce, governments face increased economic pressure to end social distancing requirements prematurely (loose et al. ) . maintaining remote workers' health and productivity is therefore important for maintaining social distancing as long as is necessary (blake et al. ) . as we prepare this article, many other studies of the covid- pandemic's effects are underway. early evidence suggests complicated effects on productivity, which vary by person, project and metric (bao et al. ) . some evidence suggests programmers are working longer hours, at an unsustainable pace (forsgren ). pérez et al. ( ) defines teleworking (also called remote working) as "organisation of work by using information and communication technologies that enable employees and managers to access their labour activities from remote locations" (p. ). it includes working from home, a satellite office, a telework centre or even a coffee shop. remote working can help restore and maintain operational capacity and essential services during and after disasters (blake et al. ) , especially when workplaces are inaccessible. indeed, many executives are already planning to shift "at least % of previously on-site employees to permanently remote positions post-covid " (lavelle ) . however, many organizations lack appropriate plans, supportive policies, resources or management practices for practising home-based telework. in disasters such as pandemics where public facilities are closed and people are required to stay at home, their experience and capacity to work can be limited by lack of dedicated workspace at home, caring responsibilities and organizational resources (donnelly and proctor-thomson ) . in general, working from home is often claimed to improve productivity (davenport and pearlson ; mcinerney ; cascio ) and teleworkers consistently report increased perceived productivity (duxbury et al. ; baruch ) . interestingly, baker et al. ( ) found that organizational and job-related factors (e.g. management culture, human resources support, structure of feedback) are more likely to affect teleworking employees' satisfaction and perceived productivity than work styles (e.g. planning vs. improvising) and household characteristics (e.g. number of children). while increasing productivity, "working from home is associated with greater levels of both work pressure and work-life conflict" (russell et al. ) because work intrudes into developers' home lives through working unpaid overtime, thinking about work in off hours, exhaustion and sleeplessness (hyman et al. ) . moreover, individuals' wellbeing while working remotely is influenced by their emotional stability (that is, a person's ability to control their emotions when stressed). for people with high emotional stability, working from home provides more autonomy and fosters wellbeing; however, for employees with low emotional stability, it can exacerbate physical, social and psychological strain (perry et al. ) . the covid- pandemic has not been good for emotional stability (ari ). research on working from home has been criticized for relying on self-reports of perceived productivity, which may inflate its benefits (bailey and kurland ) ; however, objective measures often lack construct validity (ralph and tempero ) and perceived productivity correlates well with managers' appraisals (baruch ) . (the perceived productivity scale we use below correlates well with objective performance data; cf. section . ). previous studies suggest that productivity affects project outcomes and is affected by numerous factors including team size and technologies used (mcleod and macdonell ) . however, existing research on developer productivity is rife with construct validity problems. productivity is the amount of work done per unit of time. measuring time is simple but quantifying the work done by a software developer is not. some researchers (e.g. jaspan and sadowski ) argue for using goal-specific metrics. others reject the whole idea of measuring productivity (e.g. ko aj ) not least because people tend to optimize for whatever metric is being used-a phenomenon known as goodhart's law (goodhart ; chrystal and mizen ) . furthermore, simple productivity measures such as counting commits or modified lines of code in a certain period suffer from low construct validity (ralph and tempero ) . the importance and difficulty of a commit does not necessarily correlate with its size. similarly, some developers might prefer dense, one-line solutions while others like to arrange their contributions in several lines. nevertheless, large companies including microsoft still use controversial metrics such as number of pull requests as a "proxy for productivity" (spataro ) , and individual developers also use them to monitor their own performance (baltes and diehl ) . copious time tracking tools exist for that purpose-some specifically tailored for software developers. while researchers have adapted existing scales to measure related phenomena like happiness (e.g. graziotin and fagerholm ) , there is no widespread consensus about how to measure developers' productivity or the main antecedents thereof. many researchers use simple, unvalidated productivity scales; for example, meyer et al. ( ) used a single question asking participants to rate themselves from "not productive" to "very productive." (the perceived productivity scale we use below has been repeatedly validated in multiple domains; cf. section . ). meanwhile, a programmer's productivity is closely related to their job satisfaction (storey et al. ) and emotional state (wrobel ; graziotin et al. ) . unhappiness, specifically, leads to "low cognitive performance, mental unease or disorder, and low motivation" (graziotin et al. , p. ) . however, little is known about the antecedents or consequences of software professionals' physical or mental wellbeing in general. the related work discussed above suggests numerous hypotheses. here we hypothesize about "developers" even though our survey was open to all software professionals because most respondents were developers (see section . ). these hypotheses were generated contemporaneously with questionnaire design-before data collection began. hypothesis h : developers will have lower wellbeing while working from home due to covid- . stress, isolation, travel restrictions, business closures and the absence of educational, child care and fitness facilities all take a toll on those working from home. indeed, a pandemic's severity and the uncertainty and isolation it induces create frustration, anxiety and fear (taha et al. ; digiovanni et al. ; teasdale et al. ) . it therefore seems likely that many developers will experience reduced emotional wellbeing. hypothesis h : developers will have lower perceived productivity while working from home due to covid- . similarly, stress, moving to an impromptu home office, and lack of child care and other amenities may reduce many developers' productivity. many people are likely more distracted by the people they live with and their own worrisome thoughts. people tend to experience lower motivation, productivity and commitment while working from home in a disaster situation (donnelly and proctor-thomson ) . assuming hypotheses h and h are supported, we want to propose a model that explains and predicts changes in wellbeing and productivity (fig. ) . hypotheses h and h are encapsulated in the change in wellbeing and change in perceived productivity constructs. the model only makes sense if wellbeing and productivity have changed since developers began working from home. hypothesis h : change in wellbeing and change in perceived productivity are directly related. we expect wellbeing and productivity to exhibit reciprocal causality. that is, as we feel worse, we become less productive, and feeling less productive makes us feel even worse, in a downward spiral. many studies show that productivity and wellbeing covary (cf. dall'ora et al. ) . moreover, evers et al. ( ) found that people with increasing health risks have lower wellbeing and life satisfaction, leading to higher rates of depression and anxiety. conversely, decreasing health risk will increase physical and emotional wellbeing and productivity. hypotheses h and h : disaster preparedness is directly related to change in wellbeing and change in perceived productivity. disaster preparedness is the degree to which a person is ready for a natural disaster. it includes behaviors like having an emergency supply kit and complying with directions from authorities. we expect lack of preparedness for disasters in general and for covid- in particular to exacerbate reductions in wellbeing and productivity, and vice versa (cf. paton ; donnelly and proctor-thomson ) . hypotheses h and h : fear (of the pandemic) is inversely related to change in wellbeing and change in perceived productivity. fear is a common reaction to bioevents like pandemics. emerging research on covid- is already showing a negative effect on wellbeing, particularly anxiety (harper et al. ; xiang et al. ) . meanwhile, fear of infection and public health measures cause psychosocial distress, increased absenteeism and reduced productivity (shultz et al. ; thommes et al. ) . hypotheses h and h : home office ergonomics is directly related to change in wellbeing and change in perceived productivity. here we use ergonomics in its broadest sense of the degree to which an environment is safe, comfortable and conducive to the tasks being completed in it. we are not interested in measuring the angle of a developer's knees and elbows, but in a more general sense of their comfort. professionals with more ergonomic home offices should have greater wellbeing and be more productive. donnelly and proctor-thomson ( ) found that availability of a dedicated work-space at home, living circumstances, and the availability of organisational resources to work relate to the capacity to return to work after a disaster and employees' productivity. hypothesis h : disaster preparedness is inversely related to fear (of the pandemic). it seems intuitive that the more prepared we are for a disaster, the more resilient and less afraid we will be when the disaster occurs. indeed, ronan et al.'s systematic review found that programs for increasing disaster preparedness had a small-to mediumsized negative effect on fear. people who have high self-efficacy and response-efficacy (i.e. perceive themselves as ready to face a disaster) will be less afraid (roberto et al. ). on march , , the first author initiated a survey to investigate how covid- affects developers, and recruited the second and third authors for help. we created the questionnaire and it was approved by dalhousie university's research ethics board in less than hours. we began data collection on march th. we then recruited authors through , who translated and localized the questionnaire into arabic, (mandarin) chinese, english, french, italian, japanese, korean, persian, portuguese, spanish, russian and turkish, and created region-specific advertising strategies. translations launched between april and , and we completed data collection between april and . next, we recruited the fourth author to assist with the data analysis, which was completed on april . the manuscript was prepared primarily by the first four authors with edits from the rest of team. this section details our approach and instrumentation. this study's target population is software developers anywhere in the world who switched from working in an office to working from home because of covid- . of course, developers who had been working remotely before the pandemic and developers who continued working in offices throughout the pandemic are also important, but this study is about the switch, and the questions are designed for people who switched from working on-site to at home. in principle, the questionnaire was open to all sorts of software professionals, including designers, quality assurance specialists, product managers, architects and business analysts, but we are mainly interested in developers, our marketing focused on software developers, and therefore most respondents identify as developers (see section . ). we created an anonymous questionnaire survey. we did not use url tracking or tokens. we did not collect contact information. questions were organized into blocks corresponding to scale or question type. the order of the items in each multi-item scale was randomized to mitigate primacy and recency effects. the order of blocks was not randomized because our pilot study (section . ) suggested that the questionnaire was more clear when the questions that distinguish between before and after the switch to home working came after those that do not. the questionnaire used a filter question to exclude respondents who do not meet the inclusion criteria. respondents who had not switched from working in an office to working from home because of covid- simply skipped to the end of the questionnaire. it also included not only traditional demographic variables (e.g. age, gender, country, experience, education) but also how many adults and children (under twelve) participants lived with, the extent to which participants are staying home and whether they or any friends or family had tested positive for covid- . the questionnaire used validated scales as much as possible to improve construct validity. a construct is a quantity that cannot be measured directly. fear, disaster preparedness, home office ergonomics, wellbeing and productivity are all constructs. in contrast, age, country, and number of children are all directly measurable. direct measurements are assumed to have inherent validity, but latent variables have to be validated to ensure that they measure the right properties (cf. ralph and tempero ) . the exact question wording can be seen in our replication pack (see section ). this section describes the scales and additional questions. to assess emotional wellbeing, we used the who's fiveitem wellbeing index (who- ). each item is assessed on a six-point scale from "at no time" ( ) to "all of the time" ( ). the scale can be calculated by summing the items or using factor analysis. the who- scale is widely used, widely applicable, and has high sensitivity and construct validity (topp et al. ) . respondents self-assessed their wellbeing twice: once for the four weeks prior to beginning to work from home, and then again for the time they have been working from home. to assess perceived productivity we used items from the who's health and work performance questionnaire (hpq). the hpq measures perceived productivity in two ways: ( ) using an eight-item summative scale, with multiple reversed indicators, that assesses overall and relative performance; and ( ) using -point general ratings of participants' own performance and typical performance of similar workers. these scales are amenable to factor analysis or summation. of course, people tend to overestimate their performance relative to their peers, but we are comparing participants to their past selves not to each other. hpq scores are closely related to objective performance data in diverse fields (kessler et al. ) . again, respondents self-assessed their productivity for both the four weeks prior to working from home, and for the time they have been working from home. to assess disaster preparedness, we adapted yong et al.'s ( ) individual disaster preparedness scale. yong et al. developed their five-item, five-point, likert scale based on common, important behaviors such as complying with government recommendations and having emergency supplies. the scale was validated using a questionnaire survey of a "weighted nationally representative sample" of canadians. we adapted the items to refer specifically to covid- . it can be computed by summing the responses or using factor analysis. tool for assessing patients' reactions to bioevents (including pandemics). the fr checklist places the patient on a scale from intense fear to hyper-resilience (bracha and burkle ) . we dropped some of the more extreme items (e.g. "right now are you experiencing shortness of breath?") because respondents are at home taking a survey, not arriving in a hospital emergency room. the fr checklist is a weighted summative scale so it has to be computed manually using bracha and burkle's formula rather than using factor analysis. it has multiple reversed indicators. we could not find a reasonable scale for evaluating home office ergonomics. there is comparatively less research on the ergonomics of home offices (inalhan and ng ) and ergonomic instruments tend to be too narrow (e.g. evaluating hip angle). based on our reading of the ergonomics literature, we made a simple six-item, six-point likert scale concerning distractions, noise, lighting, temperature, chair comfort and overall ergonomics. again, we evaluated the scale's face and content validity using a pilot study (see section . ) and examine convergent and discriminant validity ex post in section . . organizational support (os) we could not find any existing instrument that measures the degree to which an organization supports its employees during a crisis. the first author therefore interviewed three developers with experience in both co-located and distributed teams as well as office work and working from home. interviewees brainstormed actions companies could take to help, and we used open-coding (saldaña ) to organize their responses into five themes: . equipment: providing equipment employees need in their home office (e.g. a second monitor) . reassurance: adopting a tone that removes doubt and fear (e.g. assuring employees that lower productivity would be understood) . connectedness: encouraging virtual socializing (e.g. through video chat) . self-care: providing personal services not directly related to work (e.g. resources for exercising or home-schooling children) . technical infrastructure and practices: ensuring that remote infrastructure (e.g. vpns) and practices (e.g. code review) are in place. we generated a list of actions (four or five per theme) by synthesizing the ideas of interviewees with existing literature on working from home, distributed development and software engineering more generally. for each action, respondents indicate whether their employer is taking the action and whether they think it is or would be helpful. organizational support is not a construct in our theory per se because we have insufficient a priori information to produce a quantitative estimate, so we analyze these answers separately. we solicited feedback from twelve colleagues: six software engineering academics and six experienced software developers. pilot participants made various comments on the questionnaire structure, directions and on the face and content validity of the scales. based on this feedback we made numerous changes including clarifying directions, making the question order static, moving the who- and hpq scales closer to the end, dropping some problematic questions, splitting up an overloaded question, and adding some open response questions. (free-text answers are not analyzed in this paper; open response questions were included mainly to inform future research; see section . ). we advertised our survey on social and conventional media, including dev.to, développez.com, dnu.nl, eksisozluk, facebook, hacker news, heise online, infoq, linkedin, twitter, reddit and wechat. upon completion, participants were provided a link and encouraged to share it with colleagues who might also like to take the survey. because this is an anonymous survey, we did not ask respondents to provide colleagues' email addresses. we considered several alternatives, including scraping emails from software repositories and stratified random sampling using company lists, but none of these options seemed likely to produce a more representative sample. granted, if we sampled from an understood sampling frame, we could better evaluate the representativeness of the sample and generalizability of the results; however, we are not aware of any sampling frames with sufficiently well-understood demographics to facilitate accurate inferences. instead, we focused on increasing the diversity of the sample by localizing the survey and promoting it in more jurisdictions. we translated the survey into arabic, (mandarin) chinese, french, italian, japanese, korean, persian, portuguese, spanish, russian and turkish. each author-translator translated from english into their first language. we capitalized on each authors' local knowledge to reach more people in their jurisdiction. rather than a single, global campaign, we used a collection of local campaigns. each localization involved small changes in wording. only a few significant changes were needed. the chinese version used a different questionnaire system (https://wjx.cn) because google forms is not available in china. furthermore, because the lockdowns in china and korea were ending, we reworded some questions from "since you began working from home" to "while you were working from home." we did not offer cash incentives for participation. rather, we offered to donate us$ to an open source project chosen by participants (in one of the open response questions). respondents suggested a wide variety of projects, so we donated us$ to the five most mentioned: the linux foundation, the wikimedia foundation, the mozilla foundation, the apache software foundation and the free software foundation. the portuguese version was slightly different: it promised to donate brl to ação da cidadania's (a brazillian ngo) action against corona project rather than a project chosen by participants (which we did). we received total responses of which did not meet our inclusion criteria and were effectively blank (see below) leaving . this section describes how the data was cleaned and analyzed. the data was cleaned as follows. . delete responses that do not meet inclusion criteria. . delete almost empty rows, where the respondent apparently answered the filter question correctly, then skipped all other questions. . delete the timestamp field (to preserve anonymity), the consent form confirmation field (because participants could not continue without checking these boxes so the answer is always "true") and the filter question field (because all remaining rows have the same answer). . add a binary field indicating whether the respondent had entered text in at least one long-answer question (see section . ). . move all free-text responses to a separate file (to preserve anonymity). . recode the raw data (which is in different languages with different alphabets) into a common quantitative coding scheme; for example, from for "strongly disagree" to for "strongly agree" the recoding instructions and related scripts are included in our replication package (see section ). . split select-multiple questions into one binary variable per checkbox (google forms uses a comma-separated list of the text of selected answers). . add a field indicating the language of the response. . combine the responses into a single data file. . calculate the fr scale according to its formula (bracha and burkle ) . we evaluated construct validity using established guidelines (ralph and tempero ) . first, we assessed content validity using a pilot study (section . ). next, we assessed convergent and discriminant validity using a principle component analysis (pca) with varimax rotation and kaiser normalization. bartlett's test is significant (χ = ; df = ; p < . ) and our kmo measure of sampling adequacy is high ( . ), indicating that our data is appropriate for factor analysis. as table shows, the items load well but not perfectly. the bold coefficients suggest possible issues with change in productivity ( productivity) and , as well as ergonomics . we dropped items one at a time until the loadings stabilized, starting with productivity , followed by productivity . as shown in table , dropping these two indicators solved the problem with ergonomics , so the latter is retained. we evaluate predictive validity by testing our hypotheses in section . . here, response bias refers to the possibility that people for whom one of our hypotheses hold are more likely to take the questionnaire, thus inflating the results. there are two basic ways to analyze this kind of response bias. the first-comparing sample parameters to known population parameters-is impractical because no one has ever established population parameters for software professionals. the second-comparing late respondents to early respondents-cannot be used because we do not know the time between each respondent learning of the survey and completing it. however, we can do something similar: we can compare respondents who answered one or more open response questions (more keen on the survey) with those who skipped the open response questions (less keen on the survey). as shown in table , only number of adult cohabitants and age have significant differences, and in both cases, the effect size (η ) is very small. this is consistent with minimal response bias. respondents were disproportionately male ( % vs. % female and % non-binary) and overwhelmingly employed full-time ( %) with a median age of - . participants were generally well-educated (fig. ) . most respondents ( %) live with one other adult, while % live with no other adults and the rest live with two or more people. % live with one or more children under . % indicate that they may have a disability that affects their work. mean work experience is . years (σ = . ). mean experience working from home is . years (σ = . ); however, % of respondents had no experience working from home before covid- . participants hail from countries (table ) and organizations ranging from - employees to more than , (fig. ) . many participants listed multiple roles but % included software developer or equivalent among them, while the rest were other kinds of software professionals (e.g. project manager, quality assurance analyst). seven participants (< %) tested positive for covid- and six more (< %) live with someone with covid- ; % of respondents indicated that a close friend or family member had tested positive, and % were currently or recently quarantined. hypothesis h : developers will have lower wellbeing while working from home due to covid- . participants responded to the who- wellbeing scale twice-once referring to the -day period before switching to work from home and once referring to the period while working from home. we estimate wellbeing before and after by summing each set of five items, and then compare the resulting distributions (see fig. ). since both scales deviate significantly from a normal distribution (shapiro-wilk test; p < . ; see fig. ), we compare the distributions using the two-sided paired wilcoxon signed rank test. to estimate effect size, we use cliff's delta (with % confidence level). hypothesis h is supported. (wilcoxon signed rank test v = ; p < . ; δ = . ± . ). hypothesis h : developers will have lower perceived productivity while working from home due to covid- . like the wellbeing scale, participants answered the hpq fig. organization sizes productivity scale twice. again, we estimate productivity before and after by summing each set of items (after correcting reversed items and omitting items and ; see section . ). again, the distributions are not normal (shapiro-wilk test; p < . ; see fig. ), so we use the wilcoxon signed rank test and cliff's delta. hypothesis h is supported. (wilcoxon signed rank test v = ; p < . ; δ = . ± . ). to test our remaining hypotheses, we use structural equation modeling (sem). briefly, sem is used to test theories involving constructs (also called latent variables). a construct is a quantity that cannot be measured directly (ralph and tempero ) . fear, disaster preparedness, home office ergonomics, wellbeing and productivity are all constructs. in contrast, age, country, and number of children are all directly measurable. to design a structural equation model, we first define a measurement model, which maps each reflective indicator into its corresponding construct. for example, each of the five items comprising the who- wellbeing scale is modeled as a reflective indicator of wellbeing. sem uses confirmatory factor analysis to estimate each construct as the shared variance of its respective indicators. next, we define the structural model, which defines the expected relationships among the constructs. the constructs we are attempting to predict are referred to as endogenous, while the predictors are exogenous. sem uses a path modeling technique (e.g. regression) to build a model that predicts the endogenous (latent) variables based on the exogenous variables, and to estimate both the strength of each relationship and the overall accuracy of the model. as mentioned, the first step in a sem analysis is to conduct a confirmatory factor analysis to verify that the measurement model is consistent (table ) . here, the latent concepts ergonomics and disasterpreparedness are captured by their respective exogenous variables. fear is not included because it is computed manually (see section . ). wellbeing is the difference in a participant's emotional wellbeing before and after switching to working from home. this latent concept is captured by five exogenous variables, wb , . . . , wb . similarly, productivity represents the difference in perceived productivity, before and after switching to working from home. the confirmatory factor analysis converged (not converging would suggest a problem with the measurement model) and all of the indicators load well on their constructs. the lowest estimate, . for dp , is still quite good. the estimates for p through p are negative because these items were reversed (i.e. higher score = worse productivity). note that factor loadings greater than one do not indicate a problem because they are regression coefficients, not correlations (jöreskog ) . having reached confidence in our measurement model, we construct our structural model by representing all of the hypotheses stated in section as regressions (e.g. wellbeing ∼ disasterpreparedness + fear + ergonomics). in principle, we use all control variables as predictors for all latent variables. in practice, however, this leads to too many relationships and prevents the model from converging. therefore, we evaluate the predictive power of each control variable, one at a time, and include it in a regression only where it makes at least a marginally significant (p < . ) difference. here, using a higher than normal p-value is more conservative because we are dropping predictors rather than testing hypotheses. country of residence and language of questionnaire are not included because sem does not respond well to nominal categorical variables (see section . ). since the exogenous variables are ordinal, the weighted least square mean variance (wlsmv) estimator was used. wlsmv uses diagonally weighted least squares to estimate the model parameters, but it will use the full weight matrix to compute robust standard errors, and a mean-and variance-adjusted test statistic. in short, the wlsmv is a robust estimator which does not assume a normal distribution, and provides the best option for modelling ordinal data in sem (brown ) . we use the default nonlinear minimization subject to box constraints (nlminb) optimizer. for missing data, we use pairwise deletion: we only keep those observations for which both values are observed (this may change from pair to pair). by default, since we are also dealing with categorical exogenous variables, the model is set to be conditional on the exogenous variables. the model was executed and all diagnostics passed, that is, lavaan ended normally after iterations with free parameters and n = . we evaluate model fit by inspecting several indicators (cf. hu and bentler , for in summary, all diagnostics indicate the model is safe to interpret (i.e. cfi = . , rmsea = . , srmr = . ). figure illustrates the supported structural equation model. the arrows between the constructs show the supported causal relationships. the path coefficients (the numbers on the arrows) indicate the relative strength and direction of the relationships. for example, the arrow from disaster preparedness to fear indicates that the hypothesis that disaster preparedness affects fear was supported. the label (− . ) indicates an inverse relationship (more disaster preparedness leads to less fear) and . indicates the strength of the relationship. hypotheses h -h , h , h , and h -h are supported; hypotheses h and h are not supported. that is, change in wellbeing and change in perceived productivity are directly related; change in perceived productivity depends on home office ergonomics and disaster preparedness; change in wellbeing depends on ergonomics and fear; and disaster preparedness is inversely related to fear. inspecting the detailed sem results (table ) reveals numerous interesting patterns. direct effects include: -people who live with small children have significantly less ergonomic home offices. this is not surprising because the ergonomics scale included items related to noise and distractions. -women tend to be more fearful. this is consistent with studies on the sars epidemic, which found that women tended to perceive the risk as higher (brug et al. ). -people with disabilities are less prepared for disasters, have less ergonomic offices and are more afraid. -people who live with other adults are more prepared for disasters. -people who live alone have more ergonomic home offices. -people who have covid- or have family members, housemates or close friends with covid- tend to be more afraid, more prepared, and have worse wellbeing since working from home. -people who are more isolated (i.e. not leaving home at all, or only for necessities) tend to be more afraid. home office ergonomics some indirect effects are also apparent, but are more difficult to interpret. for example, changes in productivity and wellbeing are closely related. hypothesis h may be unsupported because change in productivity is mediating the effect of disaster preparedness on change in wellbeing. similarly, hypothesis h may not be unsupported because change in wellbeing is mediating the relationship between fear and change in productivity. furthermore, control variables including gender, children and disability may have significant effects on wellbeing or productivity that are not obvious because they are mediated by another construct. some variables have conflicting effects. for example, disability has not only a direct positive effect on productivity but also an indirect negative effect (through fear). so, is the pandemic harder on people with disabilities? more research is needed to explore these relationships. above, we mentioned omitting language and country because sem does not respond well to nominal categorical variables. we tried anyway, and both language and country were significant predictors for all latent variables, but, as expected, including so many binary dummy variables makes the model impossible to interpret. while our analysis suggests that country, language (and probably culture) have significant effects on disaster preparedness, ergonomics, fear, wellbeing and productivity, more research is need to understand the nature of these effects (see section . ). table shows participants' opinions of the helpfulness of numerous ways their organizations could support them. several interesting patterns stand out from this data: -only action # -paying developer's home internet charges-is perceived as helpful by more than half of participants and less than % of companies appear to be doing that. -the action most companies are taking (# , having regular meetings) is not perceived as helpful by most participants. -there appears to be no correlation between actions developers believe would help and actions employers are actually taking. -there is little consensus among developers about what their organizations should do to help them. in hindsight, the structure of this question may have undermined discrimination between items. future work could investigate a better selection of actions, and possibly ask participants for their "top n" items to improve reliability. moreover, the helpfulness of actions may depend on where the participant lives; for example, in countries with a weaker social safety net, reassuring employees that they will keep their jobs, pay and benefits may be more important. this study shows that software professionals who are working from home during the pandemic are experiencing diminished emotional wellbeing and productivity, which are closely related. furthermore, poor disaster preparedness, fear related to the pandemic, and poor home office ergonomics are exacerbating this reduction in wellbeing and productivity. moreover, women, parents and people with disabilities may be disproportionately affected. in addition, dissensus regarding what organizations can do to help suggests that no single action is universally helpful; rather, different people need different kinds of support. organizations need to accept that expecting normal productivity under these circumstances is unrealistic. pressuring employees to maintain normal productivity will likely make matters worse. furthermore, companies should avoid making any decisions (e.g. layoffs, promotions, bonuses) based on productivity during the pandemic because any such decision may be prejudiced against protected groups. if a member of a protected group feels discriminated against due to low productivity at this time, we recommend contacting your local human rights commission or equivalent organization. because productivity and wellbeing are so closely related, the best way to improve productivity is to help employees maintain their emotional wellbeing. however, no single action appears beneficial to everyone, so organizations should talk to their employees to determine what they need. helping employees improve the ergonomics of their work spaces, in particular, should help. however, micromanaging foot positions, armrests and hip angles is not what we mean by ergonomics. rather, companies should ask broad questions such as "what do you need to limit distractions and be more comfortable?" shipping an employee a new office chair or noise cancelling headphones could help significantly. meanwhile, professionals should try to accept that their productivity may be lower and stop stressing about it. similarly, professionals should try to remember that different people are experiencing the pandemic in very different ways-some people may be more productive than normal while others struggle to complete any work through no fault of their own. it is crucial to support each other and avoid inciting conflict over who is working harder. the above recommendations should be considered in the context of the study's limitations. sampling bias random sampling of software developers is rare (amir and ralph ) because there are no lists of all the software developers, projects, teams or organizations in the world or particular jurisdictions (baltes and ralph ) . we therefore combined convenience and snowball sampling with a strategy of finding a co-author with local knowledge to translate, localize and advertise the questionnaire in a locally effective way. on one hand, the convenience/snowball strategy may bias the sample in unknown ways. on the other hand, our translation and localization strategy demonstrably increased sample diversity, leading to one of the largest and broadest samples of developers ever studied, possible due to a large, international and diverse research team. any random sample of english-speaking developers is comparatively ethnocentric. the sample is not balanced; for instance, many more respondents live in germany than all of southeast asia, but we attempt to correct for that (see internal validity, below). response bias meanwhile, we found minimal evidence of response bias (in section . ). however, because the questionnaire is anonymous and google forms does not record incomplete responses, response bias can only be estimated in a limited way. someone could have taken the survey more than once or entered fake data. additionally, large responses from within a single country could skew the data but we correct for company size, language and numerous demographic variables to mitigate this. to enhance construct validity, we used validated scales for wellbeing, productivity, disaster preparedness and fear/resilience. post-hoc construct validity analysis suggests that all four scales, as well as the ergonomics scale we created, are sound (section . ). however, perceived productivity is not the same as actual productivity. although the hpq scale correlates well with objective performance data in other fields (kessler et al. ) , it may not in software development or during pandemics. similarly, we asked respondents their opinion of numerous potential mechanisms for organizational support. just because companies are taking some action (e.g. having regular meetings) or respondents believe in the helpfulness of some action (e.g. paying their internet bills), does not mean that those actions will actually improve productivity or wellbeing. there is much debate about whether -and -point responses should be treated as ordinal or interval. cfa and sem are often used with these kinds of variables in social sciences despite assuming at least interval data. some evidence suggests that cfa is robust against moderate deviations from normality, including arguably-ordinal questionnaire items (cf. flora and curran ) . we tend not to worry about treating data as interval as long as, in principle, the data is drawn from a continuous distribution. additionally, due to a manual error, the italian version was missing organizational support item : "my team uses a build system to automate compilation and testing." the survey may therefore under-count the frequency and importance of this item by up to %. we use structural equation modeling to fit a theoretical model to the data. indicators of model fit suggest that the model is sound. moreover, sem enhances conclusion validity by correcting for multiple comparisons, measurement error (by inferring latent variables based on observable variables), testing the entire model as a whole (instead of one hypothesis at a time) and controlling for extraneous variables (e.g. age, organization size). sem is considered superior to alternative path modeling techniques such as partial least squares path modeling (rönkkö and evermann ) . while a bayesian approach might have higher conclusion validity (furia et al. ) , none of the bayesian sem tools (e.g. blaavan) we are aware of support ordered categorical variables. the main remaining threat to conclusion validity is overfitting the structural model. more research is needed to determine whether the model overstates any of the supported effects. to infer causality, we must demonstrate correlation, precedence and the absence of third variable explanations. sem demonstrates correlation. sem does not demonstrate precedence; however, we can be more confident in causality where precedence only makes sense in one direction. for example, having covid- may reduce one's productivity, but feeling unproductive cannot give someone a specific virus. similarly, it seems more likely that a more ergonomic office might make you more productive than that being more productive leads to a more ergnomic office. meanwhile, we statistically controlled for numerous extraneous variables (e.g. age, gender, education level, organization size). however, other third-variable explanations cannot be discounted. developers who work more overtime, for example, might have lower wellbeing, worse home office ergonomics, and reduced disaster preparedness. other confounding variables might include individual differences (e.g. personality), team dynamics, organizational culture, family conflict, past medical history and wealth. for researchers, this paper opens a new research area intersecting software engineering and crisis, disaster and emergency management. although many studies explore remote work and distributed teams, we still need a better understanding of how stress, distraction and family commitments affect developers working from home during crises, bioevents and disasters. more research is needed on how these events affect team dynamics, cohesion, performance, as well as software development processes and practices. more specifically, the dataset we publish alongside this paper can be significantly extended. abundant quantitative data is available regarding different countries, and how those countries reacted to the covid- pandemic. country data could be merged with our dataset to investigate how different contexts, cultures and political actions affect developers. for example, the quality of a country's social safety net may affect fear. furthermore, the crisis continues. more longitudinal research is needed to understand its long-term effects on software professionals (e.g. burnout), projects (e.g. decreased velocity) and communities (e.g. trust issues). research is also needed to understand how the crisis affects different kinds of professions. we focus on software developers because that is who software engineering research is responsible for, in the same way nursing researchers will study nurses and management researchers will study managers. only comparing studies of different groups will reveal the extent to which our findings are specific to software professionals or generalizable to other knowledge workers. this study does not investigate typical software engineering practices (e.g. pair programming, mutation testing) or debates (e.g. agile methods vs. model-driven engineering) because we do not believe that a team's software development methodology is a key antecedent of pandemic-induced changes to productivity and wellbeing. further research is needed to confirm or refute our intuition. this study taught us two valuable lessons about research methodology. first, collaborating with a large, diverse, international research team and releasing a questionnaire in multiple languages with location-specific advertising can generate a large, diverse, international sample of participants. second, google forms should not be used to conduct scientific questionnaire surveys. it is blocked in some countries. it does not record partial responses or bounce rates, hindering analysis of response bias. url parameter passing, which is typically used to determine how the respondent found out about the survey, is difficult. exporting the data in different ways gives different variable orders, encouraging mistakes. responses are recorded as (sometimes long) strings instead of numbers, overcomplicating data analysis. we should have used a research focused survey tool such as limesurvey(.org) or qualtrics(.com). the covid- pandemic has created unique conditions for many software developers. stress, isolation, travel restrictions, business closures and the absence of educational, child care and fitness facilities are all taking a toll. working from home under these conditions is fundamentally different from normal working from home. this paper reports the first largescale study of how working from home during a pandemic affects software developers. it makes several key contributions: -evidence that productivity and wellbeing have declined; -evidence that productivity and wellbeing are closely related; -a model that explains and predicts the effects of the pandemic on productivity and wellbeing; -some indication that different people need different kinds of support from their organizations (there is no silver bullet here); -some indication that the pandemic may disproportionately affect women, parents and people with disabilities. furthermore, this study is exceptional in several ways: ( ) the questionnaire used previously validated scales, which we re-validated using both principal components analysis and confirmatory factor analysis; ( ) the questionnaire attracted an unusually large sample of responses; ( ) the questionnaire ran in languages, mitigating cultural biases; ( ) the data was analyzed using highly sophisticated methods (i.e. structural equation modelling), which rarely have been utilized in software engineering research; ( ) the study investigates an emerging phenomenon, providing timely advice for organizations and professionals; ( ) the study incorporates research on emergency and disaster management, which is rarely considered in software engineering studies. we hope that this study inspires more research on how software development is affected by crises, pandemics, lockdowns and other adverse conditions. as the climate crisis unfolds, more research intersecting disaster management and software engineering will be needed. a comprehensive replication package including our (anonymous) dataset, instruments and analysis scripts is stored in the zonodo open data archive at https://zenodo.org/record/ . yong ag, lemyre l, pinsent c, krewski d ( ) risk perception and disaster preparedness in immigrants and canadian-born adults: analysis of a national survey on similarities and differences. risk anal ( ): - yong ag, lemyre l ( ) getting canadians prepared for natural disasters: a multi-method analysis of risk perception, behaviors, and the social environment. nat hazards ( ): - publisher's note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. paul ralph phd (british columbia), is a professor of software engineering in the faculty of computer science at dalhousie university where his research centers on empirical software engineering, humancomputer interaction and project management. paul also co-chairs the acm sigsoft paper and peer review quality initiative. for more information please visit: https://paulralph.name. phd (university of trier), is a lecturer in the school of computer science at the university of adelaide, australia. his research empirically analyzes software developers' work habits to derive tool requirements and to identify potential process improvements. for more information please visit: https://empirical-software. engineering. gianisa adisaputri master of emergency management (auckland university of technology), md (islamic state university syarif hidayatullah jakarta), is an emergency and disaster management consultant in halifax, canada. her research interests include community resilience, disaster preparedness and emergency risk communication. there is no random sampling in software engineering research how will country-based mitigation measures influence the course of the covid- epidemic? worry, gratitude & boredom: as covid- affects mental, financial health, who fares better a review of telework research: findings, new directions, and lessons for the study of modern work satisfaction and perceived productivity when professionals work from home towards a theory of software development expertise sampling in software engineering research: a critical review and guidelines how does working from home affect developer productivity? a case study of baidu during covid- pandemic self performance appraisal vs direct-manager appraisal: a case of congruence teleworking: benefits and pitfalls as perceived by professionals and managers employment and compliance with pandemic influenza mitigation recommendations utility of fear severity and individual resilience scoring as a surge capacity, triage management tool during large-scale, bio-event disasters sars risk perception, knowledge, precautions, and information sources, the netherlands managing a virtual workplace goodhart's law: its origins, meaning and implications for monetary policy. central bank monetary theory pract essays honour of charles goodhart characteristics of shift work and their impact on employee performance and wellbeing: a literature review two cheers for the virtual office factors influencing compliance with quarantine in toronto during the sars outbreak disrupted work: home-based teleworking (hbtw) in the aftermath of a natural disaster big tech firms ramp up remote working orders to prevent coronavirus spread telework and the balance between work and family: is telework part of the problem or part of the solution? examining relationships between multiple health risk behaviors, well-being, and productivity mental health of people in australia in the first month of covid- restrictions: a national survey an empirical evaluation of alternative methods of estimation for confirmatory factor analysis with ordinal data octoverse spotlight: an analysis of developer productivity, work cadence, and collaboration in the early days of covid- bayesian data analysis in empirical software engineering research how do you feel, developer? an explanatory theory of the impact of affects on programming performance consequences of unhappiness while developing software happiness and the productivity of software engineers functional fear predicts public health compliance in the covid- pandemic cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives work-life imbalance in call centres and software development teleworker's home office: an extension of corporate office? facilities no single metric captures productivity a third of the global population is on coronavirus lockdown -here's our constantly updated list of countries and restrictions the world health organization health and work performance questionnaire (hpq) public risk perceptions and preventive behaviors during the h n influenza pandemic why we should not measure productivity gartner cfo survey reveals % intend to shift some employees to remote work permanently economic and policy implications of pandemic influenza pandemics: risks, impacts, and mitigation working in the virtual office: providing information and knowledge to remote workers factors that affect software systems development project outcomes: a survey of research retrospecting on work and productivity: a study on self-monitoring software developers' work the business of healing: focus group discussions of readjustment to the post- / work environment among employees of affected agencies community resilience: integrating individual, community and societal perspectives a technology acceptance model of innovation adoption: the case of teleworking stress in remote work: two studies testing the demand-control-person model a social-cognitive model of pandemic influenza h n risk perception and recommended behaviors in italy construct validity in software engineering research and software metrics. in: proceedings of the nd international conference on evaluation and assessment in software infectious disease disasters: bioterrorism, emerging infections, and pandemics raising the alarm and calming fears: perceived threat and efficacy during risk and crisis disaster preparedness for children and families: a critical review a critical examination of common beliefs about partial least squares path modeling the impact of flexible working arrangements on work-life conflict and work pressure in ireland the role of fear-related behaviors in the - west africa ebola virus disease outbreak helping our developers stay productive while working remotely towards a theory of software developer job satisfaction and perceived productivity intolerance of uncertainty, appraisals, coping, and anxiety: the case of the h n pandemic the importance of coping appraisal in behavioural responses to pandemic flu absenteeism impact on local economy during a pandemic via hybrid sir dynamics the who- well-being index: a systematic review of the literature who ( a) coronavirus disease (covid- ): situation report detail/ - - -statement-on-the-second-meeting-of-the-international-health-regulations emotions in the software development process the covid- outbreak and psychiatric hospitals in china: managing challenges through mental health service reform acknowledgements this project was supported by the natural sciences and engineering research council of canada grant rgpin- - , the government of spain through project "bugbirth" (rti - -b- ), dalhousie university and the university of adelaide. thanks to brett cannon, alexander serebrenik and klaas stol for their advice and support, as well as all of our pilot participants. thanks also to all of the media outlets who provided complementary advertising, including dnu.nl, eksisozluk, infoq and heise online. finally, thanks to everyone at empirical software engineering for fast-tracking covid-related research. rashina hoda phd (victoria university of wellington), b.sc. hons (louisiana state university), is an associate dean (academic development) and an associate professor in software engineering at the faculty of information technology at monash university where her research focuses on human-centred software engineering, agile software development, and grounded theory. rashina serves on the ieee tse reviewer board, the ieee software advisory panel, and as associate editor for jss and on the organising committees for icse , xp , and ase . for more information please visit: www. rashina.com.hideaki hata phd (osaka university), is an assistant professor in the division of information science at nara institute of science and technology, where his research centers on empirical software engineering, software ecosystems, human capital in software engineering, and software economics. he is an associate editor for ieice transactions on information and systems and has served on the pc of several conferences like ase, msr, and icgse. for more information please visit: https://hideakihata.github.io/.gregorio robles phd, is an associate professor at the universidad rey juan carlos, madrid, spain. gregorio is specialized in free/open source software research. he is one of the founders of bitergia, a software development analytics company. his homepage can be found at http://gsyc.urjc.es/ ∼ grex. gregorio acknowledges the support of the government of spain through project "bugbirth" (rti - -b- ). amin milani fard phd (university of british columbia), m.sc. (simon fraser university), is an assistant professor in computer science at new york tech vancouver, and a visiting scholar at simon fraser university. his research and industry experience are in software engineering, data analysis, and cybersecurity. for more information please visit: http://www.ece.ubc.ca/ ∼ aminmf/.rana alkadhi phd (technical university of munich), is an assistant professor in computer science at king saud university where her research centers on empirical software engineering, human aspects of software engineering and natural language processing. rana has several publications in highly recognized outlets. for more information please visit: https://fac.ksu.edu.sa/ralkadi affiliations paul ralph · sebastian baltes · gianisa adisaputri · richard torkar , · vladimir kovalenko · marcos kalinowski · nicole novielli · shin yoo · xavier devroey · xin tan · minghui zhou · burak turhan , · rashina hoda · hideaki hata · gregorio robles · amin milani fard · rana alkadhi key: cord- -sf zld z authors: gaar, eduard; scherer, david; schiereck, dirk title: the home bias and the local bias: a survey date: - - journal: manag rev q doi: . /s - - - sha: doc_id: cord_uid: sf zld z the home bias like the disposition effect is a well-researched economic phenomenon in investor behaviour which has been examined in finance journal articles for decades. while there is little doubt about the existence of the bias, its magnitude varies across countries and investor groups. the home bias has to be regarded as a multifactorial phenomenon, a combination of numerous causes which all synergistically contribute. in contrast to other biases the home bias can at least partially be explained by reasons beyond irrational investor behaviour. while institutional restrictions play a minor role, informational asymmetries and superior information of domestic investors are important factors. thus, the performance of investments may well benefit from a home bias, and the bias then no longer would be a puzzle but rather rational behaviour as a lower diversification level may lead to higher returns. the contemporary understanding of the home bias gains in relevance as the ongoing political debate in germany has to clarify an institutional framework for long-run retirement savings plans of private households based on equity investments. in a frictionless perfect global capital market, investors should invest the risky part of their savings completely in the market portfolio to optimize their risk-return patterns and to comply with classical approaches as the capm (sharpe ) . however, empirical research provides evidence for decades that in real markets investors deviate from this portfolio structure which is optimal in perfect markets. the home bias belongs to the puzzles in economics, proven empirically, that do not fit into (neoclassical) theory (obstfeld and rogoff ) . following the home bias and the intra-national local bias investors are inclined to invest disproportionately into local and domestic assets, not following portfolio diversification strategies. based on capital market models, the home bias has been elaborated (black ; michaelides ; stulz a stulz , b , and empirical research on the bias started with french and poterba ( ) studying u.s., uk and japan. cooper and kaplanis ( ) and fidora et al. ( ) among others confirmed the patterns of the home bias for these three countries. additional evidence for germany, france, italy and sweden documents the global reach of the phenomenon (anderson et al. ; chan et al. ; lau et al. ; mishra ; lippi ) . the local bias as the intranational equivalent has been detected for intra-u.s. investments (hong et al. ; huberman ), finish investors (grinblatt and keloharju ) , japanese investors (kang and stulz ) and german individual investors (baltzer et al. ) . the overwhelming majority of research examines home and local bias dealing with direct equity investments and indirect equity mutual fund investments, but the home bias also can be determined for bonds (ferreira and miguel ; solnik and zuo ) , real estate (eichholtz et al. ; imazeki and gallimore ) venture capital investments (cumming and dai ) and bank loans (presbitero et al. ) . home and local bias are prevalent and existing for both individual household investors and sophisticated, professional investors like mutual fund managers (shapira and venezia ) or occupational pension fund managers (lippi ) . however, individuals tend to exhibit a higher degree of the bias (ivkovic and weisbenner ; lütje and menkhoff ) . most empirical research tried to detect reasons why investors show a home and local bias. it can be discussed if institutional reasons urge investors to show a home bias. taxes, transaction costs and barriers to international investments may contribute (black ; michaelides ) , though institutional reasons are often challenged in literature (coën ; glassman and riddick ) . informational asymmetries between investors presumably cause home bias. these informational reasons can be seen in a universal setting as general information asymmetries moskowitz , ; dziuda and mondria ; shukla and van inwegen ) or as informational advantages resulting from different accounting standards between countries (ahearne et al. ; bradshaw et al. ; eichler ) . familiarity also may induce informational advantages, thus a home and local bias (bodnaruk ; massa and simonov ) . a third, quite popular category in studies are behavioural reasons and home bias then should be related to emotional biases of investments and asset allocation. a general optimism and a strong belief in domestic/local assets (li ; solnik and zuo ; strong and xu ) are part of these explanations as well as ambiguity aversion (dimmock et al. ) , perceived competence (abreu et al. ; kilka and weber ) and experience of investors (graham et al. ; lütje and menkhoff ) . financial literacy and advice seeking of investors (calcagno and monticone ; kramer ; mietzner and molterer ) can be assumed being related to home and local bias. 'pure familiarity', a notion coined by massa and simonov ( ) , and also studied for the local bias by grinblatt and keloharju ( ) , plays a role as well. patriotism (morse and shive ) and loyalty (cohen ) are similar behavioural traits. hedging motives constitute the last part of behavioural reasons. by exhibiting a home bias, investors may be capable of hedging against uncertainty (generally examined by choi et al. ( ) ) which often takes the form of inflation risk, exchange rate risk and consequential deviations from purchasing power parity (fidora et al. ; harms et al. ) . the importance and practical relevance of hedging motives is put into question (cooper and kaplanis ; glassman and riddick ; uppal ) . there are many reviews about home bias (lewis ; wolf ; coeurdacier and rey ; ardalan ) . the reviews of lewis ( ) and wolf ( ) are dated back two decades and often examined home bias in consumption as well. meanwhile the number of exchange listed companies dropped significantly in all major stock markets leaving investors with a smaller number of assets to diversify. the sources to collect information about stocks for investments increased with the number of internet users facilitating the basis for knowledge about foreign assets. and in recent years, the necessity to privately save and invest for retirement purposes became more and more obvious to private households in countries like germany with a long history of predominant savings only based on bank accounts and life insurances. these changes in the overall institutional environment lead us to derive two research questions for the following literature survey: . is there still convincing evidence for a home bias and a local bias in developed stock markets? . if there still is a bias, does this bias result in inferior risk-return structures of private portfolios? in the case, that both questions have to be answered positively then financial advisors in banks but also the new robo advisors should address this issue to support investors in overcoming the otherwise biased investment behaviour. compared to the more recent reviews by coeurdacier and rey ( ) and ardalan ( ) the contribution to research of this review can be defined from two sides. first, the studies and papers incorporated in this review differ significantly from the two mentioned and a large part has not been included in the previous reviews. this is partly due to the method of literature selection and partly based on the fact that mainly studies explicitly elaborating home bias are included in this review. second, the approach of this review is more comprehensive and grasps the broad picture of home bias, especially referring to ardalan ( ) . whereas ardalan ( ) exclusively reviews the reasons of home bias encyclopaedically, this paper reviews various measurements, the reasons and implications of home bias. on top of that, the study differentiates between home bias and local bias and simultaneously integrates both. the paper is structured as follows. first, in sect. the methodical approach will be explained and how relevant literature has been found and evaluated. section deals with the precise definition of home and local bias. section gives empirical evidence on both the existence and the degree of the home bias for numerous countries addressing the first research question. section constitutes the main body of the review and works out reasons for and consequences of the home and local bias, divided into institutional, informational and behavioural reasons and thereby addressing the second research question. in addition, the implications of home and local bias, especially on portfolio performance, are presented in sect. . section summarizes the findings and provides avenues for future research. the search request started with the identification of the relevant keywords. although the basic puzzle is called home bias equity puzzle, it is expected that merely the notion home bias is being used in most of the relevant research articles. besides, there may be several synonyms like local bias or domestic bias. these similar terms are also used for search requests. in a second step, the search is divided into advanced (title, abstract) search and simple full-text-search. in this review, concerning the considered media type the focal point will be on highly recommended journals in order to concentrate on the most qualified results for the two research questions. besides the standard library catalogue, google scholar is used as source. the decision falls on google scholar as it offers a high number of sources and the goal of the review is to capture all studies on home bias. the results in this review would not change significantly using another bibliometric database. the titles of all identified articles are scanned. however, the findings obtained by the advanced search are subject to a more thorough analysis. nearly all of these are significant to the researched topic and are included in this review. the number of results in google scholar reinforces that the home bias is a broadly discussed topic in finance; just the advanced search findings and not all of the full-text findings with google scholar are scanned for relevance. apart from actively conducting search requests, the references and citations in the articles found by using the two methods are analysed. relevant papers are drawn from the references and included in the review. this process may be repeated several times. note, that the quality of every identified paper is evaluated. if the paper, respectively the correspondent journal, has a poor ranking, it will not be included in this review. this cross-reference method is one of the most promising ones in order to find further articles related to the topic. table in the appendix gives an overview about the results of the home bias search per journal and database. following the advice of fisch and block ( ) that the screening criteria can have crucial implications for the results, this review solely concentrates on articles published in high quality journals. all types of grey literature like working papers and discussion papers are not incorporated. the evaluation and the selection process is conducted as a combination of objective and subjective methods. the vhb-ranking for a subjective evaluation whereas the impact factors constitute the objective method. the vhb-ranking is made by skilled and experienced university professors who give their opinion about the quality of journals (the ranking goes from a+ for a worldwide leading journal over a, b and c to d). even though this seems to be and even is a subjective judgement and ranking, the vhb-ranking is one of the most qualified rankings one can obtain for evaluating the scientific quality of journals. first, all journals are included which are found in the vhb-ranking and not ranked below b-level. within this range, higher-ranked journals are preferred over lower-ranked. second, two different impact factors are used to evaluate the significance of journals. only if the journal is ranked in the upper half of both considered impact factor surveys, the correspondent article may be included in this review. all other journals and related papers are excluded and neither used, nor cited. the first impact factor is based on the database ideas (ideas ). the impact factor survey "https ://ideas .repec .org/top/top.journ als.simpl e.html" is obtained on the internet. in this survey , journals (without working papers) are ranked. there are two journals not ranked in the vhb-ranking and not being within the upper half of the ideas impact factor survey: 'jahrbuch für wirtschaftsgeschichte' and 'international journal of financial research'. these two journals are therefore excluded from this review. all other considered journals are within rank or above. the second impact factor is developed by 'scimago' . there are two considered survey categories of the scimago ranking. in the category 'economics, econometrics and finance' , journals are ranked (scimago ) . the only journal that is ranked below the upper half of the rated journals is the 'review of derivatives research'. since this journal is 'a'-ranked in the prioritized vhb-ranking, it is nevertheless used in this review. on the whole, applying the evaluation methods, there are two journals not listed: 'international research journal of finance and economics' and 'journal of psychology and financial markets'. thus, the 'international research journal of finance and economics' is excluded from this review. the 'journal of psychology and financial markets' is not included in any rating because it no longer exists under this name. the current name (from on) of the journal is 'journal of behavioural finance' (taylor and francis online ). this journal is 'b'-rated in the vhb-ranking and ranked in the , journals in the scimago impact factor survey 'economics, econometrics and finance'. therefore, the journal is part of this literature review. in general, the home bias describes an investment behaviour in portfolio management where investors tend to overweight their home country's market and thus investing disproportionally more in assets of their home country compared to its share in the overall market portfolio. in principle, the notion domestic bias is being used with the same meaning. in contrast, the local bias is more of an intra-national phenomenon. it is always related to distance within a certain country. investors are inclined to invest a disproportionate high percentage in assets of firms located close to them, independent from country borders. this also results in a lack of diversification. it is also called 'home bias at home'. since the effects and causes of home/domestic bias and local bias are quite similar and both even considered in several papers, the literature on local bias' effects is fully included in this review. baltzer et al. ( ) examine the bridge between local bias and home bias. studying the data of stockholdings from germany and its neighbour countries they find that the local bias is not limited to national borders, it is cross-border-related. if the investment proximity is close enough, the inclination to local stocks exceeds borders. therefore, it is possible to perceive foreign countries as local if they are 'close enough'. there are some other inclinations towards the domestic market respectively biases in general that are closely related to home and local bias. these are foreign bias observed by chan et al. ( ) , foreign industry bias (schumacher ) , homeinstitution bias (mcqueen and stenkrona ), listing home bias (sarkissian and schill ) , flight home effect (giannetti and laeven ) , consumption home bias (obstfeld and rogoff ) and the academic home bias (karolyi ). there is much evidence of the existence of home bias and local bias. the degree of home bias can be measured by various approaches for numerous countries. there is an observable variation in the extent of home bias in the course of time. besides, induced by some factors the degree varies as well. evidence on the existence of the home bias can be observed in most countries worldwide. french and poterba ( ) , cooper and kaplanis ( ) , tesar and werner ( ) report evidence for oecd countries and stockman and dellas ( ) and dziuda and mondria ( ) for additional countries. oehler et al. ( ) confirm a significant home bias of german mutual fund investors and even a european home bias. german mutual funds not only hold a more-than-optimal share of german assets but also hold higher-than-optimal weights of other european countries' assets compared to the world market portfolio. lütje and menkhoff ( ) also prove the existence of the home bias specifically for german investors, dahlquist ( ) for investments in sweden. lippi ( ) confirms home bias for italian professional occupational pension fund managers investing in government securities, corporate bonds and equities. relating to different asset types, the existence of a home bias has been underlined for equities (bradshaw et al. ; diyarbakirlioglu ; tesar and werner ) , bonds (fidora et al. ; solnik and zuo ; tse ; ferreira and miguel ; tesar and werner ) , real estate (imazeki and gallimore ; eichholtz et al. ) and mutual funds (coval and moskowitz ; giannetti and laeven ; lütje and menkhoff ; oehler et al. ) . there is also much evidence of the existence of the intra-national local bias. moskowitz ( , ) document a local bias for mutual funds. amongst others, ivkovic and weisbenner ( ) , seasholes and zhu ( ) , huberman ( ) as well as hong et al. ( ) confirm the existence of a local bias of individual u.s. investors. grinblatt and keloharju ( ) prove a significant local bias of finish investors, kang and stulz ( ) for japanese. for german individual investors, baltzer et al. ( ) also document a local bias. parwada ( ) examines the location and portfolio choice of investment start-ups. the degree of startups' local bias is three times higher than the local bias extent reported by coval and moskowitz ( ) . pool et al. ( ) show that mutual fund managers in the u.s. overweight their home states where they come from. the degree of local bias is hardly measurable and measurements are even worse to compare to each other because local (or regional) is not a clearly defined area, in particular compared to home bias for which the borders (of a country) are clearly determined. additionally, it is hard to determine a comparing, well-diversified portfolio which is crucial to measuring the degree of the bias. in contrary, the home bias can be measured much better. in their basic work on the home bias, french and poterba ( ) show the degree of home bias for three countries based on data from the end of . u.s. investors invest . % domestically, japanese . % and uk investors just % of their equity portfolios. the lower level of british domestic investments was due to "prime minister thatcher's relaxation of capital control" (french and poterba , p. ) . these figures underline that there is a home bias, but the figures do not take into account the optimal weight of every country in a well-diversified portfolio. also with data from the end of the s, cooper and kaplanis ( , p. ) support the results of french and poterba ( ) but calculate a better comparable measure of the home bias by calculating the "domestic equities relative to the proportion of domestic equities in the world market portfolio": us %, uk . %, japan . %, germany . %, france . % and sweden even %. still, the home bias remains significant and strong. nowadays, home bias is measured with numerous approaches (some just slightly different to others). table gives an overview about the results of home table different measurements of home bias for selected countries the 'own calculations' are based on the data of chan et al. ( ) . 'own calculation ' is calculated according to fidora et al. ( ) . 'own calculation ' is the domestic capital market weight subtracted from the share of domestic investments. for mishra ( ) , the measures with the international capital asset pricing model (icapm, weekly) are included in the table french and poterba ( ) cooper and kaplanis chan et al. lau et al. own calculation own calculation fidora et al. hau and rey ( ) anderson et al. mondria and wu ( ) mishra ( ) year of data - - - - - - - bias measurements of selected countries which are explained briefly in the following section. one way to measure it, is to set the share of domestic assets in relation to the 'optimal' capm share of domestic assets. the difference of weights of domestic assets (in the actual and 'optimal' portfolio) is then considered as a measure of home bias. the capm home bias is defined according to morse and shive ( , p. ): hau and rey ( , p. ) "estimate total investment in the domestic market by domestic agents, … then simply divide it by total domestic market capitalization". the data is not normalized by the relation of the domestic capitalization to the world capitalization. fidora et al. ( ) give comprehensive data on the degree of home bias which in contrast to hau and rey ( ) is related to the share of the world capitalization based on the formula: fidora et al. ( , p. ) define w i as the "share of international assets in the country's portfolio" and w * i as the "market weight of the rest of the world seen from the viewpoint of a given country i". mature economies (e. g. the u.s., the uk, germany, japan etc.) exhibit, on average, a home bias of . %. emerging economies (e. g. in asia and latin america) show a significant higher degree of around %. chan et al. ( ) apply a resembling measure, but express the home bias as a natural logarithm. lau et al. ( ) calculate their home bias measure exactly the same way as chan et al. ( ) . since the measurement of lau et al. ( ) is based on data over a longer period of time (from to ), they obtain slightly different results. anderson et al. ( ) approach the calculation similar to the general definition of chan et al. ( ) , but distinct in two important aspects: first, anderson et al. ( ) perform a subtraction and second they do not express the results logarithmically. both factors cause the very different and not comparable measures of chan et al. ( ) and anderson et al. ( ) . mondria and wu ( ) use the same definition of home bias as ahearne et al. ( ) . mondria and wu ( ) define home bias as 'one minus the ratio share of "foreign equities in country i's portfolio" and "the share of foreign equities in the world portfolio" from perspective of country i'. going more into detail regarding the measurement approaches, there are different ways on how to build up the optimal weight of a country of a portfolio. mishra ( ) shows different approaches and measures of home bias based on different optimal portfolios. a comprehensive measure of both home bias and foreign bias can be found in cooper et al. ( ) who integrate home and foreign bias in one model and then measure so-called pure home bias relative to the model. pure home bias is just the part of home bias which cannot be explained by foreign bias and distance effects. thus, it is not a measure of home bias as considered by the large part of authors (and in this review) and the results are therefore not included in the capm home bias % = domestic holdings % − home capitalization world capitalization comparison of home bias measurements in this review. however, the model is very compelling and seems a promising approach different to the large part of existing studies. cooper et al. ( ) find that pure home bias can just be observed in emerging markets. for developed countries foreign bias can explain the large part of total home bias variation, i. e. "the home country is very much like a foreign country with zero distance. investors do not appear to exhibit a pure fear of foreign investment separate from their general dislike of distance" (cooper et al. ). as summarized in table , the measures are quite different. all papers confirm the existence of home bias for all countries although no consistent and standardized measure is applied. that is why the results sometimes show inverse directions. for example, chan et al. ( ) measure a larger home bias of the uk compared to the u.s., whereas the findings of fidora et al. ( ) show the contrary, even when neglecting the logarithmic presentation and even though the data is about a similar period of time. the consistency and accuracy of data and measurements is only guaranteed within one specific study and within one specific method of measurement. there are some papers stating that mismeasurement of the home bias leads to its existence. for example, lewis ( ) states that the used mathematical models may be the only reason that there is a home bias. but, since all of the presented studies provide evidence for the existence with different models, the effect of mismeasurement when dealing with the pure existence seems to be marginal. the degree of home bias varies by two points of view, a general decline in home bias in the course of time and relating to particular factors which impact the extent of home bias. since most of the available data is provided to u.s. investors (karolyi ), the degree of home bias for u.s. investors is best analysed in empirical research (eichler ) . for local bias, there is no disposable data. since the percentage of foreign ownership at the japanese stock market from the s to the s has increased, it can be considered as an indication of a general decline of home bias on course of time (kang and stulz ) . explicitly measured decline by levy and levy ( ) shows a decrease of u.s. home bias from until the s. this finding is confirmed by ahearne et al. ( ) . after the early s, home bias first slightly increased but has fallen again until and remains on a significant level around %. support of the decline of home bias for other countries comes from fidora et al. ( ) . both equity and bond home bias in mature markets have decreased during to . unfortunately, more recent data on the degree of home bias for other countries than the u.s. could not be found in any considered paper. the home bias also varies due to particular factors/variables. the economic respectively financial development of a country is one factor, however most studies show that there is no statistically significant correlation and impact. bae et al. ( ) exclude economic development of a country as a driving force for the equity home bias. also, dahlquist et al. ( ) challenge the influence and importance of the financial development on the equity home bias, as differences in financial development will be reflected in stock prices. chan et al. ( ) support these findings and do not find a significant impact of economic development. they detect that merely the stock market development and familiarity have a statistically significant influence on the extent of home bias. imazeki and gallimore ( ) use the same approach as chan et al. ( ) but examine real estate mutual funds and report similar results. the only significant factor which influences the degree of home bias in real estate is a combination of two variables: real estate market capitalization size and real estate market transparency. according to imazeki and gallimore ( ) general economic development also seems to not be important when studying real estate home bias. however, there is evidence for an influence of the variable 'economic development' with respect to home bias in bonds (ferreira and miguel ) . in accordance with pool et al. ( ) resource-constraints of managers influence the degree of home bias. managers with more limited resources exhibit more home bias. investors with a small amount of invested money are more inclined to exhibit home bias (karlsson and nordén ) . the effect of the size can be also transferred to the countries' size, i.e. the size has a positive impact on home bias as in a big country an investor has more opportunities to diversify his portfolio and is not dependent on diversifying internationally (mishra ) . anderson et al. ( ) examine the influence of culture on home bias and show that high values of the variables long-term orientation and masculinity lead to a relative decrease in the level of home bias, whereas uncertainty avoidance as a cultural characteristic increases home bias. the influence of gender is also proven by karlsson and nordén ( ) who show that overconfident investors (mostly men) are more probable to show home bias. lütje and menkhoff ( ) also underline the influence of overconfidence on home bias. the impact of cultural variables on investment decisions is confirmed by beugelsdijk and frijns ( ) , though only for foreign bias. employees in the public sector (having a high job security) acting as investors and investors with a low education/sophistication are more inclined of being homebiased (karlsson and nordén ) . according to mondria and wu ( ) home bias decreases with financial openness but remains in the long run due to interaction between "portfolio and information choices" (mondria and wu ). banks just like institutional 'investors' also exhibit an information-based home bias when they give loans to enterprises (presbitero et al. ) . banks even exhibit home bias when allocating their own bank assets and do not diversify internationally with the help of international subsidiaries (garcía-herrero and vázquez ). shapira and venezia ( ) examine differences in (behavioural) patterns of institutional and individual investors and show that professional investors have a better diversified portfolio (less home bias) than individual investors. sometimes the individual investors influence the institutional one. that means that the institutional investor is the one who actually invests but has to consider the 'wishes' of the individuals, e. g. considering mutual fund investing (oehler et al. ). lütje and menkhoff ( ) for home bias and ivkovic and weisbenner ( ) for local bias provide similar evidence in favour of a higher bias of individual investors. the reasons for a home bias and local bias may be divided according to french and poterba ( ) into two types: institutional and individual investor-related reasons. nowadays, since research has advanced, it seems appropriate to add one further reason, i. e. information. information-based explanations constitute a big part of recent research and the large part of recently published articles. nearly all of the literature discussed in this section refers to home and local bias for volatile assets which are equities/stocks and mutual funds investing in stocks. in their early work french and poterba ( ) mention institutional aspects such as capital flow restrictions, taxes and transaction costs as reasons for home bias. however, they do not find significant evidence for these reasons and conclude that institutional reasons may account for a certain degree of the home bias, but are unable to explain the large extent. in recent research the relevance of such institutional reasons is declining or the reasons are even rejected. institutional reasons consist of reasons which the actual investor cannot influence and which are set up by policy makers or are based on general economic principles. institutional reasons cannot explain any local bias. the identified reasons just relate to international home bias. transaction barriers are explicit barriers to an investment abroad and can be induced by different causes: taxes on foreign investments or not further specified transaction costs (e.g. cost for opening an investment account abroad). in the early s, black ( ) develops a model with a capital market equilibrium combined with explicit barriers (taxes) to foreign investment. in his model, a home bias occurs with these taxes on foreign investments. however, the results are not validated empirically. stulz ( b) constructs a similar model by introducing barriers to international investment. compared to black ( ) the model has slight differences in the assumptions, especially in the calculation of the costs respectively taxes. though, he finds similar results that holding foreign assets is costly to domestic investors, therefore hold less by domestic investors. stulz ( b) also gives no empirical support to his hypotheses and to the predictions he derived from his model. but, even in a model without barriers to international investments, investors hold a higher share of domestic assets than expected by standard portfolio theory (stulz a) . the result can be considered as a first step of doubting explicit barriers to investment as an explanation for home bias. in order to assume transaction costs as a reason, risk aversion levels have to be set to unreasonable extents that cannot be shown in data (cooper and kaplanis ) . tesar and werner ( ) explain that the turnover rates for foreign stocks are higher than for domestic stocks. given that fact, transaction barriers and costs cannot be considered as a plausible explanation. also, french and poterba ( ) support the hypothesis that taxes are possibly not the reason for home bias. in a more recent reconsideration of tesar and werner ( ) , warnock ( ) approves the basic finding: transaction costs are not able to explain home bias. model-based, michaelides ( ) shows that small additional costs to foreign investments can generate a home bias. these costs may result from fees to international investment or costs of opening a foreign account. michaelides also suggests information asymmetry as a reason. very high taxes and cross border taxation may lead to home bias (mishra and ratti ) . however, such high tax rates do not seem to be existent in today's economy. an appropriate treatment by countries' policy makers with double taxation is important. as there has been more deregulation and liberalization of capital markets and capital flows over the last decades, home bias should have been decreased significantly which is not the case. recent studies challenge explicit barriers as an important reason. ahearne et al. ( ) test the impact of direct and explicit barriers on international investment. they find that even though these barriers are statistically significant they are not economically meaningful. dahlquist et al. ( ) , coën ( ) , glassman and riddick ( ) and baltzer et al. ( ) challenge the explanations of home bias induced by explicit barriers as well. none of the studies directly rejects any influence of transaction costs on home bias at all, it is rather that transaction costs and taxes as the single reason are unable to fully explain home bias. there is support of the fact that direct costs on foreign investments exist and contribute to a certain, however undefined, degree of home bias. this seems plausible since there are still some kind of cross-border transaction costs in most countries. costs for foreign investments have decreased enormously in the last decades (levy and levy ) . the existence of costs on foreign investments is confirmed, but these costs do not serve as an explanation of home bias. due to the decrease in general foreign investment costs the home bias should have been decreased as well. correlation of markets leads to extra costs for investors. since correlation of markets has increased significantly, the sum of the costs remains stable and thus home bias as well (levy and levy ) . the induced additional cost is proportional to the so-called 'home bias magnification' (hbm) factor that can be calculated with the following formula, "where ρ is the average correlation between markets" (levy and levy ) : the hbm explains the finding that there is no economic benefit from investing abroad in highly correlated markets. in summary, high correlation equals low diversification gains. based on a model, michaelides ( ) also supports the idea that a positive and strong correlation between domestic and foreign markets leads to a significant home bias. internal governance of firms is seen as an institutional reason for home bias because the investors are not able to change any of these facts. according to dahlquist et al. ( ) , across countries % of shares are not traded at all which means that these shares are not available for public investors. they are with controlling shareholders (e.g. a family or similar). in the u.s., the percentage of controlling shareholders is lower. consequently, investors cannot hold the world market portfolio (which assumes that all stocks are traded) even if they would like to, regardless of and independent on any other reasons for home bias. home bias is significantly smaller for the u.s. and other countries taking into account the fraction of controlling shareholders. mishra ( ) measures 'institutional quality' which highly influences corporate governance as well. he finds a correlation to home bias and claims that good corporate governance is appreciated and therefore leads to lower home bias. poor governance of firms can also be shown in another aspect, meaning high managerial control and a high level of insider control. if a firm is poorly governed, foreigners are inclined to hold fewer equities of such firms, thus investing more in their domestic market, exhibiting home bias (leuz et al. ). in poorly governed firms, expropriation and governance problems are more likely. these results can help to explain home bias. investors are 'forced' to invest disproportionately in their domestic country (exhibit home bias), because the world market portfolio is not available to them for investment. french and poterba ( ) already mention informational aspects as one possible reason for the shown investor-specific behaviour: "they [investors] may impute extra 'risk' to foreign investments because they know less about foreign markets, institutions, and firms" (french and poterba , p. ). different information results in different expected risk-return patterns, hence inducing home bias if the perceived information advantage is towards domestic assets. information asymmetries are a reason for both intra-national local bias and international home bias. shukla and van inwegen ( ) provide the first study on informational advantages as a reason for home bias and show that domestic investors (u.s. investors) have an information advantage compared to foreign investors (uk investors). the prevalent asymmetry in information induces a home bias of the uk investors, because they underweight the foreign u.s. market. the behaviour of underrating the u.s. market seems rational due to the poor performance of foreign uk investors which discourages them from investing abroad. both zhou ( ) and michaelides ( ) in a model and coval and moskowitz ( ) confirm the existence of informational asymmetries as an explanation of home bias for investors whereas presbitero et al. ( ) for banks giving loans. when dealing with informational asymmetries and home bias, the question arises why informational advantages in a world with a high level of information transmission (especially by the internet) still exist. van nieuwerburgh and veldkamp ( , ) show that the advantages are based on fundamental and natural human behaviour: information is rated differently depending on the exclusiveness. exclusive information is worth more. these findings of investors' behaviour can explain both local and home bias, national borders are not taken into account. so, when taking information-based explanations of home bias it is not just about the existing advantage, it is also about the learning process of obtaining information. this result is closely related to choi et al. ( ) who conclude that the higher the learning capacity of an investor, the more concentrated the portfolio is. since home bias is a type of portfolio concentration, this finding means that an investor is inclined to learn more and more about the assets he already knows in order to obtain specific information. the higher the learning capacity the better the behaviour works out. the model by dziuda and mondria ( ) supports the information-based explanation of home bias. but in their model, they attribute the informational advantage to the clients of professional investors (managers). the managers' reply leads to a reinforcement cycle. thus, they prove information to be the reason for home bias, however challenge the source of the information asymmetry and advantage as determined in coval and moskowitz ( ) . these differences can be due to studying intra-national investment and local bias (coval and moskowitz ) , whereas dziuda and mondria ( ) exemplify international portfolio choice and home bias. the results of a survey (run in ) about german fund managers analysed by lütje and menkhoff ( ) are rather in accordance with coval and moskowitz ( ) that the existence of home bias is unrelated to clients' preferences. the fund managers themselves perceive a local information advantage, expect higher returns of domestic investments and therefore their investments are home-biased. this perceived information advantage does not exactly hold to be true. lütje and menkhoff ( ) conclude that pure informational explanations of home bias should be challenged. hong et al. ( ) , in contrast to moskowitz ( , ) who study how investors gather information, examine how investors share information. investments in one city correlate, i. a. by word-of-mouth information transmission between investors. the finding constitutes a reinforcement process of any local bias or home bias, because one investor who is slightly biased transmits this bias to other local investors. it comes to a positive feedback amongst investors located nearby. hence, information asymmetries play an important role in explaining home bias (hong et al. ) . also, hau ( ) identifies information asymmetries to be inducing home bias. the discovered information asymmetries are caused by linguistic and cultural differences between traders. a pure geographic bias which is just based on distance and not informational aspects can neither be confirmed nor fully discarded. the above-explained standard local information approaches claim that there is only local/intra-country information and better knowledge. albuquerque et al. ( ) introduce 'global private information' because local information alone cannot explain different performances of investments with informational advantages. local bias is closely related to distance effects meaning geographic proximity. if an investor is located more proximate to a potential investment opportunity, she has often access to more and better information, the accessibility of information is better and less costly. three firm characteristics (based on u.s. data) lead to an informational advantage and thus to local bias: a small firm size, a high leverage and a low international output tradability (coval and moskowitz ) . if all of these three characteristics are given, there is the biggest informational advantage for local investors. the result can be easily explained, because it is precisely for such characterized firms that local information can be obtained most easily and informational advantages have the biggest impact on performance (e.g. the firm is not known as widespread, therefore the information about the firm is not either). as well, geographic proximity leads to informational advantages for local investors. local investors have lower costs to monitor the local firm and the local stock or have special access to specific, investment-relevant information (coval and moskowitz ) . baik et al. ( ) and gaspar and massa ( ) also support the information advantage theory of local investments. ivkovic and weisbenner ( ) and ivkovic et al. ( ) go the argumentation the other way around and conclude from a better performance of a biased/concentrated portfolio as local information advantage. they find that investing locally in combination with a concentration on a very few stocks, the best results would be yielded. besides, by mimicking the behaviour of the local investors, outside investors are able to increase returns (ivkovic and weisbenner ) . information advantages also cause the local bias for investment decisions of startups (parwada ) . the founders are able to maintain their local and familiar network of the former employment and use the local information. this leads to a local bias in equities three times higher than the local bias of mutual funds, reported by coval and moskowitz ( ) . even investment banks exhibit local bias due to informational advantages when placing municipal bonds especially by local investment banks (butler ) . the reason 'informational advantage' for local bias is detected for both investor types but unfortunately the evidence is limited to u.s. investors investing in the u.s. only bae et al. ( ) , on the basis of analysts' data worldwide, observe an information advantage for local investors respectively analysts over foreigners. some studies challenge the information-based explanations of local and home bias. even though seasholes and zhu ( ) state that there is a local bias in the u.s., they do not observe informational advantage of local investors over foreign investors. the same conclusions are made by pool et al. ( ) . both findings are based on the comparison between the performance of biased and not-biased portfolios. it may be the case that the possibly existing surplus of information of a domestic or local investor has a poor quality, hence not results in higher returns. glassman and riddick ( ) subsume information asymmetries to differential perceived riskiness of foreign assets and claim that perceived riskiness adjustments cannot explain home bias solely. though, all these studies questioning information-based reasons follow rather implicit approaches, i. e. concluding from performance results on possible reasons. accounting and reporting standards are a reason mentioned frequently in research about home bias. it is reasonable to assume that the adoption of accounting standards is related to information asymmetries. as bradshaw et al. ( , p. ) say "informational issues that affect home bias are multilevel and at least partially due to reporting decisions". examining investment decisions of institutional u.s. investors in non-u-s. firms, bradshaw et al. ( ) document that if a non-u.s. firm has a high level of adoption of u.s. accounting standards, u.s. investors invest more in such a firm. thus, there is a higher degree of diversification, hence less investment in the domestic market (home bias). the adoption of u.s. accounting standards contributes to a reduction of information processing costs for potential investors. besides, investors feel familiar and comfortable with the well-known standards. u.s. investors are home-biased towards accounting standards that they know (bradshaw et al. ) . with a different approach, ahearne et al. ( ) confirm that information costs and asymmetry are highly related to accounting standards. firms are able to reduce information costs for potential investors by listing their equities publicly in foreign indexes and thus have to comply with the regulatory issues. for example, just % of german firms are listed in the u.s., while % of dutch firms. that is one potential reason why u.s. investors underweight german companies and assets much more in their portfolio compared to dutch. if all firms were listed in the u.s., a large extent of home bias should be eliminated. though, not all of it as public listing and adopting certain accounting standards are only two aspects contributing to home bias, i. e. not being able to entirely explain the extent (ahearne et al. ). mishra ( ) supports the finding that foreign listing has an negative impact on home bias. aggarwal et al. ( ) report that u.s. mutual fund investors have certain preferences (factors) related to accounting issues when investing in emerging markets. countryspecific factors consist of accounting standards, shareholder rights and legal framework. the issuance of american depository receipts, accounting transparency and the voluntary adoption of accounting standards belong to firm-specific factors. all of the mentioned factors have to be at least partially fulfilled, otherwise home bias occurs for u.s. investors. there might be different results for other countries since u.s. accounting standards belong for decades to the highest quality standards set (bradshaw et al. ) . in other countries with less-qualified standards (e.g. germany or france), investors may be less biased towards their domestic standards. however, it is expected that accounting standards also play a role for those countries when explaining home bias, though having less importance. covrig et al. ( ) provide evidence on accounting standards as a reason for home bias in an international setting. using international accounting standards (ias), firms are able to attract more foreign investors, because ias contribute to better and more useful information for those foreign investors. therefore, the degree of home bias for foreign investors declines. for firms operating in a poor information environment with low visibility the impact is even higher. the number of foreign investors increases (controlled for other variables) from % to . % when adopting ias compared to local accounting standards. a higher level of corporate disclosure (resulting in more information for potential investors) is able to reduce home bias (eichler ) . two prerequisites make the corporate disclosure efficient to reduce home bias. on the one hand, security laws have to make the statements credible and reliable by punishing false information. on the other hand, the disclosure statements have to be understandable for the investors, i. e. the investor can interpret them easily without much incurred additional 'cost' for understanding. in contrast to the above-mentioned studies, which discussed the regulatory requirements for accounting standards (eichler calls this corporate disclosure de jure, from law), eichler ( ) shows that only the formal regulatory requirements have no impact on home bias. for the investors, it is always of importance how they are applied (the corporate disclosure de facto), which means how a specific firm conducts their accountings and disclosure. but the actual de facto corporate disclosure is normally highly dependent on the de jure regulatory requirements for accounting. slightly different assumptions when calculating the results and impacts may lead to such different results. an investor who is familiar with a firm may have informational advantages about the company, so familiarity is in some cases highly related to information asymmetries. this so-called information-based familiarity should not be confused with behavioural familiarity (massa and simonov ) . investors are inclined to invest in assets which they are familiar with. massa and simonov ( ) see familiarity to stocks in the meaning of geographically and professionally close and informationdriven. bodnaruk ( ) supports the existence of familiarity in combination with information asymmetry as a reason for local bias. in a setting of moving, the evolution of familiarity can be observed. former ties to firms get loose and new ties and familiar relations are build up close to the new residence (bodnaruk ). the evidence found on information-based familiarity is limited to local bias and both studies are relying on the same data, i.e. swedish data and investors. thus, the explanatory power of these specific findings is narrowed. however, without distinguishing information-based familiarity and general information asymmetry but rather considering information-based familiarity as a normal informational reason, the evidence on information-based explanations for home and local bias is still overwhelming. behavioural and individual reasons are caused by human's nature. behavioural reasons are directly related to investors' beliefs, perceptions and personality and are normally uncorrelated with market's development. the introduced behavioural reasons are optimism, ambiguity aversion/competence/experience/financial literacy, pure familiarity/patriotism/loyalty and hedging against uncertainty. these reasons for home and local bias constitute, combined with the informational reasons, the major part of explanations. investors are, in general, more optimistic about the domestic market and systematically assume higher expected returns. this perception results in biased portfolio choices, thus providing an explanation for home and local bias. first, two types of optimism, absolute optimism and relative optimism, have to be distinguished. according to strong and xu ( , p. ) , absolute optimism "occurs when investors are more optimistic about their home market than they are about foreign" whereas "relative optimism towards domestic equities occurs when investors are more optimistic about their home market than are investors from other countries". both types of optimism contribute to the explanation of home bias. french and poterba ( ) already suggest that investors systematically are more optimistic about the domestic market. shiller et al. ( ) study the expectations, representing the degree of optimism, from japanese and u.s. investors based on empirical data and surveys. the answers in the survey correlate, but there is a vast difference in the actual numbers. the investors always exhibit a higher relative optimism for their domestic market which helps explaining home bias. shiller et al. ( ) are aware of possible information asymmetries, but assume that both investors have nearly equivalent information. in a model with a standard bayesian approach, higher expectations of investors for the domestic market are confirmed (pástor ) . prior beliefs are incorporated in the model. therefore, it is possible to be free from the two disputing approaches: relying fully on standard asset pricing models or not believing these models at all (just relying on data). concluding from the model, home bias can be justified for u.s. investors when the prior beliefs are stable in reality. though, pástor ( ) gives no empirical evidence of his conclusion. li ( ) puts empirical evidence on the model of pástor ( ) setting the parameters of prior beliefs consistent with existing literature. in this framework, when computed with actual g data, li ( ) supports the hypothesis of pástor ( ) . investors consider foreign investments much riskier, resulting in a higher expectation and a higher optimism for the domestic market. based on a survey of fund managers, there is further and more comprehensive evidence on differences in optimism as an explanation for home bias. the fund managers surveyed exhibit a higher relative optimism towards the domestic markets (strong and xu ) . the evidence on absolute optimism is not directly supporting home bias. only for european and japanese fund managers, an absolute optimism can be found, hence explaining home bias. however, according to strong and xu ( ) , the absolute optimism findings are subject to the studied time period. in summary, fund managers have "a bias towards domestic equities and a relative bias against foreign equities" (strong and xu , p. ) . the result that relative optimism has a positive relation to home bias in portfolio holdings of equity and bonds is confirmed by solnik and zuo ( ) . they are the first to give evidence on a broader time span which is independent of market phases (bull, bear, market crash). for specifically german equity fund managers, a relative return optimism for domestic securities leading to home bias towards german investments can be found (lütje and menkhoff ) . lai and teo ( ) discover that local analysts of eight asian emerging countries are more optimistic about the domestic market than recommendations from foreign analysts. if potential investors base their investment decision upon the recommendations of local analysts, this finding can explain home bias. as a result, there is much evidence of relative optimism for numerous investors' countries. however, the studies on absolute optimism are limited. relative optimism should be considered as an important explanation contributing to home bias. prior beliefs contribute to a certain degree to the existence of home bias. in general, home bias in equities and bonds is driven by behavioural and informational factors whereas home bias in bonds is also influenced by institutional factors (e.g. capital control, investor protection, legal framework). though, there may be some limitations to the evidence that should not be neglected. strong and xu ( ) question what came first and what results: relative optimism or home bias. at least mutual dependencies can be confirmed. but, behavioural reasons, even for sophisticated fund managers, cannot be rejected. informational reasons together with behavioural causes can exist simultaneously and both contribute to home bias (lütje and menkhoff ) . in decisions under uncertainty individuals' preferences are numerous. ambiguity and aversion to ambiguity of individual investors are one inclination of investors' behaviours. some behaviours cannot be explained by ambiguity aversion, but rather based on competence and experience of investors. besides, financial literacy and the extent of advices seeking are other behavioural approaches. ambiguity aversion is a behavioural characteristic of human beings and was tested and confirmed in an experiment by ellsberg ( ) . in an ambiguous investment setting no return distributions are known at all. these findings are "in trouble with the savage axioms" (ellsberg , p. ) . relating to portfolio choices of investors, ambiguity aversion can be part of an explanation for home bias. in a recent study, dimmock et al. ( ) examine how ambiguity aversion refrains investors from investing abroad. ambiguity aversion is negatively correlated to foreign stock ownership. this means that ambiguity-averse household investors hold less foreign equities in their portfolio than an average investor. since the majority of people is ambiguity-averse, there is a certain degree of home bias. guidolin and liu ( ) provide supporting evidence in line with the results by dimmock et al. ( ) based on a model with incorporated prior beliefs of an u.s. investor in the domestic capm. in contrast to pástor ( ) , they do not rely on the standard bayesian approach. within this model, ambiguity aversion of an investor leads to strong and significant home bias in both bull and bear periods. it is independent from the extent of risk aversion and from the degree of prior beliefs respectively trust about the efficiency of the domestic capm. guidolin and liu ( ) validate the model based on empirical data. according to laeven ( , ) ambiguity aversion is reinforced in times of crisis. giannetti and laeven ( ) are the only assuming that amongst other reasons ambiguity aversion intensifies local bias (and not home bias) of investors in times of crisis. beyond the probability-based (ambiguity) explanation, heath and tversky ( ) examine the rather just psychological aspects of the preference for competencebased decisions. the preference of investors, that they establish, is called 'competence hypothesis'. this theory is highly applicable to investors' portfolio choice and home bias. the event of being competent and skilful in this setting is like betting on-in this sense meaning investing in-domestic assets. first, it is, in fact, the case that investors perceive themselves as more competent about assessing domestic assets and overestimate their own judgements. second, when investing in domestic assets it is generally assumed that the investor has to be more competent. the investor would have the ability to gather information and would have easier access to knowledge about the investment opportunity. kilka and weber ( ) examine the perceived competence of investors and the implications on the expected returns in an upswing market and conclude that competence-based asymmetric judgements and expected returns of domestic stocks compared to foreign stocks contribute to the existence of home bias. individuals feel more competent about assessing domestic stocks and perceive them more valuable for making investments. the feeling of competence is closely related to experience. making and gathering experience can lead to a higher perceived competence of investors. abreu et al. ( ) show that investors want to acquire experience by investing in domestic securities and consider their first step to investing abroad thoroughly. investors who invest domestically more often tend to decide on investments abroad earlier, because, based on the domestic experience, they feel more competent about investments in general, including foreign investments. married, female and older investors wait longer until their first investment abroad; wealthier investors and better educated investors start earlier. according to graham et al. ( ) especially male investors, investors with a larger portfolio and with more/better education feel more competent. these investors with a higher perceived competence exhibit less home bias. overall, it can be concluded that a learning process is an important feature of foreign investment. this learning process has, in general, similarities to the learning process examined by van nieuwerburgh and veldkamp ( ) , though the two findings have to be distinguished. for both studies learning is important for portfolio choice. however, van nieuwerburgh and veldkamp ( ) study learning and information which always results in an information advantage. abreu et al. ( ) use a more general setting about learning and competence perception, no matter whether there are any competence-based informational advantages which may induce a better performance. this difference demonstrates the importance of why we distinguish between behavioural respectively personal reasons and information-based reasons for home bias. some other studies merely examine the experience of investors. measuring experience by the age variable (high age is equivalent to a high experience level) the degree of home bias decreases with the age of the investor (lehmann-hasemeyer and neumayer ). this result is contrary to lütje and menkhoff ( ) who consider the age as a determinant of risk aversion and thus conclude that home bias increases with advancing age. they do not relate age to experience. but, lütje and menkhoff ( ) also report that investors with less experience exhibit more home bias. both karlsson and nordén ( ) for home bias and pool et al. ( ) for local bias document that less experience has a positive impact on the bias. the opposition in the findings about age and home bias cannot be resolved. presumably, the impact of age on home bias is dependent on the fact whether risk aversion or experience is stronger at influencing home bias. closely related to experience and competence is financial literacy which is examined in many studies and might be related to home bias. financial literacy especially determines the degree of advice seeking of investors. investing abroad without consulting advisors is generally considered risky. calcagno and monticone ( ) point out that financial literate people consult advisors with a higher probability. this means that advisors do not resolve the problem of low financial literate investors who rely on their own competence. kramer ( ) differentiates between perceived and objective literacy. investors who are confident about their literacy 'are less likely to seek financial advice', however referring to a objective measure no relation can be found. the advice from banks to (in particular illiterate) investors seems not to be the best for fulfilling the individual investors' goals (mietzner and molterer ) . this statement is mainly due to high commission and bank fees. consequently, on the one hand being financial illiterate and lacking of advice may lead to poor diversification, i. e. under-diversification of the portfolio. home bias is such type of poor diversification. on the other hand, the received advice may not always be beneficial for preventing biased investment decisions. however, these are just assumptions and not empirically fully proven yet. therefore, financial literacy and resulting advice seeking and their potential influence on home and local bias should be studied in future research. in a single study, von gaudecker ( ) proves that both financial literate households and those who seek advice show a lower degree of under-diversification and thus their investment outcomes are better. this study can be the starting point for future research by relating under-diversification more detailed to home bias as a specific type of poor diversification. all in all, there is much evidence that competence and experience do have an impact on home bias. it seems reasonable to argue that investors feel more competent about domestic assets and therefore are home-biased. the influence of experience is obvious and confirmed as well: less experience leads to a higher degree of home bias. the influence of age is ambiguous, making no conclusion possible. there are no findings about competence and local bias, it may be supposed that the results are also valid for local bias. lack of experience has a positive influence on local bias. concerning financial literacy and advice seeking, there is no direct evidence on home and local bias, however a relation can be assumed. both familiarity, patriotism and loyalty are closely related to each other since they all perceive the bond/solidarity of investors with their country. as grinblatt and keloharju ( ) claim, familiarity and patriotism are similar and hard to distinguish. familiarity can be driven by information advantages and vice versa. though, familiarity is often examined on its own without any relation to information, labelled 'pure familiarity' or behavioural familiarity (massa and simonov ) . behavioural familiarity of investors can contribute to home and local bias as well, since investors are more familiar with domestic/local assets. the characteristic of pure familiarity is that investors show no performance improvement when investing based on pure familiarity. better performance would only occur if investors acted according to information advantages and information-based familiarity. though, different to many studies, in this review not all of the analyses, that state a not-better performance of biased portfolios, are considered to be in favour of the familiarity explanation for home and local bias but have to provide explicit evidence that pure familiarity plays a significant role to explain the bias. tse ( ) for the bond market supports the pure familiarity hypothesis. mcqueen and stenkrona ( ) consider familiarity as the reason for the so-called home-institution bias, another phenomenon closely related to original home bias. the home-institution bias is the highest for provincial and unsophisticated investors, especially with low education, low income and low trading frequency. for local bias of finish investors, grinblatt and keloharju ( ) identify pure familiarity as a reason. first, investors prefer to invest in firms which are located nearby. second, investors select firms with the annual reports in their native language. third, they invest more money to firms whose ceo has a cultural background the investor is familiar with. the effects are less prevalent for well-versed and sophisticated investors. however, it remains unclear if these results can be transferred to higher capitalized markets like the uk or the u.s. also, pool et al. ( ) reject the information-based explanation of local bias and identify pure familiarity as a reason for local bias, even among professional investors in the u.s.. these findings are consistent with huberman ( ) who documents familiarity as an explanation for investment decisions of individual investors. he defines pure familiarity as "a general sense of comfort with the known" (huberman , p. ) . according to giannetti and laeven ( ) , who study local bias, familiarity aspects are probably even higher in an international setting, like home bias. bhattacharya and groznik ( ) , loughran and schultz ( ) and morse and shive ( ) also report familiarity as a reason for home and local bias. in contrast to general pure familiarity, which is rather referring to the individual, patriotism and loyalty are often attributed to a larger and specific group of people. morse and shive ( ) examine the influence of patriotism on portfolio choices and home bias. from a survey of countries they find that patriotism and home bias are positively related. in a more patriotic country, an average portfolio consists of more domestic equities compared to a less patriotic. the results are valid and robust for other home bias reasons. within a country, the level of home bias is also lower for regions with a lower level of patriotism. cohen ( ) shows that investment decisions in an intra-national setting are driven by loyalty which is similar to patriotism. if the finding of cohen ( ) can be transferred to international investment decisions and home bias, remains unclear. human beings try to avoid uncertainty or at least want to reduce the impact of uncertainty. in a financial setting, an instrument of trying to control uncertainty is called hedging. in principle, hedging can be regarded as a reason which is based amongst others on the individuals' risk aversion. the circumstances and the framework why investors hedge (real exchange rate volatility and inflation risk) are given in economy and therefore hedging could also be considered as an institutional reason. but, since the focus is on the individual herself, hedging is here subsumed to behavioural aspects. choi et al. ( ) show that the extent of home bias and uncertainty in general have a positive correlation. lehmann-hasemeyer and neumayer ( ) confirm the correlation. uncertainty avoidance can be combined with information-based explanations. in uncertain and turbulent times (measured by market volatility) the informational advantage of local and domestic investments is worth more, because it can be harder to gather valid information during crisis. consequently, investors are more biased towards domestic and local assets in times of high market volatility, retracting to the familiar and to the local investments is a plausible explanation (giannetti and laeven ) . overall, uncertainty is always existing, though at varying degrees. investors try to hedge against uncertainty, i. e. hedging against real exchange rate volatility, deviations from purchasing power parity (ppp), inflation risk and general market volatility. exhibiting home bias is one solution to hedge. the real exchange rate is subject to fluctuations and therefore represents uncertainty. that is why investors want to hedge against the variation in the real exchange rate. since within a common currency area there is no need for exchange rate hedging, local bias cannot be influenced by hedging real exchange rate volatility. in a twocountry equilibrium model, distribution costs lead to international price differences and real exchange rate fluctuations. investors try to hedge against real exchange rate risk by exhibiting home bias (harms et al. ) . michaelides ( ) also shows that the exchange rate volatility has a positive impact on home bias. challenging these findings, hedging motives may be rejected for explaining home bias when saying that "hedging against price uncertainty is neither necessary nor sufficient for home asset preference" (eldor et al. , p. ) . however, all of these three studies are model-based and not entirely underlined by empirical evidence. fidora et al. ( ) give empirical evidence and acts in favour of harms et al. ( ) confirming the hedging motive against real exchange rate volatility. changes in the real exchange rate do have a positive relation to home bias. the impact is higher for home bias in bonds because bond returns are a priori less volatile than returns on equity, thus the volatility of the real exchange rate can influence stronger. fidora et al. ( ) show that if the real exchange rate volatility is set to zero, home bias in bonds can be reduced by % points whereas equity home bias decreases only by about % points. real exchange rate hedging is related to hedging ppp deviations and inflation risks. with incorporating both inflation risk and deviations from ppp in their model, adler and dumas ( ) find that people in different countries hold divergent portfolios. the difference should be able to hedge the inflation risk. the model of stulz ( b) also acts in favour of these explanations that investors desire a hedge against ppp deviations and inflation risk. however, cooper and kaplanis ( ) challenge the main result of the model of adler and dumas ( ) . they test the model with empirical data from eight developed markets (i. a. the uk, the u.s., germany, japan). hedging just would be a possible reason if there is a negative correlation between equity returns and domestic inflation and if investors have a very low level of risk aversion which is typically not assumed in real economy (cooper and kaplanis ) . hedging (of inflation risk) can just be attributed as a reason for home bias if risk aversions are set at a very low level in various models (e.g. model of adler and dumas ( ) and stulz ( a, b) ). in contrast to these theoretical considerations and with conventionally assumed levels of risk aversion, uppal ( ) even shows that investors should prefer foreign investments in such a setting. also, mishra ( ) finds no significant correlation between inflation and home bias. glassman and riddick ( ) claim that, with a slightly different approach and a relaxation of the ppp assumption, some of the home bias by cooper and kaplanis ( ) can be explained. additionally, some other hedging motives are considered to explain the home bias. stockman and dellas ( ) show model-based that hedging against price uncertainty of nontraded goods induces home bias. tesar and werner ( ) show for five oecd countries that holding a disproportionate number of domestic assets can serve as a hedge against shocks to domestic income which have to happen frequent and at a strong extent. the possibility of hedging human capital risks is also incorporated into some models and examined empirically (baxter et al. ; coën ) . the large part of studies finds a positive correlation between returns on domestic assets and human capital. therefore, using human capital as a hedge is not reasonable as both variables show a positive and no reciprocal correlation. overall, the evidence on hedging motives is discussed controversially in the literature. some studies are supporting different hedging motives as an explanation for home bias, others cast doubt on the impact of hedging. the evidence that hedging only bottazzi et al. ( ) find a negative correlation between human capital and domestic securities. real exchange rate risk is part of an explanation of home bias seems strongest. since most of the literature about hedging is older than years, examining hedging motives should be subject for further analyses nowadays, especially with respect to newly perceived uncertainties induced by the coronavirus pandemic. since home bias and local bias do not follow standard portfolio selection theory and capm, they have economic implications. apart from implications at the microeconomic level (differences in performance and returns of individual investors' portfolios), there is also an impact on a macroeconomic level. the most-often analysed implications of home bias focus on investment performance. numerous studies examine explicitly the relation between home bias respectively local bias and the performance of such portfolios. while there is also research that focus on the relationship of concentration of portfolios and performance, it has to be clarified that home-biased portfolios are concentrated towards domestic stocks. that is why both research types give a hint about the performance of home-and local-biased portfolios. there is evidence of both better and worse performance of biased and concentrated portfolios compared to well-diversified investment structures. especially if information-related causes drive the portfolio bias, a superior performance can be observed. shukla and van inwegen ( ) report that domestic mutual fund investors (from the u.s.) perform better than foreign investors (from the uk) and are able to generate higher returns. for the german market, hau ( ) confirms that home german traders perform better than foreigners due to the linguistics barrier (non-german speaking countries). for high frequency trading and whether the investor is located close to the stocks' firms headquarter the performance is even better (hau ) . in the indonesian market, dvorak ( ) suggests that local investors from indonesia with an informational advantage generate superior returns compared to foreign investors in the short-and medium-term. performance is best when combining local individuals' informational advantage with the expertise and experience of global brokerages. especially in the short run and for not internationally listed stocks, domestic investors outperform foreign investors due to informational advantages regarding the finnish market (kalev et al. ) . massa and simonov ( ) approve higher returns when holding home-biased portfolios. for real estate investments as well, eichholtz et al. ( ) report a better performance when investing in real estate companies domestically. in markets with given information asymmetries, portfolio concentration can have positive results on the performance (choi et al. ; ivkovic et al. ) , as information asymmetries lead to superior knowledge about investment opportunities. based on a model with delegated asset management dziuda and mondria ( ) show that fund managers who specialize in the domestic market generate higher returns. thus, at least to some extent home bias seems to be a rational behaviour to exploit superior knowledge. conclusions on performance can also be drawn for local bias by comparing the performance of intra-national investors with each other. coval and moskowitz ( ) elaborate a better performance and higher returns for local-biased mutual funds in the u.s. market compared to more diversified funds ( . % higher returns per year, with km as local). ivkovic and weisbenner ( ) confirm the superior performance of local-biased individual investors. on average local investments earn annually . % higher returns compared to non-local investments. thus, both institutional/professional investors (fund managers) and individual investors (households) are able to exploit local information for performance improvement (coval and moskowitz ; ivkovic and weisbenner ) . baik et al. ( ) also report higher returns of local-biased investments. performance could be pushed even higher if a local focus was combined with diversification in this certain local area (bodnaruk ). this result is in conflict with ivkovic et al. ( ) who suppose that it yields highest returns if investors invest locally and, on top, concentrate the local investment on very few stocks. the puzzle can be resolved by claiming that bodnaruk ( ) assumes a general information advantage of local stocks whereas ivkovic et al. ( ) suppose that investors should specify on the few local assets about which the superiority of information is highest. the performance is also better for local-biased venture capital investments (cumming and dai ) . during uncertain times and a high market volatility, exhibiting local and home bias seems to result in a better performance compared to a higher diversification (giannetti and laeven ) . these findings suggest that exhibiting home and local bias is not necessarily an irrational behaviour as the returns of biased and concentrated portfolios are often higher. if biased portfolios do not perform better (or even worse) than more diversified portfolios, local bias and home bias should be considered as critical behavioural patterns. pool et al. ( ) claim that the preference for home-state investments of professional investors in the u.s. does not bring higher returns, especially compared to local investments, even though local (geographically) investments perform better. loyalty-based home bias in portfolio choice of retirement plans of individual u.s. investors makes up about % loss in retirement income (cohen ). for local bias, seasholes and zhu ( ) document that biased 'holding portfolios' of individual investors do not obtain excess returns. when considering the transaction-based local-biased portfolios the purchase of stocks even underperforms the sale. huberman ( ) also approves the fact that local bias is not a smart behaviour due to the lack of return improvements. relating to the performance of home-biased portfolios, grinblatt ( ) examines investments in finland, distinguishes sophisticated investors from unsophisticated investors and shows that foreign investors perform better than any domestic investors. morse and shive ( ) support the worse performance theory. bailey et al. ( , p. ) also observe a better "information-processing ability" of foreigners compared to locals resulting in a better performance of foreigners. the economic home bias (ehb) by levy ( ) shows explicitly the economic loss induced by home bias and is dependent on the correlations of the different markets. if markets are highly correlated, the ehb seems to become insignificant. when neutralizing the means and variances in their calculations, the ehb is significant for the u.s. and france, concluding that the home bias remains a puzzle, because there are no benefits from biased portfolios, rather return losses (levy ) . overall, the results on performance implications are analogue to the number of findings on the particular reasons. the major part of studied reasons is about information asymmetries. it seems that the reasons that are assumed for local and home bias play a crucial role when determining whether the considered biased portfolio performs better or worse than a well-diversified portfolio. this contributes to the assumptions that it has to be a high-level informational advantage which make investors bias their portfolio in order to exploit the superior knowledge and to obtain higher returns. if home and local bias are driven by informational advantages the results challenge the idea of efficient capital markets and induce implications on the macroeconomic level. implications at portfolio and individual level are resulting in performance divergences. but there are also implications of home and local bias at the macroeconomic level, hence concerning the entire economy. home bias seems to have direct implications on the cost of capital in the considered country, because home bias leads to an inappropriate risk-sharing (lau et al. ) . the degree of home bias and the cost of capital have a positive correlation. besides, in a country with home bias, the trade balance is more sensitive to economic shocks. put differently, if investors exhibit little diversification (low risk sharing), new shocks will have a higher impact on the trade balance (fratzscher and straub ) . for germany, jacobs and weber ( ) observe that the local bias also impacts at firm level. the main finding is that stocks of firms located in a holiday region are traded less on the particular holiday. normally, locally biased investors would trade the stock but, on a holiday, these local investors show inattention and negligence to the stock market and therefore trade less. the reduction in trading at aggregated stock level is significant and observable and confirms strong local bias (jacobs and weber ) . differences in information release are rejected as an explanation. an influence of home or local bias on the cost of capital, trade balance sensitivity and stock turnover rates can be assumed. however, as the findings are limited to just a few studies, the macroeconomic implications of home and local bias should be subject to future research. this review summarizes the state of the literature on home and local bias. there is much empirical evidence on the existence of home bias and local bias. investors do not diversify according to standard capm. this behaviour is observed for many countries, various asset types and both individual and professional investors. however, the degree varies across time and country. the degree has been decreasing, mainly due to relaxing capital controls and by eliminating explicit barriers (transaction costs) to foreign investments. though, since there is no unified approach of how to measure the extent of home bias, the results vary notably, especially across countries. no final conclusion on the relation between country and extent can be made. a large part of the existing literature studies the reasons for home and local bias. home and local bias are generally considered simultaneously, because the reasons do not differentiate that much. unfortunately, research on home and in particular local bias is heavily concentrated on u.s. data. the reasons can be divided into three main categories: institutional reasons, information-based reasons and behavioural/individual reasons. all three categories offer their parts to explain the extent of the bias. this is probably due to various cross-dependencies in economy and also amongst the identified reasons for the bias. in order to understand whether home and local bias are smart, rational or critical behaviours, the performance implications are reviewed. there is much evidence of a better performance of biased portfolios, in particular for those (articles) which also show informational advantages as a reason. however, some research also reports that foreigners perform better while not referring to information asymmetries. overall, this mixed evidence does not allow to derive recommendations for financial advisors to actively push clients to more internationally diversified portfolios. the review gives some avenues to future research. table shows an overview and summarizes them. first, home bias seems to be declining over time, but the decrease has not been researched intensively. the variation in the degree during a course of time and in various countries is still not explained convincingly and should be examined in time series studies. additionally, there is still no standardized and integrated method of measuring the bias. on top of that, the empirical research should be more thoroughly elaborated for countries beyond the u.s. for example, could future studies select certain measurements of home bias and elaborate the development over time, comparing them with the u.s. results. second, it should be studied whether ambiguity aversion causes or has implications on local bias, as well the relationship between ambiguity aversion of institutional investors and home bias/local bias might be examined. third, as some authors indicate that financially literate investors show a better diversification in their portfolios financial literacy (in combination to the probability of advice seeking) is presumably influencing home and local bias as well. as far as we are informed, there are no studies examining this relationship which seems to be a promising avenue for explaining a part of the home bias. fourth, french ( ) points out the influence of the digitalization and technology progress on trading costs and shows that an overall decrease can be observed. therefore, even though a decrease of home bias can be assumed over time, the influence of recent technology advancement, as for example algorithmic trading or robo advisors, on asset allocation should be studied more thoroughly. fifth, since the evidence in this area is very limited, the implications of home bias and local bias have to be subject to further research, in particular using new and broader data. the findings presented in this study are not based on substantial numerous evidence but rather on singular studies. apart from the limitations regarding home bias' implications, one further limitation of the review is incorporating all relevant studies. as indicated with the full-text search of google scholar there are numerous results when searching for home and local bias. it is impossible to achieve a fully comprehensive review of all studies dealing with home bias since the field is very broad. some studies which even not explicitly elaborate home bias may be suited for explaining at least a part of home bias. however, it should always be taken into account that the differentiation between correlations and causalities in the considered studies is crucial. the absolute difference in cited studies compared to the literature reviews of both coeurdacier and rey ( ) and ardalan ( ) strengthens the limitation. apart from the described limitations of the method of literature search, it has to be mentioned again that all types of grey literature are not included in this review. despite the benefits of this procedure that thereby just peer-reviewed articles are included, the exclusion of grey literature also constitutes a limitation of this review and could change the structure of this review considerably (fisch and block ) . funding open access funding enabled and organized by projekt deal. open access this article is licensed under a creative commons attribution . international license, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the creative commons licence, and indicate if changes were made. the images or other third party material in this article are included in the article's creative commons licence, unless indicated otherwise in a credit line to the material. if material is not included in the article's creative commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. to view a copy of this licence, visit http://creat iveco mmons .org/licen ses/by/ . /. number of findings in the journal databases and other sources with different search requests home country bias: does domestic experience help investors enter foreign markets? international portfolio choice and corporation finance: a synthesis portfolio preferences of foreign institutional investors information costs and home bias: an analysis of us holdings of foreign equities global private information in international equity markets cultural influences on home bias and international diversification by institutional investors equity home bias: a review essay do local analysts know more? a cross-country study of the performance of local analysts and foreign analysts local institutional investors, information asymmetries, and equity returns investment restrictions and the cross-border flow of information: some empirical evidence is local bias a cross-border phenomenon? evidence from individual investors' international asset allocation nontraded goods, nontraded factors, and international non-diversification a cultural explanation of the foreign bias in international asset allocation melting pot or salad bowl: some evidence from u.s. investments abroad international capital market equilibrium with investment barriers proximity always matters: local bias when the set of local companies changes wages, profits and the international portfolio puzzle accounting choice, home bias, and u.s. investment in non-u.s. firms distance still matters: evidence from municipal bond underwriting financial literacy and the demand for financial advice what determines the domestic bias and foreign bias? evidence from mutual fund equity allocations worldwide portfolio concentration and performance of institutional investors worldwide home bias and international capital asset pricing model with human capital home bias in open economy financial macroeconomics loyalty-based portfolio choice home bias in equity portfolios, inflation hedging, and international capital market equilibrium a measure of pure home bias home bias at home: local equity preference in domestic portfolios the geography of investment: informed trading and asset prices home bias, foreign mutual fund holdings, and the voluntary adoption of international accounting standards local bias in venture capital investments direct foreign ownership, institutional investors, and firm characteristics corporate governance and the home bias ambiguity aversion and household portfolio choice puzzles: empirical evidence domestic and foreign country bias in international equity portfolios do domestic investors have an information advantage? evidence from indonesia asymmetric information, portfolio managers, and home bias global property investment and the costs of international diversification equity home bias and corporate disclosure home asset preference and productivity shocks risk, ambiguity, and the savage axioms the determinants of domestic and foreign bond bias home bias in global bond and equity markets: the role of real exchange rate volatility six tips for your (systematic) literature review in business and management research asset prices, news shocks, and the trade balance presidential address: the cost of active investing investor diversification and international equity markets international diversification gains and home bias in banking local ownership as private information: evidence on the monitoring-liquidity trade-off the flight home effect: evidence from the syndicated loan market during financial crises local ownership, crises, and asset prices: evidence from us mutual funds what causes home asset bias and how should it be measured? investor competence, trading frequency, and home bias the investment behavior and performance of various investor types: a study of finland's unique data set how distance, language, and culture influence stockholdings and trades ambiguity aversion and underdiversification the home bias in equities and distribution costs location matters: an examination of trading profits home bias at the fund level preference and belief: ambiguity and competence in choice under uncertainty thy neighbor's portfolio: word-of-mouth effects in the holdings and trades of money managers familiarity breeds investment domestic and foreign bias in real estate mutual funds local does as local is: information content of the geography of individual investors' common stock investments portfolio concentration and the performance of individual investors the trading volume impact of local bias: evidence from a natural experiment foreign versus local investors: who knows more? who makes more? why is there a home bias? an analysis of foreign portfolio equity ownership in japan home sweet home: home bias and international diversification among individual investors home bias, an academic puzzle home bias in international stock return expectations financial literacy, confidence and financial advice seeking home-biased analysts in emerging markets the world price of home bias does the preference for investment in local firms rise in turbulent times? evidence from the portfolio of joseph frisch, private banker ( - ) do foreigners invest less in poorly governed firms? what is the economic cost of the investment home bias the home bias is here to stay trying to explain home bias in equities and consumption confidence in the familiar: an international perspective country) home bias in italian occupational pension funds asset allocation choices liquidity: urban versus rural firms what drives home bias? evidence from fund managers' views hedging, familiarity and portfolio choice the home-institution bias international portfolio choice, liquidity constraints and the home equity bias puzzle you might not get what you need: the discrepancy between financial advice and commissions in germany measures of equity home bias puzzle home bias and cross border taxation the puzzling evolution of the home bias, information processing and financial openness patriotism in your portfolio veldkamp l ( ) information acquisition and under-diversification the six major puzzles in international macroeconomics: is there a common cause? portfolio selection of german investors: on the causes of home-biased investment decisions the genesis of home bias? the location and portfolio choices of investment company start-ups portfolio selection and asset pricing models no place like home: familiarity in mutual fund manager portfolio choice the home bias and the credit crunch: a regional perspective the overseas listing decision: new evidence of proximity preference home bias abroad: domestic industries and foreign portfolio choice scimago journal & country rank individual investors and local bias patterns of behavior of professionally managed and independent investors capital asset prices: a theory of market equilibrium under conditions of risk do locals perform better than foreigners? an analysis of uk and us mutual fund managers relative optimism and the home bias puzzle international portfolio nondiversification and exchange rate variability understanding the equity home bias: evidence from survey data a model of international asset pricing on the effects of barriers to international investment home bias and high turnover round-the-clock market efficiency and home bias: evidence from the international japanese government bonds futures markets how does household portfolio diversification vary with financial literacy and financial advice? home bias and high turnover reconsidered intranational home bias in trade dynamic portfolio choice and asset pricing with differential information see table . key: cord- - jzcdy a authors: hollinghurst, joe; lyons, jane; fry, richard; akbari, ashley; gravenor, mike; watkins, alan; verity, fiona; lyons, ronan a title: the impact of covid- on adjusted mortality risk in care homes for older adults in wales, uk: a retrospective population-based cohort study for mortality in – date: - - journal: age ageing doi: . /ageing/afaa sha: doc_id: cord_uid: jzcdy a background: mortality in care homes has had a prominent focus during the covid- outbreak. care homes are particularly vulnerable to the spread of infectious diseases, which may lead to increased mortality risk. multiple and interconnected challenges face the care home sector in the prevention and management of outbreaks of covid- , including adequate supply of personal protective equipment, staff shortages and insufficient or lack of timely covid- testing. aim: to analyse the mortality of older care home residents in wales during covid- lockdown and compare this across the population of wales and the previous years. study design and setting: we used anonymised electronic health records and administrative data from the secure anonymised information linkage databank to create a cross-sectional cohort study. we anonymously linked data for welsh residents to mortality data up to the th june . methods: we calculated survival curves and adjusted cox proportional hazards models to estimate hazard ratios (hrs) for the risk of mortality. we adjusted hrs for age, gender, social economic status and prior health conditions. results: survival curves show an increased proportion of deaths between rd march and th june in care homes for older people, with an adjusted hr of . ( . , . ) compared with . compared with the general population in – , adjusted care home mortality hrs for older adults rose from . ( . , . ) in – to . ( . , . ) in . conclusions: the survival curves and increased hrs show a significantly increased risk of death in the study periods. mortality in care homes has had a prominent worldwide focus during the covid- outbreak [ , ] but few detailed analyses have been conducted. care homes are a keystone of adult social care. ey provide accommodation and care for those needing substantial help with personal care, but more than that, they are people's homes [ , ] . in , there were , care homes in the uk, with a total of , residents [ ] . care home markets vary across the local government authorities in wales in the supply, ownership and size of care homes [ ] . while the main providers are single operators of one home, care homes are also owned by local authorities, small operators ( - care homes) and large operators ( or more care homes) [ ] . ere is a small number of not for profit providers. following a wide reaching inquiry into quality of life and care in care homes, the older person's commissioner for wales concluded that 'too many older people living in care homes have an unacceptable quality of life' [ ] . e commissioner's expectations for change were far ranging and included greater investment in the care home sector, staff development, recalibrating a human rights focus, quality reporting and provision of a range of health services [ ] . within care homes people live in proximity and may live with frailty and many different health conditions, making them susceptible to outbreaks of infectious disease [ ] . covid- is described by lithande et al. as ' . . . a dynamic, specific and real threat to the health and well-being of older people' ( , p. ) [ ] . e impacts of covid- on this sub-population have been reported widely in both international and uk media and in a growing peer-reviewed literature. multiple and interconnected challenges face the care home sector in the prevention and management of outbreaks of covid- [ ] . in the literature, these challenges are reported to include staff shortages [ , ] , insufficient or lack of timely covid- testing [ , ] and poor access to personal protective equipment [ , , , ] . related clinical challenges include older adults with covid- being asymptomatic, or not displaying expected symptoms [ , , , ] . once there is an outbreak, the disease can spread quickly within a care home setting and be difficult to contain [ ] [ ] [ ] . a further challenge is in managing the impact of practices to shield care home residents and isolate those who are infected. ese practices can result in social isolation from families, friends and communities, with negative impacts on health and wellbeing [ , ] . set against these challenges is the caring, innovative and resilient response of care home staff and residents in managing the situations they face [ ] . is confluence of events in the context of the pandemic, and impacts for residents, their families and care home staff, has been framed as a human rights issue [ ] . in the uk, it is argued that underinvestment in the care home sector and a poor interface with the health sector led to ill-informed policies, for example the rapid hospital discharge policies in the early period of the lockdown [ , [ ] [ ] [ ] . covid- is a rapidly evolving complex issue requiring near real-time data, analyses and a multidisciplinary team to devise, implement and evaluate a wide variety of inter-and cross-sectorial interventions to minimise population harm. e use of existing anonymised routinely collected longitudinal data can help to provide rapid access to large-scale data for studies and provide robust evidence for commissioning decisions and policy [ ] . in this study, we utilise the secure anonymised information linkage (sail) databank [ ] [ ] [ ] to investigate mortality in care homes in wales in the initial phase of the uk lockdown and compare this with corresponding data from the four most recent years to estimate excess mortality. we aimed to compare the mortality risk for older care home residents ( +) in wales for each year between and . to do this, we performed the following two sets of analyses. • how does mortality in care homes for older adults compare between and ? • how does care home mortality for older adults compare between and - in the context of the population of wales? we used anonymised electronic health records and administrative data from the sail databank to create a crosssectional cohort study. our cohorts were created using data held within the sail databank [ ] [ ] [ ] . e sail databank contains longitudinal anonymised administrative and healthcare records for the population of wales. e anonymisation is performed by a trusted third party, the national health service (nhs) wales informatics service (nwis). e sail databank has a unique individual anonymised person identifier known as an anonymous linking field (alf) and unique address anonymised identifier known as a residential alf (ralf) [ ] that are used to link between data sources at individual and residential levels, respectively. individual linking fields, nested within residential codes, are contained in the anonymised version of the welsh demographic service dataset (wdsd), replacing the identifiable names and addresses of people registered with a free-to-use general practitioner service. our cohort of older care home residents was determined by linking to an existing index for anonymised care home addresses from a previous project [ ] and utilising the wdsd for address changes. we determined if someone was a care home resident by linking their de-identified address information to the residences indexed as a care home in the wdsd. e anonymised care home index was created using the care inspectorate wales (ciw) [ ] data source from and assigning a unique property reference number (uprn) to each address [ ] . we included care homes with a classification of either care homes for older adults or care homes for older adults with nursing in our list. e uprn was double-encrypted into a project level ralf and uploaded into sail to create a deterministic match to the wdsd. from an analysis perspective, both residents and care homes are de-identified prior to any analysis. to answer our research questions, we created separate data sets, both with different settings and participants. • initially, we focussed on the phase of the uk lockdown for the covid- pandemic, from rd march to th june , and compared the mortality risk of care home residents to those in the same period ( rd march- th june) in each of the previous years from to . individuals in wales aged + years identified in the sail databank as a resident in a care home on rd march in one of our study years ( - ). we created cohorts, one for each year of study, and treated these as independent. • we compared the mortality risk of being in a care home at the population level between january - april and january - december . we used the wdsd to create population wide cohorts; this included all individuals resident in wales from to . we stratified the dataset in to four sub-groups for comparison as follows. (i) non-care home residents, resident in wales on / / . residents were followed up until they moved out of wales, died, or / / . (ii) non-care home residents, resident in wales from / / to / / . residents were followed up until they moved out of wales, died, or / / . (iii) care home residents, resident in a care home for older people in wales on / / . residents were followed up until they moved out of wales, died, or / / . (iv) care home residents, resident in a care home for older people in wales from / / to / / . residents were followed up until they moved out of wales, died, or / / . e hospital frailty risk score (hfrs) was developed using hospital episode statistics (hes), a database containing details of all admissions, emergency department attendances and outpatient appointments at nhs hospitals in england, and validated on over one million older people using hospitals in / [ ] . e hfrs uses the international classification of disease version [ ] (icd- ) codes to search for specific conditions from secondary care. a weight is then applied to the conditions and a cumulative sum is used to determine a frailty status of: low, intermediate or high. we additionally included an hfrs score of 'no score' for people who had not been admitted to hospital in the look back period. we calculated the hfrs using the patient episode database for wales, the welsh counterpart to hes, on the entry date for each of our studies, with a -year look back of all hospital admissions recorded in wales. we used a combination of the office of national statistics (ons) annual district death extract (adde), wdsd and consolidated death data source (cdds) to link historic and current mortality information. e cdds is a combination of the ons mortality data along with the death records found in the master patient index, and was used to identify deaths in ; the adde and wdsd were used to identify deaths from to . additional demographic information was taken from the wdsd. e wdsd includes the week of birth, the lower layer super output area used to assign the welsh index of multiple deprivation (wimd), and gender. we calculated the age of individuals on the study start date for each of our analyses. for our first analysis, the kaplan-meier survival function was estimated from rd march to th june for each year of care home residency ( - ). cox regression was used to determine hazard ratios (hrs) for mortality with % confidence intervals. adjusted hrs included: the cohort year, care home residency, age, gender, hfrs and wimd ( version). we included covariates using a stepwise approach, enabling us to see the impact of the additional variables on the overall model. we included a cluster level effect for each residence. computation restrictions meant that we were unable to include a cluster level effect for the second analysis. we analysed over , individuals per year in more than care homes for older adults. demographic information remained consistent across years, but we observed a much higher proportion of deaths in when compared with previous years. we present the descriptive data for the cohorts in table , kaplan-meier survival curve in figure and cox proportional hazards models in table . to check the influence of individuals being present in more than one cohort, we have included the number of individuals who are common across each study year in appendix in the supplementary data. we independently calculated adjusted hrs for the cohort against each of the study years; the results are presented in appendix in supplementary data. we also present the hrs without a cluster level effect in appendix in supplementary data. our extended analysis included over three million individuals in the - and periods of study. e demographic information of each of the cohorts is presented in table and the corresponding regression model results are displayed in table . additional models with the individual covariates are presented in appendix in supplementary data. when compared with previous years and after adjustment for age, sex, deprivation and hfrs, our results show substantial excess mortality in care home residents during the first phase of the covid- lockdown. e baseline demographics shown in table show a consistent trend across each study year with the exception of mortality in . is is consistent with the diverging kaplan-meier curves displayed in figure and the increased hrs for the cohort year presented in table . e hr for the cohort year remains statistically insignificant for / / when compared with , but the hr for is consistently greater than . for each of the models presented. we adjusted for age, gender, hfrs and wimd in the models. it was found that age, gender (male) and increasing hfrs led to an increased hr for mortality. is is consistent with previous studies, where the impact of covid- on adjusted mortality risk in care homes frailty has been shown to be associated with increased mortality [ ] [ ] [ ] . we found that the wimd was a significant factor in the population level analyses. e cluster effect term indicated that there was a variation between care homes; this is likely because of differences in the case mix of care home residents and the varying exposure to covid cases. e km curves may indicate a flattening of the divergence in mortality in more recent weeks. we plan to repeat these analyses as more data become available. inclusion of data on the timing of interventions and policy changes, both across the health care system and in care homes, would help understand the effectiveness of different approaches on reducing transmission of infection and clinical outcomes. table details the differences in demographic information between care home residents and the general population. specifically, the care home residents are more likely to be women and have increased mortality, frailty and age. e analysis in table indicated a higher risk of mortality for care home residents compared with the general population. e analysis also showed an increased risk of mortality in care homes in compared with the - counterparts. interestingly, the mortality risk of the general population in we have demonstrated that using anonymised data linkage; we can repurpose existing cohorts and methodologies to directly inform social care policy. e results from this analysis have been used to describe the impact of covid- on mortality in care homes in wales, while informing national efforts to prepare for potential second waves in winter - . although we used a consistent list of anonymised care home addresses, there is a varying number of care homes included in each year of study. is is due to the list of care homes being created from the extract from ciw, and care homes being opened and closed. we aimed to mitigate bias in our comparisons by using a consistent list across study years. our cohorts were created at cross-sectional time points; this means that individuals may appear in more than one cohort. although we calculated the covariates at the individual level at the start of each cohort interval, there may still remain correlation between the cohorts. e wimd assigned to individuals is based on their current residence; in the case of care home residents, this may not reflect the historic deprivation accrued across the life course as it may in more community-based individuals. we performed a retrospective population-based cohort study, comparing the mortality risk in care homes between and . it was found that the mortality risk in care homes has increased significantly in compared with previous years. e conclusion of increased mortality risk in remained the same when we included additional demographic variables, the hfrs, and increased the observation window. supplementary data: supplementary data mentioned in the text are available to subscribers in age and ageing online. is work uses data provided by patients and collected by the nhs as part of their care and support. we would also like to acknowledge all data providers who make anonymised data available for research. we wish to acknowledge the collaborative partnership that enabled acquisition and access to the de-identified data, which led to this output. is research has also been supported by the adr wales programme of work. e adr wales programme of work is aligned to the priority themes as identified in the welsh government's national strategy: prosperity for all. mortality associated with covid- outbreaks in care homes: early international evidence commentary: covid in care homes-challenges and dilemmas in healthcare delivery dependency in older people recently admitted to care homes competitions and markets authority. care homes market study. final report. uk: competitions and markets authority e care home market in wales: mapping the sector a place to call home? a review into the quality of life and care of older people living in care homes in wales covid- in older people: a rapid clinical review american geriatrics society policy brief: covid- and nursing homes covid- : the support uk care homes need to survive e health foundation. care homes have seen the biggest increase in deaths since the start of the outbreak covid- : voices from the care home frontline advocacy for the human rights of older people in the covid pandemic and beyond: a call to mental health professionals nhs providers. coronavirus spotlight: recent nhs discharges into care homes let's be open and honest about covid- deaths in care homes using electronic health records for population health research: a review of methods and applications e sail databank: linking multiple health and social care datasets sail databank: building a national architecture for e-health research and evaluation a case study of the secure anonymous information linkage (sail) gateway: a privacyprotecting remote access system for health-related research and evaluation residential anonymous linking fields (ralfs): a novel information infrastructure to study the interaction between the environment and individuals' health study protocol for investigating the impact of community home modification services on hospital utilisation for fall injuries: a controlled longitudinal study using data linkage unique property reference number (uprn) development and validation of a hospital frailty risk score focusing on older people in acute care settings using electronic hospital records: an observational study world health organization. icd- : international statistical classification of diseases and related health problems: tenth revision external validation of the electronic frailty index using the population of wales within the secure anonymised information linkage databank development and validation of an electronic frailty index using routine primary care electronic health record data frailty in elderly people the impact of covid- on adjusted mortality risk in care homes adr wales brings together data science experts at swansea university medical school, staff from the wales institute of social and economic research, data and methods (wiserd) at cardiff university and specialist teams within the welsh government to develop new evidence which supports prosperity for all by using the sail databank at swansea university, to link and analyse anonymised data. adr wales is part of the economic and social research council (part of uk research and innovation) funded adr uk (grant es/s / ). key: cord- -xgytkcs authors: micocci, m.; gordon, a.; allen, j.; hicks, t.; kierkegaard, p.; mclister, a.; walne, s.; buckle, p. title: understanding covid- testing pathways in english care homes to identify the role of point-of-care testing: an interview-based process mapping study date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: xgytkcs introduction care home residents are at high risk of dying from covid- . regular testing producing rapid and reliable results is important in this population because infections spread quickly and presentations are often atypical or asymptomatic. this study evaluated current testing pathways in care homes to explore the role of point-of-care tests (pocts). methods ten staff from eight care homes, purposively sampled to reflect care organisational attributes that influence outbreak severity, underwent a semi-structured remote videoconference interview. transcripts were analysed using process mapping tools and framework analysis focussing on perceptions about, gaps within, and needs arising from, current pathways. results four main steps were identified in testing: infection prevention, preparatory steps, swabbing procedure, and management of residents. infection prevention was particularly challenging for mobile residents with cognitive impairment. swabbing and preparatory steps were resource-intensive, requiring additional staff resource. swabbing required flexibility and staff who were familiar to the resident. frequent approaches to residents were needed to ensure they would participate at a suitable time. after-test management varied between sites. several homes reported deviating from government guidance to take more cautious approaches, which they perceived to be more robust. conclusion swab-based testing is organisationally complex and resource-intensive in care homes. it needs to be flexible to meet the needs of residents and provide care homes with rapid information to support care decisions. poct could help address gaps but the complexity of the setting means that each technology must be evaluated in context before widespread adoption in care homes. around , people in england and wales live in care homes [ ] . the majority of care home residents are older, affected by prevalent multimorbidity, activity limitation and cognitive impairment [ ] . in the first six months of , there were , excess deaths in care homes in england and wales, with , attributed to covid- [ ] . once a covid- outbreak starts, the virus can spread rapidly through a care home. presentations in residents are often atypical or asymptomatic. a study of residents of four london care homes conducted in april [ ] , found % of residents with covid- were asymptomatic. a further % had symptoms commonly seen in acute frailty syndromes including delirium, postural instability and diarrhoea. the high prevalence of asymptomatic or atypical presentations means that testing for the presence of sars-cov- in respiratory secretions is central to covid- management. several testing strategies have been used for residents and staff during the pandemic: an initial strategy of testing symptomatic residents only [ ] , progressed to a programme of -day and -day regular surveillance testing of residents and staff respectively [ ] . testing uses nasopharyngeal swabs which are sent for laboratory-based reverse transcriptase polymerase chain reaction (rt-pcr). frequent changes to testing protocols in the first part of the pandemic led to uncertainty as care homes had to readapt swabbing procedures and infection prevention measures multiple times, whilst the demands placed on the testing system by the rapid escalation of testing have led to delays with test results that compromise care homes' ability to deliver effective care. rapid diagnostic point of care testing (poct) could potentially address these challenges. however, little is known about the most effective way to implement these tests into existing procedures and covid- management in the care home setting. in this paper, we describe research undertaken to understand how testing strategies have been implemented in care homes, how these strategies influence the testing and management of residents and the degree of readiness in care homes for implementation of poct. between july and august , care home staff members were contacted through a national online covid- peer-support group for care home managers and staff [ ] . purposive sampling was used to ensure the opinions elicited were representative of a range of organisational factors (care home size, residential/nursing, independent operator/chain) that have been shown to influence the severity of outbreaks during the pandemic [ ] . after an initial email contact, potential participants were asked to sign a consent form. each participant was interviewed by an expert in human factors (mm) and notes were taken by an expert in process modelling (th). they were interviewed individually and remotely, using videoconferencing tools (zoom, zoom video communications, inc.). interviews were semi-structured, lasted - minutes, were recorded with permission and transcribed (not verbatim). the interview schedule covered staff training and experience, and current covid- testing processes. interview transcripts were analysed using process mapping tools to describe and visualise clinical pathways [ ] . framework analysis was used to analyse transcripts against initial themes of perceptions about gaps within and needs arising from, current pathways. codes were added to transcripts in microsoft excel and categories; themes were refined through a repeated analysis conducted by a second analyst (pk) -appendix ii. all rights reserved. no reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medrxiv a license to display the preprint in the copyright holder for this this version posted november , . ; participants were contacted by the research team upon completion of preliminary analysis to verify findings. no discrepancies between findings and feedback from participants were reported. ten staff members from eight care homes -with more than five years' experience in the sector -accepted to take part in the study -appendix i. testing for covid- requires each care home to order testing kits, to swab residents, to upload each test barcodes to a dedicated portal, and to ship samples to the laboratory via pre-arranged courier. four main steps were identified in the covid testing and management pathway illustrated as a process in figure . table summarises relevant stakeholders, guidance, resources, gaps in the pathway, needs, and opportunities for poct in care homes. all rights reserved. no reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medrxiv a license to display the preprint in the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint fig. overall swabbing and management process of resident in care homes table summary of relevant stakeholders, guidance, resources, gaps in the pathway, needs and opportunities for poct the four main steps were: ) infection prevention: the allocation of residents to dedicated containment zones to prevent infections has become widespread in care homes during the pandemic [ ]. effective zoning depends upon recognising residents who are covid- positive and moving them to a "red" area. these are separate from "green" areas, where covid- negative residents receive care. a major challenge was supporting residents with dementia and those who 'walk with purpose' or 'wander' to understand and engage with infection prevention measures. ) preparatory steps: sequential steps are mandatory to prepare care homes for swabbing (fig. ) . national guidance suggested two staff members should be involved -one to swab residents and one to record registration information. this had implications for staffing resource and rostering. a significant and persisting challenge was the need to do routine screening tests -weekly for staff and monthly for residents -alongside ad hoc testing for symptomatic residents. this was easier when the incidence of covid- was low but became more challenging, from an organisational perspective, as incidence increased. ) swabbing procedure: staff recognised that testing was daunting for residents, particularly those with dementia. attention was given to ensuring that staff familiar to each resident were involved in swabbing. flexibility was required, with staff often returning to residents more than once to test at a time which was acceptable, with implications for staff time. staff were required to register the swab, once taken, by entering data on the online portal, a process considered cumbersome and time-consuming. these complex considerations had to be addressed under time pressure because the staff were given -hours to complete each test from kit delivery. ) management of residents: symptomatic residents were usually asked to remain in their rooms until a test result was available. this was not always possible with residents walking with purpose. asymptomatic residents undergoing routine testing were not restricted in their movements. test results were returned by email, then had to be communicated to residents, families and general practitioners, and entered in care records. some care homes interpreted government recommendations [ ] differently: several respondents considered that retesting positive residents after quarantine would provide reassurance they were no longer infective. others suggested that repeat testing should be done in residents where there was a high suspicion of covid- , therefore in isolation, when a negative test returned. these findings illustrate the complexity of the processes in testing care home residents for covid- . infection prevention and testing processes are challenged by the individual needs of residents with dementia. routine testing has staffing and organisational implications. existing test registration systems place an administrative burden on staff. current training materials are generic, with no face-to-face training and without considering complex organisational issues around testing. also, nasopharyngeal/oropharyngeal swabs are unpleasant and alternative, less invasive processes (e.g. saliva testing) should be considered. the variation in how guidance was interpreted by care homes, with consequential discrepancies in management approaches, illustrates the need for caution. care home managers require a robust testing strategy to constantly monitor residents and to safeguard vulnerable people. guidelines have not been adapted to the care home setting and, as a result, care home managers interpret them according to the needs of their unique care environment. also, interpreting diagnostic test results requires nuanced consideration of sensitivity and specificity and how these are influenced by the prevalence of covid- [ ] [ ] [ ] . we identified several ways in which pocts could help. they could reduce the administrative burden associated with requesting and registering tests and provide staff with greater flexibility to accommodate the needs of residents with dementia. the rapid results provided by pocts could be beneficial in testing visitors and to allow more efficient use of zoning to save residents from prolonged and unnecessary isolation. poct would better inform decisions about hospital admission. however, conducting a diagnostic test requires face-to-face training with professionals trained in competency assessment, test interpretation, and risk assessment around testing kits and the environment in which they will be used. also, consideration needs to be given to how to help care homes staff interpret and respond to poct results without introducing unacceptable variation in practice and what the role of clinicians in this process would be. given the vulnerability of care home residents to covid- and the scale of the outbreak in the first wave, our findings have great importance to inform future management of the pandemic in care homes. there are examples of pocts being deployed in a wide range of settings during the pandemic -such as airports [ ] and universities [ , ] -without considering context-specific issues that might influence utility. the evidence presented here suggests that such an approach will not work in care homes due to the complexity of the processes involved and context-specific evaluation should be mandatory. the main limitation of this study is the small number of interviews. the findings cannot be regarded as representative of all care homes. they are, however, sufficient to understand and illustrate the complexity of the testing pathway in care homes as a basis for future poct research in this setting. the isolation has a very bad effect on residents. in some cases, "isolation is worse than the virus…". (ch ) treating each resident as suspected (following the guidance) is not ideal: "if a negative resident is considered a suspected case, he may end-up isolated with positive residents". (ch ) all rights reserved. no reuse allowed without permission. perpetuity. preprint (which was not certified by peer review) is the author/funder, who has granted medrxiv a license to display the preprint in the copyright holder for this this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint care homes market study. care homes market study health status of uk care home residents: a cohort study deaths involving covid- in the care sector, england and wales: deaths occurring up to sars-cov- infection, clinical features and outcome of covid- in united kingdom nursing homes covid- : managing the covid- pandemic in care homes for older people whole home testing for care home staff and residents seeking answers for care homes during the covid- pandemic (covid search) vivaldi : coronavirus (covid- ) care homes study report bushproof. care homes strategy for infection prevention & control of covid- based on clear delineation of risk zones coronavirus (covid- ): adult social care action plan statistics notes: diagnostic tests : predictive values interactive visualisation for interpreting diagnostic test accuracy study results users' guides to the medical literature: iii. how to use an article about a diagnostic test b. what are the results and will they help me in caring for my patients covid- : first uk airport coronavirus testing begins assessment of sars-cov- screening strategies to permit the safe reopening of college campuses in the united states rapid crispr-based surveillance of sars-cov- in asymptomatic college students captures the leading edge of a community-wide outbreak the authors would like to thank care home managers and staff members who took part in the study and members of the condor platform for their comments: prof richard body, prof gail hayward, prof daniel key: cord- - ggxzxu authors: husebo, bettina sandgathe; allore, heather; achterberg, wilco; angeles, renira corinne; ballard, clive; bruvik, frøydis kristine; fæø, stein erik; gedde, marie hidle; hillestad, eirin; jacobsen, frode fadnes; kirkevold, Øyvind; kjerstad, egil; kjome, reidun lisbeth skeide; mannseth, janne; naik, mala; nouchi, rui; puaschitz, nathalie; samdal, rune; tranvåg, oscar; tzoulis, charalampos; vahia, ipsit vihang; vislapuu, maarja; berge, line iden title: live@home.path—innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial date: - - journal: trials doi: . /s - - -y sha: doc_id: cord_uid: ggxzxu background: the global health challenge of dementia is exceptional in size, cost and impact. it is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. this article describes the rationale, development, feasibility testing and implementation process of the live@home.path trial. methods: the live@home.path trial is a -year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include dyads of home-dwelling people with dementia and their caregivers, recruited from municipalities in norway. the stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. the control group constitutes the dyads waiting for the intervention. the multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national dementia plan . during the -month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate l: learning, i: innovation, v: volunteering and e: empowerment (live). the primary outcome is resource utilization. this is measured by the resource utilization in dementia (rud) instrument and the relative stress scale (rss), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver. discussion: we expect the implementation of live to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home. trial registration: clinicaltrials.gov: nct . registered on march . the world's population is rapidly aging as a result of fewer births and declining mortality rates [ ] . the global health challenge of dementia is exceptional in size, cost and impact [ ] . according to the world health organization, the number of people living with dementia is estimated to be million worldwide, expected to almost triple by [ ] . despite most people, also from a caregiver perspective, preferring to live longer at home, and to die there, if possible [ , ] , about , of the estimated , - , persons with dementia (pwds) in norway reside in nursing homes [ ] . the urbanization of our societies, in particular younger persons moving toward central areas and leaving their older relatives behind, underlines the need for cost-effective service collaboration to provide adequate treatment and care for the aging home-dwelling population. among the top ten causes of death globally, dementia is the only one that cannot be prevented, cured or substantially slowed [ ] , leaving disease management, caregiver support and service innovation as the top priority for health policy-makers in the reduction of disease burden. due to expected positive interactions within the family, interventions supporting them as caregivers not only potentially lessen the caregivers' burden [ ] , but could also be beneficial for the pwd (e.g. reducing neuropsychiatric symptoms and delaying nursing home admission) [ , ] . as such, interventions supporting caregivers hold the potential for better overall resource allocation and utilization [ ] . caring for a pwd comes at a high cost, both individually and at societal level. caregivers to pwds have lower perceived health and higher rates of mortality relative to their noncaregiver counterparts [ ] . the effect of practical assistance and psychoeducational programs have been evaluated, but most single initiatives have fallen short in reducing the caregivers' burden [ ] . the maximizing independence (mind) at home study undertaken in baltimore, usa, during - included approximately home-dwelling persons with cognitive impairment or dementia in a parallel randomized multicomponent trial [ , ] . this study showed that months of care coordination through individualized care planning, implementation of a care plan, monitoring and reassessment had beneficial effects on the time to transition from home, number of dementiarelated unmet needs, quality of life (qol) and, importantly, a potentially clinically relevant reduction in selfreported number of hours spent on caregiving tasks, as a measure of caregiver burden [ , ] . developing this model further, the mind at home-plus study included an additional persons to evaluate the effect on longterm care placement, hospitalization and health-care expenditures of a -month homecare coordination program for pwd [ ] . the mind at home-streamlined trial is now refining the intervention to investigate its impact on time to long-term care placement, needs, burdens and qol in pwds and their caregivers, as well as cost utilization [ ] . results of the latter study are highly anticipated due to the potential for effective system-level approaches to dementia care [ ] . yet, due to fairly large regional and cultural differences in care organization, there is a need for implementation studies in other countries to explore the generalizability of the program. a multicomponent intervention is not merely a discrete package of separate components, but a process of changing what complex systems do [ ] . intervening within a complex system involves disrupting prior ways of working while introducing new ones [ ] . the degree of complexity can be understood as a relative construct, defined by the number of components, diversity of the intended outcome, number of targeted organizational levels and level of skill required to deliver the intervention [ ] , while additionally considering the interplay between context, setting and the implementation process [ ] . in the cosmos trial, a randomized implementation hybrid trial carried out in norwegian nursing homes during - , our group successfully developed, implemented and effect evaluated a multicomponent intervention addressing communication, systematic assessment and treatment of pain, medication review, organization of activities and safety [ ] . overall, the intervention resulted in improved qol and activities of daily living (adl), in addition to a decrease in neuropsychiatric symptoms such as agitation and depression as well as a reduction in the number of medications used among nursing home residents [ ] [ ] [ ] [ ] [ ] . to provide cost-effective care while securing the needs of pwds and caregivers represents a complex health challenge warranting multicomponent interventions implemented in daily clinical practice. aiming at systemlevel change, such interventions require stakeholder involvement as well as collaboration within and between different levels of primary and specialist health-care services, nongovernmental institutions, users and researchers, addressing the need for appropriate and coordinated cross-sector action. the live@home.path trial aims to develop, adapt, implement and effect-evaluate a multicomponent intervention for home-dwelling dyads of pwds and their caregivers, aiding them to stay safer, longer and more independently at home with cost-effectiveness. in this study, caregivers are defined as family or close friends, equaling informal caregivers. live@home.path is an acronym referring to each component of the complex intervention: learning, innovation, volunteer support and empowerment-at home pathway. the primary outcome is resource utilization. this is measured by the resource utilization in dementia (rud) instrument and the relative stress scale (rss), reflecting that resource utilization is more than the actual time required for caregiving tasks, but also how burdensome the task is experienced by the caregiver. importantly, the caregiver burden is individual, and may be related to economic hardship, anxiety, depression, hopelessness, impaired qol or lack of sleep and time for recreation. this individual perspective underlines the significance of user involvement, reflected in the trial's slogan: what matters to you? secondary outcomes include neuropsychiatric symptoms, number of adverse events, use of assistive technology, involvement of volunteers, qol and clinical global impression of change for the pwd as well as caregivers' depression, qol and work performance. the live intervention will reduce time and resources that caregivers spend in organizing and supporting pwds' daily activities, thereby reducing the caregiver burden. the live@home.path trial is a -year, multicenter, mixed-method, stepped-wedge randomized controlled trial (rct). we aim to recruit dyads of home-dwelling pwds and their caregivers from the municipalities of bergen, baerum and kristiansand. based on experiences with two pre-projects-research council of norway sponsor code (uib) and (haraldsplass deaconess hospital)-the intervention was developed in collaboration with userrepresentatives, stakeholders and scientific partners from the scientific advisory board. to meet the requirements from the dementia plan by the ministry of health and care services [ ] , we identified the "big issues" expected to facilitate support for home-dwelling pwds and their caregivers. as such, we combined and adapted existing knowledge rather than designing new components, contributing to service innovation in the health-care systems. the process was tailored to meet the standards of "development-evaluation-implementation", an internationally agreed approach for complex interventions launched by the uk medical research council [ ] . at the start of the -month intervention period, the dyads will be allocated to a municipal coordinator, offering regular contact to assist in finding a pathway throughout the administrative trajectory of dementia care. the coordinator should hold a bachelor degree in health-related science (e.g. nursing, ergo or physiotherapy), and will make a minimum of two home visits, one immediately after the intervention start and the second after approximately months. supplementary visits will be offered if needed, in addition to monthly telephone calls. during the intervention, the coordinator will introduce the dyads to the different stages of the live intervention: learning, innovation, volunteer support and empowerment (table , fig. ). all components will be carefully adapted to local conditions. learning a fruitful learning process is characterized by relevance, timing, confidentiality and reflection as well as fulfilment of expectations regarding content. the dementia plan [ ] underlines increased knowledge at all societal levels as crucial for improvements in dementia care. a meta-analysis on the effectiveness of educational interventions supporting caregivers of communitydwelling pwds found a moderate impact on the caregiver burden, a small effect on depression, but no effect on transition to long-term care [ ] . a norwegian multicenter randomized controlled trial found no reduction in depressive symptoms for pwds and caregivers after a -month psychosocial support program including formal education seminars [ ] . yet coping had a positive impact on the caregiver burden in the latter study, possibly reflecting improved understanding of the caregiver situation [ ] . in practice in the live@home.path: the coordinator will encourage and facilitate that both the pwd and the caregiver participate in local educational programs arranged by the municipality or the specialist health services several times yearly. as an example, the nationally established educational program for relatives of pwds is developed by the norwegian advisory unit on ageing and health [ ] , and implemented for use in bergen, baerum and kristiansand. innovation innovation is understood as the application of better and more original solutions to meet new requirements, unarticulated needs or existing market needs, or employing established solutions in new areas, both technological, such as information and communication technology (ict), and organizational. crucially, the process will result in more effective products, processes, services, technologies or business models being made available for all, including markets, government and society [ ] . as such, the live@home.path can be viewed as a service innovation, aiming at the development of a clinical pathway for dementia care. ict approaches in elderly care are broadly categorized as technical aids, cognitive intervention devices, and sensor and assistive living systems [ ] . ict in dementia care holds potential for optimizing safety at home, reducing caregiver burden and, although the findings are not conclusive [ ] , possibly also improving cost-effectiveness. yet we have limited knowledge about which type of devices are used, regarded as useful and requested by caregivers and pwds at different stages of dementia [ ] . most important, this field requires a careful, individual risk-benefit assessment, as ict might negatively impact autonomy and privacy, and provide a false sense of safety. in practice in the live@home.path: the coordinator will assess and evaluate the usefulness of ict solutions already in use for pwds and caregivers and inform about additional relevant welfare technology available in the municipality. the participants will receive information about a newly launched online communication platform tailored to meet the needs of families organizing dementia care (jodacare©) [ ] , and be informed about a web page with scheduled activities of relevance (fris-kus©) [ ] . in bergen, the participants will be invited to test the prototype alight©, an application for tablets providing a "digital memory book" developed by soundio as and nks olaviken gerontopsychiatric hospital [ ] . additionally, up to ten participants in bergen will be invited to test a prototype of the adapted communication platform in collaboration with the western norway university of applied sciences. underlining the aspects of service innovation, all data will be collected on tablets owned by the project group via the software surveyjs [ ] . the live@home.path trial was selected as a pilot for the development and evaluation of this software, providing secure data transfer and storage on the safe server at the university of bergen for research project with sensitive data. after approval from the principal investigator, researchers affiliated with the project will be given access to the server, avoiding export of data and maintaining high levels of security [ ] . volunteer support volunteer support is understood as any activities that involves someone spending time, unpaid and of one's own will, doing something that aims to benefit someone else outside their own families and households [ ] . being important suppliers of unpaid support, it is estimated that volunteers contributed , full-time equivalents (ftes) in norway in [ ] . however, the majority are engaged in sports and culture, and representation in the elderly care sector is sparse [ ] . volunteering among older adults reduces their depressive symptoms, improves self-reported health and functional performance, and increases survival [ , ] . the volunteers additionally report better health through their own engagement [ , ] . volunteerism has contributed to the development of the norwegian welfare system through identifying and providing solutions to societal challenges [ ] , being formally integrated into core strategic plans in the health-care sector and being launched as a prioritized political strategy in elderly and dementia care in norway [ ] . yet we have sparse knowledge about volunteer support schemes for homedwelling pwds. to provide better services, understanding of the dynamics, motivations and interactions in volunteerism in dementia care is required. in practice in the live@home.path: the coordinator will investigate pwd and caregiver attitudes toward volunteer support, and inform about volunteer services. if this is of interest, the coordinator will contact local volunteer coordinators for nonprofit organizations (the red cross [ ] and the norwegian association for public health [ ] ), aiming at the best possible match of volunteers based on assessment of preferences and wishes. empowerment empowerment in dementia care can be defined as "a confidence building process whereby pwd are respected, have a voice and are heard, are involved in making decisions about their lives and have the opportunity to create change through access to appropriate resources" [ ] . the process of advanced care planning (acp) can increase empowerment for pwds and their caregivers [ , ] , underlined by the norwegian policy guidance by the directorate of health on diagnosis, treatment and care for pwds [ ] . pwds do not necessarily die from dementia, they die with it, and the life expectancy after onset of symptoms ranges from to years, depending on age and the presence of comorbidities [ ] . the continuing process of communication should be initiated as early as possible in collaboration with the general practitioner as a comprehensive medical examination including revision of medications, enabling the pwd to clarify individual values and wishes for domestic and institutionalized treatment and care (i.e. "what matters to you?"). in practice in the live@home.path: the coordinator will schedule a minimum of one appointment at the general practitioner's office for empowering acp, including the issues of formal next of kin and guardianship. in addition, a systematic medication review will be undertaken to ensure use of medications in line with diagnoses and symptoms, utilizing recommended guidelines [ ] . to evaluate the feasibility and the implementation strategy of the coordinators of the live intervention, a feasibility study was conducted during - . sixteen dyads in bergen were assigned a coordinator for months, participating in a minimum of two home visits and providing monthly follow up by telephone. one dyad dropped out after a few weeks of participation due to permanent placement in a nursing home, leaving dyads followed by coordinators for assessment. qualitative individual and focus group interviews utilizing a hermeneutic approach were performed with six dyads, three caregivers and the two coordinators as well as the coordinators' leader, exploring the usefulness of the coordinator function. this process revealed that the core feature of the coordinator was to support the caregivers in finding, applying and organizing support, and to provide emotional care, support and guidance. the objective of empowering the pwd in the decision-making processes was nonetheless particularly difficult to achieve. this finding was further incorporated into the live intervention for the stepped-wedge rct, with increased focus on the acp process and follow up of the gp [ ] . implementation research is defined as the scientific investigation concerning the act of carrying an intervention into effect in the real-world setting [ , ] . even a superbly designed intervention will fail to change practice if the process of implementation is futile. in the live@home.path trial, the implementation can be viewed as a two-stage process: first, from the research team to the coordinators; and, second, from the coordinators to the dyads. the first part encompasses all activities arranged by the research team empowering the coordinators to standardize the implementation of the intervention, such as seminars, development of written material and follow-up of coordinators during the intervention period. six months prior to the intervention start, kick-off workshops for all involved collaborators in the municipalities, including coordinators and affiliated specialized health services, will be arranged at all study sites, facilitating enthusiasm, collaboration and recruitment of participants. two weeks before the intervention start, a -day implementation seminar for the coordinators will be delivered by the research team at all study sites, training the coordinators through lectures, roleplay and discussions (see additional file ). halfway through the -month intervention period, a -day midway evaluation workshop for the coordinators will be arranged, allowing for discussion of obstacles and pitfalls, which acts as a source for facilitating a more effective and standardized implementation. as a part of the intervention, the research team will contact each coordinator by telephone every days to keep track of the process, discuss potential challenges and follow-up use of the checklist for implementation of the intervention. this ten-page pocket manual will contain a simplified howto-do description of the intervention components. it will be filled out for each dyad by the coordinator, registering time use and whether each of the distinct live components has been addressed during the intervention period. additionally, a -page tutorial will be developed as a comprehensible introduction to the rationale, method and practical aspects of the conduction of the trial, aimed for an audience not skilled in the research method. the second part of the implementation process encompasses the coordinator-dyad relationship. the coordinators are obliged to arrange a minimum of two home visits during the intervention period, and provide monthly contact by telephone. the checklist for implementation of the intervention will be used at every contact, and collected by the research team at the end of the intervention, providing documentation for the implementation process. in addition to the midway evaluation, a live conference will be organized for all coordinators at the end of the third intervention period, collecting data on their experiences of the suitability of the single components and the implementation process. additionally, at data collection after the intervention period, the participants will be asked if and to what extent they were offered the live components, and how often they were contacted by their coordinator. as such, if the live intervention fails to prove an effect on resource utilization, it will be possible to examine whether this is a result of the live components not being tailored to produce such an effect (i.e. that our main hypothesis was wrong) or whether it was caused by a lack of proper implementation. evaluation of the implementation process will further be investigated by conducting qualitative interviews with the coordinators as part of the mixed-method design. the required sample size was calculated to detect a difference of h/week for the primary outcome rud. based on the literature, we assumed that the mean number of hours of informal care is h/week with a standard deviation (sd) of h/week [ ] . with % power and a significance level of %, the required sample size was estimated to be dyads. to allow for % loss to follow-up, a total of dyads, equaling per municipality, must be included. participants will be recruited from memory clinics at local hospitals, from municipal memory teams and after advertisements in general media such as newspapers, radio and tv in bergen, baerum and kristiansand. bergen is the second largest municipality of norway with approximately , inhabitants in , baerum is ranked the fifth largest with , inhabitants, while the , inhabitants of kristiansand constitute norway's sixth largest municipality [ ] . pwds are eligible for inclusion if they: are aged ≥ years; are home-dwelling; have a minimum h/week regular face-to-face contact with the caregiver; are diagnosed with dementia according to standardized protocol [ ] ; have mini-mental state examination (mmse) score of - ; have a functional assessment staging test (fast) score of - ; and provide written informed consent. exclusion criteria are: participation in another ongoing intervention trial; or expected survival < weeks. pwds are eligible for inclusion regardless of etiology of the dementia and presence of other disorders. caregivers are eligible for inclusion if they have a minimum of h/week regular face-to-face contact with the pmd and provide written informed consent. as such, both the pwd and the caregiver will be included in the trial, representing a dyad. the mixed-method, stepped-wedge randomized control design data from all dyads will be assessed every months from baseline to the end of study period after months, death or permanent residency in a nursing home-in total, five waves of data collection. the stepped-wedge randomized control design [ ] implies that all participants will receive the -month intervention program during the study period, for which the timing of the intervention is determined by the randomization (fig. ) . the control group constitutes the dyads waiting for the intervention at a given time during the study; this group will have access to health care and receive treatment as usual. criteria for discontinuing the intervention or participation are requested from participants to withdraw from the trial. the trial's user-oriented approach, aiming at minimizing the participant burden associated with follow-up visits, in addition to flexibility in scheduling of the visits are sought to promote retention and prevent loss to follow-up over the trial. no distinct adverse events are expected before the start of the trial or during the trial, while possible adverse events related to the change in prescribed medication during the general practitioner's medication review might occur. if so, they will be reported by the coordinators to the researchers, either immediately or at their regular follow-up every weeks (physical meeting, by phone or by e-mail), in addition to feedback from the coordinator to the general practitioner. a statistician will randomly allocate the order of the intervention using block randomization; the dyads are randomized in clusters within each geographical location. the random sequence will be generated using a computerized random number generator undertaken for all three municipalities after the inclusion and baseline assessments are completed for all participants. research assistants, researchers conducting the analyses and other study personal conducting data collection will be blind to the randomization order and to the implementation process of the intervention. participants will not be informed of the intervention and implementation strategy to secure blinding until they are allocated to their coordinator during the intervention period. from this point of time, they become unblinded. given the practice change of the intervention, the municipality homecare services will be aware when their cluster enters the intervention period. when developing a pathway for dementia care, incorporating experiences and perspectives from the pwds and their caregivers is fundamental. in line with the involve framework [ ], this trial is developed through user involvement from the conception of the idea, via design through the implementation phase. at the structural level, user involvement is secured via collaboration with the head of research at the norwegian health associations [ ] , participating in the steering committee, and locally grounded by dementia coordinators in the municipalities. at the individual level, the centre for elderly and nursing home studies (sefas), responsible for conducting the trial, employs a user-representative as a co-researcher in a % position, who participates in the study's advisory board and working group. the mixed-method design [ ] encompasses the integration of data from quantitative assessment of validated outcomes with material from qualitative interviews and participant observation. utilizing an exploratory hermeneutic design [ ] , in-depth and focus group interviews with pwds (n = ), caregivers (n = ), municipality health-care staff (n = ), general practitioners (n = ), volunteers (n = ) and volunteer coordinators (n = ) will be conducted. to evaluate the acceptability and feasibility of the communication platform, interviews with caregivers and care staff will be made, as well as real-life observations form use among pwds and caregivers. table presents the primary and secondary outcomes according to domain, specific measurement, metric, method of aggregation and time points. the primary outcome of the live@home.path trial is formal and informal resource utilization, measured by the rud instrument [ , ] and the rss [ ] ( table ). as such, we consider overall resource utilization as more than the time required to care for the pwd; it also encompasses how burdensome the task is experienced by the caregiver. the informal care time use is measured in hours/ month [ , ] , in addition to numbers of contacts with the health-care system and use of medications. the rud is a standardized and widely used instrument assessing dementia care, proven useful across different care systems and countries and in both clinical trials and observational studies [ , ] . caregivers stress will be assessed by the rss, a self-report instrument covering three dimensions of "emotional distress", "social distress" and "negative feelings". it is regarded as a useful instrument to stratify careers according to the risk of psychiatric morbidity [ , ] . the secondary outcomes presented in table include measures of qol, psychiatric symptom load, adl, comorbidity and pain as well as measure of goal achievements. the qol for both the pwd and the caregiver will be measured by self-report using the quality of life in alzheimer's disease scale (qol-ad) [ ] and the generic quality of life measure eq- d- l [ ] , including the eq- d-vas scale [ ] . additionally, qol for the pwd will be assessed by proxy by the caregiver with the qol-ad [ ] . psychiatric symptoms for the pwd will be proxy rated by the caregiver using the neuropsychiatric inventory questionnaire (npi- ) [ ] , the cohen-mansfield agitation inventory (cmai) [ , ] and the cornell scale for depression in dementia (csdd) [ ] , fig. a stepped-wedge randomized control design. the randomization in time takes place at month . first group (red) is in the intervention period from month to , second group (yellow) from month to and third group (green) from month to . implementation seminars will be held at months , and , and midway evaluation at months , and . data will be collected at baseline (month ), after the first intervention period (month - ), after the second intervention period (month - ), after the third intervention period (month [ ] [ ] and at the end of the study at months. b schedule of enrollment, interventions and assessments over the study period mean mean difference in score over the -month intervention period summarized for the three while caregiver psychiatric symptoms will be selfreported using the geriatric depression scale (gds) [ ] in addition to the rss [ ] . data on adl for the pwd will be proxy rated by the caregiver utilizing instrumental (i-adl) and personal (p-adl) measures [ ] . data on pain will be obtained by self-report from the pwd using the mobid- pain scale [ ] [ ] [ ] [ ] [ ] and the level of comorbidity will be evaluated by the interviewer according to the general medical health rating scale (gmrh) [ ] . the clinical global impression of change scale (cgic) will be assessed after the intervention to quantify and track patient progress and treatment response [ ] . in addition to the instruments presented in table , other outcome measures include the number of adverse events (falls, disappearances outdoors, fire hazard), use of assistive technology (number of technical aids, cognitive intervention devices and assisted living systems), involvement of volunteers (number of participants with contact with a volunteer, number of hours spent with a volunteer), number of medications used (both regular and on demand) and participation in educational programs for the pwd and the caregiver. these outcome measures will be described as the mean change in sum of events (number devices, hours, medications, educational programs) over the intervention period compared to controls (as outlined in table ). prior to inclusion and baseline data collection, a -day seminar will be arranged for the study personal to secure training in the use of tablets and scoring of relevant psychometric scales. a study manual has been developed to guide data collectors during their visits to secure standardized reporting. close to h/day, telephone and mail support will be offered by the research team during times of data collection. researchers and municipal study personal will collect data at baseline as well as , , and -month follow-up. the municipalities will receive nok per enrolled dyad to compensate for extra administrative work. at baseline, demographic data such as year of birth, gender, marital status, housing characteristics, education and employment will be collected, as well as data on the dementia syndrome, including the current score on the mini-mental state examination, norwegian version (mmse-nr ) [ , ] , mean difference in score over the -month intervention period summarized for the three intervention groups compared to mean difference in score summarized for the control groups a mean difference in score over the follow-up period in -month intervals stratified by time from end of intervention b all assessment will be made by research personal or affiliated staff in the municipalities during home visits with the person with disability (pwd) and the caregiver a intervention groups: group (red), t -t ; group (yellow), t -t ; group (green), t -t . control groups: (t -t + t -t ) (see fig. a ) b group (red): three -month periods, t -t , t -t and t -t . group (yellow): two -month periods, t -t and t -t . group (green): one -month period, t -t (see fig. a ) functional assessment staging test (fast) [ ] and the informant questionnaire on cognitive decline in the elderly (iqcode) [ , ] . the mmse-nr [ ] will be assessed every months during the trial. intention-to-treat analyses will be performed accounting for municipality as a random effect in mixed-effect models and the generalized estimating equation (gee) with nonlinear effect comparing the intervention groups to controls. repeated observations within persons will be accounted for with a correlation matrix. all secondary outcomes will be adjusted for multiple comparisons using the hochberg method [ ] . given the potentially informative censoring due to dropout, institutionalization and death, we will jointly model the primary outcome and attrition through a shared person-specific random intercept. missing data will be handled using multiple imputations by chained equations (mice). the study was approved in may by the regional committee for medical and health research ethics, north norway ( / ) and west norway ( / ) (the pilot), and registered at clinicaltrials.gov (nct ). assessment and utilization of personal data from the dyads as well as from volunteers and volunteer coordinators from nonprofit organizations are approved by the norwegian centre for research data (nsd) (ref. ). after verbal and written information, spoken and written informed consent was obtained in direct conversation with the caregiver and the pwd, if capable of providing consent for participation. if not, the next of kin or a legal advocate provided consent based on their determination on whether the pwd, when they were able, would have agreed to participate in the trial. compared to care as usual, we expect the live@home.-path trial to innovate the clinical pathway in dementia care, facilitating cost-effective, feasible and independent living at home through learning, innovation, volunteering and empowerment. participation in research is based on affirmative, unambiguous, informed and specific consent [ ] . persons with cognitive impairment will often not be able to provide such a comprehensive consent or understand the scope and consequences of data assessment. local legislation for obtaining ethical permission in studies varies substantially between european countries [ ] . in norway, the next of kin or a legal advocate can provide consent based on their determination of whether the person, when they were able, would have agreed to participate in the trial [ ] . these principles for obtaining informed consent were applied in the live@home.path trial. from , the european union-wide law on data protection, the general data protection regulation (gdpr), represents a significant step toward protection of participants in research [ ] . in particular, article protects pwds and their relatives from being coerced to consent without awareness of how their data will be used [ , ] . when assessing sensitive data such as mental health, article requires a data protection impact assessment (dpia), a formal process systematically analyzing, identifying and minimizing the data protection risks of a project. we developed a dpia (ephorte uib: / ) for the live@home.path trial in collaboration with the data protection official at the university of bergen, encouraging us to again evaluate which data to assess, as well as focus on safe data management. nonetheless, we anticipate the participation in the live@home.path trial to be less burdensome relative to, for example, rcts on effect of medications, due to the user-oriented approach emphasizing the investigation of the perspective "what matters to you?" stakeholders and research funders increasingly require patient and public involvement (ppi) at all stages of research from design, implementation and dissemination of results, shifting focus from research "about" or "for" to research "with" or "by" someone [ , ] . our userrepresentative has provided feedback on a close to weekly basis through participation in the working group and advisory board of the trial. a related principle, responsible research and innovation (rri), is defined as a transparent, interactive process making societal actors and innovators mutually responsive to each other, and encouraging them to set up a critical perspective when evaluating the innovation and marketability of products [ , ] . taken together, these components constitute a framework for sustainable ethic innovation in dementia research (fig. ) , a model that easily can be applied when designing and conducting research on other vulnerable patient groups. a stepped-wedge randomized controlled trial design is recommended for evaluation of a multicomponent intervention in health-care services as it provides a number of practical and scientific benefits compared to an ordinary rct [ ] . it is increasingly used in effectiveness studies in the geriatric field [ , ] . most importantly, the design allows for providing the intervention to all participants, overcoming ethical and logistical challenges arising from withholding the intervention. this design is, however, more vulnerable to temporal external changes, as more participants are exposed to the intervention toward the end of the study than in earlier stages. if the live intervention fails to prove an effect on resource utilization, we will examine whether this is due to a lack of proper implementation. thus, if the implementation process is satisfactory, it may suggest that the live components were not tailored to be sufficiently cost-effective if no effects on primary outcome measures are found. an alternative interpretation is that the intervention may not be cost-effective even if primary outcomes change significantly, as resource use by the intervention is more time consuming and/or expensive than the alternative. some challenges have emerged during the start of the trial. first, it is demanding to include the estimated number of participants, and, additionally, to keep the number of dropouts low due to the progression of the disease. we should have established closer collaborations with the geriatric specialist health-care services, as we experienced that patients recruited from geriatric outpatient clinics were in the most optimal disease stage for this trial. to increase recruitment, we prolonged the inclusion period to december and expanded the inclusion criteria to age ≥ years and mmse range - , while the sefas researchers, journalist and co-researcher with user experience continuously work on positive media coverage. second, data collection from home-dwelling persons in three distinct municipalities is resource and logistically demanding. third, being selected as a pilot for the data collection software has been challenging, as the file format initially generated handled missing data in a way that was not compatible with our statistical programs. finally, the participants have so far been recruited in various ways, from home-care services in the municipality and memory clinics at hospitals, to self-referrals after advertisements in the general media. this implies that the dyads included in our trial represent a heterogeneic group of home-dwelling people with dementia. in conclusion, we expect the implementation of live to lead to a pathway for dementia treatment and care that is cost-effective, feasible and supports independent living, at home. a total of dyads had been screened for participation from may , of which were included in the trial. by january , when recruitment ended, dyads had dropped out. mainly due to a more rapid inclusion process than anticipated, this protocol was submitted after the end of the recruitment period but in due time before the last visit for data collection. at the time of resubmission in may , the covid- pandemic had profoundly impacted the norwegian healthcare system, including services in the municipal sector, challenging the implementation of the intervention in group . newsletters with status, possible modifications and upcoming events will be sent by e-mail to the site leaders and coordinators every - months. final protocol version number will be prepared by june . plan for dissemination apart from the usual academic publications from the live trial in terms of papers and conference presentations, the authors will ensure maximum publicity through the collaborating centers' popular blogs, media work and scientific network. the latter includes most of the world's leading experts on pain, bpsd, palliative care, and wearable and sensing technology for people with dementia. we will exploit the technology network, cost-action td group, and conduct research visits to three of the overseas associated centers of excellence (harvard university, yale university and tohoku university) that are part of our management group; host at least four visits by overseas members of the network; host two major -day international workshops (years and ); and host nine seminars for formal caregivers in homecare services. the live website will also provide a forum for outreach for the public, including research participants, continuously updated with results from the trial. researchers will attend two international conferences per year, while we expect each researcher to attend a conference every other year to achieve coverage and exposure of the trial. conception or design of the work: bsh is the principal investigator of the trial, lib is the site lead for the trial. all coauthors have contributed substantially to the conception of the idea and at the different stages of development of the trial and/or toward the different components of the intervention and/or practical conduction of the trial. drafting the article: bsh and lib drafted the manuscript. critical revision of the article: all coauthors contributed significantly to the critical revision of the drafts, improving the method and its content. final approval of the version to be published: all coauthors approved the final submitted version of the manuscript. the international committee of medical journal editors criteria for authorship will be applied to evaluate whether contributors fulfill the criteria for authorship on future publications with data from the trial. no professional writers will be involved in manuscripts with data from the trial. the trial is funded by the research council of norway (www.forskningsradet. no) (sponsor's protocol code ), the research council of norway (sponsor's protocol code-pre-project (uib) and (haraldsplass deaconess hospital)), including two phd positions (mv and mhg) and three postdoctoral positions (rca, np and lib). the dignity centre funds one additional phd position (eh). the sponsors will have no role in planning the design, collection, management, analysis, interpretation of data and writing of reports and will have no decision on where to submit the report for publication. data sharing is not applicable to this article as no datasets were generated or analyzed during the current study. the public will not receive full access to the complete protocol, dataset and statistical procedures; however, this information can be made available to other researchers upon request. the study was approved in may by the regional committee for medical and health research ethics, north norway ( / ) and west norway ( / ) (the pilot), and registered at clinicaltrials.gov (nct ). assessment and utilization of personal data on the dyads, volunteers and volunteer coordinators from nonprofit organizations are approved by the norwegian centre for research data (nds) (ref. ). after verbal and written information, spoken and written informed consent was obtained in direct conversation with the caregiver and the pdw, if capable of providing consent for participation. if not, the next of kin or a legal advocate provided consent based on their determination on whether the pwd, when they were able, would have agreed to participate in the trial. not applicable. the world health organization, dementia a public health priority dementia: a global health priority-highlights from an adi and world health organization report the world health organization, facts on dementia heterogeneity and changes in preferences for dying at home: a systematic review we live as good a life as we can, in the situation we're in"-the significance of the home as perceived by persons with dementia the norwegian insitute of public health. public health report dementia. oslo: the norwegian institute of public health alzheimer's disease facts and figures. chichago: the alzheimers association effect of a training programme to reduce stress in carers of patients with dementia the going to stay at home program: combining dementia caregiver training and residential respite care time until institutionalization and death in patients with dementia. role of caregiver training and risk factors cost effectiveness of a training program for dementia carers caregiver burden among dementia patient caregivers: a review of the literature evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach a randomized controlled trial of a community-based dementia care coordination intervention: effects of mind at home on caregiver outcomes a multidimensional home-based care coordination intervention for elders with memory disorders: the maximizing independence at home (mind) pilot randomized trial comprehensive home-based care coordination for vulnerable elders with dementia: maximizing independence at home-plus-study protocol mind at home-streamlined: study protocol for a randomized trial of home-based care coordination for persons with dementia and their caregivers all interventions are complex, but some are more complex than others: using icat_sr to assess complexity theoretical foundations guiding culture change: the work of the partnerships in dementia care alliance assessing the complexity of interventions within systematic reviews: development, content and use of a new tool (icat_sr) making sense of complexity in context and implementation: the context and implementation of complex interventions (cici) framework cosmos-improving the quality of life in nursing home patients: protocol for an effectiveness-implementation cluster randomized clinical hybrid trial the effect of a multicomponent intervention on quality of life in residents of nursing homes: a randomized controlled trial (cosmos) deprescribing antihypertensive treatment in nursing home patients and the effect on blood pressure implementing a novel strategy for interprofessional medication review using collegial mentoring and systematic clinical evaluation in nursing homes (cosmos) description of an advance care planning intervention in nursing homes: outcomes of the process evaluation advance care planning in nursing homes-improving the communication among patient, family, and staff: results from a cluster randomized controlled trial (cosmos) the ministry of health and care services. the dementia plan . oslo: the ministry of health and care services developing and evaluating complex interventions: the new medical research council guidance effectiveness of educational interventions for informal caregivers of individuals with dementia residing in the community: systematic review and meta-analysis of randomised controlled trials the effect of psychosocial support intervention on depression in patients with dementia and their family caregivers: an assessor-blinded randomized controlled trial the norwegian advisory unit on ageing and health. educational program for relatives a review of the role of assistive technology for people with dementia in the hours of darkness telehealth and telecare need a different approach sensing technology to facilitate behavioral and psychological symptoms and to monitor treatment responses in people with dementia. a systematic review security approaches in using tablet computers for primary data collection in clinical research volunteerism research: a review essay updated numbers on volunteering in norway satelite acount for non profit organisations the bravo team. the benefits associated with volunteering among seniors: a critical review and recommendations for future research volunteering and subjective wellbeing in midlife and older adults: the role of supportive social networks meeting needs in a welfare state: relations between government and voluntary organizations in norway the norwegian government. the voluntary sector the red cross the norwegian association for public health co-producing a shared understanding and definition of empowerment with people with dementia the national ministry of health, national guideline for diagnosis and treatment of dementia. oslo: the national ministry of health survival times in people with dementia: analysis from population based cohort study with year follow-up the compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: a qualitative feasibility study of the live@home.path trial submitted implementation research: what it is and how to do it republished research: implementation research: what it is and how to do it end-of-life care and the effects of bereavement on family caregivers of persons with dementia statistics norway, population statistics of norway the norwegian national advisory unit of ageing and health, diagnostic criteria for dementia the stepped wedge cluster randomised trial: rationale, design, analysis, and reporting designing and conducting mixed methods research conducting hermeneutic research application of resource utilization in dementia (rud) instrument in a global setting the resource utilization in dementia (rud) instrument is valid for assessing informal care time in community-living patients with dementia measuring behavioural disturbance of elderly demented patients in the community and its effects on relatives: a factor analytic study recording care time in nursing homes: development and validation of the "rud-foca" (resource utilization in dementia-formal care) the relative stress scale, a useful instrument to identify various aspects of carer burden in dementia? high score on the relative stress scale, a marker of possible psychiatric disorder in family carers of patients with dementia use of the qol-ad for measuring quality of life in people with severe dementia-the laser-ad study utility-based quality of life measures in alzheimer's disease correspondence between eq- d health state classifications and eq vas scores the neuropsychiatric inventory: comprehensive assessment of psychopathology in dementia factor analysis of the cohen-mansfield agitation inventory in three large samples of nursing home patients with dementia and behavioral disturbance assessment of agitation in elderly patients with dementia: correlations between informant rating and direct observation cornell scale for depression in dementia development and validation of a geriatric depression screening scale: a preliminary report aging and performance of home tasks the mobid- pain scale: reliability and responsiveness to pain in patients with dementia who suffers most? dementia and pain in nursing home patients: a cross-sectional study pain behaviour and pain intensity in older persons with severe dementia: reliability of the mobid pain scale by video uptake pain in older persons with severe dementia. psychometric properties of the mobilization-observation-behaviour-intensity-dementia (mobid- ) pain scale in a clinical setting mobilization-observation-behavior-intensity-dementia pain scale (mobid): development and validation of a nurse-administered pain assessment tool for use in dementia the general medical health rating: a bedside global rating of medical comorbidity in patients with dementia ecdeu assessment manual for psychopharmacology mini-mental state". a practical method for grading the cognitive state of patients for the clinician the norwegian national advisory unit on ageing and health. mmse-nr functional assessment staging (fast) the informant questionnaire on cognitive decline in the elderly (iqcode): a review the informant questionnaire on cognitive decline in the elderly (iqcode): socio-demographic correlates, reliability, validity and some norms controlling the false discovery rate: a practical and powerful approach to multiple testing the european union general data protection regulation (eu / ) and the australian my health record scheme-a comparative study of consent to data processing provisions huge variation in obtaining ethical permission for a non-interventional observational study in europe the eu's general data protection regulation (gdpr) in a research context impossible, unknowable, accountable: dramas and dilemmas of data law why and how we should care about the general data protection regulation alzheimer europe's position on involving people with dementia in research through ppi (patient and public involvement) public involvement in health and social sciences research: a concept analysis the assisted living project: a process evaluation of implementation of sensor technology in community assisted living. a feasibility study when robots care: public deliberations on how technology and humans may support independent living for older adults nurse-led medicines' monitoring for patients with dementia in care homes: a pragmatic cohort stepped wedge cluster randomised trial alleviating staff stress in care homes for people with dementia: protocol for stepped-wedge cluster randomised trial to evaluate a web-based mindfulness-stress reduction course publisher's note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations the live@home.path trial is funded by the research council of norway with two phd grants and three postdoctorate grants. the centre for elderly and nursing home medicine at the university of bergen responsible for conducting the trial is funded by gc rieber foundations and the norwegian government. the authors acknowledge valuable support from the collaborating municipalities and their main contact person anne marie hanson (baerum), beate sørensen (kristiansand) and anita krokeide (bergen), as well as from the dignity centre, the dam foundation western norway university of applied sciences and the norwegian national advisory unit on women's health, oslo university hospital. supplementary information accompanies this paper at https://doi.org/ . /s - - -y.additional file . implementation seminar for the live@home.path trial. key: cord- -yd gk q authors: li, kin fun title: smart home technology for telemedicine and emergency management date: - - journal: j ambient intell humaniz comput doi: . /s - - - sha: doc_id: cord_uid: yd gk q with the ageing population, mobility is an important issue and it deters the elderlies to visit health clinics on a regular basis. individuals with disabilities also face the same obstacles for their out-of-home medical visits. in addition, people living in remote areas often do not get the needed health care attention unless they are willing to spend the time, effort and cost to travel. advances in information and telecommunication technologies have made telemedicine possible. using the latest sensor technologies, a person’s vital data can be collected in a smart home environment. the bio-information can then be transferred wirelessly or via the internet to medical databases and the healthcare professionals. using the appropriate sensing apparatus at a smart home setting, patients, elderlies and people with disabilities can have their health signals and information examined on a real-time and archival basis. recovery process can be charted on a regular basis. remote emergency alerts can be intercepted and responded quickly. health deterioration can be monitored closely enabling corrective actions. medical practitioners can therefore provide the necessary health-related services to more people. this paper surveys and compiles the state-of-the-art smart home technologies and telemedicine systems. in the past decade, one of the fastest growing multidisciplinary research areas is telemedicine. many definitions of this term exist depending on the specific context. other terms that often used interchangeably, in conjunction with, or under the umbrella of telemedicine, include telehealthcare, telemonitoring, e-health, e-care, ambient assisted living, smart homecare etc. all these terminologies, though, have the same objectives of delivering remote healthcare to an individual's home and enabling continuous health monitoring and emergency management. the increasing attention given to telemedicine is due to many factors. with unaccommodating transportation, and crowed hospitals and clinics in most cities, it is difficult for the elderlies and physically challenged to venture out of their homes to meet with health professionals for the needed treatment or for their routine clinical check-ups. similarly, healthcare delivery in remote rural areas is a demanding endeavour. having the capability of delivering healthcare services at the patients' home not only saves a great deal in monetary and human resources, but it also reduces response time in emergency situations. this is especially beneficial in the case where a large number of patients can be dealt with via communication technologies quickly from a centralized location without sending medical personnel to their individual homes. telemedicine has drawn worldwide attention in the s as modern technologies have made remote healthcare delivery a reality. within the european community, there were the hhh (home or hospital in heart failure) trials of a low-cost, self-managed home monitoring system for patients with chronic heart failures (pinna et al. ) . it was found that monthly home telemonitoring of cardiorespiratory signals being sent to a centralized interactive voice responding system is feasible and patients' compliance is high. the sm all (smart homes for all) project initiated by the european commission aims to provide a middleware platform for pervasive embedded service in a smart environment (baldoni ). the objectives of sm all are to provide dependability, scalability, privacy and security to users with disabilities. the brazilian family health program was initiated for preventive medicine delivered to the lower income population living in remote regions (correia et al. ) . the associated borboleta system enables healthcare professionals to use pdas (personal digital assistants) and mobile communication technologies for providing on-site home healthcare and improving the quality of public health services. in the usa, healthcare is a big financial burden for government, employers, and citizens. white et al. ( ) discussed major challenges to improve healthcare quality and concluded that a distributed diagnosis and home healthcare paradigm is the best approach for affordability and quality. germany has an initiative to provide encrypted health data for patients during emergency using electronic health card (dunnebeil et al. ) , though there is resistance by some medical professionals mainly due to privacy issues. telemedicine is a multidisciplinary research and application area using advanced technologies in information processing, telecommunication, bio-sensing, and artificial intelligence. specifically, smart environment and technologies play important roles in making home telemedicine feasible. one can view sensors being the foundation and communication networks as the pillars of a building, supporting various telemedicine applications under the roof to facilitate and provide a smart home environment to individuals, as shown in fig. . this work presents a survey of the latest advances in smart environment and home telemedicine. it is an extensively updated version of an earlier work on home telemedicine review (li and li ) . in addition, the current focus is on smart environment and emergency management. there exist numerous works in the literature and therefore only representative, technologically innovative, and interesting systems and approaches are presented. to properly introduce smart environment in telemedicine and emergency management, the fundamental technologies, potential applications, their evaluations, and future directions are presented in a sequential coherent perspective. section introduces smart environment enabling technologies including communication, sensor and sensor network. applications of smart telemedicine technologies for specific diseases, emergency management, and the elderly and physically challenged, are presented in sect. . target user groups' concerns and healthcare professionals' evaluation of telemedicine and smart homecare systems are discussed in sect. . in the concluding sect. , challenges, concerns and issues related to smart homecare are considered, and future trends of smart homecare environment are identified. in order to provide telemedicine effectively, various techniques and methodologies from different areas have to be integrated seamlessly into a smart system. this section examines the primary state-of-the-art enabling technologies for smart environment within a homecare setting for telemedicine: communication and associated telehealth standards, sensors, and sensor networks. many telemedicine systems leverage the latest mobile and wireless communication technologies as well as the widely available internet infrastructure to deliver quality services to home patients (castro et al. ; bonacina and masseroli ; li et al. ) . a home patient monitoring system proposed by figueredo and dias ( ) uses a simple rs serial interface to connect a mobile phone to patient monitoring devices, and transmits vital signs over the internet to the hospital. vnurse is a system developed by rehunathan et al. ( ) that uses the smart phone platform to provide secure and remote patient monitoring. bio-data in vnurse are collected from a wireless body network and transmitted using mobile networks with ip (internet protocol) connection. multi-agent systems are commonly found in smart telehealth applications. one of the earliest telemedicine projects, the independent lifestyle assistant, incorporates techniques in sensing model, distress situation detection, network response planning and machine learning (haigh et al. ) . the assistant is implemented as a multi-agent oriented assistive living architecture. liao et al. ( ) presented a telemonitoring architecture based on mobile agents and they also addressed the issues of reliability, security, and manageability of this platform. bramanti et al. ( ) employed gis (geographical information system) technology to identify the optimal locations of clinics that could provide neurological telemedicine services to patients. a remote-client, servicecenter architecture was proposed that uses g/cdma network and the internet to transfer vital sign information and medical analysis reports (zhang et al. ) . the web is a common and well-developed medium for communicating monitored and emergency data. raad and yang ( ) used the web for reporting real-time status and actions of a home bound elderly. voice over ip (voip) is another family of technologies and communication protocols that can be used effectively in smart environment and telehealthcare. menkens and kurschl ( ) investigated and evaluated voip enabled communication platforms and proposed a system for regular monitoring as well as providing responsive actions in emergency situations. citing decision and notification delays in typical telemedicine homecare settings, as a result of the large volume of information occupying the limited communication resources and consuming valuable computation resources on the remote server, chen ( ) team designed a smart gateway bridging a home-based wireless senor network and a public communication network. implemented as a standalone embedded system, the gateway is also capable of tracking a patient's health state and providing fast response in emergencies. communication is the foundation of providing telehealthcare in the smart home environment. there are many existing and emerging standards such as the ihe (integrating the healthcare enterprise) recommendations for information exchange (ihe ) , and the very popular zigbee (zigbee alliance ) that have been used in many smart environment projects (lin and sheng ; fraile et al. ) . de toledo et al. ( a, b) argued that in order for e-health to progress, the use of standards in providing plugand-play devices and interoperable modules is necessary. iso/iec universal plug and play (upnp) device architecture (iso a) is a standard for plug-and-play. lin and sheng ( ) carried out a study of using upnp network protocols to facilitate services in a residential network. park et al. ( ) examined the iso/ieee point-of-care medical device communication (iso b) and its compatibility to legacy devices. one of the important works related to standards is anagnostaki et al. ( ) development of a codification scheme for vital signs in health information interchange. they also discussed the practical aspect of integrating the proposed scheme into medical devices. jang et al. ( ) provided a noteworthy comparison of the key features, including power, complexity, number of nodes, latency, range, expandability, data rate, security, and audio connection, among the short-range communication protocols: wi-fi ieee . b standard (ieee ), zigbee (zigbee alliance ), and bluetooth (bluetooth ). ultra-wideband radio has also been proven to be effective in a smart home environment (bonato ). many research projects have drafted an exhaustive list of sensors to be used in their prototype work such as the tafeta (technology assisted friendly environment for the third age) group's implementation (arcelus et al. ). tafeta has shown how various sensors can be used effectively for different purposes in a smart home: magnetic switches on doors to monitor entry and exit, thermistor to track temperature, accelerometers on chairs and flooring to measure impact which is indicative of a falling condition, rfid (radio-frequency identification) to assist people with alzheimer or dementia, infrared motion sensor to detect mobility and presence, microphone array to detect abnormal noises and cries for help, smart grab bars with pressure sensors embedded to measure strength and balance trend, and pressure sensitive mats under bed to monitor deviated entry and exit patterns. in a typical smart home telemedicine system, there are two major types of data that need to be collected. the occupant's health state and the environmental information are important parameters to monitor and track. different types of sensors can be used to detect vital signs such as ecg (electrocardiogram) for heart rate, emg (electromyogram) for muscle activities, and blood pressure monitor for hypertension, while accelerometer, microphone, light sensor, air pressure recorder, and humidity indicator can be used to detect motion and location (fraile et al. ). in addition to signals obtained from sensors that are attached to the body or physical measurement devices in the home, there are other media that could be monitored such as video and sound. though, sound is the preferred medium due to privacy concerns. smart home technology istrate et al. ( ) team developed a sound analysis system to detect and classify alarming sounds in a noisy environment. using wavelet technology to process sound signals, their system achieves good performance comparable to other systems using different monitoring technologies. laydrus et al. ( ) investigated the use of frequency domain features in an automated sound analysis system and was able to achieve over % accuracy in classifying real-world sounds. vacher et al. ( ) presented a sound classification and speech recognition system with microphones placed in the home to detect short sentences or words that may indicate a distress situation. though, fleury et al. ( ) found that screams and distress sentences are difficult to differentiate due to distress sentences are similar to short words. hollosi et al. ( ) devised an acoustic event detection and classification system for ambient assistive living environment and interpreted coughing as an indicator of upcoming illness. pressure sensors have been used extensively in various parts of a smart home. arcelus et al. ( ) installed pressure sensors under the bed and on the floor next to the bed. their collected data include sitting pressure, standing pressure, and the time from sit to stand, which provide valuable information on a patient's mobility and other health-related data. leusmann et al. ( ) used arrays of piezo sensors to implement a sensor floor to track the whereabouts of the home occupants. moreover, data collected can be used to analyze impact patterns in case of fall or other emergency situations. similarly, miao et al. ( ) proposed a fall detection approach based on head tracking using two video cameras. they constructed three-dimensional head position models with unimportant objects and background filtered out. location tracking is an important aspect of providing a smart home environment. global positioning system (gps) has limitation operating indoor. various techniques have been used for indoor position location including the use of cascade correlation network and neural network modeling (chen et al. ). helal et al. ( at the university of florida has been working on the house of matilda project for the past several years. matilda is an in-laboratory mock up house to experiment various innovative ideas for smart home. one of their focuses is location tracking of the elderly by the use of ultrasonic sensor technology. wearable devices have been research extensively in the past decade. with the advances in device miniaturization and communication techniques, wearable devices can serve many different roles in telehealthcare, for instance, as a standalone monitoring device or as a node in a sensor network (hung et al. ; axisa et al. ; kang et al. ) . chaczko et al. ( ) developed a small wearable device that incorporates data storage, display screen, speaker, microphone, gps, rfid and accelerometers. the ability to monitor and locate makes this an ideal device to be installed in various places in the home and on the patient. wang et al. ( ) presented a body piconet based on smart sensor nodes for ecg. their work uses bluetooth technology for in-home data transfer and the internet for network data transfer to a hospital. nag and sharma ( ) presented their work on a wireless smart clothing system that is capable of acquiring ecg, pulse oximetry, body motion/tilt and skin temperature data. bonato ( ) gave an extensive survey and review of the major approaches to implement wearable systems. enabling technologies discussed in that work include miniaturization, lower-power radio, and dedicated operating system, which make body sensor network a reality. instead of focusing on specific or a few signals, multimodal systems are gaining popularity. medjahed et al. ( ) presented a fuzzy logic system utilising a wide range of sensors to recognize activities in a home environment. these sensors include physiological types (cardiac frequency, activity, agitation, posture and fall detection), microphones, infrared, water debit and statechange in appliances. many innovative and non-intrusive approaches have been developed in the past several years. ichihashi and sankai ( ) developed a small 'smart telecom' unit that integrates sensing circuit, digital signal processor, and wireless communication into a device of size by mm. such small devices can monitor one's vital signs without being invasive. kim et al. ( ) developed an integrated home health monitor using a chair as a non-invasive platform. this all-in-one monitor can record ecg, estimate blood pressure, measure blood glucose level and ear temperature. these sampled signals are then transmitted to a home server using zigbee technology, which in turn are transmitted to a healthcare center via the internet. ho et al. ( ) presented a very interesting initiative in an attempt to harvest body temperature and vibrations in the house to power implantable glucose sensors within a wireless home network. ping et al. ( ) home healthcare research project places heavy emphasis on recognizing a patient's emotional state in addition to physical state. facial, vocal, eye-movement, and physiological signals are tracked and analyzed to provide the psychological aspects of a patient's health. hussain and colleagues ( ) explored the integration of rfid and wireless sensor network in a smart home environment. their idea is to use the wireless sensor network for tracking the movement and location of individuals while the identification of a person can be accomplished by the wearing of rfid tags. the separation of these events allows for quick decision-making and responses to various situations. this section presents the major application areas that smart telemedicine plays a dominant role. unlike face-to-face medical consultation, useful information must be derived from the raw data in telemedicine. it is almost impossible for humans to examine this large volume of data manually and to detect any changes. therefore, techniques have to be developed in order to automate the diagnostics and abnormality detection process. this section introduces smart telehealth systems developed for specific illnesses. back in , finkelstein and friedman ( ) presented a home asthma telemonitoring system that has the capability of assisting asthma patients in self-care plans as well as alerting healthcare personnel when distress situation is detected. lau et al. ( ) implemented a multimedia system that employs bio-sensor data, messages and video transmission to allow physicians and patients with shoulder replacement surgery to communicate and monitor the progress. chun et al. ( ) developed a home telemedicine system for cardiac and respiratory disease, diabetes, and hypertension. using artificial intelligence techniques, this system is capable of providing automated diagnostic and consultation. performance evaluation has shown that the implemented system is a viable alternative to personal monitoring and consultation. rudi and celler ( ) presented an expert telemedicine system that is capable of storing various data and measurement related to diabetes management. in addition to present to medical professionals records associated with individual patients, the system is also capable of recommending insulin dose adjustment to patients. jiang and xie ( ) proposed a telehealth monitoring system that uses data mining techniques to deal with the large volume of biological data. they also utilized association rules to recommend actions to be taken for hypertension. zhang et al. ( ) developed a chronic disease management system using a real-time knowledge base and the case based reasoning approach, together with a web patient monitoring system, to improve the diagnostic of diabetes and hypertension. fergus et al. ( ) developed a body area sensor network intended for physiotherapist's use. this system collects and stores motion data of the home patient, and provides some quantitative assessments of the patient's progress. gobbi et al. ( ) designed a system that addresses issues related to real-time data processing, network architecture, and web-based data management and services. as an automated home monitoring system for lung obstruction, that system was shown to be reliable and efficient. silva et al. ( ) developed an internet-based system for home monitoring of patients with respiratory muscle disorders. they concluded that their system would be a useful tool for the evaluation of inspiratory muscle in telemedicine services, thus reducing the costs of handling these patients. a smart home with technologies to enhance the quality of life of quadriplegia patient was proposed by uzunay and bicakci ( ) . they placed heavy emphasis on the security aspect of their voice activated smart home facilities. to monitor blood flow velocity in a wireless home environment, wu et al. ( ) presented a self-monitoring device to measure blood flow velocity that is integrated in a labview (labview ) mobile environment. smart home telemedicine technology is ideal for patient selfmonitoring and quality of life improvement, which are the subjects in the next section. the segments of our population that need quality healthcare the most are the elderly and physically impaired. home telemedicine and telehealthcare systems are the solution to deliver low-cost yet quality services for these individuals. in , the united nation estimated that at least million people have disabilities worldwide (united nation ) . there are various types and degrees of disabilities. according to the massachusetts department of elementary and secondary education, the impairments can be classified into communication, emotional, health, intellectual, neurological, physical, and sensory (mdese ) . andrich et al. ( ) presented their smart home project with case studies involving people with disabilities in different categories: hemiplegia, paraplegia, quadriplegia, motor impairment, and cognitive impairment. disabled person with the specific type of impairment would require specialised care and tailored smart home technologies. many telehealth and assistive systems have been proposed and are in place for the elderlies. meng et al. ( ) has been working on teleoperated mobile robots via the internet to provide quality healthcare to the elderly. they have also designed robotic pets that are capable of physiological data collection and transmission, as well as simple healthcare tasks (ling et al. ) . briere and colleagues ( ) presented a teleoperated mobile robot with videoconferencing capability for in-home telerehabilitation services. vergados et al. ( vergados et al. ( , discussed their inhome project which goal is to provide intelligent ambient assistive living services to elderly people at home for independent living. lim et al. ( ) presented a home healthcare set-top box specially designed for the elderlies. their work focused on standard compatibility and smart home technology adherence to the iso/ieee personal health data standard. vinjumur et al. ( ) implemented a web-based medicine management system that uses rfid tags to monitor medication intake for the elderly at home. with multimodal signal sampling, it is imperative to incorporate data fusion techniques in telehealth monitoring and decision-making. virone et al. ( ) investigated data fusion of collected video and sound signals in the monitoring of elderly patients at home. medjahed's group focused on data fusion of multi-senor inputs to provide medical recommendation using a rule based approach (medjahed et al. ) . artificial intelligence techniques play a major role in smart home systems. papamatthaiakis and colleagues ( ) presented an indoor activity recognition system for the elderlies. using association rules and allen's temporal relations, they claimed a % recognition rate in identifying everyday activity such as bathing, preparing meals, doing laundry, etc. the mavhome project aims to provide a smart and adaptive environment for inhabitants (jakkula et al. ) . in order to meet the goals of comfort and efficiency in mavhome, health trend monitoring and prediction are made using support vector machine and forecasting tools based on time series data collected in a sensor network. huo et al. ( ) presented a healthcare environment for the elderlies using a home sensor network and a body sensor network. the interesting aspects of this work lie in the functionalities provided, including outdoor monitoring, and emergency decision and alarms. various communication techniques, such as automated telephone call, sms and email, are integrated into the system, transmitting emergency signals to caregivers and family members. smart decision-making using hidden markov model is proposed to speed up the decision process, increase the accuracy of event detection, minimise measurement errors, and correct transmission errors. franco et al. ( ) proposed the use of passive infrared sensors placed in the living quarters of an elderly person to detect abnormal changes in behavior. this system would allow early admission of dependent care for those who show a shift in daily routine, for example, individuals with alzheimer disease. the monitoring of behavioural changes is an area of interest in telehealth since the onset of certain alarming situations could be detected and healthcare professionals could then be notified. the next section focuses on using smart healthcare system to handle emergency. emergency planning and management with respect to inhome healthcare has been a vigorously research topic. rosen et al. ( ) proposed the cybercare system to handle national scale disasters. taking a military approach to map strategy, operations and technology to the healthcare realm of policy, functionality and network infrastructure technologies, they argued the necessity of a nation-wide support information infrastructure to cope with disaster, and of incorporating surge-capacity into a national disaster response system. citing the fact that the patients who receive critical emergency services often are not the actual victims of the disaster or outbreak such as sars (severe acute respiratory syndrome), joseph et al. ( ) developed a home healthcare disaster planning, recovery, and management system to facilitate treatment of the actual victims. by integrating in-home intelligent devices to provide timely measured information to public offices such as red cross, local police etc., they reasoned that the medical personnel can provide homecare remotely and deal with a mass-scale epidemic and natural disasters appropriately. smart environment not only can be used in a home environment but can also be used outdoor. smalls et al. ( ) devised a health monitoring system for use in mass causality emergency situations. by placing a health monitoring device on the body of a victim and integrating this node to a wireless ad-hoc network, vital signs of the victim can be transmitted to regional and national emergency response institutions. this is particular useful in cases where infrastructures are non-operational due to catastrophic disaster or when communication channels are overwhelmed by emergency requests. advances in wireless technology have driven down the cost of ad-hoc networks, and with fewer attending field personnel, smalls et al.'s approach may prove to be cost effective in the very near future. wouhaybi et al. ( ) also proposed a system with similar objectives but they focused on the reduction of false alarm using a rule-based decision system. a disaster management framework proposed by bessis et al. ( ) integrates various technologies including web services, grid and cloud computing, ad-hoc mobile networks, and wearable and body sensors. their aim is to provide coherent and collective resource utilization and decisionmaking for multiple parties in emergency situations. jang et al. ( ) proposed a system using multiple sensor technologies including bio-sensors to monitor an elderly's daily physiological status. many services are provided to the patient including early warning due to a change of health status, advice for health improvement, and appointment with specific medical practitioners. in addition to sensors, an active robot that provides services to human is part of a smart assistive environment proposed by lin et al. ( ) . using multimodal observations to recognize voice and other events, their project shows that health predictions, evaluations, and decisions become more reasonable in the evaluation of emergency level and the assistance required in critical events. in one of the early studies, de lunsignan et al. ( ) examined the effectiveness of a home cardiopulmonary monitoring system. this system collects various vital measures via sensors attached to the body and transmits the data wirelessly to a nearby unit at the patient's home. the data are then transferred to a centralised monitoring station. they found the system is acceptable to patients, functionally satisfactory in the home environment, and very reliable in the collection of objective data. capomolla et al. ( ) monitored patients with chf (chronic heart failure) either under usual care or telemonitoring care. their study showed that home telemonitoring is more effective than usual care in reducing healthcare requirements and can improve outcome in chf patients. raju et al. ( ) presented their study on the cost effectiveness of mobile telemedicine applications, and the quality of care and medical error reduction. they reported on their extensive literature search and felt that the findings are inconclusive and well-designed protocols are necessary to conduct further large-scale investigations. zhang and bai ( ) used a queueing model to evaluate the performance of a home ecg and blood pressure monitoring system based on trial data over a -month period. their objective was to study the traffic load, response time, and scalability of the system. the results are more than satisfactory and show great potential of the examined monitoring system. de toledo et al. ( a) reported their experience in using a telemedicine homecare system for patients with chronic obstructive pulmonary disease. their results suggest that home telemedicine services provide good support to the healthcare professionals, improve patients' condition, and incur low costs. jasemian ( ) argued that a successful telemedicine application depends on the patient's compliance, trust and comfort in such home-based systems. an experiment was carried out in with the patients using ecg monitoring device with a real-time wireless system continuously for a long period of time. over half of the participants found the system user friendly, reliable, and usable with acceptable performance. though they found the ecg device heavy and not user-friendly. some have argued that the evaluation of home telehealth information systems should not be assessed simply on grounds of technical innovation but should use a holistic interpretive approach. in , kaldoudi and colleagues ( ) proposed a framework for evaluating home telehealth intervention, together with its application for peritoneal dialysis at home. ojasalo et al. ( ) conducted a study on smart home technologies and services for intellectually disabled. they found that safety technologies are very well received, and the balance of safety and privacy can be addressed by the appropriate technologies. a study conducted by ziefle et al. ( ) on the acceptance of video monitoring in smart home environment for elderly and disabled reveals that acceptance and users' needs and wants are the main issues in a successful deployment of such home medical monitoring technology. the study also shows that there are serious concerns that data may be altered, illegally accessed, and deleted intentionally or due to system failure or virus attack. beer and takayama ( ) performed a study on elderlies who used a mobile remote presence (mrp) system. this study reveals many interesting issues. benefits of mrp identified by the elderlies include being able to see and be seen with a mrp system, reduction in travel costs and hassles, and a decrease in isolation in a social context. however, concerns raised include mrp usage etiquette, personal privacy, possible overuse, and reliance on the system. though the elderlies in the study are not technologically inclined, they prefer to operate the mrp system by themselves. smart home healthcare and telemedicine systems are here to stay, but there are still many challenges and issues to be resolved. innovation is important to improve the efficiency and effectiveness, and hence acceptance, of these systems. security is major concern in the acceptance of homecare with modern technologies. many research groups have focused on one of the most important issue in telemedicine, that of the integrity and security of transmitted data. simpson et al. ( ) posed several challenging issues regarding continuous home monitoring: who should receive information as the patient, family members, caregivers and medical professionals all have interest; what information should each person receive without violating any data privacy and security concerns; how should information be presented since each party may prefer different mode of communication such as telephone, computer, etc. proposed solutions to the security issue include cryptography (mantas et al. ) and context-aware access control rules (guennoun and el-khatib ). due to the sensitive nature of health information, privacy is an important issue in data transmission and storage in telehealth systems. without proper and established protocols and regulations in place, telemedicine would not be used widely as many people are concerned with the smart home technology privacy of their health information. kotz and colleagues ( ) compared existing privacy frameworks, identified a set of desirable privacy properties in mobile healthcare systems, and used their findings to propose a privacy framework. they also raised several privacy issues and questions that need to be addressed by technical people, governmental agencies and regulatory organisations. reliability is another critical factor in the implementation of smart homecare. wireless technologies make telehealth care possible, however, such networks that operate in hostile outdoor environment have many reliability issues. using rural china as a case study, fong and pecht ( ) identified and reviewed the factors that can impact on the reliability of telehealth care networks: physical obstacles, atmospheric absorption, inadequate fade margin and system failure. gaddam et al. ( ) studied extensively the various issues related to the implementation of sensor networks for home healthcare and emergency. they have identified potential challenges including interoperability and interference, real-time data acquisition and processing, reliability and robustness, energy conservation, data management, data privacy and security, and comfort and unobtrusive operation. in addition, design issues for wireless networks considered are deployment of sensor nodes, mobility of wireless sensor, cost and size of the wireless node, infrastructure of the network, network coverage, network size, power management, life-time of the sensor networks, and quality of service requirements in such networks. since the second-half of the s, there have been numerous reported work and innovation in smart healthcare systems. taylor and dajani ( ) gave a sound argument that the future home healthcare systems should take into consideration a well-balanced implementation infrastructure based on the web, mobile, and broadband technologies. moritz et al. ( ) emphasized the importance of various fundamental issues in using interoperable devices in home healthcare. these issues include energy consumption, power supply, memory, computing power, and bandwidth. koufi and colleagues ( ) implemented a grid portal that provides services to people who need medical advice at their homes. the portal is an integrated system of wireless personal digital assistants (pdas) and grid technology, with heavy design emphasis placed on security access and storage of data. for telehealth, the monitoring of an individual creates a continuous stream of data that must be stored either locally at home or at a centralised database. lasierra et al. ( lasierra et al. ( , used an ontology approach to arrange patient data and records in a formal structure so as to support health information interoperability. invasive devices are being recognised as one of the prime reasons at-home patients are hesitant to use telehealth care monitoring systems. motoi et al. ( ) demonstrated the possibility of using non-invasive technologies for home healthcare. devices are installed on toilets, bathtubs, and beds to measure various vital signals. they deployed this prototyping system for subjects with cardiovascular disease or sleep disorder successfully. modifying and conditioning patient's behaviour is another innovative trend that is gaining attention these days. evers and krose ( ) developed a monitoring system tracking the physical and emotional condition via a sensor network. patients are provided with feedback to promote activities and behaviour with positive health impact. also, the integration of wearable technology and robots is a promising avenue to facilitate therapeutic intervention for chronic conditions, which potentially can reap benefits from these combined technologies (bonato ). point-of-care testing is another developing trend in enhancing home healthcare. many innovative devices are being investigated that potentially shorten the time between testing and diagnostic, and are especially useful in rural settings. beyette et al. ( ) provided a comprehensive survey and a special volume on these innovative handheld and home-based devices. these devices include sensors for multispectral imaging, tomography, cardiac, eeg, chlamydia trachomatis, bladder pressure, respiratory impairment, as well as for detection and analysis of macula swelling, pathogen detection, metabolic syndrome prediction, energy metabolism, chagas disease, vascular tree identification, parkinson's disease, etc. back in , stankovic et al. ( ) at the university of virginia identified three critical development issues in wireless sensor networks for in-home healthcare. the first issue is the enabling technologies for future medical devices: interoperability, real-time data acquisition and analysis, reliability and robustness, and new node architectures. embedded, real-time, networked system infrastructure is the other critical development area which includes patient and object tracking, communication, interference, multimodal collaboration, energy conservation, and multi-tiered data management. the third issue concerns medical practice-driven models and requirements including role-base access control and delegation in realtime, unobtrusive operation, and records and data privacy and security. the critical development areas of concern, as suggested by stankovic's team, have not yet been fully addressed with today's technology. there are ample opportunities for research and development in improving telemedicine systems as they are still at an infancy stage. some of the challenges and issues in building a smart home environment are shown in fig. . without a doubt, smart home telemedicine systems will be deployed in an increasingly rapid pace in the years to come. anagnostaki a et al ( ) your floor knows where you are: sensing and acquisition of movement data a survy on home telemedice home healthcare platform based on wireless sensor networks an extensible telemonitoring architecture based on mobile agent method home healthcare set top-box for senior chronic care using iso/ieee phd standard using osgi upnp and zigbee to provide a wireless ubiquitous home healthcare environment decision making in assistive environments using multimodal observations a study of integrating digital health network with upnp in an elderly nursing home robotic pet based interactive home healthcare system integrity mechanism for ehealth tele-monitoring system in smart home environment massachusetts department of elementary and secondary education human activities of daily living recognition using fuzzy logic for elderly home monitoring a pervasive multi-sensor data fusion for smart home healthcare monitoring e-service robot in home healthcare voip based telehomecare application kiosk fall detection in the elderly by head tracking web services to improve interoperability of home healthcare devices development and clinical evaluation of a home healthcare system measuring in toilet, bathtub and bed without attachment of any biological sensors wireless e-jacket for multiparameter biophysical monitoring and telemedicine applications better technologies and services for smart homes of disabled people: empirical findings from an explorative study among intellectually disabled monitoring and modeling simple everyday activities of the elderly at home /ieee phd standardization of legacy healthcare device for home healthcare services designing an emotional majormodo in smart home healthcare home telemonitoring of respiratory activity and heart rate variability in chronic heart failure patients: the challenge of the home or hospital in heart failure project a ubiquitous smart home for the elderly status of mobile computing in health care: an evidence study vnurse: using virtualisation on mobile phones for remote health monitoring the future of command and control for disaster response design and implementation of experttelemedicine system for diabetes management at home an internet-based system for home monitoring of respiratory muscle disorders plans and planning in smart homes in lncs in computer science health monitoring systems for massive emergency situations the future of homecare systems in the context of the ubiquitous web and its related mobile technologies convention on the rights of persons with disabilities sha: a secure voice activated smart home for quadriplegia patients speech recognition in a smart home: some experiments for telemonitoring intelligent services for assisting independent living of elderly people at home service personalization for assistive living in a mobile ambient healthcare-networked environment web based medicine intake tracking application smart home technology first steps in data fusion between a multichannel audio acquisition and an information system for home healthcare body piconet for the telemedicine system based on home networks improving healthcare quality through distributed diagnosis and home healthcare (d h ) a context-management framework for telemedicine: an emergency medicine case study. wireless health home self-monitoring of blood flow velocity based on labview mobile environment research on home health care telemedicine service system concerned with the improvement of medical resources utilization rate and medical conditions performance analysis of a home telemonitoring system agent-based web healthcare systems for realtime chronic disease medical technology in smart homes: exploring the user's perspective on privacy, intimacy and trust key: cord- -cbyd dr authors: o’neill, desmond; briggs, robert; holmerová, iva; samuelsson, olafur; gordon, adam l.; martin, finbarr c. title: covid- highlights the need for universal adoption of standards of medical care for physicians in nursing homes in europe date: - - journal: eur geriatr med doi: . /s - - - sha: doc_id: cord_uid: cbyd dr the nursing home sector has seen a disproportionately high number of deaths as part of the covid- pandemic. this reflects, in part, the frailty and vulnerability of older people living in care homes but has also, in part, been a consequence of the failure to include care homes in the systematic planning of a response to covid, as well as a measure of neglect of standards and quality improvement in the sector. in response, the eugms published a set of medical standards of care developed in consultation with experts across its member national societies in . the standards consisted of seven core principles of medical care for physicians working in nursing homes as a first step in developing a programme of clinical, academic and policy engagement in improving medical care for older people who are living and frequently also dying as residents in nursing homes. the gravity of the concerns arising for nursing home care from the covid- pandemic, as well as emerging insights on care improvement in nursing homes indicate that an update of these medical standards is timely. this was performed by the writing group from the original guidelines and is intended as an interim measure pending a more formal review incorporating a systematic review of emerging literature and a delphi process. the nursing home sector has seen a disproportionately high number of deaths as part of the covid- pandemic. this reflects, in part, the frailty and vulnerability of older people living in care homes but has also, in part, been a consequence of the failure to include care homes in the systematic planning of a response to covid. this has compounded longstanding issues with funding, staffing, and access to expertise in geriatric medicine and gerontological nursing in long-term care [ ] . with the pandemic, there is the additional challenge of community life exposing care home residents to specific increased risks of this easily transmissible virus. [ ] . recognition that providing organised, gerontologically attuned medical care for older people requiring nursing home (nh) care is a significant challenge is not new [ ] . the urgency of so doing is partly due to the increasing numbers of people requiring residential care. by , the world is projected to have . billion people over years old ( % of the total population) compared to million in [ ] . while the majority of older people spend most of their later years living healthy, independent lives, the chances of needing nh care increases significantly with age. currently around % of older people in europe live in nhs [ ] or in residential care institutions the number of people requiring institutional care is projected to increase by % and % in germany and the uk respectively between the years and [ ] . the ancien (assessing needs of care in european nations) research project involving eu member states provided estimates of future long-term care needs of older europeans [ ] . in this, a doubling of need for nursing and residential care beds from to was predicted in the netherlands, and a % increase in poland, the latter starting from a low base as is widespread in central and eastern european countries. this is necessitated in part by demographic changes affecting numbers and proportion of population age groups but also the changing nature of the health and healthcare needs of older people. the nature of what consists a nursing home defies easy characterization, and although a range of terminologies is used in various countries for nursing homes, including 'care homes': in the interests of developing a common interdisciplinary language, the term 'nursing home' is adopted in line with the international association of gerontology and geriatrics and american medical directors association position statement [ ] . in addition, we are mindful that care in nursing homes in europe is provided by a range of medical specialties, from general practitioners, through dedicated nursing home doctors, to geriatricians [ ] : however, our special interest group liaises with all countries in europe, and our deliberations are formed with a view to applicability in all of these settings. the european ageing report from the european commission and the economic policy committee stated that determined policy action on long-term care systems was needed in europe [ ] . it is almost a decade since the world health organization and the international association of gerontology and geriatrics produced an important strategy document for improving care and research in nursing homes with a global perspective [ ] . however, each profession engaged with nursing home healthcare needs to develop its own standards. improving provision and standards of long-term care generally including care homes was a central pillar of the global strategy and action plan on ageing and health of the world health organization (who) published in and adopted by member countries at the world health assembly of [ ] . most people in nursing homes need help with personal care in daily life, as illustrated by the shelter study, a months prospective study of residents in nursing homes in eu countries (the czech republic, england, finland, france, germany, italy, the netherlands) and israel, using the interrai long-term care facility assessment tool (interrai ltcf). disability in activity of daily living and cognitive impairment was observed in . % and . % of residents, respectively. also common were responsive behaviour previously described as behavioural symptoms ( . % of residents], falls ( . %), pressure ulcers ( . %), pain ( . %) and urinary incontinence ( . %) [ ] . the care home resident population had a higher prevalence of significant functional limitations in comparison to agematched community dwelling peers [ ] these characteristics result in considerable clinical complexity [ ] . for example, over % of nh residents presenting to an irish emergency department (ed) had at least four significant medical comorbidities, as well as a pre-existing diagnosis of dementia in almost two thirds [ ] . they also have high rates of delirium during acute illnesses [ ] , as well as high rates of frailty [ ] and depression: despite all this, nh residents receive medical care which is less organised than their community dwelling counterparts with poorer monitoring of chronic disease and higher rates of unnecessary prescribing and especially inappropriate sedation [ ] . although comprehensive geriatric assessment (cga) is ideally the basis of providing care in nursing homes, its implementation is challenged by a range of factors [ ] .whilst high quality care for individuals with these characteristics and their associated healthcare needs requires an integrated multidisciplinary approach promoted by cga, each profession engaged with nursing home care can contribute by developing and promoting its own standards of care in harmony with the tenets of cga. the eugms, as a society representing national organisations for geriatric medicine in europe, instituted the special interest group for long term care in , providing a european focus for the development of standards of care, research and education for the medical care of residents of nhs. we reported from a survey across members that only % of eugms countries had written medical care standards for physicians applicable to nursing home care provided by professional organizations [ ] . in response, the eugms published a set of medical standards of care developed in consultation with experts across its member national societies [ ] . these standards comprised of seven core principles of medical care for physicians working in nhs as a first step in developing a programme of clinical, academic and policy engagement in improving medical care for older people who are living and frequently also dying as residents in nursing homes. adoption of these standards is complicated by the fact that medical care is provided by a heterogeneous range of physician disciplines across europe, in the main general practitioners, but also medical officers, internists or geriatricians [ ] : only in the netherlands is there a specific post-graduation career and training path to produce nh specialists (called 'elderly care physicians', distinct from geriatricians who have a longer training incorporating acute internal medicine of older people) [ ] . here we highlight the need for progress in widespread adoption and promotion of the eugms standards by drawing on the experience of the covid pandemic. the gravity of the concerns arising for nursing home care from the covid- pandemic, as well as emerging insights on care improvement in nursing homes indicate that an update of these medical standards is timely. this was performed by the writing group for the original guidelines and is intended as an interim measure pending a more formal review incorporating systematic review of emerging literature and a delphi process. ) all patients under consideration for admission to nursing home care should have an assessment by a specialist in geriatric medicine or old-age psychiatry or both if necessary, prior to admission. this assessment aims to detect and remediate illness and functional loss so as to clarify whether nh admission can be avoided or deferred. it would also better delineate care needs for the older person, whether continuing to live in the community or entering the nh. such assessments have been shown to reduce deterioration in physical functioning and reduce need for contact with nh and emergency services in those assessed, as well as reducing levels of distress amongst their carers [ ] . the role of the assessor, and associated multi-disciplinary team as required, is to act as a gate-keeper to nh care and advocate for the older person, ensuring older people receive continuing care in an environment appropriate to their needs and wishes. while old age psychiatry is not as yet recognized as a specialty in all european countries, the psychiatry section of the european union of medical specialists recommended its development in , and in general in countries where it is established it is accepted that geriatricians and old age psychiatrists will sufficiently understand their scope of practice to make due referral to the other specialism as required. ) the coordination of the broad range of complexities of care, including liaison between primary, secondary care, public health, laboratory sciences and occupational health, as well as the need to incorporate resilience and reserve in the nursing home sector mandate the need for clearly specified clinical leadership for both individual nursing homes and for nursing homes within specified regions commensurate with provision of the range of services needed. the covid- pandemic has uncovered the complexity of coordinated liaison between healthcare staff in nursing homes, ranging from the challenges of screening staffwhich requires consideration of backfill for staff quarantined when screening positive as well as effective inputs from occupational health and specialists in public health and infectious diseases-to the planning of the resilience and reserve needed for responding to pandemics. it is clear that this cannot happen effectively without a mechanism for oversight and leadership for both individual nursing homes and also nursing homes within a region commensurate with provision of the range of services needed [ ] . one possible model is that of the medical director role developed in the usa following scandals over quality of care in nursing homes in the ′s, a mode of oversight in continuing development [ ] . such leadership needs be suitably structured, trained and supported for complex task of developing appropriate liaison, relationships, quality improvement and training within the cultures of care in nursing homes and among supporting services [ ] . ) given the complexity of care associated with older people in nursing homes, physicians providing medical care to nursing home residents should have a formal competence in geriatric medicine and old age psychiatry. this competence should include a core set of knowledge, skills and attitudes which prepares physicians, in the main likely to be general practitioners, for the complexity of care in later life, spanning prevention, health gain, health maintenance and palliative care. currently only % of health services in the eugms countries have a requirement for specific training in geriatric medicine for doctors working in nhs [ ] . this specific training may take the form of a defined training pathway for nh physicians as in the netherlands [ ] or else through the added qualifications such as diplomas in geriatric medicine for general practitioners as in ireland [ ] . in addition, training in core aspects of nursing home medicine should be incorporated into undergraduate medical training and higher specialist training. ) the medical care needs to be supported in the nursing home by nurses who have gerontological training, including training in dementia and palliative care, and care attendants who have due training in the care of older people. effective care of older people in care homes requires integrated working by a multidisciplinary team of experts [ ] . this requires support of nursing with training and experience in care of older people (gerontological nurses). indeed, the employment of agency staff with no background training in gerontology has been associated with lower quality of care in nhs [ ] . high turnover of nursing staff is a well-recognised problem in nhs and to promote working in the nh sector as a stimulating, rewarding career path, nurses need to receive appropriate guidance and support [ ] . the medical care needs to be supported by associated disciplines, and in particular physiotherapy, occupational therapy, speech and language therapy [including skills in dysphagia assessment and management], clinical nutrition and pharmacy, dentistry, ophthalmology and audiology as a minimum, and access to other professions-social work and psychology-as required. the multi-disciplinary team (mdt) has an essential role in maintenance of mobility and function [ ] , contracture prevention [ ] , seating and pressure care and nutritional support [ ] , prevention of aspiration [ ] , and polypharmacy. full mdt support is needed to ameliorate the functional loss that often parallels acute illness in nh residents, from decompensation of gait disorders in the context of delirium to swallow deterioration and aspiration. if therapy is not available in this setting, patient care will suffer, and referrals of nh patients to acute care will increase unnecessarily. such mdt input may be from teams shared with community services or through teams dedicated to one or more nursing homes. building a collaborative and shared learning approach between "external mdts" and care home staff increases the quality of health care provided [ ] . ) the medical care also needs to be supported by specialist gerontology services, including geriatricians, old age psychiatry and clinical nurse specialists as well as specialist palliative care support. the complexity of nh residents is such that access to specialist care (beyond the competency of treating nh physician) will be required. access to expertise in areas such as co-ordinating rehabilitation, managing multi-morbidity and behavioural disturbance, and palliative care [ ] , is crucial. this expertise should ideally be provided on-site as required as an adjunct to the treating physician, with the development of telemedicine services potentially providing an alternative option for access to specialist opinion [ ] . this need for specialist support has been demonstrated in response to the pandemic by the rapid implementation in south west france of a covid- support platform, linking the expertise of hospital geriatric departments to the teams providing care in nursing homes, enabled by an established between these hospital geriatric units and nursing homes, both public or private [ ] : similar developments have occurred in a number of european countries. ) the process of maintaining resident medical and nursing records should be gerontologically attuned so as to reflect the needs of this patient group and support clinical decision-making. one of the major barriers to medical and nursing home care has been the lack of systematic and comprehensive recording of the care needs of residents. adoption of an assessment tool that is resident-centred rather than focused on gathering information for reimbursement would be useful in this regard [ ] . among the qualities desirable in such medical and nursing records are that they should be clinically useful; reasonably brief; computerised in a manner consistent with icd- , the international classification of function, and the systematized nomenclature of medicine (snomed), the underlying code of electronic patient records; support individual care plans for common conditions; help generate dependency levels; assist regulatory authorities; and allow for the collection of meaningful data [ ] . these tools have the ability to support improved standards and research in nhs, although they will not do so on their own, and need to be implemented in a context which recognises the importance of appropriate philosophies of care, staff training and resourcing. ) appropriate schedules should be maintained for preventive interventions (such as vaccination), monitoring of chronic diseases, and regular clinical review and medication review. considering that the majority of presentations of nh residents to the ed are in the context of decompensation of a chronic disease rather than a de novo illness, regular monitoring of chronic disease is vital [ ] . the concern is that this task falls between the two stools of hospital-based specialist clinics and regular general practitioner (gp) input. for example, almost % of nh managers identified a lack of formal follow-up procedures for nh residents with stroke disease, one of the most prevalent comorbidities in nh residents [ ] . additionally, despite being reviewed more often by their gp than community dwelling older people, nh residents are less likely to be followed up by their gp after this review [ ] . a structured format for review of chronic disease such as osteoporosis, heart failure or hypothyroidism, as well as a medication review and appropriately executed and supported advance care planning, seems the way forward, although this will obviously require increased support in terms of time and finances for the physician, responsible. these guidelines should represent the minimum standards of medical care for physicians engaging with the care of nh residents. while it is important not to over-medicalise an environment that is also a home to its residents, we must also recognise this cohort as vulnerable, with levels of disability and medical comorbidity that dictate a need for structured, organised medical care. given the growing numbers and increasing complexity of multi-morbidity and functional loss among frail older people in europe requiring nh care it is clear that the current lack of attention to standards and organisation of medical care in these facilities is no longer acceptable. while it is true that long-term care policies and measures are the responsibility of the individual eu member states and that the huge differences in long-term care provision across the eu pose barriers to eu policy coordination, it is hoped that these updated guidelines represent an important step towards improving medical care in nhs, and may also prove useful in a wider european and global context. covid- in nursing homes editorial: geriatric medicine in italy in the time of covid- international association of gerontology and geriatrics: a global agenda for clinical research and quality of care in nursing homes an aging world: (international population reports, p / - ). us government printing office identification of the main domains for quality of care and clinical research in nursing homes european study of long-term care expenditure: investigating the sensitivity of projections of future longterm care expenditure in germany, spain, italy and the united kingdom to changes in assumptions about demography, dependency projecting long-term care use and supply in europe an international definition for "nursing home who are the main medical care providers of european nursing home residents? the ageing report: economic and budgetary projections for the eu member states global strategy and action plan on ageing and health of the world health organization assessment of nursing home residents in europe: the services and health for elderly in long term care (shelter) study profiling disability within nursing homes: a census-based approach new horizons in care home medicine nursing home residents attending the emergency department: clinical characteristics and outcomes delirium during acute illness in nursing home residents frailty in institutionalized older adults from albacete. the final study: rationale, design, methodology, prevalence and attributes quality of care for elderly residents in nursing homes and elderly people living at home: controlled observational study role of comprehensive geriatric assessment in healthcare of older people in uk care homes: realist review standards of medical care for nursing home residents in europe towards standards of medical care for physicians in nursing homes dutch elderly care physician: a new generation of nursing home physician specialists the value of specialist clinical assessment of older people prior to entry to care homes pandemic influenza plans in residential care facilities developing future nursing home medical directors: a curriculum for geriatric medicine fellows optimal healthcare delivery to care homes in the uk: a realist evaluation of what supports effective working to improve healthcare outcomes health care for older people in ireland use of agency staff in nursing homes are nursing home survey deficiencies higher in facilities with greater staff turnover rehabilitation for older people in long-term care contractures in nursing home residents screening for malnutrition in nursing home residents: comparison of different risk markers and their association to functional impairment oropharyngeal dysphagia among patients newly discharged to nursing home care after an episode of hospital care palliative care for older people in nursing homes echo-age: an innovative model of geriatric care for long-term care residents with dementia and behavioral issues editorial: a covid- support platform for long term care facilities beyond the 'iron lungs of gerontology': using evidence to shape the future of nursing homes in canada reliability of the interrai suite of assessment instruments: a -country study of an integrated health information system hospital admissions from nursing homes: rates and reasons. nursing res prac stroke and nursing home care: a national survey of nursing homes do nursing home residents make greater demands on gps? a prospective comparative study conflict of interest on behalf of all authors, the corresponding author states that there is no conflict of interest.ethical approval this article does not contain any studies with human participants or animals performed by any of the authors.informed consent for this type of study formal consent is not required.open access this article is licensed under a creative commons attribution . international license, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the creative commons licence, and indicate if changes were made. the images or other third party material in this article are included in the article's creative commons licence, unless indicated otherwise in a credit line to the material. if material is not included in the article's creative commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. to view a copy of this licence, visit http://creat iveco mmons .org/licen ses/by/ . /. key: cord- - x v q authors: beck, matthew j.; hensher, david a. title: insights into the impact of covid- on household travel and activities in australia – the early days of easing restrictions date: - - journal: transp policy (oxf) doi: . /j.tranpol. . . sha: doc_id: cord_uid: x v q the covid- disease continues to cause unparalleled disruption to life and the economy world over. this paper is the second in what will be an ongoing series of analyses of a longitudinal travel and activity survey. in this paper we examine data collected over a period of late may to early june in australia, following four-to-six weeks of relatively flat new cases in covid- after the initial nationwide outbreak, as many state jurisdictions have begun to slowly ease restrictions designed to limit the spread of the sars-cov- virus. we find that during this period, travel activity has started to slowly return, in particular by private car, and in particular for the purposes of shopping and social or recreational activities. respondents indicate comfort with the idea of meeting friends or returning to shops, so authorities need to be aware of potential erosion of social distancing and appropriate covid-safe behaviour in this regard. there is still a concern about using public transport, though it has diminished noticeably since the first wave of data collection. we see that working from home continues to be an important strategy in reducing travel and pressure on constrained transport networks, and a policy measure that if carried over to a post-pandemic world, will be an important step towards a more sustainable transport future. we find that work from home has been a generally positive experience with a significant number of respondents liking to work from home moving forward, with varying degrees of employer support, at a level above those seen before covid- . thus, any investment to capitalise on current levels of work from home should be viewed as an investment in transport. • aggregate travel has increased by % since initial restrictions, but is still less than two-thirds of that which occurred prior to covid- . • motor vehicle travel rebounding more than other modes, though those who are planning a return to train and bus intended to do so strongly. • concerns about public transport are lower than initial restrictions, but still significantly higher than prior to covid- . • large increases in activity planned for shopping and social and recreation purposes, with people feeling most comfortable about meeting with friends, going to the shops and also relatively comfortable visiting restaurants. • working from home continues, though concern about safety of work environment is widely varied. • work from home has been largely positive for those who have been able to do so, and the majority of respondents would like to work in increased proportion of days from home in the future. there is good employer support for doing so. • concern about the risk of covid- to the community, to someone known to the respondents or to the respondent themselves, has decreased significantly since the initial outbreak. authorities need to be vigilant as restrictions are eased, particularly with respect to social activity. there is evidence that the desire to return to some form of personal interaction is stronger than a return to other kinds of activity. twinned with a falling perception of the risk of covid- , this could be problematic should appropriate social distancing and covid safe behaviours diminish. there may be a need to limit travel for the purposes of recreation, particularly to venues where socialising is the norm and behaviours might be conducive to the transmission of the virus. work from home may be one behaviour that lasts into the longer term, and it is clear that any action that can embed a greater degree of working from home now will be a sound investment in transport needs and priorities for the future. measures should be taken to understand how the benefits can be communicated to those less keen to continue to work from home to some degree, in a postpandemic environment. government should work with business to understand the appropriate mix of policy and incentives to encourage ongoing uptake. given that the experiences has been largely positive for many, including employers, authorities should be seeking to capitalise on that experience now, particularly as new habits are formed. by now the effects of covid- are well known and across the globe the experiences with the virus, in terms of transmission and new cases differs substantially, with the scale of the economic impact and the disruption to economic activity unprecedented outside of war and depression. australia has been somewhat successful in combatting the first wave of covid- infections through a series of regulations which were quickly implemented to halt the rise in transmissions. figure displays the number of daily new covid- cases in australia, which reached an initial peak in late march and at the time of writing this paper, the country has experienced a relatively low number of new daily infections almost exclusively restricted to what is now the largest risk factor in australia; citizens returning from abroad. while beck and hensher ( ) present analysis of data collected in the first wave of study conducted immediately after the peak of transmissions, this paper presents the findings from data collected during the period of relatively low new infections where talk is turning towards a staged relaxation of restrictions. figure and table provide an overview of the key events in the period between wave and wave , most regarding the staged relaxation of restrictions designed to control the rising spread of covid- that was observed in march. throughout the entire period, state borders remain largely closed, except for nsw and victoria which remained open throughout. two key prongs in the australian strategy for controlling covid- and resuming more normal activity, are the adoption of a tracking and tracing application (covidsafe) and a carefully staged relaxation of restrictions. the national approach to the relaxation of restrictions was announced on the th of may, based on the underlying principles of: maintaining a distance of . m from those not in the family unit; regular and thorough hygiene and sanitisation practices, staying at home if unwell, and a covidsafe plan for workplaces and premises. the plan involved three stages: ( ) allowing groups of people to be together in homes and in the community to reconnect with friends and family; ( ) slightly larger gatherings and more businesses reopening, but tight restrictions remaining on activities deemed high risk; and ( ) a commitment to reopening business and the community with minimal restrictions, but underpinned by covidsafe ways of living. each state was given the responsibility to enact the staged easing within their state, in a timeframe that best suited that jurisdiction. as can be seen, in both figure and table , most australian states had progressed towards the roll-back of restrictions as the number of new cases plateaued. since the peak of the initial outbreak, the experience in australia has been one of a steady state of low numbers of new cases, up until most recently . this staging easing of covid- restrictions has resulted in a slow increase in travel and activity in the largest economic and population centres in the country, sydney (nsw) and melbourne (vic). the aggregate data collected by the citymapper mobility index (citymapper ) is presented in figure and shows that, relative to the baseline period, mobility has been trending upward at a slightly faster rate in sydney than melbourne, and while double the amount of activity is now seen compared to early april, mobility is still less than half that measured during the baseline period ( weeks between jan th and feb nd, ). following the initial draft of this paper, it was discovered that there were serious lapses in the quarantine protocol implemented by the victorian government, linked to laxed practices of private sector guards used in hotels where returning overseas residents are quarantined. all cases in the growing community transmission in new south wales have been linked to victoria, as a result of not closing the border between the two states. likewise, the google community mobility report (google ) presented in figure (which aggregates data across australia and compares to the median value for the corresponding day of the week during the -week period jan -feb , as a baseline) shows a sustained increase in time spent at work, retail and recreation, and parks, while time at home has slowly diminished. the data shows that time at transit stations is recovering at the same rate of increase as other activities but remains lower due to the larger slump that occurred in early april. in totality these two figures seemingly indicate that australia was returning to some degree of normality given the work and retail results, though in the major capital cities travel for work might be suppressed, particularly travel on public transport. in this paper we present analysis on working from home and commuting data collected in the second wave of the ongoing travel survey into the impact of covid- . the paper, where possible, compares and contrasts aggregate results from wave and wave data collected at different points in the covid- curve, but we also introduce new insights as we focus more on working from home and changes therein. overall we attempt to continue to update policy makers and those in the transport community on the conditions surrounding travel and work as covid- transmissions patterns change, but also as the restrictions on movements and activities change in response to the shifting conditions of the pandemic. the rest of this paper is structured as follows: section two provides an overview of the sample collected for wave ; section three discusses the results of overarching analysis; section four provides a discussion of the results and the potential policy implications that arise from the result found herein; section five discusses limitations of this study and identifies areas for future research; and section six provides the conclusion. note that we limit ourselves to aggregated analysis in this paper, given the desire to share timely information and the already large number of results discussed in this work. we recognise that understanding the dynamics of changing behaviour at an individual level is crucial and as the panel nature of the data grows, ongoing work will seek to examine change and adaption at an even more disaggregate level. j o u r n a l p r e -p r o o f the second wave of the ongoing covid- travel survey was in field from the rd of may to the th of june, with data being collected in two segments. firstly, respondents from wave were approached to complete the survey to begin the panel nature of the survey with as robust a sample size as possible. the wave data comprises , observations made up of respondents who participated in wave of the survey, and an additional new recruits to supplement wave . as with wave , the online survey company pureprofile was used to sample respondents, and the survey was available across australia in order to examine the widespread impact of covid- . a summary of the wave sample is provided in table . for the purposes of this overarching analysis and to be consistent with the same headline analysis in beck and hensher ( ) , socio-demographics differences are explored based on gender, age (younger ( to , n= ); middle-age ( to , n= ); older ( or older, n= )), and household income (lower income (less than $ , , n= ); middle income ($ , to $ , , n= ) and high income (more than $ , , n= ). given that the focus of wave was to establish a panel that was as large as possible, quotas were not introduced on those completing the survey, other than ensuring representation from all states and territories. the impact of covid- is, however, sufficiently widespread that no demographic can escape the disruption caused. j o u r n a l p r e -p r o o f . results unsurprisingly, and as was the case in wave , the results from wave presented in figure in the survey mirror the aggregate findings, and generally also show a comparable rate of trip generation as that found in the weekly gps tracking project conducted in switzerland (mobis-covid ). in terms of this overall travel, we see a reported % increase in the number of household trips over the week, from wave to wave , but household travel remains significantly suppressed. in terms of changes to the current level of travel activity, the majority of respondents ( %) report that they are planning to maintain household travel at wave levels, however among the % of households who are planning change we can see a dramatic increase, with the level of planned activity among this group almost returning to that which was reported prior to covid- . with respect to trips reported in wave , younger respondents are exhibiting a significantly higher average number of household trips ( . ) than both middle-aged ( . ) and older ( . ) respondent households. the difference between middle-aged and older respondents is also significant. this travel behaviour is perhaps a function of the relative risk attitudes and the perceived and/or real threat presented by covid- to each age group. higher income ( . ) and middle income ( . ) households report significantly more average trips in wave than lower income households ( . ). there are no differences by gender for household trips reported in wave or planned in the upcoming week, nor are there differences in planned travel by age and income groups. those planning changes j o u r n a l p r e -p r o o f figure and figure show reported household travel before the outbreak of covid- , during wave and wave , and projects planned household travel for the upcoming week following wave data collection. in every instance we see a rebound in travel by mode and for every purpose. as anticipated by many, there is a strong bounce back in travel by car and in aggregate, active transport activity has returned to pre-covid- levels. general shopping has increased, and there is a slight rebound in education and childcare trips, along with general shopping. commuting and work business trips remain relatively flat, with working from home perhaps proving a more viable option than many initially thought (of course increased unemployment may also play a role in suppression commuting travel). in terms of household plans, we can see that the private motor vehicle is expected to continue the strong return to pre-covid- levels. interestingly, we also see stated intentions to return to public transport modes of buses and trains, as well as a reported spike in active transport modes of walking and cycling. with respect to travel by purpose, the projected growth in shopping (food and general), personal business, and social and recreation trips suggests that non work trips are more than returning to "normal", indeed households may even be making up for lost time with respect to these activities. this is particularly true of social and recreation activity, where the planned number of trips in the upcoming week is significantly larger on average, than the number of trips made in the wave data collection period. with respect to broad socio-demographic differences, females report an intention to use trains at a significantly higher average amount, exhibit significantly higher average trips for education and childcare purposes (both in wave and the number of future trips planned), and also plan to engage in more food shopping and social and recreational trips in the week moving forward. higher and middle-income households both report a significantly higher average number of trips made by private car than lower income households. high income households also report more train trips than middle-income and lower income households, and taxi or ride-hailing trips than lower income groups. they also plan to take more ferry trips. higher income and middle-income households report a higher average number of trips for commuting purposes than lower income, higher income groups also report more work-related business trips than households on lower incomes. higher income households also report significantly more travel for social and recreational purposes than both middle-income and lower income households. planned travel for different purposes is invariant across income groups. younger respondents report higher average household trips by private car, train, and bus during wave than both middle-aged and older respondents, as well as more active trips on average than older respondents. younger respondents are also planning significantly more travel by taxi, train, bus, and ferry than older respondents. with respect to travel for different purposes, younger respondents also report more commuting trips, trips for education and childcare, food shopping and general shopping than middle-aged and older respondents. older respondents plan on making less trips for work-related business and education and childcare than middle-aged and younger respondents, and significantly less trips for food shopping than those in the youngest age category. given the anecdotal evidence in new media sources about increased use of active travel modes (abano , landis-hanley ) and greater use of public spaces for exercise and recreation (o'sullivan ), questions were included in wave around whether or not respondents had felt they had increased or decreased use of different modes in the previous week, and how they were planning to change their use as restrictions were eased. the results of these questions are shown in figure . note that in wave questions were not asked about the relative change in active transport modes, but were added to the wave set given the anecdotal evidence from new media that active transport had increased. motor vehicle use exhibits the biggest fluctuations in usage, especially compared to the result from wave when % of respondents had decreased car use. now, however, half of respondents are using their car the same as they did the week prior, % have decreased car use relative to the previous week and % have increased usage. in terms of planned future use, in the week following data collection a small majority of respondents are planning to use their car the same amount ( %), but we start to see the number of people planning to increase car use exceed those who are planning to decrease. older respondents are less likely to increase car use than the middle-aged and younger age groups. breaking down changes in car use in a little more detail, for those respondents who said they decreased use of their car, the average reduction is % (σ = %), which is largely the same result as discovered in wave (µ = %, σ = %). for those that stated increased car use, the average increase is % (σ = %), which also mirrors wave (µ = %, σ = %). across the sample, including those who stated they use their car about the same ( % change), there is an overall average reduction in car use of . % (σ = %). these averages are invariant to gender, age, or income. in terms of the active modes, what is most striking in these figures is how reported use in wave and planned use moving forward are largely identical. with respect to walking, more respondents reported an increase in wave ( %) than a decrease ( %), with younger respondents more likely to have reported an increase. with regards to running or jogging, the number who have increased ( %) or decreased ( %) are roughly balanced, younger people again are more likely to have stated an increase in this activity and unsurprisingly older respondents are more likely to not engage in running. the number of people who reported an increase in bicycling ( %) exceeds the number who have decreased use ( %), again older respondents are less likely to engage in this activity. in terms of future use, for each of the active modes more respondents report an intention to increase their use of that activity than decrease: % vs % for walking (with younger respondents more likely to plan an increase in use); % vs % for walking (with younger respondents more likely to plan an increase in use); and % versus % for bicycling. while there is evidence that participation in these activities has increased overall, it is has not grown by a sizeable amount, though perhaps growth may be more pronounced in metropolitan areas even more so in locations where population density is high. interestingly while more respondents plan to increase their use of active modes as compared to decrease, it remains to be seen if this behaviour will eventuate or if it just an indication of good intentions. the perception that people have about the cleanliness and hygiene of public transport was also tracked in wave , and the results are shown in figure . compared to wave we have seen a large moderation in concern, with reduction in the number of people extremely concerned about these modes of transport. indeed, the average response to the concern scale in wave (µ = . ) is significantly lower than in wave (µ = . ), however average concern still remains at a level that is significantly higher than that prior to covid- (µ = . ). females are significantly more concerned about the cleanliness of public transport, as too are younger respondents relative to those in middleaged and older age categories, this last result perhaps explaining why train, bus and ferry use in this age bracket is significantly higher in wave , and planned to be higher than other age groups moving forward. the impact of covid- on the nature and availability of work continues to be profound. the government regulations designed to limit the spread of covid- , while in the process of being eased, ripple through the economy, as shown in figure a and b. only % of sample have not been impacted by government regulations, just over a quarter have been personally impacted, one in five ( %) also report someone in their household having been impacted and one-third know someone whose employment has been impacted as a result of the restrictions. those in the younger age group are more likely to have been personally impacted ( %) and/or have a household member who has been impacted ( %). respondents were also asked if their pay had been impacted by covid- measures and while the impact here is lesser than that on employment (two-thirds have not been impacted), a number of respondents are working for less income than prior to covid- . looking at the impact on households in more detail, figure a and b show the number of household members (including the respondent) who were working fulltime and part-time before covid- and during the wave data collection period. note that while these figures are in aggregate and includes respondents who are unemployed, retired or home makers, the number of households who report zero household members in fulltime employment rises from % before covid- to % in the wave data, an increase of approximately %. the impact on part-time employment thus far, has been less extreme. in terms of the number of days worked over the last week among those who were working prior to covid- , the average number of days has increased from . days in wave , to . days in wave , but remains significantly less than the average of . days, before covid- . the number of people working zero days has fallen from % in wave to % in wave . males are working more days on average in wave , and middle-aged respondents are working more on average than those in the younger age group. with respect to working from home, levels still remain well above those prior to covid- (µ = . days), with respondents spending an average of . days working from home per week., however this number is down from the wave average of . days. respondents were further asked to nominate the type of environment they normally work in, the results of which are shown in figure . the "other" category predominantly includes those who work from home, out of vehicle, or in hospitals or schools. females are more likely to work in open plan or shared space offices ( % vs. %) and retail environments ( % vs. %), whereas males are more likely to have their own office ( % vs. %). younger respondents are less likely to have their own office ( %) and more likely to work in retail environments ( %) . lower income groups are more likely to work in retail environments, indoor spaces with small teams, or outdoor spaces with small teams and less likely to work in open plan offices. as income increases, respondents are more likely to have their own office. respondents were also asked to state their level of concern about covid- given the nature of the environment in which they worked. while the average is at the middle point of the scale (µ = . σ = . ), figure shows a wide variety of views with approximately the same number of respondents exhibiting either no or slight concern as showing moderate or extreme concern; females are significantly more concerned on average. following the noted increase in working from home observed in wave , wave attempted to explore the experiences with working from home in more detail (introducing new questions) to better understand the scope of experiences, given that for many there was little time to prepare and while it may work well for some, others face barriers such as children, other household members working from home, inadequate space for working from home, and so on. with respect to the ability of a respondent to work from home, figure shows a decrease in the number of respondents whose work cannot be done from home, but an increase in the number whose work place has no plans for working from home and, unfortunately those whose work place has closed. we also observe a reduction in the number of employees who are directed to work from home, perhaps reflecting the erosion in the average number of days worked from home in the last week, discussed in the previous section. males are more likely to be employed in workplaces that have no current plans to allow working from home, and females more likely to be in workplaces that are now closed. respondents in the younger age category are more likely to be employed in a position where work cannot be completed from home. lower income groups are more likely to be in workplaces that have no plans to allow work from home, or whose workplace has closed. as income increases, it is more likely that a respondent works in a position where they are being directed to work from home. respondents were also asked how many hours of work they feel they can complete when working from home. as displayed in figure , % of the sample complete somewhere between to hours of work, with an approximate average of . hours. those on higher incomes are more likely j o u r n a l p r e -p r o o f to report a higher number of hours worked per day, when working from home. respondents were also asked to assess their level of productivity when working from home, and the sample average of . (σ = . ) indicates that in aggregate those working from home perceive little difference in productivity. indeed, almost double the number of respondents find working from home to be a lot more productive ( %) than a lot less ( %). middle-aged respondents and those on higher incomes report high levels of productivity, on average. to understand the positive and negatives of working from home, and thus obtain insight into what measures may be needed as restrictions ease in order to maintain current levels of work from home, respondents were asked to rank the benefits and challenges that they experience when doing so. the results of this task are presented in figure . with respect to the benefits, the highest ranked benefit is not having to commute followed by the creation of a more flexible work schedule. males are more likely to rank flexible work schedule as the biggest benefit as are those in the younger age bracket. older respondents are less likely to rank no commute as the biggest benefit than other age groups. with respect to the challenges of working from home, the disruption from family and children is the one most often ranked highest, but overall the ability to concentrate on work is perhaps the challenge faced by most (with the exception of older respondents who are less likely to rank this challenge as the biggest or second biggest relative to other age groups). additional questions were asked about the number of online meetings that are had and their relative effectiveness, the results of which are shown in figure . while many respondents do not have online meetings over the course of working from home ( %), among those that do the most common frequency is to per week. in terms of how productive the meetings are, in aggregate it appears that respondents find online meetings just as productive as face-to-face meetings, with those in the middle age reporting a significantly higher average productivity than other age categories. it should also be noted that there is no correlation between the number of online meetings a respondent has per week and their rating of the relative productivity of those online meetings. given the benefits and challenges experienced over the previous - months of working from home as a result of covid- , respondents were asked how much they agreed or disagreed with a series of statements related to working from home and more flexible work, the results of which are displayed in figure . overall agreement is similar across all statements, but there is more agreement (agree and strongly agree) that the appropriate balance between work and not working can be found, and that the space at home is appropriate for work. older respondents and higher income categories are more likely to agree that they have an appropriate space at home from which to work, and older respondents also are more likely to be able to find the balance between paid and unpaid work. higher and middle-income groups agree more so than low income groups that more flexible work schedules would be preferred in the future. to gauge the likelihood of working from home being a larger part of the transport mix moving forward, the final question in this set asked respondents whether working from home had been a positive experience for them. as seen in figure , overwhelmingly the experience has been positive with almost half the sample agreeing or strongly agreeing that this is the case, with % of agreement overall. as the work from home experience becomes more embedded and new routines are formed, it is also likely that the experience will improve. interestingly, females report a significantly higher average level of agreement, as do those on higher incomes. younger respondents report significantly less positive experience than other age categories. to build further on the likelihood of travel and commuting being disrupted by an increased take up of working from home, a series of questions about work in the future were asked. figure shows the number of days respondents would like to work moving forward as restrictions ease. interestingly the number of days worked moving forward, while higher than now, is less than the level of employment prior to covid- . this may be a function of people overall wanting to work less, but also being somewhat tentative when thinking about how much work might be available as we move forward. the average number of days is invariant across gender, age, and incomes. the future of working from home, shown in figure , follows a similar pattern to the numbers of days worked: the levels of working from home are lower than they are now, but respondents would like to work from home more than they did before covid- . younger and middle-age respondents would, on average, like to work more days from home as restrictions ease, than older respondents. to accommodate the different number of days worked by respondents, the number of days worked from home was converted to a proportion of the total number of days worked and is shown in figure . what is revealed in this graph is the interesting finding that right now, working from home is an all or nothing proposition, with the numbers working % to % of their days at home being very small, and the number working % of more having spiked to % during wave . however, as restrictions ease, we see a desire for the extreme levels of work from home to decrease, but a small albeit sustained rise in the number seeking to work somewhere between % to % from home. interestingly, there is a significant positive correlation between the proportion of time spent working from home now and the proportion of time someone would like to work from home in the future. an important component of increased work from home into the future is the ongoing support of companies and employers. as shown in figure , overall, there is an even split between workplaces that have had conversations about working from home and those that have not, which holds across employees, managers and employers. figure shows the perspective of employees about how they think their employer might support working from home. respondents who are managers are asked what they think the position of the company might be as well, and both managers and employers are asked to provide their personal view on what would be appropriate. the differences observed in the position that work cannot be done from home is likely a function of the nature of the industry employees versus employers are in, but also that managers and employers are able to take a more overarching view of the work done in the company rather than an individual function which would be the focus of the employee. nonetheless, support for some balance between working from home and the office is markedly higher among managers and employers than employees themselves. older employees are less likely to state that their employer would prefer a return to the office, middle-aged employers are less likely to be in roles where work cannot be completed from home and are more likely to state that their employer would support work from home as often as desired and that a balance would be support, relative to other age groups. in terms of the personal views of the employer or manager, as income increases there is a lower likelihood of stating the work of employers cannot be done at home; those on higher incomes are more likely to support working from home as often as desired and along with those on middle incomes, also support the balance of working from home and the office. it should be noted the majority of managers can either approve both the ability to work from home and the number of days ( %); or approve working from home but not the number of days ( %). managers and employers were also asked what number of days they felt was appropriate for an employee to work from home and why. figure shows the diversity of opinion surrounding the number of days, either at the extreme of no work (zero days = %) or all work (five or more days = %) being done from home, or some balance around two to three days. when asked to explain the reason for the number of days given, those arguing for high levels of work from home did so because it works, it minimises office space or they believe staff like it. those advocating for a balance tended to cite reasons around maintaining collegiality, keeping connections, generating value through interaction, the need for face to face meetings, and mentoring. lastly, in exploring working from home, managers and employers were asked to rate the productivity of staff whilst working from home. additionally, employees were also asked to give their perspective on the productivity of other staff for comparative purposes. plotted on figure are the result of this question, as well as the measure of productivity respondents gave themselves. the general pattern of productivity scores is generally similar across three measures, but interestingly employees assign a significantly lower average score to other staff than they assign themselves. though this is the only difference on average, managers and employers are more inclined to believe that productivity is about the same than either employees, and the rating respondents give themselves, but respondents also rate their own productivity marginally higher than their employer or other employees might. overall, the results indicate that importantly, the majority of employers and managers believe staff have been as productive working from home as they would be at the office, if not slightly more so. data was collected on employment as per the australian and new zealand standard classification of occupations (anzsco), and there are significant variations in the workplace policy with regards to working from home, as can be seen in figure . machine operators and drivers, community and personal service workers and labourers work in places where there are either no plans to work from home, or occupations where the work cannot be done from home. on the other hand, a large number of managers and professionals are being given the choice to work from home or being directed to do so. the workplace policy clearly translates to differences in the incidence of working from home observed in the last week, as shown in figure . machine operators and drivers, community and personal service workers and labourers are less able to do work from work, whereas clerical workers, professionals and managers have a greater propensity to do so. while different occupations have differing ability to work from home, and thus different preferences with regard to how many days they would like to work from home moving forward (figure ), it is interesting to also note that in every occupation there are some respondents who like to do some of their jobs from home. given this desire, it might be possible for employers to work together with employees to apportion some work to be done at home where feasible. similar patterns also emerge based on the type of work environment, with the work place policy differing (see figure ), the number of days worked from home in aggregate differing (figure ) , and the number of days respondents would like to work from home moving forward also differing by work environment (figure ). again, while some employees may like to work from home, it may not be feasible, but where some component of the work could be done from home for some respondents, employers could think innovatively about how they assign work and the location in which that work is done. though not directly related to travel or activity, the australian government has developed the covidsafe track and tracing mobile application, designed to identify and contact people who may have been exposed to covid- . the application uses bluetooth to look for other devices that have the app installed. it takes a note of a contact when it occurs, through a digital handshake. if a person tests positive for covid- , a state or territory health official will ask that individual (or parent, guardian, or carer) to consent to uploading the digital handshake information. this type of application is not too dissimilar to gps tracking applications widely used in travel behaviour research. the survey asked respondents if they had downloaded the application, and the results are shown in figure . as can be seen, while % of the sample are using the application, more than half have not downloaded, or are not using it. owners of apple mobiles are more likely to be using ( %) it than those who own android based phones ( %), younger respondents are less likely to be using it ( %), compared to those in the middle-age category ( %) who in turn are less likely to be using it than older respondents ( % have downloaded and are using). lower income groups are more likely to have not downloaded the application ( %), compared to middle ( %) and higher income groups ( % have not downloaded it). in terms of reasons given for not downloading the application ( figure , the leading reason is that respondents don't trust the government to protect the data (less prevalent among older respondents), and don't want to be tracked in this way (particularly true for middle aged respondents). as talk turned towards the easing of restrictions, one moderating factor on the propensity for respondents to begin to vary their travel behaviour would be how confident they would feel engaging in different types of activities. to that end, respondents were asked given the current conditions, how comfortable ( = very uncomfortable to = very comfortable) would they feel about completing each of the activities shown in figure (error bars reflect the % confidence interval). the darker bars represent an activity which a higher proportion of respondents stated was a regular activity interrupted by covid- (beck and hensher ). going to the doctors, meeting with friends, and going to the shops are the three activities that respondents feel significantly more comfortable in completing, followed by schooling or childcare activities, in turn followed by visiting restaurants. the level of comfort for the remained activities sit largely at the neutral point, with attending music events and gyms being the activities respondents would feel least comfortable completing. overall men generally exhibit a higher degree of confidence, being significantly more comfortable with going to the doctors, going to shops, visiting restaurants, attending work functions, playing organised sport, watching professional sport, going to pubs or bars, watching live entertainment, gyms or exercise groups, and attending music events. middle income groups are more comfortable going to the doctor. older respondents are more comfortable going to the shops than other age groups, but less comfortable visiting restaurants, going to the movies, going to pubs or bars, gyms or exercise groups, going to doctors, watching professional sport, attending music events, watching live entertainment, schooling or childcare, playing organised sport, and attending work functions. younger respondents are more comfortable than other age groups with respect to going to pubs or bars, gyms, or exercise groups, watching professional sport, attending music events, and watching live entertainment. the attitudes of respondents towards covid- and responses by government, business and the general public were re-examined, with respondents again showing significant agreement ( = strongly disagree to = strongly agree) with all statements listed in figure , with the exception of the idea of going to work from time to time to avoid social isolation. on average, there is significantly more agreement with the statements that covid- is a serious public health concern that requires drastic measures and will affect travel. trust in the response of government both now and in the future remains significant . overall, the results mirror those from wave , with a small erosion in the number of people who agree that people can be trusted to respond in the future (overall agreement falling from % to %), and a large fall in the number who agree that they will go to work from time to time to avoid social isolation (falling from % in wave to % overall agreement in wave ). females exhibit significantly higher agreement that covid- is a serious public health concern, that it requires drastic measures, that the state government response has been appropriate, and that business can be trusted to respond in the future. older respondents agree with all statements significantly more so than younger respondents. respondents were also asked their perception of the risk covid- presented to health and the economy (see figure ). the pattern is identical to wave , in that agreement is significantly stronger for the statement that covid- is a risk to the economy, followed by a risk to someone the questions regarding attitude towards government actions being appropriate and trust in their actions in the future are generic, and not attached to the easing or tightening of restrictions at any point in time, rather the overall appropriateness as felt by the respondent. agree strongly agree neither j o u r n a l p r e -p r o o f known to the respondent, a risk to the general public and lastly a risk to themselves. while this pattern is the same, the average strength of agreement is significantly lower for each statement in wave than it was in wave . as with wave , in wave females agree significantly more strongly that covid- is a risk to the general public and someone they know, but in wave females now agree more strongly than men that covid- is a risk to their own health. lower income groups exhibit significantly less agreement with the risk of covid- to themselves, than those respondents who are in middle or higherincome brackets. with respect to age, younger respondents have a significantly lower perception of the risk covid- presents to their health, and respondents in the oldest age bracket view covid- as a significantly higher risk to the economy than younger or middle-aged respondents. overall, the results reflect what is happening in australia as a period of low new covid- cases grows, and restrictions around movement starts to ease. we see an uptake in private vehicle use, as anticipated and people are returning to public transport in a much more measured fashion. while concern about public transport hygiene has diminished, it remains significantly higher than prior to covid- . it is our suspicion that confidence might diminish again rather than continue to improve, as more transport users return to the system and individuals become more wary of crowding. it is even more essential that transport authorities continue with demonstrable efforts of cleaning and sanitation to assuage community concern, as before we continue to advocate that it may need to be a requirement to wear a mask while on mass transit to help protect against community transmission, but also make public transport a mode that is more appealing as the number of users start to increase. in the sydney context, transport authorities have used signs/stickers to indicate where people may sit on buses and trains to help enforce social distancing, but perhaps authorities should also (or instead) consider labels to indicate where passengers cannot sit or stand, as these stickers are more easily seen (i.e., are not covered by people sitting on them) and perhaps are a better visual or behaviour que that close physical proximity is still not allowed. with regards to social distancing and travel activity, the data shows that travel for the purpose of social and recreational activities is returning more strongly than other activities, and that these were the activities most interrupted by covid- . people express comfort in meeting with friends and social activity is planned to return strongly. as restrictions are slowly rolled back, governments need to think carefully about how they allow the resumption of activities, which activities are indeed allowed, while messaging very strongly that the need for social distancing has not eased and that even close friends could be a source of transmission, or indeed you may be responsible for giving covid- to those you are eager to reconnect with. authorities need clear and concise messaging, consistently communicated and at most extreme even the adoption of a uniform campaign across the country, about the need to maintain social distancing and think carefully about the difference between essential and non-essential travel. lastly, we see some mobility differences across age groups, but also that younger respondents are more comfortable with more social activities than older respondents and exhibit a lower perception of the risk of covid- to their own health. efforts should be made to ensure that those who are in this age group are aware, not only of the risk posed to them, but to the wider community and potentially their loved ones, should they "lower their guard" with respect to appropriate social distancing and the new behaviours required during the pandemic. our research continues to explore the prevalence of and experiences with working from home. it is an important mechanism to alleviate the burden on the transport network in the form of increased potential congestion due to strong uptake of private motor vehicle and reduced capacity on transit systems due to physical distancing. indeed, if positive experiences and lessons learnt can be carried forward into a post-pandemic world, it will likely be the largest tool in the transport tool kit to reduce persistent congestion. the results herein suggest that the work from home experience is lumpy and more predominantly available to middle and high-income groups. we see that the extent of working from home remains well above the pre-covid- levels, but the degree to which people work from home has diminished from the degree seen in wave following the initial imposition of restrictions. many respondents state that their work cannot be done from home, and while this may be true, there are many who have not yet had a conversation with their employer about the ability to work from home. given the dividends to the transport network, more conversations about working from home, or the structuring of work so that some component can be completed from home should be encouraged by governments. there are dividends for employers in this regard as well. many employees stated that they work in open plan offices that would still require appropriate social distancing measures, and environments with hard surfaces that would require regular cleaning. working from home will enable this to be done more easily and more thoroughly, given that concern about returning to the work environment is split, with a lack of concern with work and trust in some colleagues being misplaced, making it early in the process of learning to live with covid- . should a business become a hub of transmission, the consequences could be devastating. overall, for those engaged in working from home the experience has been largely positive, with employees and employers alike finding productivity to be more or less the same than if the work was j o u r n a l p r e -p r o o f completed in the more traditional arrangement. indeed, our results suggest that it may be possible that employees are understating the degree to which their employer would support some work from home, with many employers suggesting that a balance between working from home and working at the office would be supported. in terms of that experience, the biggest challenges have been interruptions from family and children, and an inability to concentrate on work. as restrictions ease, however, and children go back to school or families begin to resume normal routines, distractions in the home will likely diminish over time. governments should look to support research into how the work from home experience can be improved, and business should look to guide staff in how to apportion focus and concentration over the course of a working day, and equally respect the boundaries between home and work. the biggest benefits of working from home nominated by respondents, are not having to commute and the creation of a more flexible work schedule. these benefits are a positive for transport authorities seeking to solve a congestion problem or encourage peak spreading through the generation of flexible work, and indeed the implications on longer term investment priorities. in totality these are positive initial signs that working from home will be a bigger part of the mix moving forward, and as the work from home experience becomes more embedded and new routines are formed, it is also likely that the experience will improve. while some countries have no overt national response to covid- , australia has pursued a suppression strategy where activities deemed high risk have been curtailed, especially in the main environments that encouraged large groups of people together indoors (hotels, pubs, clubs, gyms, restaurants, religious gatherings), whereas other economies such as new zealand have opted for elimination, with a large number of restrictions on travel and activity (for example, all schools were closed and all non-essential businesses, including large retailers, were shut, cafes and restaurants were shut and not allowed to provide takeaway). initially the suppression strategy pursued by australia was relatively successful in turning around the rate of new cases, and as a result the restrictions were slowly lifted, but in turn we have also seen a rise in the number of new cases. travel patterns are the key risk factor in the transmission of covid- ; the virus can only move if people move. first and foremost, other countries need to eliminate movement in areas or groups where the risk of covid- is high. in australia, this was not done well enough in the context of hotel quarantine in victoria, where the use of casually employed untrained security guards to ensure quarantine failed. it is also likely that these casual security guards, working many jobs not just in quarantine hotels, spread the disease across the city. the same issue occurred with aged care homes with rotated casual staff between sites. jurisdictions will likely need to move swiftly to contain travel from covid- hotspots and err on the side of caution in order avoid mass community transmissions. it is also likely that, with media reports of the relative success of australia in combatting covid- , risk perceptions dropped as seen in this research, and people who became excited about a return to interrupted social activities, may have been less cognisant of the behaviours that are no longer appropriate when combatting a pandemic. indeed, pandemic response fatigue is also something that may occur in a longer attempt at suppression, and this might need to be weighed against the merit of short and sharper responses. more research is needed here, but other nations should resist the urge to lift any restrictions on movement and gatherings too soon. with regards to working from home, australia saw a rather swift and widespread adoption of working from home that has thus far persisted even as restrictions have eased. this has meant that traffic congestion and crowding on public transport has not been as bad as could have otherwise been the case. government at all levels urged companies to support working from home wherever possible, and it seems that this has been supported by the majority of businesses. other nations may be able to see that, while not perfect for all, working from home is a viable option and that generally staff have been just as productive at home as from the typical work environment. much like argued in this paper for australia, other countries should also see that support of and investment in work from home strategies is a significant investment in transportation and ultimately sustainability. clearly experiences with travel and work in the context of covid- are still very much nascent stages and will be for some time. behaviours and attitudes are still in a great state of flux and it would not be possible for research conducted now to be definitive about what the future might look like. however, insights are needed and research, while beginning to be available, remains limited. it is important that ongoing, timely and consistent research be conducted, and will be beneficial in helping to identify trends and potential for positive intervention before "bad habits" are formed. we will continue to track the changing nature of travel and activity in the australian context. there is also great scope for work to bring together and synthesise the experiences that are being had around the world. each jurisdiction will no doubt benefit from learning about the experiences of others. preliminary research by currie et al. ( ) indicates that working from home may indeed be the only long term change that will emerge post pandemic (though the study also acknowledges that findings are also at an early stage much like any research conducted now). it is therefore important to examine the dynamics of this experience and those associated with increased work flexibility. one such allied policy response is peak spreading or staggered work hours, which may be as equally impactful a response to change transport demand and capacity, particularly for those unable to work from home. future research will look at the degree to which people may be able or willing to stagger working times, but there are unintended consequences of peak spreading such as decreased use of public transport, that also need to be examined (daniels and mulley ) . more research is needed on the prevalence of active transport. our survey did not detect any strong trends in the aggregate, but in this paper we only present overarching results of analysis, which are already extensive. the concept of working from home, mixed with active travel and places in which travel activity occurs given a rise in working from home continues to be important. if people increase working from home, then there are likely to be significant implications for more localised transport networks, rather perhaps more profound than those arterial links designed to move large numbers of people between residential and employment centres. additionally, australia was approaching the end of autumn during wave and winter had begun during wave . colder climates may be a reason why active transport was found to be less prevalent than media would suggest, in this study. however, using sydney as a proxy, the average temperature during wave was degrees (σ = . ) and daily rainfall . mm (σ = . ), compared to degrees (σ = . ) and . mm of rain per day (σ = . ). wave was conducted during a colder period, but only marginally so. likewise, any planned changes in activity could be attributable to likely improved weather, those changes in travel were asked for the next week (next days) at the time at which the respondent completed the survey. it is unlikely that their perception of the weather would change too significantly in that time frame when winter had only just started. lastly, winters are also relatively mild in australia compared to other parts of the world, so activity pattern changes may be more pronounced in warmer months, or in countries where the climate is more extreme. localised amenity may start to become increasingly more important moving forward and there may be more pressure on parking in places where there were previously few concerns. local streets may require more maintenance or will degrade more quickly with increased local traffic, more formalised organisation of traffic may be required on local roads than is currently the case, and local parks may become more important to wellbeing. politicians in australia are already acknowledging that the pandemic had underscored the importance of public space to people's mental, physical and social wellbeing, having launched an ideas competition to reimagine public spaces (o'sullivan ). indeed, in the very long term, covid- may change the way in which individuals make decisions about where they live, if working from home grows. reduced friction from the disutility of commuting (even if a reduced number of days) may mean that people are more able to prioritise the utility of living near social contacts (guidon et al. ). in the very long term, working from home may be an opportunity for regional centres (with cheaper housing and potentially greater local amenity) to capture new residents and new industry, as people may have greater freedom to choose where to live, or in the future need to travel to an urban location significantly less often. these issues are unclear, but research could be devoted to the implications of what we are observing now, desirably through a longitudinal panel survey. while looking at household travel in terms of repeated or more regular trips, this paper does not examine the impact on tourism or holiday travel. the impact to international travel and both the domestic and international aviation markets are well known and easily observed. what is less well known are future intentions around travel and how preferences towards international and domestic travel may change. in , tourism australia ( ) reported that tourism contributed $ billion towards gross domestic product and makes up approximately % of the australian workforce. changes to travel choices with respect to tourism will be important to understand, particularly with respect to generating greater domestic tourism when it is allowed. while these changes may occur, the preliminary finding by currie et al. ( ) that people initially state that very little may change long-term as a result of covid- , adds to the call in this paper for timely and ongoing research. much like with dealing with the pandemic itself, often a fast response is needed rather than one which is considered but loses efficacy due to its untimely nature. it has been long known in transport that humans are habitual (hensher , goodwin , banister , verplanken et al. , aarts and dijksterhuis and cognitive dissonance is common (de vosa and singleton ), and these habits are powerful and hard to change (bamberg et al. , walker et al. . any invention needs to be targeted and dynamic to the changes being experienced now, or it is likely that momentum will be lost. on a positive note, research in other fields suggest that the formation of new habits is possible with the appropriate interventions gardner , mergelsberg et al. ) , and reinforcement of positive attitudes (judah et al. ) . interestingly lally et al ( ) posit that habit formation takes an average of days, a point at which we are now approaching with regards to work and travel with covid- . will new transport and work habits take longer, and are "desirable" habits being formed? in may , the world conference on transport research society released a covid- task force with five recommendations for policy makers who are responsible for deciding when to end the covid- lockdown period (wctrs ). they discussed issues surrounding the timing of restriction j o u r n a l p r e -p r o o f relaxation, notably that influential decision makers would typically advocate for a shorter lockdown duration than is socially optimal due to the costs of the virus being spread being an external cost that may be discounted. they also noted a concern around increased private vehicle dependence, with priority investment being needed in transit systems to allow for proper social distancing and cleanliness along with an increased focus on active transportation modes. these recommendations, similar to those found in beck and hensher ( ) , are worth highlighting in the context of the results outlined in this paper and the discussion thereof. human beings are inherently social creatures and it is not surprising that social activities are planned to rebound given the widespread suppression witnessed during wave of this ongoing study. however, this does represent a known danger for increased community transmissions. younger people, who show greater propensity to travel, are also more comfortable with interaction in more dense social environments such as pubs and clubs, gyms and exercise and live events. authorities need to remain vigilant and carefully consider the risk of opening too soon (as is occurring with a spike or second wave in a growing number of locations), against the benefit of increased activity (which may end up being only for the short term). as the lockdown is ended, it is likely that governments will need to act quickly and decisively to quell any increase in transmission, and resist the urge to discount short-term activity over the potential impact of long-term disruption due to a re-emergence. as can be seen in the first figure presented in this paper, the risk of an increase in new covid- cases is on the rise and governments and authorities need to be alert. if the policy is the desire to return to social activity is strong, how will that translate to the behaviours that are designed to reduce the risk of transmission? will fatigue or habit erode social distancing and if so, what measures can be deployed to counter-act a lack of community vigilance? this is particularly important for the transport network that moves not only people and freight, but potentially the virus. with regards to the intervention of covid- strategies on transport in the longer term, it is clear that working from home should be viewed as a transport investment and should be encouraged with appropriate spending and support (i.e., investment in facilitating and tax breaks for individual uptake). as highlighted by wctrs; "this is clearly a unique and rare opportunity for policy makers and transport researchers to work together and seize the momentum to devise new policies in order to change our everyday living and choices toward more environmentally sustainable life and work". j o u r n a l p r e -p r o o f the automatic activation of goal-directed behaviour: the case of travel habit bike sales in anz skyrocket during covid- lockdown choice of travel mode in the theory of planned behavior: the roles of past behavior, habit, and reasoned action the influence of habit formation on modal choice -a heuristic model insights into the impact of covid- on household travel, work, activities and shopping in australia -the early days under restrictions citymapper mobility index smart public transport lab webinar the paradox of public transport peak spreading: universities and travel demand management travel and cognitive dissonance habit and hysteresis in mode choice google covid- community mobility reports the social aspect of residential location choice: on the trade-off between proximity to social contacts and commuting perception and commuter mode choice: an hypothesis promoting habit formation how are habits formed: modelling habit formation in the real world bicycles are the new toilet paper': bike sales boom as coronavirus lockdown residents crave exercise an intervention designed to investigate habit formation in a novel health behaviour untapped ideas': popularity of parks during covid sparks public space revolution attitude versus general habit: antecedents of travel mode choice old habits die hard: travel habit formation and decay during an office relocation recommendations on covid- policy decisions we thank the university of sydney business school for its financial support in funding the collection of wave data. the comments of two referees have materially improved the paper. we thank the university of sydney business school for its financial support in funding the collection of wave data. the comments of two referees have materially improved the paper. . the paper reports the findings from a the first two waves of a survey to identify the changing patterns in travel activity of australian residents as a result of the stage covid- restrictions and subsequent relaxations imposed in australia. . aggregate travel has increased by % since initial restrictions, but is still less than twothirds of that which occurred prior to covid- . . motor vehicle travel rebounding more than other modes, though those who are planning a return to train and bus intended to do so strongly. . concerns about public transport are lower than initial restrictions, but still significantly higher than prior to covid- . . large increases in activity planned for shopping and social and recreation purposes, with people feeling most comfortable about meeting with friends, going to the shops and also relatively comfortable visiting restaurants. . working from home continues, though concern about safety of work environment is widely varied. . work from home has been largely positive for those who have been able to do so, and the majority of respondents would like to work in increased proportion of days from home in the future. there is good employer support for doing so. . concern about the risk of covid- to the community, to someone known to the respondents or to the respondent themselves, has decreased significantly since the initial outbreak j o u r n a l p r e -p r o o f this paper is a revised version of a paper not submitted to any other journal.david hensher and matthew beck august j o u r n a l p r e -p r o o f key: cord- - q nxte authors: bouza, emilio; brenes, francisco josé; domingo, javier díez; bouza, josé maría eiros; gonzález, josé; gracia, diego; gonzález, ricardo juárez; muñoz, patricia; torregrossa, roberto petidier; casado, josé manuel ribera; cordero, primitivo ramos; rovira, eduardo rodríguez; torralba, maría eva sáez; rexach, josé antonio serra; garcía, javier tovar; bravo, carlos verdejo; palomo, esteban title: the situation of infection in the elderly in spain: a multidisciplinary opinion document date: - - journal: rev esp quimioter doi: . /req/ . sha: doc_id: cord_uid: q nxte infection in the elderly is a huge issue whose treatment usually has partial and specific approaches. it is, moreover, one of the areas where intervention can have the most success in improving the quality of life of older patients. in an attempt to give the widest possible focus to this issue, the health sciences foundation has convened experts from different areas to produce this position paper on infection in the elderly, so as to compare the opinions of expert doctors and nurses, pharmacists, journalists, representatives of elderly associations and concluding with the ethical aspects raised by the issue. the format is that of discussion of a series of pre-formulated questions that were discussed by all those present. we begin by discussing the concept of the elderly, the reasons for their predisposition to infection, the most frequent infections and their causes, and the workload and economic burden they place on society. we also considered whether we had the data to estimate the proportion of these infections that could be reduced by specific programmes, including vaccination programmes. in this context, the limited presence of this issue in the media, the position of scientific societies and patient associations on the issue and the ethical aspects raised by all this were discussed. authors for their corrections and amendments. the final document has been reviewed by all the authors. we will now review the questions posed, the arguments made and the conclusion reached for each one. what do we mean when we talk about the elderly? how many are there in spain? how many will there be in the near future? presentation: the who publishes reports on ageing and health, or old age and its consequences, on a regular basis, at least since the 's. cited here are a few more. we reproduce a paragraph in full [ , ] "today, for the first time in history, most people can aspire to live beyond the age of . in low and middle-income countries, this is largely due to the significant reduction in mortality in the early stages of life, especially during childbirth and infancy, and in mortality from infectious diseases. in high-income countries, the sustained increase in life expectancy today is mainly due to the decline in mortality among older people". the report focuses on a redefinition of healthy ageing based on the notion of functional capacity: the combination of the individual's intrinsic capacity, relevant environmental characteristics and the interactions between the individual and these characteristics. in spain, according to data from the national institute of statistics [ ] , . % of the population is currently over . that's about . million people. if we focus on those over , they currently account for % of the total population (about . million). forecasts for put the number of people over years old at million ( . % of the population) and those over at . million ( . % of the population). thus, between and , the number of people over will have increased by a factor of (from . to million), and the percentage will have increased by a factor of (from . to . %), while the number of people over will have increased by a factor of (from , to . million) and the percentage will have increased by a factor of (from . to . per %). once the figures have been established, it is necessary to clarify that, according to the dictionary of the royal spanish academy of language (drael), "old" is "that person of age, commonly one who has turned ". however, age is a purely theoretical value to distinguish a person as "old" or "elderly". taking the age of as the threshold for the onset of old age dates back to the late th century, when less than % of those born reached that age. today, more than % of people reach the age of , so this age limit is shifting towards older ages. nowadays the concept of "old" is more related to "function" than to age. thus, the drael defines health as "that state in which the organic being normally exercises all its functions". therefore, one of the most relevant aspects in considering a person "old" is that they need help to carry out the activities of daily life (bathing, dressing, feeding, moving, etc.). we can find totally independent people in their 's and others with a high degree of dependency in their 's. formato es el de la discusión de una serie de preguntas preformuladas que fueron discutidas entre todos los presentes. empezamos discutiendo el concepto de "anciano", las razones de la predisposición a la infección, las infecciones más frecuentes y sus causas, y la carga laboral y económica que suponen para la sociedad. también preguntamos si teníamos datos para estimar la proporción de estas infecciones que podrían ser reducidas por programas específicos, incluyendo programas de vacunación. en este contexto, se discutió la baja presencia de este problema en los medios de comunicación, la posición de las asociaciones científicas y de pacientes sobre el problema y los aspectos éticos que todo esto plantea. the ageing of the population in more developed societies is an incontrovertible fact. in the face of the indisputable success in achieving a longer life for a large proportion of the population, questions arise as to the viability of social protection systems. by , over % of the population will be classed as elderly and their quality of life will depend, to a large extent, on avoiding preventable diseases such as infectious diseases. it is a well-known fact that the elderly constitutes a risk group for distinct types of infectious diseases, whose diagnosis and treatment are hindered by several factors. around this fundamental fact, however, we find a lack of answers to simple questions about the size of the problem, its epidemiology, the capacity of the social response to it and the need to plan useful preventive measures to minimise risk and reduce costs. for this reason, the health sciences foundation, which has prevention as one of its main objectives, has organised a discussion and opinion meeting on the infectious diseases situation in the elderly in spain, aiming to answer a series of questions accepted by all the participants. greater difficulty in eliminating secretions. in the digestive tract it is common to find diverticuli in the mucosa that act as microorganism reservoirs. also, losses in secretory function with a tendency to gastric achlorhydria, but, above all, motor function which at oesophageal level, can favour aspiration phenomena. in the urogenital system there are usually alterations arising from pregnancy, childbirth, previous surgeries and local manipulations that make the free flow of urine difficult. in this vein, it is worth adding the frequency of subjecting the elderly to diagnostic or therapeutic examinations that may favour infections. in addition to the deterioration of mechanical barriers, there are losses in non-specific defence mechanisms. these include limitation to increase blood flow and vascular permeability at the infection entry points. the ability to mobilise polymorphonuclear leukocytes rapidly and the agility of phagocyte function is also impaired. chemotactic capacity decreases from the age of , as does the capacity for the intracellular destruction of microorganisms. ageing is associated with a chronic, progressive, nonspecific, low-level pro-inflammatory state, for which the english literature has coined the term "inflammageing", which favours an environment conducive to infection and further limits the possibilities of an effective response to it. the deterioration of adaptive immunity ("immunosenescence") associated with the ageing process has been known for years and affects both innate and acquired immunity [ ] [ ] [ ] . immunosenescence includes qualitative losses in t-lymphocyte subpopulations with decreased activity of cd- helpers, cytotoxic cd- s and a limitation in generating t-cell growth factor. ageing determines a tendency to invert the cd /cd t-cell ratio. the number of dendritic cells decreases with age and the response of nk cells to stimulating cytokines is limited. it also increases the activity of cd- suppressors. b-lymphocytes are limited in their ability to produce antibodies and to respond to external antigens. furthermore, there is an increase in the production of autoantibodies and circulating immune complexes. a third group of factors that add to the microorganisms and the individual are environmental and social factors, such as hygiene neglect, poverty, isolation and a sedentary lifestyle. the fact of living in nursing homes and the increase in hospitalisations favours an insufficiently quantified environmental exposure [ ] . there are multiple factors that explain the higher incidence of infections in the elderly. the clearest are those that have to do with alterations of the defensive barrier mechanisms. immunosenescence is a complex concept involving various alterations in the immunity of the elderly. what are the main clinical syndromes of infection in the elderly? the frequency and even the aetiology of infections af-therefore, the "elderly" is an enormously heterogeneous group in aspects such as the prevalence of chronic diseases (ischaemic heart disease, hypertension, diabetes, copd, etc), the need for consumption of drugs and the existence or nonexistence of physical, mental (dementia, depression) and social (loneliness, isolation, poverty) problems. conclusion: -the definition of elderly is artificial and refers to any person over a certain age (which can be set at , or older) who has serious limitations in the exercise of their physical, mental or social functions. -in our society, currently, almost % of the population would meet a definition of elderly based exclusively on the criterion of age, but it is estimated that, with this criterion, the percentage in spain will be greater than % by the year . the changes that take place throughout the ageing process favour the existence of infections. the simplest explanation is that with age the numerator of the aggression/defence equation increases (greater arrival of microorganisms that are also more virulent) and the denominator decreases (less defence capacity on the part of the organism). we can therefore divide the causes of the elderly person's predisposition to infection into those that depend on the microorganisms and those that depend on the host's defence mechanisms. there is no evidence that the microbiota of the elderly is quantitatively different from that of younger populations, nor necessarily more aggressive. however, it is an incontestable fact that previous infections, antimicrobial treatments, the greater ease of microorganism acquisition and living in proximity to other elderly people, can predispose the elderly to colonization and subsequent infection by multi-resistant microorganisms, with the presence of "superinfections", with a worse response to antimicrobials and increased resistance to them. in terms of host defence mechanisms, there are many factors that make the elderly more labile. mechanical barriers, for example, are the first element of defence, but they deteriorate progressively throughout the ageing process, facilitating the entry of microorganisms. the skin and mucous membranes experience physiological losses and often also those resulting from local or systemic diseases. the most important changes are: thinning, with loss of epithelial and mucosal cells, worse hydration and vascularization, loss of elasticity, decrease in mucous gland secretions of antimicrobial peptides, worse healing, loss of cellular macrophages in the skin (langerhans cells) and immobility with increased local pressure in certain areas. in the respiratory system, there is a decrease in the number of cilia and a slowing down of their activity, a reduction of alveolar macrophages, a decrease of the cough reflex and pend on their situation. in independent elderly people, the most common infections are respiratory conditions caused by viruses or bacteria prevalent in the community, urinary tract infections and intra-abdominal infections. in contrast, in institutionalised elderly people, bladder catheter-related utis, aspiration pneumonias, skin and soft tissue infections, and infections of the gastrointestinal tract predominate. which microorganisms are most common? how does the problem of multi-resistance impact on the elderly? presentation: it is important to remember that infections in the elderly may be caused by a greater variety of microorganisms than in the younger population, so it is essential to obtain samples for culture before administering empirical antimicrobial treatment [ ] . thus, for example, while the vast majority of utis in young patients are caused by e. coli, in the elderly their relative importance is less. in the case of pneumonia, there is a higher incidence of gram-negative bacilli (gnb) and as far as meningitis is concerned, they are rarely of viral aetiology, while we must consider gnb and listeria monocytogenes. in a spanish study, including elderly patients (mean age . years), with utis, the most frequently isolated microorganisms were e. coli, ( %), enterococcus faecalis ( %), klebsiella pneumoniae ( %) and pseudomonas aeruginosa ( %). in up to % of cases, more than one microorganism was isolated in the urine. the frequency of bacteraemia was higher with e. coli and lower with e. faecalis and p. aeruginosa and bacteraemia was not associated with a worse prognosis [ ] . the frequency of multi-resistance increases with age and comorbidity. in this spanish study, the proportion of extended-spectrum beta-lactamase (esbl) producing e. coli and k. pneumoniae isolates was . % and . %, respectively. in the previously mentioned study of patients attending the emergency department, the elderly accumulated more risk factors for multi-resistance (p < . ) and suffered from septic syndrome more frequently (p < . ) [ ] . there are few studies that analyse the overall aetiology of respiratory infections in older patients, and most work focuses on describing specific populations or groups of pathogens. the aetiological affiliation rate of respiratory infections in the elderly is very low (< %), and this is due, among other things, to the difficulty many patients have in producing sputum and to the high frequency of empirical treatment [ ] . if we analyse the aetiology of cap, the most frequent pathogen is s. pneumoniae ( - %), followed by h. influenzae ( - %), respiratory viruses ( - %), legionella spp.( - %) and gnb ( - %) . it is also necessary to remember the importance of viral pathogens in this population, since the prescription rate of unnecessary antimicrobials is very high in them ( % of the elderly with viral symptoms) [ ] . in a study conducted in china, in sentinel hospitals, it was observed that . % of elderly patients with respiratory infection had a viral aetiology ( . % among extra-hospital infections and . % among fecting the elderly vary depending on the clinical environment (home, nursing home, hospital) and the functional status of the patient. in older, independent and healthy people, respiratory conditions caused by viruses or bacteria prevalent in the community, urinary tract infections (utis), whether catheter-related or not, and intra-abdominal infections (cholecystitis, diverticulitis) are common. in contrast, in institutionalised elderly people, utis related to the bladder catheter, aspiration pneumonia, skin and soft tissue infections and those of the gastro-intestinal tract (git) predominate. in hospitalised elderly people we have to consider nosocomial pneumonia, intravascular catheter associated infections and c. difficile infections as the most prevalent [ ] [ ] [ ] [ ] [ ] [ ] [ ] . there is limited data analysing the comparative overall frequency of the different syndromes. in elderly people living in nursing homes, utis (at least - % of healthcare-associated infections), respiratory infections, skin and soft tissue infections and those of the git predominate [ ] . in a recent spanish multicentre descriptive study, conducted in emergency departments, , patients were included, of whom , ( . %) were at least years old. compared to younger adults, older patients (mean . years) had respiratory, urinary and intra-abdominal infections more often, while there was no difference in the frequency of other syndromes [ ] . these data are confirmed in chinese studies that analyse elderly patients attending emergency departments and also show a significantly higher incidence of respiratory and urinary infections [ , ] . in the case of utis, the relative prevalence is influenced by the gender of the patient. thus, for long-term care facility (ltcf) residents and in hospitalised elderly people, uti is the number one cause of infection and is the second most common in older women living in the community [ ] . the incidence in men ranges from . /person year ( / ) in men aged - and reaches . ( / ) in men over . in women, the incidence of uti increases with menopause ( . per person/ year: / ), increasing to . per person-year ( / . ) after age [ ] . in indwelling catheter-wearing patients, the incidence of utis is . cases per , catheter days, compared to only . per , days for all residents (x ). urinary tract bacteraemia was - times more common in patients with permanent urinary catheterization [ ] and uti is also the most frequent cause of community-acquired bacteraemia in the elderly ( - %). with respect to respiratory infections, the annual incidence of community acquired pneumonia (cap) ranges from - . episodes per , people over years of age and represents - % of hospitalisations in this age group [ ] . in japan, % of deaths from pneumonia occur in patients over years of age. the risk of cap is times higher in those over compared to those under and . times higher in those over compared to adults aged - . viral infections are also common in this age range, as we will see later. the most prevalent infections in the elderly de-is estimated at between and episodes per , days of stay in the residence [ , ] . the figures rise to for those with some kind of prosthetic material [ ] . we have several european halt studies (healthcare-associated infections and antimicrobial use in long term care facilities), with participation from countries, including spain, with a prevalence of infection of . % and % at two different times [ ] [ ] [ ] . a french multi-centre study, conducted in nursing homes with , beds, shows an infection prevalence of . % [ ] . the first data on infection in nursing homes in spain come from the epinger study, conducted in community health centres in catalonia, which reported a prevalence of . %, although it should be pointed out that in catalonia the concept of the community health centre would include medium-long term patients, while in the rest of the spanish autonomous communities this concept would be limited to nursing homes [ ] . in another study, conducted by san sebastian's fundación matía, an infection prevalence between . % and . % was reported [ ] . data derived from the vincat study in catalonia show a prevalence of healthcare-associated infection in long-term care centres of . %, with a great diversity, depending on the type of care unit (subacute . %, palliative . %, convalescent . %, long stay . %) [ ] . home is the most recommendable place for the healthy elderly to live, and even for the elderly patient, with healthcare falling to primary care professionals, although sometimes with the collaboration of some hospital resources. the ministry of health, social services and equality has for the first time published the results of the primary care clinical database (bdcap), a tool that allows for a more precise and systematized knowledge of the main health problems in spain dealt with by the doctors on the healthcare frontline. thanks to this register, a detailed picture of the health problems of the spanish population is available from primary care [ ] . in this database, infections appear among those over years old with an elevated frequency of . cases a year per , people ( . ‰ men and . ‰ women). the most frequent correspond to the respiratory system ( cases/ persons/year), followed by urinary tract infections with ( . cases/ persons/year) and clear female predominance. finally, nosocomial infections are those that occur in hospitalized patients and are present more than hours after admission. they are acquired by transmission from the environment, from other patients or from healthcare personnel. they are considered to be the most preventable cause of serious adverse events in hospitalised patients [ ] . in general, these infections are related to invasive diagnostic or therapeutic procedures (urethral catheterization, surgical procedure, vascular catheter, invasive mechanical ventilation), all of which have in common the disruption of the host's own defences by a device or an incision, allowing the invasion of nosocomial infections) [ ] . the most common cause was influenza ( % of all patients studied). rsv is also a significant pathogen in this population [ , ] . the most important cause of git infection in the elderly is clostridioides difficile. c. difficile (c-diff) infection is currently the most prevalent nosocomial infection, affecting in more than % of the episodes patients over years of age [ ] . moreover, it is in this population that c-diff causes the highest morbidity and mortality, with an increase in c-diff-related mortality from . to . deaths per million population per year from to [ ] in patients with an average age of years having been described in the usa. it is interesting to note the safety of using the same therapeutic options in elderly patients, including faecal microbiota transplantation [ , ] . the microorganisms causing infection in the elderly are qualitatively the same as in the population of other age groups, although there are quantitative variations. where do they get these infections? what proportion are acquired in nursing homes? at home? in hospital? - in addition to the hospital and home environment, the elderly can acquire infections elsewhere, and in particular in other care units. this is the reason why, almost years ago ( ), the term "health care-associated infection" began to be used, which is not only limited to hospitalized patients, but also extends the concept to patients in contact with the health system (home care of patients with high comorbidity and complexity; day care centres; major outpatient surgery units; outpatient dialysis centres; community health centres for chronic or convalescent patients). to a great extent, it is in nursing homes where patients with more comorbidities, polypharmacy consumption, a high degree of dependency and a high prevalence of invasive devices (bladder catheter, nasogastric tube, percutaneous gastrostomy) will be treated. in addition, the environment can facilitate the transmission of microorganisms between residents and healthcare personnel, as well as between residents. for all these reasons and the excessive or inappropriate use of broad-spectrum antibiotics, either empirically or prophylactically, multi-drug-resistant (mdr) infections can be generated. implementation of effective preventive measures in this population is very difficult to organise. in the united states of america, it is estimated that approximately . million people live in nursing homes and suffer between . and million episodes of infection annually [ ] . the prevalence of infections in these residences is estimated at % of the residents [ ] and the incidence of new infections infectious diseases are the second cause of such admissions ( . %), only surpassed by cardiovascular diseases ( . %). pneumonia and sepsis are the most common infections causing admission in this population [ ] . the elderly population also has longer hospital stays ( . days for those over ≥ ) than those between and ( . days) and those between and ( . days) [ ] . the elderly are treated by virtually every unit in a hospital but it is worth mentioning that those over years of age represent % of those admitted to intensive care units [ ] . the other group of interest is that of specialised geriatric units, not available in all hospitals, which have been shown to improve the functional status of patients and reduce the number of discharges to long-term care homes [ ] . in a study by saliba et al., conducted in israel [ ] , out of a total of , hospital admissions in the elderly between and , the proportion of admissions due to infectious diseases rose from . % in to . % in . globally, the most frequent infections causing admission were: those of the lower respiratory tract (lrt) ( . %), followed by the utis ( . %), upper respiratory tract ( . %) and hepatobiliary ( . %). in spain we do not have precise answers to the questions asked. the proportion of serious infections in the elderly requiring hospitalisation depends on several factors: type of infection, severity of infection and other factors such as the degree of frailty of the elderly, their place of residence and their ability to receive care at home. the environment and the resources available also influence the hospitalisation decision. however, in our environment, most serious infections in the elderly will require hospitalisation for at least a few hours. in spain, serious infections in the elderly can be treated by different professionals depending on the type and severity of the infection, and the environment in which it occurs. a high percentage are treated by "generalists" hospital specialists, or geriatricians. where infectious disease specialists are available they are of course involved in their management, either in beds in their own departments or as consultants. they can also be treated by specialists of the affected organ such as orthopaedic surgeons in the case of infections of prosthetic material, or vascular surgeons in the case of infections of vascular ulcers. and if, in the end, hospital admission is not decided, the patient is cared for by the primary care team. as an example, we have collated the urinary tract infections treated at the hospital general universitario gregorio marañón between and . when uti is the main diagnosis that motivates admission (about cases a year) about % of cases are cared in the medical departments. when it comes to secondary diagnosis (about , cases per year), the internal medicine and geriatrics departments take care of about % of the cases. preventive programmes, such as flu vaccination programmes, reduce the need for hospitalisation for respiratory infections by nearly %, both inside and outside spain [ ] [ ] [ ] . microorganisms that are part of the patient's usual microbiota (endogenous microbiota), or selected by the selective antibiotic pressure (secondary endogenous microbiota), or by one found in the hospital environment (exogenous microbiota). to understand the main epidemiological data on hospital infections, the epine study (estudio de prevalencia de las infecciones nosocomiales en españa (study on the prevalence of nosocomial infections in spain)) was developed. this is a multi-centre system for monitoring nosocomial infections, based on the production of an annual prevalence study, which has been conducted since in a large group of hospitals in spain and was promoted by the spanish society of preventive medicine, public health and hygiene. its methodology guarantees a homogeneous and systematic collection of information, which allows us to understand the prevalence of healthcare-associated infections (hais) at a national level, by autonomous regions and hospitals. since , every years the epine study has been produced jointly with the european study (in and ) under the coordination of the ecdc [ ] . based on the latest data published, in november ( hospitals and , patients), a prevalence of nosocomial infection in patients over years of age of . % (infections acquired during the current admission), . % (infection acquired during the current or previous admission) and . % (the total, including the centre's own or imported) has been reported. it should also be noted that this register shows that in % of patients over years of age admitted for an infection, the infection had been acquired in the community (patient's home). the home, nursing homes and community health centres, healthcare centres other than hospitals and the hospital itself are often the places where the elderly acquire infections. the studies reviewed allow us to estimate a prevalence of infection of between and % in nursing homes in spain, depending on their complexity, and between and % in hospitalised elderly people. in primary care and in the residential environment, there is no homogeneous epidemiological record of this problem. what proportion of severe infections in the elderly require hospitalisation? by whom are they treated? in the united states of america, patients over years of age account for almost % of total adult admissions and the cost of these hospitalisations represents nearly % of the total cost for hospitalisation, although those over years of age account for less than % of the total adult population [ , ] . those over years of age are admitted to hospital three times more often than those between and years of age, and those aged or over account for . % of all hospital discharges, although they represent only . % of the population as a whole. moreover, in our opinion, in these departments, emergency assessment should not be focused only on the isolated episode for which the patient consults, but the particulars of the elderly person, their functional, mental and social situation should be taken into account. this is a huge workload for the ed. finally, we should bear in mind that the training of ed physicians on these issues is limited [ ] as a direct consequence of the self-training of current professionals, which is not always complete, and the lack of a regulated medical specialty in the ed. in spain, between and % of emergency department visits occur in the elderly. elderly people come in . % of the time for infections and one third of the infections seen in the emergency departments occur in the elderly. the population over years of age who attend the emergency department often have multiple pathologies and clinical manifestations of infection that may be atypical. in the spanish national health service, emergency activity accounts for a total of . million consultations per year, of which . million are attended to in primary care (pc) (outpatient or home), with an average attendance of . people/ year [ ] one-third of emergency consultations in pc are related to infections [ ] . in the older patient, infections are more frequent and serious, associated with greater morbidity and mortality [ ] [ ] [ ] . among the elderly, the rate of infection reaches . cases per thousand people per year. the most frequent correspond to the respiratory system ( cases per thousand), particularly those of the upper respiratory tract, followed by acute bronchitis and bronchiolitis and pneumonia [ , [ ] [ ] [ ] . in second place are utis, mainly affecting women ( . cases per thousand compared to . per thousand for men) [ ]. these are followed by skin and soft tissue infections [ ] . most of these cases are dealt with in primary care and only those more serious situations and of uncertain diagnosis are referred. in %- % of cases, cap is diagnosed in pc [ , ] and streptococcus pneumoniae is the cause of two-thirds of these cases. invasive forms of pneumococcal disease (ipd) are less common, occur in patients with certain risk factors and have high mortality rates [ ] . the vast majority of vaccination programmes in spain are carried out in primary care, but the vaccination schedule for older people is neither complete nor promoted as it should be. what is the workload represented by elderly patients in hospital emergency departments? the number of visits to hospital emergency departments (ed) has been increasing progressively for decades. this increase is greater in the elderly, whose population accounts for - % of all visits to the hospital [ ] . the incidence and impact of infection in the ed is estimated quite reliably. in spain it is . %, % in the usa and around - % in countries such as nicaragua and mexico [ ] . the elderly are characterised by a higher probability of atypical presentation of diseases, of suffering from multiple diseases and of consuming many drugs. with regard to emergency care, this implies a more complex clinical evaluation, which translates into a greater request for additional tests and consultations with other specialists, longer stays in the ed (extended periods under observation and in ssus), as well as a greater probability of admission, discharge with undetected or untreated problems and return visits to the ed [ ] . all this entails a high risk of adverse episodes [ ] and a significant impact on healthcare pressure, resulting in a negative effect on ed saturation [ , ] . likewise, the prevalence of the frail elderly in the community varies according to the diagnostic criteria. in a study conducted on elderly people admitted to the observation room of an ed in a spanish tertiary hospital, it was verified that only one of them did not have any fragility criteria and on admission almost half of them suffered significant dependence [ ] . the detection of the high-risk or fragile patient is fundamental for these departments, for decision-making and in particular for discharge directly from the emergency department. we could highlight that in the recent work of the in-fur-semes group, in a study conducted in spanish eds, . % of infections occurred in patients over years old. of these, % were urinary and . % were lower respiratory. in conclusion, when compared with a similar study, conducted twelve years earlier, an increase in the prevalence of infections is observed, with an older patient profile, comorbidity, risk factors for mdr microorganisms and septic syndrome [ ] . the latter almost always presents itself as an acute confusional syndrome, which implies a complex differential diagnosis. to what extent do you think that infection in the elderly is preventable? what proportion could be avoided with proper vaccination? in an article published by umscheid et al. [ ] , not specifically addressing to the elderly field, it is estimated that %- % of cases of catheter-related bacteraemia or catheter-associated urinary tract infection and % of pneumonias from mechanical ventilation or skin and soft tissue infections could be prevented in the hospital environment using the methodology currently available. an infection control programme for older patients includes methods for surveillance and recording of infections, recording and management of multi-resistant microorganisms, outbreak contingency plans, isolation policy and standard precautions, hand hygiene programmes, ongoing education of employees, resident health plans, audits and plans for reporting incidents to health authorities [ ] . this set of resources is not available to most of the world's elderly. a group of experts, gathered in a delphi study on infection prevention measures in patients admitted to institutions for the elderly, agreed on recommendations [ ] but unfortunately the level of evidence on the effectiveness of each of them is very limited. data on the reduction of different infections by different measures are extremely scattered and limited. some examples are the reduction by % of periprosthetic infections with antibiotic prophylaxis [ ] , a % reduction in episodes of influenza with the physical separation of the young and the elderly, [ ] or a % reduction in episodes of pneumococcal pneumonia with the -valent vaccine [ ] . makris et al. [ ] conducted a study to test the effect of an infection control programme in institutions for the elderly in the united states of america. they divided the centres into test centres ( ) and control centres ( ) and studied the incidence of infections in both groups before and after the programme was introduced. in the year prior to the intervention, test sites experienced infections (incidence density rate, . ) and control sites infections (incidence density rate, . ). in the intervention year, the test centres reported infections, a decrease of infections (incidence density rate, . ), while in the control centres, the number of infections increased slightly to (incidence density rate, . ). the greatest reduction in infections at the testing centres was in upper respiratory tract infections (p = . ). the intervention programme consisted mainly of implementing environmental cleanliness, hand washing programmes and educational talks. therefore, and speculatively, we dare to estimate that a the infection rate in the elderly exceeds episodes per , sick people per year. primary care handles the vast majority of these episodes and refers only the most serious cases. primary care is responsible for the vaccination programme for elderly people who attend to request it. the vaccination schedule for older people is neither comprehensive nor proactively promoted. what does infection in the elderly entail in terms of days of hospitalisation, financial expenditure and death? to approximate data/figures for variables such as "days of hospitalisation, economic expenditure and death" in a field as broad as "infection in the elderly" is enormously complicated. it must be taken into account that the infectious pathology is very varied and that it can affect people with different locations (community, community health centre or the hospital itself) and conditions. for example, with reference to nursing homes, lim et al. estimate episodes of infection for every , cumulative days spent in the home in a small group in australia [ ] , while much more extensive north american data report % of nursing home residents having an infection at the time of the study [ ] . this leads to estimates of between . and . million episodes of infection per year [ ] with annual costs of no less than us$ billion, prior to . in a study conducted in brazil, the cost of an infection in the elderly requiring admission is estimated at , brazilian reals (€ , ). patients are admitted for a median of days compared to a median of days for elderly people admitted for non-infectious causes [ ] . of that cost, only % is attributable to the purchase of antibiotics. there is a greater volume of data for community-acquired pneumonia (cap) [ ] [ ] [ ] [ ] . the cost of cap varies greatly depending on where the treatment takes place. a spanish study [ ] found a cost of only € in the case of an outpatient, compared to € , for pneumonia requiring hospitalisation. the costs were higher for subjects ≥ years. mortality increases significantly in the older patient ( %) with respect to the general population ( %). it is worth noting a publication in spain with a sample of , subjects, where mortality due to pneumonia is more clearly related to the age group than to the aetiological agent [ ] . we have not found precise data calculating overall clearly no one disputes the usefulness of ongoing education in many aspects of life and particularly in the reduction of nosocomial infections. that said, the literature review on the impact of educational programmes on nosocomial infection is irregular, fragmented and often difficult to assess. published studies generally include education as part of intervention programmes in which other measures are included, making it difficult to assess the role of education in isolation. it is also common to talk about the success or failure of an educational programme without detailing what the programme is, what content it has, how it has been implemented and how many people have accessed it. to complicate matters, in the case of the elderly, we have at least three different areas: home, nursing homes and institutions for the elderly and hospitals. in the first, the educational scope is very general and imprecise and is based on the public health and vaccination campaigns that are usually received not only by the elderly population but by the population in general. in the hospital field, we must assume that the literature produced on the impact of educational measures in the different syndromic entities generally includes the elderly population, but does not specifically differentiate it. most of the limited existing information, which we can consider specific to older people, is that generated in nursing homes and institutions that implement these programmes. a study conducted in the usa on , randomly selected nursing homes [ ] asked the homes for information on points related to infection control programmes. most of those responsible for control programmes, when they responded, claimed to have not only that responsibility but others as well ( %) and also to have no specific training in infection prevention ( %). there was great variability in practices carried out in each residence and % acknowledged having received an official citation for deficiencies in such control. those residences cited for deficiencies had a statistically lower proportion of staff trained in infection control. this is therefore an area with clear opportunities for improvement. in a systematic review on non-pharmacological infection prevention in long-term care facilities, only papers were selected, the majority of which were randomised studies ( %) and the most common reason was prevention of pneumonia ( %). % showed favourable results for the interventions, but the studies had many potential biases [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] . from these studies the main quality markers in infection control in a nursing home were deduced, namely: percentage of long-term patients with pressure ulcers, urinary tract infection, bladder catheter, and vaccinated against influenza and pneumococcal infection. high quality infection control programme in nursing homes could reduce infection rates by up to %. but even if we estimate much lower figures, the impact on morbidity, mortality and the economy of such programmes would be enormous and would certainly outweigh their implementation costs. with reference to the second part of the question, the possibility of reducing the problem with vaccines, the data are again scattered and studied for different vaccines individually. in addition, information on the elderly must often be inferred from data on the general population. we refer readers to a recent review on the subject [ ] . below is some data on the impact of vaccines of particular interest to the older population. gross et al. [ ] in a meta-analysis of cohort studies estimate the effectiveness of influenza vaccination at % in preventing respiratory infections, % in preventing pneumonia, % in preventing hospitalisations and % in preventing deaths. in the case of zoster, the vaccine's efficacy is estimated at more than % with minimal adverse effects [ ] different pneumococcal vaccines have different impacts on the incidence of invasive pneumococcal disease (ipd) infection. a systematic review shows reductions in ipd incidence ranging from % as a combined effect of the use of pcv , pcv and pcv in those over in canada [ ] to a % reduction as an effect of the use of pcv and pcv in israel [ ] . with these data it is possible to imagine the added protection that adequate vaccine coverage would provide. an estimated , americans die each year from vaccine-preventable diseases, and % of those who die are adults [ ] . increased provision of medical care in large care homes (e.g. those with more than - beds) could reduce the referral of many elderly residents to hospital emergency services. this provision of medical care would not necessarily be very complex and would cover both simple diagnostic material and the possibility of establishing and carrying out pharmacological therapeutic courses at the centre itself, the prescription of which in most cases still requires medical staff from outside the centre. it would be a way to reduce costs, lessen the burden on the elderly and reduce the overload on hospital emergency departments. it is impossible to give a precise answer to the questions asked, but it seems reasonable to assume that with appropriate prevention programmes, acquired infections in institutionalised elderly people could be reduced by up to %. strict adherence to a vaccination programme for the elderly would have an enormous impact on reducing suffering, death and economic waste. what data exist on the effectiveness of educational measures on the incidence of infection in the elderly? ties specifically dedicated to infection. by way of an example, in spain, this occurs among specialists in microbiology and infectious diseases and intensive care specialists. .-specifically promote research aimed at preventing infection in elderly patients. .-introduce much more active involvement of patient associations in their management structures. what we say about societies primarily dedicated to the elderly, can be similarly assumed and applied to societies primarily dedicated to infectious diseases and microbiology. the role of the scientific societies dedicated to geriatrics and infectious diseases is to promote alliances in the common field of infection, in aspects of care, teaching and research. they need to look less to the interests of their members and be more proactive in promoting the interests of the patients they serve and incorporate patient associations more into their structures. capacity, understood as the possibility or potential for influence, is qualified by two variables. firstly, for offering free and truthful scientific information at the service of the community. and secondly, for facilitating the adoption of the best possible political decisions with consistency and realism. the rapprochement between professionals in the scientific and political fields must be adjusted to the interest of citizens, who can act as the third pillar in a transparent relationship model and as guarantor of equity befitting a democratic system of government [ ] . while scientific experts advise and inform, it is the responsibility of politicians to make decisions and promote efficient measures to the benefit of the population. a complementary characteristic inherent to the scientific task is to exercise a dissemination action of the activity itself, in understandable terms and through accessible and reliable systems [ ] . the configuration of platforms within scientific societies and the growing number of independent agencies advising political power represent a reality that aims to bring the contributions of science closer to the systems of governance [ ] . in our country, the main function of the congress of deputies is legislative, which entails the approval of laws. the constitution recognises the legislative initiative of the government, the congress of deputies, the senate, the assemblies of the autonomous communities and the people's legislative initiative on the proposal of no less than , citizens, subject to the provisions of an organic law. these bills are known in spain as law projects when presented by the government and propositions in other cases. they are always submitted to the congress of deputies, except for the propositions of the senate which have to be considered scientific societies are professional associations that bring together generally specific groups (doctors, nurses, technicians, etc.) that essentially seek to defend the professional interests of their members. until now, it has not been common for groups of patients affected by different diseases under the thematic umbrella of each society to participate in them. in spain their impact and political credit is variable. among the most important objectives of most of these societies are such issues as training programmes for professionals, aspects related to the health education of the population in their particular field of competence, research grants, the preparation -sometimes in collaboration with societies of another related specialty -of specific diagnostic and therapeutic protocols, publications and congresses focussed on these topics, and a wide range of other activities, including health policy recommendations to the corresponding administrations that have a direct bearing on the issues discussed here. membership of societies is also not uniform, and often it is the more "senior" components of the profession that are most highly represented in them. their role, in our opinion, is to continue to improve the teaching, care and research produced in the societies' chosen fields in favour of patients, exercising ever greater mediation between the demands of patients and healthcare administration [ ] . all societies must go far beyond issuing guidelines and therapeutic recommendations [ , [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] . in our view, scientific societies dealing with diseases of the elderly should promote, in the field of infectious diseases, among others, the following topics: .-encourage a proportionate share of its members to subspecialise in infectious diseases. .-coordinate and direct multidisciplinary teams specifically dedicated to the infection in the elderly and its prevention. .-participate more actively in specific programmes to reduce infections in the elderly, both at the nursing home level and at home and in hospital. .-implement vaccination campaigns in the elderly, taking particular advantage of admission to long-stay centres or hospital as opportunities to vaccinate. .-to design and disseminate educational projects on infection prevention practices for the elderly in their different environments. .-put pressure on health authorities to carry out a large national programme to reduce infection in older people. .-to include in the training programme of residents in geriatrics, a rotation in infectious diseases and microbiology as an essential part of the curriculum. .-create scientific and professional alliances with socie-to offer a unique system to access scientific information allowing the recovery of different types of documents such as: journals, books, images, theses, and conference proceedings. revista española de geriatría y gerontología (the spanish journal of geriatrics and gerontology) is the publication channel of the society of the same name, a publication founded in and the doyenne of the specialty in the spanish language [ ] . medes is an initiative of the fundación lilly and its database, open and free, contains bibliographical references published since in a selection of spanish journals covering subjects in medicine, pharmacy and nursing, published in spanish, with , articles [ ] . finally, pubmed is the widely implemented search engine, with free access to the medline database of citations and abstracts of biomedical research articles, offered by the united states national library of medicine and integrating , worldwide journals since [ ] . the search was conducted with a double strategy: free text and controlled text using "mesh". in the first strategy, a free text search was conducted in the "science direct" and "clinical key" databases with the term 'infection in geriatrics' resulting in and , findings respectively. the primo search engine (castilla y león online library) returned a total of results for the same term. secondly, and also in free text, with the term 'infection in the elderly', we proceeded to consult revista española de geriatría (the spanish journal of geriatrics), which generated results and medes (medicine in spanish) with results. the second strategy of controlled text was conducted in the pubmed database, returning the following findings: <infection and geriatrics>: results; <infection and aged> (people from to years old): . results and <infection and aged or aged, and over>: . results (identical to the previous one). its development over the last decade has been progressive (from figures close to , in the - biennium, to over , from to ), excluding the year from the assessment. we have adopted their classification into thematic areas [ ] and the twelve in which % of the results were concentrated are: sepsis and bacteraemia, pneumonia, urinary tract infections, central nervous system infections, endocarditis, prosthetic infections, skin infections, gastrointestinal infection, hiv infection, fever of unknown origin, multi-resistance and vaccinations. the scientific output on infections in the elderly, calculated by different databases, has been increasing in the last decade. how do the problems of the elderly impact on the mainstream media? how should the media contribute to the reduction of infection in the elderly? the impact of the problems of the elderly in the media is in the senate, which will later submit them to congress [ ] . non-legislative bills, motions and proposals for resolutions are acts of a similar nature that seek the adoption of a non-legislative resolution by congress, by which congress expresses its position on a given subject or issue, or addresses the government urging it to act in a particular direction. the health and social services commission of the congress in the xii legislature offers access on its website to the initiatives processed since its constitution in september until its dissolution in march , representing an average of per year [ ] . of these, those referring to the field of infectious pathology as a whole do not exceed %. of particular relevance in the field of infectious pathology have been those relating to the national plan for the elimination of hepatitis c and antibiotic resistance. governance designates the effectiveness, quality and good orientation of state intervention, which provides the state with a good part of its legitimacy in what is sometimes defined as a "new way of governing". above all, it is used in economic, social and institutional operational terms [ ] . an inherent aspect of the exercise of policy is the performance of "authority", which is equally composed of legitimacy (right to exercise), personal prestige (moral strength, leadership, honesty, knowledge, efficiency) and power (ability to administer and lead). it is precisely in the "personal prestige" where their synergy with the scientist (also covered by knowledge, honesty and leadership) should be the lever for the improvement of the society they both serve. initiatives on proposals or projects with reference to infection issues represent less than % of the total. of particular relevance in recent years have been those relating to the national plan for the elimination of hepatitis c and antibiotic resistance. in order to respond to the scientific output on infection in geriatrics, we will proceed to describe the data sources, the search methodology and the findings, in a way deliberately guided by the recommendations of professionals in our workplace libraries. sciencedirect [ ] is a digital platform that has provided subscription access to a large research database, hosting more than million publications from , academic journals and , e-books since . clinical key [ ], owned by "elsevier clinical solutions", has an intelligent search system, establishing the connection of medical terms with related content. it accesses a collection of resources of clinical guides, algorithms and patient files from fisterra, the database of monographs of medicines marketed in spain, the treaties of the medical surgical encyclopaedia, and books and journals in spanish from the cited publisher. primo is the discovery/search tool used by the castilla y león healthcare online library [ ] as a small demonstration of this paradox -the contrast between the rising presence of the elderly in society and their lukewarm representation in the media-, we offer a chart with a comparison of publications on the websites of three generalist newspapers, "el país", "el mundo" and "abc", between the years - , with the search for "elderly" and "infection" as key words. a total of news items are recorded that mention the subject studied ( figure ). this is little news, and in most cases linked to events and to the elderly as a risk group. this sample would require further media analysis to ratify this tendency in the treatment of the problems of the elderly and the infections they suffer, but it serves as the tip of the iceberg of relegation, insensitivity and atrophy in news treatment. since the onset of the economic crisis in , the number of dedicated journalists specialising in social and health issues has been substantially reduced in order to divert manpower and resources mainly to political and economic content. if, in this situation, health, science and social issues have been scaled down and cut back in the operation of the media, the elderly, as journalistic content, have been pushed to the very margins of the newsrooms with complete normality; with no agenda, no specialists, no briefings, no planning, no contextualization; to see themselves as mere circumstantial, inconsequential, occasional content, with a light, sometimes frivolous treatment, lacking depth and sensitivity; building a narrative of topics, irrelevance and disconnection from their value and presence in society. this media portrayal of the elderly is in contrast to the ageing of the population, where reliable and accurate statistics limited, deficient, incomplete, unfocused, out of context, stereotyped and with a not particularly constructive, realistic or objective bias. the elderly are invisible in the media and when they appear, the content relating to them is characterised by simplification, victimhood, dramatization and superficiality. the image that the media convey of old age is linked to inactivity, unproductiveness, seniority, illness, dependence and deterioration. old age and its problems, circumstances, needs and contributions, as a social agent and subject, are not among the priorities and themes of general media planning. other groups, sectors, actors or social issues such as immigration, feminism, equality, children, domestic violence, ngos and their services, new technologies and their advantages, effects and risks, harassment in all its forms, health and sanitation, or scientific advances have much more visibility, relevance, monitoring, currency and presence in the media. the problems related to a stage of life that we can place at around years provoke a disinterest and sidelining in the information and journalism that only is unblocked in the face of news related to events, diseases, negative or sensationalist facts or anecdotes, offering a fixed, unmoving and old-fashioned image of a sector of the population that, nevertheless, is increasing due to the increase in life expectancy. in a world where the st century grants youth and technology all the plaudits as to what is interesting and important, whether in the press, television, radio, websites or social networks, ageing and old age, as a concept, social and population sector, and newsworthy subject, are moved to a second or third tier on the podium of current affairs and information. citations regarding "infections" in the "elderly" in major general journals of spain formation on the elderly and very elderly has been strengthened, is to promote health and healthcare information in relation to this sector of the population. in this context, the media would be in a position to treat and report, with much higher presence and representation criteria than at present, on the infections of the elderly within the framework of their health and well-being. it is very difficult to reach this third step without the two previous actions, since the handling of a health problem such as infection in the elderly by the media requires a commitment and responsibility in several phases that is part of a comprehensive strategy to provide a journalistic treatment of their problems on a par with their representation and contribution to society. it is necessary to present older people and the elderly removed from the clichés and stereotypes that link them directly and almost solely to the events, the deterioration of their health, family dependence or the hindrance or burden of their role and function in society. it is necessary to offer complete and balanced information in which tasks such as interest in culture, modernity, the future, technology or travel; their capacity to lea in civil society, family, business or education; their initiative in domestic and community tasks; their political or social contributions; or their skills in the practice of sport are inherent. in short, to show their vitality, enthusiasm, enterprise, activity, determination, solidarity or collaboration, beyond their problems or difficulties, which must also be reflected and analysed. it should not be forgotten that though the generation of elderly people now over / years old may have a more traditional, reserved and passive profile in certain cases -by no means in all-, the new generation of elderly people forecast for , where their number will rise greatly, will experience a huge change with regard to the distorted image of the elderly today. the information that the general media dedicates to the problems of the elderly is minimal, distorted and biased. it is full of clichés and stereotypes that link them directly and almost exclusively to events, the deterioration of their health, family dependency or the hindrance or burden of their role and function in society. information on infections in this population group is even more scarce. presentation: the answer is yes, without a doubt [ , [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] [ ] . the reasons are detailed below: studies conducted following scientific evidence criteria in recent years show that pharmaceutical care and the intervention of the pharmacist improve the overall quality of patient care, while the who itself states that point to a doubling of the number of older people by . the data show that in in spain, there were . million children under years and . million people over years, in the number of children under had fallen to . million, and over risen to . million; by the trend becomes even more acute, with under years predicted at . million, and over , . million [ , ] . globally, in the century from to , total population will triple; the population over will grow by a factor of ; and the population over by a factor of , this last group going from million in to million in . if information concerning and affecting the elderly continues to be ignored, marginalised and simplified in the media, they will neglect and fail in their mission of gathering information, analysis, data and opinions from a sector of the population with enormous influence on the life and events of a country. without rigorous, truthful, balanced, comprehensive and complete information on the phenomenon of old age, the view and expression of reality will be distorted, fragmented and fractured. to help reduce infection in the elderly, the media must take several steps beforehand and activate new information strategies and actions [ , ] . review and reformulation of the contents for current events, relevance and interest agendas. the first step is to place general social and health issues on the same level of importance as national or international political, economic or sports information, with the consequent allocation of space, dedication and resources. enhancement of content for the elderly in social and health information. within the social and health content, the news of the old and elderly must be equated in relevance, dedication, selection, monitoring and treatment to other issues related to this journalistic field, with emphasis on the quantity and quality of the information, from the rigour, planning and contextualization to gather studies and data, human stories, opinions, difficulties and needs, social influence, contributions, and challenges in this sector of the population. the aim is to offer a complete, balanced, objective and true vision of their reality, their contributions, their heterogeneity, their variety, their complexity, their evolution and their demands and needs. the problems arising from the increase in age, health, coexistence and economic situation, as well as cultural, sociological, family and psychological aspects, must be approached with an informational style and treatment where ageing is considered from the standpoint of normality in life, with its ups and downs, and not as a hindrance, obstacle or inappropriate or unsustainable expense. the social and cultural role of the elderly, their knowledge and experience, their skills and abilities, should be valued as useful and enriching elements to society. promotion of health and sanitation information in the elderly. the next step for the media, once the general in-ed following scientific evidence criteria in recent years show that pharmaceutical care and the intervention of the pharmacist improve the overall quality of patient care, while the who itself states that pharmacists "contribute decisively to the rational use of medicines". what is the administration doing and what can it do to reduce these problems? from an educational point of view? from the legislative-regulatory point of view? in order to reduce these problems, the state administration must, among other things, launch: . prevention strategies and measures to control the transmission of the infection. .-vaccination programmes in the elderly. .-training and information programmes for health professionals, particularly in the area of rational use of antimicrobials and promotion of the use of appropriate definitions [ , ] pharmacists "contribute decisively to the rational use of medicines". the decision on how to treat a given infection correctly with the most appropriate antimicrobial requires detailed knowledge of microbiological, clinical and pharmacological issues, but the causes of an optimal result go beyond this and extend to the so-called non-pharmacological basis, among which the behaviours of doctors, patients and pharmacists, as well as the relationships between them, play a fundamental role. the pharmacist is one of the apices of the so-called "human factor triangle" (made up of doctor-patient-pharmacist), a mirror image of the famous "davis triangle" (antimicrobial-microorganism-host). currently, pharmaceutical care aims to obtain the maximum clinical benefit from medicines and to achieve the lowest possible risk in the use of those medicines, which entails the identification, resolution and prevention of medication-related problems (mrp): adverse drug reactions (adr), drug-drug interactions (ddi), deficiencies in physician prescription, errors in the use of medication by the patient and breaking the vicious circle so frequent in the use of antimicrobials formed by self-medication -noncompliance -storage. pharmaceutical care is a process, which includes different stages: active dispensation (supply, delivery, dispatch >>> assistance, help, care), educational advice (health advice in response to a consultation/problem or instruction on the acquisition of a medicine) and pharmacotherapeutic follow-up (documentation and registration of the activity). as far as the hospital pharmacist is concerned, it must be said that they not only participate actively in the rational use of antimicrobials from their role as an active member of the pharmacy commission and the antimicrobial committee, but also get involved on a daily basis in the prudent and correct application of antimicrobial therapy, in order to obtain the most beneficial result from the clinical point of view and the most efficient from the pharmaco-economic point of view. this implies that: the appropriate antimicrobial has been prescribed in accordance with a correct diagnosis and the special characteristics of the elderly patient, it is dispensed under the proper conditions, administered at the indicated doses, at the intervals and for the period intended, it is used with the lowest possible cost, in such a way as to prevent or minimise the development of bacterial resistance and it achieves the desired therapeutic objective. in short, both the community and the hospital pharmacist as first-level health agents play a central role in the field of therapeutic adherence and rational use of antimicrobials, proposing their use in terms of quality of treatment and considering antimicrobials not only by virtue of the active ingredient contained in the corresponding pharmaceutical specialty, but also in terms of useful information ("software"). furthermore, both must take into account that antibiotics and vaccines are the paradigm of societal treatment and the treatment or non-treatment of an individual can affect the community [ ] . conclusion: the answer is yes, without a doubt. studies conduct-another precaution is the sanitation of the space in which the elderly person stays so as to make it a healthy environment, including daily cleaning of surfaces, objects and utensils, ventilation, illumination preferably with natural light, and appropriate environmental temperature and humidity [ ] . the tendency to unbalanced diets, malnutrition and low fluid intake increases susceptibility to infection. it is essential to promote healthy lifestyles and to provide structured plans for eating, drinking and exercise adapted to individual needs taking preferences and health problems into account [ ] [ ] [ ] [ ] [ ] [ ] . another strategy is the vaccination of the elderly and carers, adjusted for age, particular situation and the approved schedule in each autonomous community [ ] . although infectious diseases in the elderly do not always have obvious signs and symptoms, the caregiver detects changes in their baseline situation that may lead to a suspicion of the presence of an infectious process, so education should be provided on how to proceed in the light of this suspicion and what to do when it is confirmed. finally, it is necessary to emphasise the effective management of treatment (dose, administration and side effects) and periodically monitor therapeutic adherence, avoiding self-medication, in order to achieve the optimal effects of non-pharmacological and pharmacological measures, so as to enable prevention, delay deterioration, recover or maintain health [ ] . nurses develop interventions for prevention, monitoring and therapeutic adherence control, participating in the care plan for infection in the elderly. the implementation of many of the health promotion and care plans and regulations is the direct responsibility of the nursing profession. how do senior citizens' associations deal with this problem? the issue of health is a priority for the elderly and infection in particular is one of the most frequent causes of morbidity and mortality in the elderly, as has already been mentioned. elderly associations have traditionally focused on chronic rather than acute diseases and therefore have a huge role to play in this area. it is the mission of the elderly associations to encourage and promote the residence of the elderly in a family and social environment that is agreeable to them. it is well known that an older person who lives comfortably at home with family members has less risk of acquiring infections than one who lives alone. in the case of the elderly institutionalised in residences, the elderly associations have the mission to ensure the quality tions for the prevention and control of healthcare associated infections (hais). some examples of the above are programmes such as: "antibiotics: take them seriously" ( ); the "world antibiotic awareness week" ( ); the "european antibiotic awareness day" ( ). a national plan against antimicrobial resistance (pran) run by the spanish agency of medicines and health products (aemps) is essential [ , [ ] [ ] [ ] [ ] [ ] . the administration has a constitutional mandate to promote health, which is of particular concern to groups as vulnerable as the elderly. among the measures to be implemented, those of an educational nature are especially necessary, both for patients and for their caregivers and healthcare personnel. from a legislative-regulatory point of view, we cannot forget that spain has one of the best health systems in the world. what is the role of nursing in managing and reducing infection in the elderly? how does the training of the caregiver affect this? nurses develop preventive interventions, participate in the monitoring, control, therapeutic adherence and care plan when the infection is established. these competencies are developed inside and outside of healthcare institutions. in the home setting, the focus is on education and providing support for safe practices [ ] [ ] [ ] [ ] . professionals, caregivers and elderly people have to distinguish modes of transmission, identify risk factors and susceptible people who may become reservoirs or constitute a vehicle of contagion and understand basic protective and barrier measures. the simplest, most effective and universal procedure is hand hygiene. the world health organization identifies five key times for washing: before and after contact with the person, before performing a clean/septic task, after the risk of exposure to body fluids, and after contact with the patient's environment [ ] [ ] [ ] . when hygiene guidelines are given, it is worth noting other times: before, during and after handling or preparing food, before eating, before giving medication, before and after treating a wound or handling clinical devices, after using the bathroom and after handling used clothing, whether personal, bath or bedding, diapers or waste. after washing, it is important to dry the hands. personal hygiene and topical hydration are other prevention strategies. the skin constitutes a natural protective barrier and is particularly labile in the elderly. its daily care guarantees its integrity and protects it from external assault. this includes body hygiene and protective measures aimed at moisture control and injury prevention. some studies highlight the importance of oral hygiene in relation to respiratory diseases [ ] . the great social esteem that existed in ancient cultures for the elder of the group or tribe is well known. he was not only the oldest person but also the biological father, the political leader and, in many cases, the religious authority. and, as anthropologists have pointed out more than once, the "hard disk" of the community, aware of past events of which the younger generations are not, thereby bringing the social group together and giving it its own identity. hence, the elders were not only respected but highly valued and even revered. it is enough to open the books of the bible, for example, to find testimonies of this. its pages over and over again reverential respect for the elder, applying such venerable terms as "patriarch". the bible attributes an extraordinary longevity to the first patriarchs (gen ; , - ), and even to the later patriarchs, like abraham (gen , . ; , ) and moses (dt , ; , ), and to the prophets, it is difficult to represent them as young people. respect leads the bible authors to attribute centuries-long lives to them. longevity is a sign of their wisdom. the so-called wisdom literature bears good witness to this veneration for the elderly. in the book of ecclesiasticus we read: in your youth you did not gather. how will you find anything in your old age? how appropriate is sound judgment in the grey-haired, the contrast between the ancient civilization of israel and the archaic greek culture, as presented in the homeric poems, is surprising. it is difficult to imagine ulysses, hector or achilles as elders, even though in those poems there are also venerable subjects such as menelaus, agamemnon and priam. the contrast between agamemnon and achilles is particularly significant, for the poet paints the former as an ambitious and selfish man, with an excessive ego who confronts achilles, his best warrior, again and again. heroes, those beings that the greeks considered perfect and semi-divine, are by necessity young and in the fullness of their life force. in greek statuary of these institutions, that they are equipped with the appropriate medical, nursing and social services and that a systematic accreditation of these services is achieved. ideally, these centres should have very significant prevention measures in place and should work closely, on the one hand, with the primary care physicians responsible for the patients, and on the other hand, with the reference hospitals to which the patients have to be transferred at some point. elderly associations must continue to work to improve the care of the elderly in emergency departments, not only from a technical point of view, but also by ensuring the agility of the assessment and dignified conditions for the elderly in these departments. finally, the elderly who are hospitalised are patients who require very rapid mobilization, avoidance of exposure to multi-resistant microorganisms and the fastest possible transfer back to where they came from. elderly associations promote the provision of geriatric beds and services in all hospitals, where structures and organisations are set up specifically to serve the needs of elderly patients with a comprehensive idea of their care. as we have mentioned, prevention is better than cure, and in that sense, the elderly associations can play an important role in emphasizing to the authorities, to the groups of affected people and to healthcare personnel the importance of promoting vaccination campaigns [ ] in short, associations for the elderly, whether they are focused on health or not, can play a very positive role that is often overlooked when it comes to improving health. they could work, if possible, promoting and propagating vaccination campaigns. they could also contribute more than they do to other forms of health education, from those oriented towards nutrition or physical activity, to those focused on fighting toxic habits or reporting abuse. all this is of general interest, as well as directly and indirectly affecting the field of infectious pathology. following the recommendations of the expert consensus on frailty in the elderly, active ageing and drug screening in polymedicated patients are important in preventing infections in these patients. elderly associations must play a major role in demanding quality care policies for elderly patients, both in the fields of prevention and treatment. target areas for intervention are the home environment, the outpatient system, nursing homes, hospital emergency departments and hospital care. patient associations can contribute more than they do to other forms of health education, from those oriented towards nutrition or physical activity, to those focusing on combating toxic habits or reporting abuse. what ethical aspects would you highlight in all these problems? modern systems of work organisation have made "efficiency" a major objective of the culture of the second stage of life. there is no doubt that in spain, for example, efficiency has increased three or fourfold in the last half century. and here is the origin of the problem. what do you do when you are no longer "efficient", at least in the way the economy defines efficiency? efficiency is a value that belongs to the category of socalled "instrumental values", "reference values" or "technical values". they are so called as they have no value in themselves, but only in reference to something else or another value. let's think, for example, of a drug. there is no doubt that it has value, at least financially. its most valuable asset is to relieve a symptom or cure a disease. if it wasn't good enough, we'd say "it's not good enough", and we wouldn't pay for it. this means that the value of the drug is in reference to something other than itself, such as well-being, health, life, etc. this happens to all technical instruments. if we were to find a more effective or less expensive drug, there is no doubt that we would choose it, because this is what efficiency is about: the cost/benefit ratio. efficiency is the unit of measurement for instrumental values. the problem is that not everything is instrumental. if they are always in the service of others, it means that these others must stand on their own, otherwise we fall into an infinite regression. these are called "intrinsic values" or "fundamental values". they are the most important in life. they are essential values, values that have worth in their own right, without reference to others. think, for example, of dignity. or many others, such as health, life, beauty, well-being, justice, solidarity, etc. these are all intrinsic values. without them, life is meaningless [ ] . furthermore, they have the characteristic of not being measured in monetary units, nor is efficiency a criterion. "health is priceless" it has always been said; "true love is neither bought nor sold"; "only the foolish confuses value and price" said antonio machado. and the list could go on [ ] . we can now understand the importance of promoting a culture of old age. during our working life there is no doubt that the fundamental criterion must be efficiency, and therefore economy. but that is, at the same time, the least human part of life. the day is not far off when that part of our existence can be transferred to the robots. and the problem arises: what will we humans do then? will we have anything to do? older people have a fundamental mission in our society, and that is to take charge of promoting intrinsic values and passing them on to younger generations. it's not all about economics. it's not all about efficiency. there are other values, which moreover are the most important, the most human. conclusion: promoting a new culture of the elderly should lead us to avoid not only the discrimination that has occurred throughout western culture, and particularly in recent centuries, but also to give impetus to the promotion of intrinsic values, the most humane, the most important in the lives of individuals and societies. this is the very im-it is impossible to see the decrepitude of the elderly person represented. the poet menander coined a sentence that soon became famous and that plautus translated into latin: quem di diligunt, adulescens moritur, "those loved by the gods die young" (bacchides, - ). perfection is in youth, and old age is almost embarrassing. aristotle says that "disease is an acquired old age, old age a natural disease" (gen. an. b . it was important to remember this about the attitude of our culture, the western one, towards the elderly. they've never been held in high esteem. moreover, we can be seen that this esteem has been decreasing over time. this is demonstrated by the words we use to refer to this age group. "viejo" (old) comes from the latin vetus, the opposite of novus, both of which are terms that were designating things, not people. for people, the correct terms were senex and its opposite iuvenis. from senex comes our word "senescence", only used in a very limited sense today. cicero wrote a dialogue de senectute, using the correct term in his language. though, in the various spanish editions that exist, the translation is invariably sobre la vejez. (on old age). old age is not only an improper term, but also a derogatory one. no one sees it that way anymore, because they don't know about this process. but the transition from one term to another is an evident sign of the devaluation that the figure of the elder has undergone in western culture, even though it was originally already much lower than that of other cultures. if we add to this the spectacular increase in life expectancy at birth in the last century, it turns out that this devalued period, which until the beginning of the th century was almost anecdotal in the life of western society (it should be remembered that life expectancy at birth in spain had been stable at - years from the neolithic revolution to the end of the th century), has become a period of no lesser and sometimes greater duration than the active life of a person. so much so that human life today can very well be divided into three -year periods, the first of which is devoted to vocational training, the second to production, and the third.. it is not very clear to what, among other things, because the training we were given in the first years was aimed at being productive in the second phase, but we were never educated for the "third age". the third and final phase of life, which today has an average duration of years, is a continuous source of problems. it is, at least, in the economic order, as the present pension system seems difficult to maintain, and will be impossible in the near future. but, as important as this is, that's not the biggest problem. the most serious issue is that we have condemned the elderly to being a "passive class", whom inserso (the institute for the elderly and social services) has to ferry from one place to another in order to at least distract them. there is talk of discrimination and abuse of the elderly. in my opinion, the greatest discrimination is this, the fact that the elderly have been deprived of their own role in society; or, to put it another way, the total absence of what i have been calling the "third age culture" for some time [ ] . yes, third age culture. the third age has its own culture, distinct from the second age. portant active role that members of the third age have been entrusted with, given that in our culture the second age is obsessively consumed by the promotion of economic efficiency. does this matter for the control of infection in the elderly? as has already been said in previous interventions, the dynamic, active elderly, who feel that they have a mission to fulfil in society, are undoubtedly in a better position to avoid infections and to combat them when they do occur. it is not true that, as aristotle said, old age is a "natural disease". there are many reasons to claim that it is not merely a part of life, but in many ways the most important. and it will be even more so in the future. special considerations for antimicrobial therapy in the elderly fever and aging intraabdominal infection: diagnosis and treatment in the elderly patient intraabdominal infections in the elderly infections in nursing homes: epidemiology and prevention programs systemic inflammatory response syndrome is more associated with bacteremia in elderly patients with suspected sepsis in emergency departments emergency department (ed) utilization of oldest old men in a veterans care home in taiwan urinary tract infections in the elderly population bacteruria and urinary tract infections in the elderly bacterial pneumonia in older adults effect of bacteremia in elderly patients with urinary tract infection antibiotic prescribing for nonbacterial acute upper respiratory infections in elderly persons viral pathogens among elderly people with acute respiratory infections in shanghai, china: preliminary results from a laboratory-based surveillance respiratory syncytial virus burden among adults during flu season: an underestimated pathology respiratory syncytial virus and other respiratory viral infections references the world report on ageing and health: a policy framework for healthy ageing world report on ageing and health. world health organization las personas mayores en españa. datos estadísticos estatales y por comunidades autónomas ministerio de sanidad hallmarks of human "immunosenescence": adaptation or dysregulation? age and immunity: what is "immunosenescence altered host response and special infections in the elderly principios básicos sobre las infecciones en patología geriátrica clinical features of infection in older adults infections in elderly persons. an altered clinical presentation pneumonia in the elderly: empiric antimicrobial therapy infecciones en hospitales de larga estancia, centros residenciales y otras unidades geriátricas prevalence of healthcare-associated infections in long-term care facilities in catalonia. vincat program prevalencia de problemas de salud en la población asignada a atención primaria. principales resultados. actualizado el de marzo de epidemiologia general de las infecciones nosocomiales. sistemas y programas de vigilancia epine-pint prevalence survey of healthcare-associated infections and antimicrobial use in acute hospitals, ecdc healthcare cost and utilization project facts and figures number, percent distribution, rate, days of care with average length of stay, and standard error of discharges from short-stay hospitals, by sex and age: united states healthcare cost and utilization project, statistical brief # , agency for healthcare research and quality intensive care for critically ill elderly: mortality, costs, and quality of life. review of the literature a randomized trial of care in a hospital medical unit especially designed to improve the functional outcomes of acutely ill older patients trends in the burden of infectious disease hospitalizations among the elderly in the last decade time-series analysis of the relation between influenza virus and hospital admissions of the elderly in onin older adults with moderate to severe influenza-like illness clostridium difficile infection in the elderly: an update on management increase in clostridium difficile-related mortality rates fecal transplantation for treatment of clostridium difficile infection in elderly and debilitated patients fecal microbiota transplantation for recurrent clostridium difficile infection in the elderly: long-term outcomes and microbiota changes the burden of infection in long-term care infections in long-term care populations in the united states standardized infection surveillance in long-term care: interfacility comparisons from a regional cohort of facilities severe consequences of healthcare-associated infections among residents of nursing homes: a cohort study infection rate and colonization with antibiotic-resistant organisms in skilled nursing facility residents with indwelling devices european centre for disease prevention and control. protocol for validation of point prevalence surveys of healthcare-associated infections and antimicrobial use in european long-term care facilities - - version . . stockholm: ecdc antimicrobial prescribing and infections in long-term care facilities (ltcf): a multilevel analysis of the halt study healthcare-associated infections and antimicrobial use in long-term care facilities: the irish experience with the halt surveys burden of infections among , elderly in nursing . giménez o. los problemas de salud más frecuentes en atención primaria dm protocolo diagnóstico y tratamiento empírico en urgencias de las infecciones broncopulmonares en los ancianos y en pacientes inmunosuprimidos actualización en infecciones y atención primaria. fármaco salud com vacunación frente a la neumonía adquirida en la comunidad del adulto surveillance of infection burden in residential aged care facilities custo e caracterizacao de infeccao hospitalar em idosos characteristics and management of community-acquired pneumonia in the era of global aging influence of socioeconomic status on community-acquired pneumonia outcomes in elderly patients requiring hospitalization: a multicenter observational study clinical and economic burden of community-acquired pneumonia among adults in europe socioeconomic status, life expectancy and mortality in a universal healthcare setting: an individual-level analysis of > million catalan residents a population-based study of the costs of care for community-acquired pneumonia a composite of functional status and pneumonia severity index improves the prediction of pneumonia mortality in older patients estimating the proportion of healthcare-associated infections that are reasonably preventable and the related mortality and costs infection control issues in older adults guidelines for infection control in nursing homes: a delphi consensus web-based survey reduction in hospital admissions for pneumonia in non-institutionalised elderly people as a result of influenza vaccination: a case-control study in spain effectiveness of the mf -adjuvanted influenza vaccine in preventing emergency admissions for pneumonia in the elderly over years of age puntos clave en la asistencia al anciano fragil en urgencias sepsis in the emergency department: key points, controversies, and proposals for improvements in latin america grupo de trabajo evadur: eventos adversos ligados a la asistencia en los servicios de urgencias de hospitales españoles saturación de los servicios de urgencias. una propuesta desde el sistema para un problema del sistema la saturación de los servicios de urgencias: una llamada a la unidad la detección del paciente anciano frágil en el área de observación de urgencias estudio infurg-semes: epidemiología de las infecciones atendidas en los servicios de urgencias hospitalarios y evolución durante la última década the core curriculum and educaton committee for the international federation for emergency medicine informe anual del sistema nacional de salud (sns) impact of an educational program for the prevention of colonization of intravascular catheters impact of a pharmacist-driven education initiative on treatment of asymptomatic bacteriuria a formative research-guided educational intervention to improve the knowledge and attitudes of seniors towards influenza and pneumococcal vaccinations prevention of catheter-associated urinary tract infections in patients with hip fractures through education of nurses to specific catheter protocols educational vaccine tools: the french initiative e-learning education solutions for caregivers in long-term care (ltc) facilities: new possibilities. educ health (abingdon) report of working group : specialist training and continuing medical education/professional development in the infection disciplines guidelines for the evaluation and treatment of pneumonia executive summary of the diagnosis and treatment of urinary tract infection: guidelines of the spanish society of clinical microbiology and infectious diseases (seimc) european geriatric medicine society (eugms) and the world association for infectious diseases and immunological disorders (waidid) influenza vaccination in high-risk groups: a revision of existing guidelines and rationale for an evidence-based preventive strategy guidelines for the management of community-acquired pneumonia in the elderly patient updated vaccine guidelines for aging and aged citizens of europe clostridium difficile-associated disease: impact of the updated shea/idsa guidelines periprosthetic infection in elderly patients treated with hemiarthroplasty of the hip following intracapsular fracture. should we use antibiotic-loaded bone cement? social contact patterns and control strategies for influenza in the elderly protective effects of the -valent pneumococcal polysaccharide vaccine in the elderly population: the evan- study effect of a comprehensive infection control program on the incidence of infections in long-term care facilities the situation of vaccines for the prevention of infections in adults: an opinion paper on the situation in spain the efficacy of influenza vaccine in elderly persons. a meta-analysis and review of the literature efficacy of the herpes zoster subunit vaccine in adults years of age or older pneumococcal vaccination programs and the burden of invasive pneumococcal disease in ontario, canada pneumococcal meningitis in adults after introduction of pcv and pcv , israel infection prevention and control programs in us nursing homes: results of a national survey infection prevention in long-term care: a systematic review of randomized and nonrandomized trials cluster randomised controlled trial of an infection control education and training intervention programme focusing on meticillin-resistant staphylococcus aureus in nursing homes for older people a descriptive study of a novel pharmacist led health outreach service for those experiencing homelessness pharmacist adscription to intensive care: generating synergies a pharmacist-led program to evaluate and reduce polypharmacy and potentially inappropriate prescribing in older hiv-positive patients an automated, pharmacist-driven initiative improves quality of care for staphylococcus aureus bacteremia urine culture guided antibiotic interventions: a pharmacist driven antimicrobial stewardship effort in the ed impact of a pharmacist-driven protocol to decrease proton pump inhibitor use in non-intensive care hospitalized adults ed pharmacist monitoring of provider antibiotic selection aids appropriate treatment for outpatient uti pharmacist-driven antimicrobial optimization in the emergency department design and analysis of a pharmacist-enhanced antimicrobial stewardship program in thailand patient satisfaction from two studies of collaborative doctor-pharmacist prescribing in australia pharmacist interventions on antibiotic use in inpatients with respiratory tract infections in a chinese hospital a pharmacist-initiated program of intravenous to oral antibiotic conversion análisis sobre de adherencia al tratamiento en pacientes crónicos desde el punto de vista de la farmacia bone and joint infections in the elderly: practical treatment guidelines fungal urinary tract infections in the elderly: treatment guidelines analysing power and politics in health policies and systems latent influence networks in global environmental politics biblioteca sanitaria online de castilla y león. una apuesta por la integración national library of medicine. institute of health un perfil de las personas mayores en españa, . indicadores estadísticos básicos". madrid, informes envejecimiento en red nº características de la comunicación en el anciano decálogo para el buen trato a las personas mayores adultos mayores y medios de comunicación. ¿amigos o enemigos?. no solo arrugas microbiological comparison of hand-drying methods: the potential for contamination of the environment user, and bystander the effect of chlorhexidine in reducing oral colonisation in geriatric patients: a randomised controlled trial normas básicas de higiene del entorno en la atención sanitaria. camberra (autralia): desing one interacción entre la nutrición y las infecciones a nivel global: una revisión guía de buena práctica en geriatría. hidratación y salud. madrid beneficios de la actividad física en personas mayores. rev int med cienc activ fis deporte educación para la salud: infecciones y su prevención en personas mayores infection prevention and control in nursing homes: a qualitative study of decisión-making regarding isolation-based practiques grupo de vacunas de la sociedad española de geriatría y gerontología (segg) epidemiología general de las infecciones nosocomiales. sistemas y programas de vigilancia anales de la real academia de ciencias morales adherencia terapéutica (grupo oat) es, editor. madrid definitions of infection for surveillance in longterm care facilities surveillance definitions of infections in long-term care facilities: revisiting the mcgeer criteria comunidad de madrid. prevención y control de las enfermedades transmisibles en atención primaria. gráficas monterreina s a plan nacional frente a resistencia a antibióticos plan nacional frente a la resistencia a los antibióticos (pran) comunidad de madrid. guía de uso de antimicrobianos en adultos con tratamiento ambulatorio programa marco para el control de las resistencias a los antimicrobianos en la comunidad de madrid (resiste) resolución nº / , de de diciembre de , por la que se ordenan determinados aspectos del ejercicio profesional enfermero en el ámbito de la prevención y control de infecciones infection prevention and control in households nursing challenges and implications guía de aplicación de la estrategia mundial de la oms para la mejora de la higiene de las manos y del modelo "los cinco momentos de la higiene de manos medidas de prevención de la trasmisión de organismos entre pacientes hospitalizados. higiene de manos the hygienic efficacy of different hand-drying methods: a review of the evidence the authors declare that they have no conflict of interest. this publication has been funded by glaxosmithkline. key: cord- -b iltrqx authors: dichter, martin n.; sander, marco; seismann-petersen, swantje; köpke, sascha title: covid- : it is time to balance infection management and person-centered care to maintain mental health of people living in german nursing homes date: - - journal: international psychogeriatrics doi: . /s sha: doc_id: cord_uid: b iltrqx nan globally, the number of people infected with covid- is still increasing. with currently more than , confirmed cases, germany ranks sixth worldwide behind the usa, spain, italy, france, and the united kingdom (john hopkins university, ). severe courses of covid- with increased mortality are particularly evident in elderly people and those with chronic diseases like hypertension, diabetes, or coronary heart disease (wang et al., a; zhou et al., ) . people living in nursing homes seem to be at a particularly high risk of dying from covid- . between % and % of all people who died from covid- were nursing home residents in various european countries . although the validity of these early data must be questioned, it does indicate that nursing home residents are a particularly vulnerable group. in germany, approximately , people live in , nursing homes (bundesamt, ) . nursing home-specific data for covid- infections and deaths are not available, as in germany data are reported for nursing homes together with other institutions such as homes for disabled and dependent persons, shelters for homeless people, collective accommodation for asylum seekers, and prisons. in these populations, available data show n = , covid- cases, representing approximately % of all infections in germany. significantly, , ( %) of these people died, which is % of all covid- related deaths (robert koch institut, ). older people living in nursing homes are particularly vulnerable to infectious diseases such as covid- . the reasons for this are compromised physiological barriers (e.g. skin breakdown, use of catheters), immunosuppression, malnutrition, dehydration, functional impairments (e.g. incontinence, immobility) (stone, ) , hearing and vision impairment and cognitive impairment. moreover, there are risk factors at the institutional level that favor infectious diseases in nursing homes. these factors are staff shortage, sharing bathroom facilities, mutual social activities, and low preparedness for infection control (davidson and szanton, ) . in addition, in germany as in many other countries, there is a shortage of urgently needed personal protective equipment for nursing home staff, including masks and gowns. due to this particular vulnerability and the simultaneously increased lethality of covid- for old and chronically ill people, the recently introduced infection control measures for german nursing homes are particularly restrictive. the introduction of regional, state, and federal regulations to protect residents from an infection has led to bans on leaving and visiting nursing homes (state government of north rhine-westphalia, ). since mid-march, the doors have been closed to relatives and residents alike. this means that relatives or friends cannot visit residents, and residents cannot leave the nursing home property. with few exceptions, these restrictive rules also apply to health professionals, for example, physicians, physiotherapists or speech therapists, and service providers such as hairdressers who are not part of the regular nursing home staff in germany. moreover, group-based social activities are often cancelled completely due to the inability to guarantee a safety distance of . - m between persons according to the size of the room, the cognitive abilities of the residents, and/or residents' behavior (e.g. wandering). this also applies to meals that were previously shared together. depending on the federal state, further restrictions such as admission bans have been implemented. in north rhine-westphalia, germany's most populous state, new residents can still be admitted, but nursing homes have to provide a quarantine and isolation unit in addition to a regular care unit. these units must be separated both spatially and in terms of personnel, irrespective of the basic unit and personnel team structure of the facility. people without a suspected or confirmed sars-cov- infection are cared for in the regular care unit. residents recently admitted from hospital or home must be cared for in the quarantine unit for at least days. residents with a confirmed covid- infection have to be cared for in the isolation unit (ministry of labour health and social affairs northrhine-westphalia, ). in cases where people with cognitive impairment (e.g. dementia) and challenging behavior need to be isolated, this is usually done in a separate unit or room (e.g. in the rooms of a closed day care facility which can be a subsidiary facility of a nursing home) and often with a caregiver who is then responsible only for that particular resident. in times of staff shortages, such cases are a great challenge for nursing home care. nursing homes in germany are usually well occupied, although there are still some facilities that have twin rooms. therefore, these requirements can only be implemented by separating residents from everything they are used to: their personal rooms, trusted cohabitants, trusted caregivers as well as their normal daily structure and activities. the ban on visits for nursing homes represents a serious restriction on residents' rights to selfdetermination. thus, it is currently not possible to have personal contact with relatives, friends, and spouses who do not live in the same nursing home. possibilities for sharing personal fears (e.g. concerning the current situation) and worries and for talking about everyday topics are reduced to telephone or video calls. apart from direct contacts, any support that residents have received previously from relatives and friends is no longer possible, for example, company during walks outside, reading aloud newspaper articles or books, purchasing food and drinks as well as physical closeness (e.g. a hug, holding of hands). assistance at mealtimes, skin and hair care or, for instance, massaging an aching shoulder by relatives is currently not allowed. in addition, relatives and friends are missed as advocates, translators, and communicators of residents' needs. this is particularly dramatic as the nursing home residents often have a limited life expectancy; approximately % die within months (vetrano et al., ) . moreover, between % and % of nursing home residents are affected by dementia (helvik et al., ; rothgang, ) , a life-limiting disease requiring palliative care (van der steen et al., ). the dramatic consequences of the current visiting restrictions are highlighted by the fact that relatives and friends can no longer attend even dying residents. the number of people who feel lonely and depressed is already very high under normal conditions with % of nursing home residents with acute depression (kramer et al., ) and - % experiencing loneliness (drageset et al., ; nyqvist et al., ) . loneliness is associated with an array of health problems such as hypertension, cardiovascular disease, cognitive decline, depression, and early mortality (gerst-emerson and jayawardhana, ). moreover, social isolation is associated with an increased memory decline (read et al., ) . it can therefore be assumed that the current infection control measures clearly have negative consequences, especially for a resident's mental health status as a result of social isolation. if on one side of a care continuum there are restrictions and social isolation measures, on the other side of the continuum there is person-centered care. this can be defined as a holistic approach to care in a respectful and individualized manner, including how care is negotiated, and offering a choice through a therapeutic relationship. here, residents are empowered to be involved in health decisions as desired by the individual (morgan and yoder, ) . in spite of the current restrictive infection control measures, the principles of person-centered care must be implemented in nursing home care. therefore, infection management and person-centered care have to be weighed carefully in order to maintain the residents' social participation, mental health, and quality of life. nursing home residents need comprehensive information about the covid- pandemic and the resulting infection control measures. based on this information, residents and caregivers have to negotiate the implementation of infection management measures and to deal with the need for the provision of person-centered care under the current circumstances. moreover, several additional interventions are needed in order to reduce social isolation and its negative consequences for residents. residents must have assistance when making telephone and/or video calls with their relatives and friends. individual social activities must be offered more often by caregivers, and group-based social activities should be provided as long as the defined safety distance between the participants can be complied with (in germany . - m). if room sizes are limited, group sizes must be reduced accordingly. despite limited personnel resources, residents must be given the opportunity to walk or spend time outdoors and there must be opportunities for relatives and residents to see and talk to each other, in compliance with the infection management regulations. nurses must focus especially on detecting symptoms of covid- but also pay attention to the mental health problems of the residents. for this, it is essential to have interaction with the residents and to actively manage the care relationship in spite of face masks and perhaps other personal protective equipment. a reduced contact time between caregivers and residents, as is known, for example for contact isolated intensive care patients (kirkland and weinstein, ) , must be avoided. if mental health problems are identified, interventions to provide mental health and psychosocial support must be examined and implemented (wang et al., b) . in addition, personal end-of-life care must be guaranteed. for this purpose, personal protective equipment and comprehensive information, if possible for the resident and his/her relatives and friends, are necessary. the reported figures from official statistics as well as recent research show the widespread transmission of sars-cov- and the high lethality of covid- in nursing home residents (arons et al., ) . moreover, more than half of the residents with a positive covid- diagnosis are asymptomatic at the time of testing. these asymptomatic cases very likely contribute to the transmission of the virus. therefore, broad and frequent testing of all nursing home residents and their caregivers is recommended (arons et al., ; centers for disease control and prevention, ) . in addition, sufficient personal protective equipment is needed for nursing home staff and also for relatives and friends of residents. the measures seem to be of utmost importance as a basis to reduce the spreading of the sars-cov- virus and to reopen nursing homes for visits by residents' relatives and friends. sensible intermediate steps are needed to allow for the implementation of these measures. under the impact of the infection management regulations and their serious consequences for the social participation of nursing home residents, a group of researchers and practitioners are currently working on an expert-based guideline for germany coordinated by the german society of nursing science (dgp). this guideline is intended to offer recommendations for nursing homes in order to enable a maximum of social participation and quality of life even under covid- pandemic conditions (awmf, ). we are writing this commentary at a moment, when the impact of the covid- pandemic develops around us daily. just now, we can only rely on anecdotal knowledge about the current care situation in nursing homes. empirical studies are urgently needed to learn more about the situation of nursing home residents, their caregivers and relatives for this and especially for future pandemics. moreover, we agree with the position of the german network for evidence-based medicine that have recently called for a clinical-epidemiological database to be created by systematic testing, systematic documentation, andmost importantlymeaningful research concerning care models for pandemic situations that allow for a maximum of protection with a minimum of freedom restrictions (german network for evidence-based medicine, ). presymptomatic sars-cov- infections and transmission in a skilled nursing facility social participation and quality of life in residential care for the elderly under the conditions of the covid- pandemic discontinuation of transmission-based precautions and disposition of patients with covid- in healthcare settings (interim guidance nursing homes and covid- : we can and should do better loneliness and social support among nursing home residents without cognitive impairment: a questionnaire survey corona virus in our nursing homes -an evidence-free drama in three acts. [corona-virus in unseren pflegeheimen -ein evidenzfreies drama in drei akten loneliness as a public health issue: the impact of loneliness on health care utilization among older adults prevalence and severity of dementia in nursing home residents covid- dashboard by the center for systems science and engineering adverse effects of contact isolation ordinance on the regulation of new admissions and readmissions to nursing homes and respite care facilities and special forms of housing for people with disabilities verordnung zur regelung von neu-und wiederaufnahmen in vollstationären dauer-und kurzzeitpflegeeinrichtungen sowie besonderen wohnformen für menschen mit behinderungen einschließlich kurzzeitwohneinrichtungen der eingliederungshilfe zur verhinderung der weiteren ausbreitung von sars-cov a concept analysis of person-centered care social capital and loneliness among the very old living at home and in institutional settings: a comparative study social isolation and memory decline in later-life täglicher lagebericht des rki zur coronavirus-krankheit- (covid- ) [online] barmer gek pflegereport regulation against new infections with the corona virus sars-cov- (corona protection regulation) [online] [verordnung zum schutz vor neuinfizierungen mit dem coronavirus sars-cov- (coronaschutzverordnung -coronaschvo) integration of infection management and palliative care in nursing homes: an understudied issue white paper defining optimal palliative care in older people with dementia: a delphi study and recommendations from the european association for palliative care health determinants and survival in nursing home residents in europe: results from the shelter study clinical characteristics of hospitalized patients with novel coronavirus-infected pneumonia in wuhan dementia care during covid- clinical course and risk factors for mortality of adult in patients with covid- in wuhan, china: a retrospective cohort study key: cord- -mnt ot authors: medline, mph; a., hayes; l., vahedi; f., valdez; k., sonnenberg; j., capell; w., hayashi; a., klausner; md, mph; j. d., glick; z., title: evaluating the efficacy of stay-at-home orders: does timing matter? date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: mnt ot background: the many economic, psychological, and social consequences of pandemics and social distancing measures create an urgent need to determine the efficacy of non-pharmaceutical interventions (npis), and especially those considered most stringent, such as stay-at-home and self-isolation mandates. this study focuses specifically on the efficacy of stay-at-home orders, both nationally and internationally, in the control of covid- . methods: we conducted an observational analysis from april to may and included countries and us states with known stay-at-home orders. our primary exposure was the time between the date of the first reported case of covid- to an implemented stay-at-home mandate for each region. our primary outcomes were the time from the first reported case to the highest number of daily cases and daily deaths. we conducted simple linear regression analyses, controlling for the case rate of the outbreak. results: for us states and countries, a larger number of days between the first reported case and stay-at-home mandates was associated with a longer time to reach the peak daily case and death counts. the largest effect was among regions classified as the latest % to implement a mandate, which in the us, predicted an extra . days to the peak number of cases ( % ci: . , . ), and . days to the peak number of deaths ( % ci: . , . ). conclusions: our study supports the potential beneficial effect of earlier stay-at-home mandates, by shortening the time to peak case and death counts for us states and countries. regions in which mandates were implemented late experienced a prolonged duration to reaching both peak daily case and death counts. the coronavirus disease (covid- ) is an acute respiratory disease officially declared as a "public health emergency of international concern" by the world health organization (who) on january , . since the first case announced on december , , in wuhan, china, covid- has spread internationally with the eventual announcement of a global pandemic by the who on march , . healthcare systems and governments worldwide have been under pressure since this designation to implement strategies and containment measures against covid- , an unprecedented virus with challenges in all that is left to learn. extrapolation from epidemiological models of covid- has suggested that intensive physical distancing could "flatten the curve" and prevent the overloading of our health systems. social distancing measures, aimed at reducing contact between people, include school closings, stay-athome mandates, and government support for telecommuting, , and have become commonly adopted practices on a world-wide scale. these measures aim to reduce the frequency of physical contact between persons, thereby reducing the risk of the spread of covid- , which is known to be transmitted through respiratory droplets. various degrees of these social distancing measures were employed in the mitigation of previous respiratory viral pandemics such as the - influenza pandemic and the sars outbreak, when clear pharmaceutical treatments or vaccines were unavailable. although retrospective reviews of these overarching measures suggest overall unestablished efficacy in quelling the spread of disease, the challenges and impracticality of imposing these measures have long been acknowledged. , given the devastating economic, psychological, and social consequences associated with pandemics in . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) the copyright holder for this preprint this version posted june , . . https://doi.org/ . / . . . doi: medrxiv preprint general and with covid- specifically, , there is a need to clearly distinguish between the efficacy of different social distancing measures, and in particular, the efficacy of those considered most stringent such as stay-at-home and self-isolation mandates. pan et al. sought to evaluate the effectiveness of non-pharmaceutical interventions (npis) and found that a series of various public health interventions were temporally associated with the improved control of the covid- outbreak in wuhan, china. furthermore, their study concluded that the implementation of npis was associated with a reduction of the effective reproductive number (rt), defined as the average number of secondary cases per primary case at calendar time t , to below . on february , and to below . on march , . since then, many studies aimed at determining the efficacy of social distancing, mostly within the us, have demonstrated the protective effects of these measures on controlling the spread of covid- . , the objective of this current study is to add to the growing evidence base on this topic by evaluating the relationship between country-and us state-level stay-at-home orders and the spread of covid- . we quantify the time interval between a country or state's first reported case of covid- and its implementation of a stay-at home-order to assess any relationship with the time between the first reported case and peak burden of covid- , measured by both peak daily cases and deaths. . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) the copyright holder for this preprint this version posted june , . . https://doi.org/ . / . . . doi: medrxiv preprint we conducted an observational study from april to may . first, we collected available retrospective data online from select english-language ministry of health and local news websites regarding the date of implementation for stay-at-home orders in countries and us states included in the study. google was used as our primary search engine. specific terms used in our online searches included 'date of stay-at-home orders ,' 'non-pharmaceutical interventions covid- ,' and 'stay-at-home mandates.' we conducted a search for each respective country and us state analyzed in the study. for case and death counts for us states, we used official public health department websites for each respective state. for country-level data, we used who daily covid- situation reports as well as data presented on worldometer.com. stay-at-home orders were defined as regionwide restrictions of non-essential internal movement (commonly referred to as "lockdowns"). to assess the efficacy of stay-at-home orders, we measured the number of days between the implementation of a regional stay-at-home order and objective measures of the peak covid- burden for each country and us state. we chose two main outcome variables to reflect this peak, which included: . highest daily case count, . highest daily death count. the highest daily case count was defined as the largest number of . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted june , . . https://doi.org/ . / . . . doi: medrxiv preprint laboratory-confirmed cases and the highest daily death count as the largest number of new deaths attributed to covid- per day. our primary exposure was the number of days between the first reported case of covid- in a studied area and the date of nation-or state-wide restriction of internal movement. this variable was measured as both a continuous and categorical variable. each location, based on the number of days between its first case and its stay-at-home mandate, was categorized into one of three equal terciles: early, middle, or late, analyzed with the creation of dummy variables. in addition, based on the frequency distribution for both countries and us states, the earliest and latest % to implement mandates were also formed into their own categories. our primary outcome variables were the number of days from the first reported case of covid- to the peak of daily cases and to the peak of daily deaths, in each respective country and us state included in our analysis. we conducted simple linear regression analyses, controlling for the regional case rate of the outbreak which was defined as the number of new cases per , persons, on the day that the mandate was implemented. the analysis was conducted for both included countries and us states. we used spss version for our analysis with a significance level of . . . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted june , . . https://doi.org/ . / . . . doi: medrxiv preprint forty-two states with stay-at-home orders and the state of kentucky, which implemented a "healthy-at-home" mandate, were included in our analysis. there were eight states without stayat-home orders that were excluded from our analysis: arkansas, iowa, nebraska, north dakota, south dakota, oklahoma, utah, and wyoming. of the states included, the number of days between the first reported case and the stay-at-home mandate ranged from to days (fig. ) , with a mean of . days and a standard deviation of . days (fig. ) . forty-one countries with stay-at-home orders were included in our analysis. of the countries included, the number of days between the first reported case and the stay-at-home mandate ranged from to days (fig. ) , with a mean of . days and a standard deviation of . days (fig. ) . for both our country and us state-level-data, a larger number of days between the first reported case and the stay-at-home mandate was associated with a longer time to reach both the peak of daily cases and deaths for each respective region (tables a and b is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted june , . . https://doi.org/ . / . . . doi: medrxiv preprint were identified as the earliest % of regions to implement their mandates, respectively. classifying states and countries into categorical terciles yielded mixed results, elucidating stronger associations for state-level compared to country-level data. our study builds on the recent emerging epidemiological data supporting the efficacy of npis, and specific to our study, stay-at-home mandates, in the control of the covid- pandemic. , , , [ ] [ ] [ ] [ ] [ ] our analysis supports a protective effect of earlier implementation of stay-athome orders both globally and within us states. notably, when the timing of mandate implementation was analyzed as a continuous variable, the effect on timing to peak case and death counts was modest with an increase in the time to peak of approximately one day. by contrast, a relatively strong effect was demonstrated when we evaluated regions categorized as late mandate implementers, corresponding to the largest predicted prolongation in the number of days to peak daily case and death counts. this strong association supports the possibility of a "threshold" date or range of dates only until which an implemented mandate may be efficacious. strengths of this study include the temporality of the interventions and outcomes included in our analysis, which supports biological plausibility. furthermore, our study included multiple iterations of analyses to support the observed trend. our findings were replicated for both us states as well as for our included countries, which supports the consistency of the observed effect. finally, we accounted for the relative burden of disease at the time of each region's . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted june , . . https://doi.org/ . / . . . doi: medrxiv preprint mandate, by controlling for the case rate of disease for each country and us state included in our regression models. the main limitation of this study was its observational nature and the exclusion of other npis, possibly confounding, that were implemented in the various regions we analyzed. however, we assume that by virtue of including many different regions and by repeating our analysis in several different ways, we can assume that the overall preventative effect of these npis were evenly spread out across these regions. furthermore, another limitation of our study is that we did not account for the fidelity of and adherence to the implemented mandates which may have therefore biased our results. however, the directionality of this bias is unknown. finally, the differences between regions as well as changes in testing capacity within each respective region may have also largely impacted the results of this study, as alluded to in other epidemiological observational studies that have recently investigated this topic. , overall, our study supports the potential effect of earlier stay-at-home mandates in the control of the spread of covid- . while this effect was modest generally, regions that significantly delayed implementation of their stay-at-home mandates experienced a pronounced and prolonged delay in reaching both peak daily case and death counts of covid- . . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted june , . tables and figures . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted june , . . https://doi.org/ . / . . . doi: medrxiv preprint . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted june , . is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted june , . . * *significant results at p< . **models controlled for case rates per region, defined as number of new daily cases per , persons on the date of the implemented mandate . cc-by-nc . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) the copyright holder for this preprint this version posted june , . . https://doi.org/ . / . . . doi: medrxiv preprint the origin, transmission and clinical therapies on coronavirus disease (covid- ) outbreak -an update on the status covid- : mitigation or suppression? governmental public health powers during the covid- pandemic: stay-at-home orders, business closures, and travel restrictions disease mitigation measures in the control of pandemic influenza priorities for the us health community responding to covid- impact of non-pharmaceutical interventions (npis) to reduce covid- mortality and healthcare demand a review of coronavirus disease- (covid- ) non-pharmaceutical interventions for pandemic influenza, national and community measures economic and social impact of influenza mitigation strategies by demographic class the early impact of the covid- pandemic on the global and turkish economy the socio-economic implications of the coronavirus and covid- pandemic: a review association of public health interventions with the epidemiology of the covid- outbreak in wuhan the effective reproduction number as a prelude to statistical estimation of time-dependent epidemic trends. mathematical and statistical estimation approaches in epidemiology strong social distancing measures in the united states reduced the covid- growth rate statewide stay-at-home directives on the spread of covid- in metropolitan and nonmetropolitan counties in the united states social distancing to slow the u.s. covid- epidemic: an interrupted time-series analysis. medrxiv the benefits and costs of using social distancing to flatten the curve for covid- impact of policy interventions and social distancing on sars-cov- transmission in the united states. medrxiv inferring change points in the spread of covid- reveals the effectiveness of interventions strong social distancing measures in the united states reduced the covid- social distancing has merely stabilized covid- in the us. medrxiv impact of non-pharmaceutical interventions on documented cases of covid- . medrxiv key: cord- -vskolc g authors: shino, enrijeta; binder, michael title: defying the rally during covid‐ pandemic: a regression discontinuity approach date: - - journal: soc sci q doi: . /ssqu. sha: doc_id: cord_uid: vskolc g objective: do people set aside their partisan differences and rally around elected officials during a pandemic? president trump's delegation of responsibility to the states during the covid‐ pandemic placed governors on the frontlines of the battle; some have shined and garnered positive national attention, others have wilted under the pressure of the national spotlight. methods: we use regression discontinuity design and exploit a discontinuity in the state's political events to assess the support of a governor's response to the pandemic. results: using survey data from florida's registered voters, we find that governor desantis's approval dropped by percentage points following his “safer at home” order press conference on april . conclusion: our results suggest that under certain circumstances partisanship can blunt a “rally around the flag” effect. this finding provides context to understanding when and under which circumstances elected officials can expect increases (or decreases) in public support. new york announced their "stay-at-home" orders on march and , while florida's governor waited until surgeon general adams urged all states to follow suit (daugherty, ) . on april , at : pm, desantis announced the issuing of executive order - "safer at home." we use this event in florida politics to analyze how the public reacted to the preventative measures taken by the governor. using an original survey of florida registered voters, the main question we address in this study is how the florida governor's announcement of the "safer at home" order affected his public support. did floridians set aside their partisan views and rally around the governor during the pandemic? we employ regression discontinuity design to compare the public's support of how the florida governor managed the pandemic before and after the press conference. we find that, even in times of unprecedented crisis, partisanship affects people's perceptions of whether the pandemic is more of an economic or public health threat to our society. most importantly, we find that support for the governor dropped by percentage points after his announcement. this effect is primarily driven by a decrease in democratic support. for this study, we conducted an email survey of registered florida voters. the data collection began on march and ended on saturday, april , . it was administered via qualtrics and had a . percent response rate. the sample frame comprises , registered florida voters, years of age or older. the email addresses used for this survey were obtained from the florida division of elections' february update and were selected using probability sampling among registered voters in the florida voter file. the margin of sampling error for the total sample is ± . percentage points. variables such as partisan registration, sex, race, and age come from the voter file list. to ensure a representative sample of registered voters, the florida designated market areas were stratified. quotas were placed on each of these stratified areas to ensure a proportionate number of completed surveys from across the state. due to the unique population of miami-dade county, it was separated to create an th strata from the designated media markets. since the beginning of his term in january , florida governor ron desantis has had a high approval rating among both republicans and democrats in the state; in march , october , and even february , desantis's job approval was a doubledigit net positive among democrats. unlike other u.s. governors, whose approval ratings have increased during the covid- pandemic, desantis's approval rating dropped by points (mehta, ) . in an effort to take both health preventative measures and continue to keep the economy open, governor desantis's strategy of handling the pandemic has been criticized as slow and confusing (rohrer, ) . pictures of florida's crowded beaches with spring breakers had deadly consequences and garnered national ridicule (schorsch, ; mazzei and robles, ) , escalating floridians' anxiety of a severe virus outbreak in the state. "nearly , florida healthcare professionals signed an open letter to desantis pleading with him to take more aggressive actions to hinder the spread of the virus, including enacting a statewide shelter-in-place order" (allyn, ). desantis had also been criticized for lacking an original strategy for florida while being labeled "a 'mini-trump' governor who borrowed the president's playbook" (luscombe, ) . this media coverage and elite discourse likely played into desantis's divergent approval ratings. given that there is variation across different subgroups of the public on how they react to elected officials, often dependent on their level of economic, political, and personal considerations (sniderman, brody, and tetlock, ; krause, ; baum and kernell, ; baum, ) , we analyze the heterogeneity of the rally around the flag effect across different subgroups of the constituency. in table , we show whether democrats and republicans hold similar perceptions of covid- . referring to table , we find that percent of democrats consider covid- to be a greater public health impact than economic threat compared to . percent of the republicans. apparently, partisanship is affecting the public's perceptions of covid- as these numbers show that respondents are aligning their perceptions with their respective party's rhetoric. does partisanship affect their support for the governor's job in handling the virus? table shows support among a majority of republicans regardless of whether they consider covid- to be a greater economic or public health threat. for example, . percent of republicans who consider the virus to be an economic threat support the governor's handling of the covid- pandemic compared to . percent of the those who think it is more of a public health risk. conversely, . percent of democrats who think that the virus is more of an economic threat support the governor's handling of it, compared to only . percent of those who think it is a greater public health risk. clearly, partisanship has impacted the assessment of the governor's job in this circumstance. did the press conference and desantis's "safer at home" order affect the governor's support? to answer this question, our identification strategy utilizes a sharp regression discontinuity design, as explained below. we use a quasi-experimental regression discontinuity design to test how the approval of the governor's response to covid- discretely changed following the "safer at home" executive order. let each voter i in our random sample be characterized by a vector (y i , w i , d i ), where the scalar y i denotes the governor's support, the vector w i captures individual-level characteristics, d i = [x i > ], our treatment variable, is an indicator function equal to if the bracketed logical condition holds, and otherwise, and x i is our forcing variable. the forcing variable runs from − to hours, where (cutoff point) denotes the time when the governor held the "safer at home" order press conference, april , at : pm. the regression discontinuity approach assigns observations to the treatment and control groups based on a discrete threshold of our continuous forcing variable x i . that is, we assign observations to the treatment group if x i > and to the control group if x i < . the main identification assumption required for the regression discontinuity design is that the conditional expectation functions of the potential outcomes are continuous on the support of the running variable x i . hence we can test the approval of the governor's response to covid- by the value of the discontinuity of the expected value of the response at x i = (angrist and pischke, ) . we specify the parametric model at the individual level, estimating the local average treatment effect as follows: where is our parameter of interest that captures the approval of the governor's response to covid- . we also estimate a more flexible local regression model: where f is a function of x i , and we model f using a second-and third-order degree polynomials. in figure , we plot floridians' support for the governor before and after the press conference. the cutoff is the time of the press conference, april , at : pm. as shown in figure , floridians who responded to our survey before the governor's press conference to address the "safer at home" measure showed greater support for the governor compared to their counterparts who completed the survey after the state address. to be more concrete, the support for the governor after the press conference dropped by percentage points among all respondents. figure provides a general overview of the governor's support among all respondents but it does not highlight how partisanship is affecting this relationship. to understand which subgroup of floridians is responsible for this shift in the governor's support, we replicate figure using split-sample analysis by party affiliation. referring to figure (a), we find that republicans, as expected, had a high support rate for the governor before the press conference, about percent, and after the press conference it marginally dropped to percent. a similar pattern is observed with no party affiliates in figure (b) . as shown in figure (b), no party affiliates' support for the governor before the conference was about percent and after the conference it dropped to about percent. it should be highlighted that the decrease in the governor's support after the press conference is general support for governor before and after the announcement note: the dashed line is the cutoff point at the time when the governor held the press conference, april , , at : pm. hours before and after governor's speech probability of governor approval not statistically significant for either republicans or no party affiliates compared to their respective preconference support levels. the slight decline in the governor's support, in figures (a) and (b), bounced back up to its preannouncement levels several hours after the event. completely different support patterns are observed for democrats in our sample. as shown in figure (c), democrats' support for the governor was significantly lower compared to that of republicans and no party affiliates. democratic support for the governor seemed to have had an increasing pattern prior to the announcement and was followed by a drastic drop right after; figure (c). referring to figure (c), democratic support for the governor dropped immediately after the press conference and stayed stagnant for the next hours postannouncement. in table , we show the marginal effect for support for the governor by party affiliation. all estimates shown in panel a are estimated controlling for the respondent's age, race, gender, income, education, virus perceptions, risk of contracting the virus, financial concerns, and county fixed effects, while in panel b, we replicate the same models without county fixed effects to see how much of the effect is driven by county differences. as shown in table , democrats' support declined by percentage points after the press conference on april . to ensure that the effects we find are not due to nonlinearity in the governor support before and after the announcement, by party note: the dashed line is the cutoff point at the time when the governor held the press conference, april , , at : pm. each graph shows the split-sample description of the data patterns. hours before and after governor's speech probability of governor approval for npas ( )-( ) in appendices a and b. as shown in table , the republican decline in support for the governor is not statistically significant. in addition, the drop in support among no party affiliates appears to be statistically significant, but the effect goes away when we run sensitivity checks for nonlinearity. our results are consistent when we replicate our analysis without controlling for county fixed effects, as shown in table , panel b. ( ) in tables b -b ; * * * p < . ; * * p < . ; * p < . . to sum up, we find that people are still using their party identification lenses to view the world and form political expectations during the covid- pandemic. florida democrats did not rally and their support for the governor dropped after the "safer at home" announcement. apparently, the media and elite discourse (zaller, ; groeling and baum, ) blunted desantis's potential job approval gains. the fact that democratic governors such as andrew cuomo of new york and gavin newsom of california reacted faster, and the fact that the timing of the "safer at home" announcement coincided with the white house's marching orders, likely increased the partisan division between democrats and republicans in the state. overall, percent ( , respondents) of our respondents considered covid- to be a greater public health issue than economic threat and percent of respondents thought the state government's actions had not gone far enough to help fight the pandemic. leading up to the issuance of the "safer at home" announcement, there was uncertainty about how best to handle this novel pandemic; it is likely that floridians were holding out hope that a shelter-in-place order was not necessary. however, as soon as desantis finally issued the order, democrats blamed the governor for delaying the response to put in place preventative measures to protect public health. the decision to prioritize the economy over health and delaying the "safer at home" order likely hurt governor desantis's support most among democrats. moreover, baker and oneal ( : ) argue that "what appears to matter most in regard to the size of the rally effect is not the nature of the dispute itself but how effectively the white house manages the presentation of the dispute through presidential statements, prominent media coverage, and the garnering bipartisan support." even though florida was not hit as hard from the virus, governor desantis's handling of the situation has been heavily criticized. "desantis' bizarre decision to don just one glove during a recent briefing, drawing ridicule from the internet at large questioning whether he understood how to properly use protective gear" (schorsch, ) . hindering the public's perceptions of desantis's efforts also included banning reporters from the governor's briefings, inaccurate reporting of covid- cases, and a reliance on a very partisan president's statements. this combination of actions, elite criticism, and media coverage has led to a stark partisan divide and blunted positive reviews that typically accompany statewide or national emergencies. ( )-( ) are sensitivity checks for any possible nonlinearity in the data; * * * p < . * * p < . * p < . . ( )-( ) are sensitivity checks for any possible nonlinearity in the data; * * * p < . * * p < . * p < . . ( )-( ) are sensitivity checks for any possible nonlinearity in the data; * * * p < . * * p < . * p < . . ( )-( ) are sensitivity checks for any possible nonlinearity in the data; * * * p < . * * p < . * p < . . ( )-( ) are sensitivity checks for any possible nonlinearity in the data; * * * p < . * * p < . * p < . . ( )-( ) are sensitivity checks for any possible nonlinearity in the data.; * * * p < . ; * * p < . ; * p < . . -coronavirus perceptions is coded if the respondent thinks it will have a higher impact on the public health, and if it will have a higher impact on the economy. -risk of contracting the virus is coded if the respondent and someone in his or her household is at higher risk of contracting the virus, and if nobody in the household is at higher risk. -financial concerns is coded if the respondent is concerned about personal finances, and otherwise. -education is coded if the respondent has a high school or lower degree, some college degree, college degree, and a graduate degree. -household income is coded if the respondent's household income is up to $ , , if the income varies from $ , to $ , , if the income varies from $ , to $ , , and if it is higher than $ , . -party of registration is coded for democrats, for republicans, and for no party affiliates. -race is coded for whites, for blacks, for hispanics, and other race. -age is coded for - years, for - years, for - years, for - years, for - years, and for years or older. -gender is coded for male and for female. there has been a lot of talk lately about the new coronavirus (covid- ) and the national emergency. i'd like you to tell me whether you approve or disapprove of the job governor how concerned are you personally about contracting the coronavirus (covid- )? • very concerned • somewhat concerned • not very concerned • not at all concerned covid- )? • yes, i am higher risk • yes, someone in my household is higher risk • yes, both myself and someone in my household are higher risk • no, nobody in my household is higher risk . how concerned are you about the impact of coronavirus (covid- ) on your personal finances? • very concerned • somewhat concerned • not too concerned • not at all concerned . which is a bigger concern for you, the public health effects or the economic impact of the coronavirus (covid- )? • public health effects • economic effects what is your annual household income? • less than variable information coded if respondent approved of the job governor ron de-santis is doing to address the pandemic, and if disapproved. • independent variables: references allyn, bobby. . fact check: trump praises florida governor despite criticism of coronavirus response mostly harmless econometrics: an empiricist's companion patriotism or opinion leadership? the nature and origins of the 'rally'round the flag effect' the constituent foundations of the rally-round-the-flag phenomenon economic class and popular support for franklin roosevelt in war and peace trump blames hospitals for masks and ventilator shortages intergroup relations assessing the president: the media, elite opinion, and public support as desantis defers to white house on stay-home order, a top u.s. official urges one crossing the water's edge: elite rhetoric, media coverage, and the rally-round-the-flag phenomenon joining and leaving the rally: understanding the surge and decline in presidential approval following / explaining presidential popularity: how ad hoc theorizing, misplaced emphasis, and insufficient care in measuring one's variables refuted common sense and led conventional wisdom down the path of anomalies voters, information heterogeneity, and the dynamics of aggregate economic expectations rallying around the flag: foreign policy events and presidential popularity florida's slow response: a 'mini-trump' governor who borrowed the president's playbook political drama, economic conditions, and the dynamics of presidential popularity the costly toll of not shutting down spring break earlier manipulation of the running variable in the regression discontinuity design: a density test most americans like how their governor is handling the coronavirus outbreak presidential popularity from truman to johnson war, presidents, and public opinion crowded beaches, confusion amid coronavirus orders as desantis won't mandate statewide lockdown coronavirus vs. governors: ranking the best and worst state leaders how ron desantis is winning the pandemic battle, but losing the perception war reasoning and choice: explorations in political psychology the nature and origins of mass opinion key: cord- - lyfc authors: levin, r.; chao, d. l.; wenger, e. a.; proctor, j. l. title: cell phone mobility data reveals heterogeneity in stay-at-home behavior during the sars-cov- pandemic date: - - journal: nan doi: . / . . . sha: doc_id: cord_uid: lyfc as covid- cases resurge in the united states, understanding the complex interplay between human behavior, disease transmission, and non pharmaceutical interventions during the pandemic could provide valuable insights to focus future public health efforts. cell-phone mobility data offers a modern measurement instrument to investigate human mobility and behavior at an unprecedented scale. we investigate mobility data collected, aggregated, and anonymized by safegraph inc. which measures how populations at the census block-group geographic scale stayed at home in california, georgia, texas, and washington since the beginning of the pandemic. using nonlinear dimensionality reduction techniques, we find patterns of mobility behavior that align with stay at-home orders, correlate with socioeconomic factors, cluster geographically, and reveal subpopulations that likely migrated out of urban areas. the analysis and approach provides policy makers a framework for interpreting mobility data and behavior to inform actions aimed at curbing the spread of covid- . the ongoing covid- pandemic has had a devastating impact on mortality [ ] and economic activity [ ] leading to increased food insecurity, poverty, and gender inequity [ ] . most public health interventions attempting to arrest or mitigate the spread of the disease caused by the severe acute respiratory syndrome coronavirus are non-pharmaceutical interventions aimed at decreasing transmission by changing people's behavior. for example, every state in the united states (us) issued mandatory or advisory stay-at-home orders between march and may of [ ] . however, characterizing changes in behavior during the covid- pandemic, whether due to adherence to stay-at-home orders, loss of employment, or non-pandemic related factors, is challenging. in this article, we use cell-phone mobility from safegraph inc. to identify the heterogeneous mobility behaviors during covid- in four states and reveal consistent motifs across states, within a state, and even within urban centers. moreover, the modeling and analysis also point to geographic areas with populations that are young and highly mobile. we believe the approach and insights in the work could be leveraged by local public health officials to better target educational campaigns by geographic area and socioeconomic status. cell phone location data is a relatively new but promising way to quantify human movement. the locations of cell phones can be tracked by service providers or applications installed on the data aggregation and nonlinear dimensionality reduction for . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . we obtained mobility data from safegraph, inc. safegraph aggregates mobile device gps data from various sources and produces anonymized datasets aggregated at the census block group (cbg) level. these data can be obtained free-of-charge for non-commercial use by joining their covid- data consortium . in this study, we estimate the number of people who stay at home each day by dividing the number of mobile devices that do not leave their homes by the total number of devices in each cbg (i.e., completely home device count divided by the device count) [ ] . we used data covering days of mobility, starting from february , . we define the daily proportion of devices seen near their homes to be the number of devices in each cbg detected in their home cbg (destination cbg = origin census block group) divided by the number of devices associated with the cbg (device count). the proportion of devices that are only detected away from their homes each day is minus this proportion. figure b . illustrates this daily stay-at-home fraction for five cbgs. we use the most recently released versions of the safegraph social distancing data, which is version . ("v ") for dates before may , and version . ("v . ") for later dates [ ] . around may , safegraph began using "rolling windows" to assign the home census block group of devices instead of batch-updating only at the first of each month [ ] . we obtained us population data from the american community survey (acs) product of the us census bureau, accessed using the r package tidycensus [ ] . we used table b for total population size and population by age estimates by cbg, table b for median household income, table b for number currently enrolled in college, table b for renter vs. owner-occupied housing units, and tables b , b , and b for "geographic mobility" (living in same house as last year). we computed a cbg's population density by dividing the population estimate by the land area of the cbg as reported by the cartographic boundary files. the us census provides cartographic boundary files, which define simplified shapes of geographic entities designed for plotting. the shapefiles were downloaded from: https:// www.census.gov/geographies/mapping-files/time-series/geo/cartographic-boundary. html. the detailed map of seattle was generated using esri's "world topo map" [ ] obtained using r's openstreetmap package [ ] . the singular value decomposition (svd) is a standard linear matrix factorization technique that can be used to reduce the dimensionality of a data matrix [ , ] . using the safegraph timeseries data ( § . ), we construct a mobility data matrix for each state. each state's data matrix has rows (days of mobility data), but a different number of columns depending on the number https://www.safegraph.com/covid- -data-consortium . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) the copyright holder for this preprint this version posted november , . ; of census blocks ( , , , and for california, georgia, texas, and washington, respectively). figure c . illustrates the concatenation of time-series data for washington state. for data matrix normalization, each mobility time-series is mean subtracted. we perform a standard svd to find a reduced order set of singular vectors and values for dimensionality reduction; see supplement §s for more details. laplacian eigenmaps are a nonlinear manifold learning method that can identify a low-dimensional embedding which optimally preserves local structure of a high-dimensional data manifold [ ] . to construct an m-dimensional embedding, the method uses m eigenvectors of the nearest-neighbors graph laplacian corresponding to the smallest non-zero eigenvalues. the resulting embedding is optimal in the sense that "close" data points on the original manifold are represented by points that are close in the m-dimensional euclidean embedding space; see equation ( . ) in [ ] for more details. we also investigated a wide variety of other nonlinear dimensionality reduction techniques (supplement §s ). the laplacian eigenmaps algorithm was implemented using the spectralembedding function from sklearn.manifold module of scikit-learn package [ ] in python . in this work, we used neighbors for the n neighbors parameter. varying the number of neighbors around did not significantly change the results for any of the four states (supplement §s ). the effective dimensionality of the embedding was identified using the trustworthiness metric [ ] which captures the extent to which a dimensionality reduction technique retains the local structure of the original data manifold from the higher-dimensional space. trustworthiness was computed as a function of the laplacian eigenmap embedding dimensionality; a knee-point detection algorithm was then used to identify the optimal number of dimensions. the supplement §s provides a detailed description of this analysis for each state. to implement the trustworthiness metric, we used the function trustworthiness from sklearn.manifold of scikit-learn package [ ] in python with default parameters ( neighbors, to capture the local structure). for the knee point detection, we used the kneedle algorithm implemented in kneed package [ ] . to interpret the low-dimensional structure revealed by the laplacian eigenmaps, we apply gaussian mixture model (gmm) clustering [ ] . the gmm is a latent variable model which assumes that the data has sub-populations or clusters which follow gaussian distributions with parameters governing the centroid location and covariance structure of each cluster. gmms were implemented using the mclust [ ] package of r (version . [ ] ). we leverage the probabilistic formulation of the gmm model as a natural way to quantify uncertainty of the cluster assignment. a more detailed description of the gmm model and uncertainty quantification is provided in supplement §s . we used bayesian information criterion (bic) to identify the optimal number of gmm components [ , , ] . we applied the knee-point detection to the bic curve using the kneedle algorithm implemented in kneed package [ ] ; see the supplement §s for more details. to test the difference of the socio-economic covariates distributions between clusters, we used the kolmogorov-smirnov [ , ] test as implemented in kstest function of scipy.stats package . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . figure : results are consistent across four states. column i. presents the d laplacian eigenmap visualization of the data manifold. column ii. shows geographic maps. column iii. presents average mobility time series for each cluster. clusters are highlighted in color. it is noted that clusterig was done in d (optimal) embedding space. in python . to determine the significance of trends of covariates associated with cbgs in clusters identified by the gmm, we used jonckheere.test from clinfun package [ ] in r using permutations and assuming decreasing trends from cluster "a" to cluster "d". . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint the safegraph stay-at-home data offers insight into the levels and trends of human mobility at the census block group (cbg) geographic scale during the covid- pandemic in the united states ( figure ). nonlinear dimensionality reduction of the time-series data from washington state revealed a low-dimensional embedding providing insight into the consistency of mobility behavior across cbgs ( figure d .). moreover, the embedding and stay-at-home behaviors for washington are qualitatively similar to those of georgia, texas, and california ( figure ). the optimal embedding dimension was for all four states, determined by the trustworthiness metric ( § . ). a similar low-dimensional structure in the time-series data can be found with a diversity of nonlinear dimensionality reduction methods; see § . and supplement §s for more details. the low-dimensional embedding provides insight into the similarity of stay-at-home behavior between cbgs. figure provides a visualization in three embedding dimensions of this coherent structure; note that for each state, certain cbg time-series are more similar to each other and the visualization indicates a large density of cbgs along a distinct, tubular data manifold. fitting a gaussian mixture model (gmm) to the stay-at-home time-series in the -dimensional embedding space identifies clusters for the four states that we analyzed (table ). figure illustrates how the clustering model groups cbgs in the embedding space (left column); the average mobility time-series for each cluster (right column) highlight the difference in stay-at-home behavior by cluster within a state and also the consistency across all four states. the cluster assignments were robust to model initialization ( § . ) and had low associated uncertainty values (as quantified in §s , § . ). one clear difference between the clusters is their average level of mobility. for example in washington, the average staying-at-home level increases from the cbgs in the dark blue cluster (cluster d) to the bright orange cluster (cluster a); see figure f ., and representative cbg timeseries in each cluster in figure b . the order of the clusters along the dense data manifold in the embedding space is aligned with their mean staying-at-home fraction. the average time series for clusters d through a do not intersect and are aligned in increasing order on the y-axis. however, the purple cluster e does not follow a similar trend with respect to the dense data manifold, nor the average time-series. for this cluster, we find that the fraction devices staying home increases sharply in may . a similar motif consistently occurs across each state; cluster e primarily captures outliers from the primary bulk trends that are continuously distributed across clusters a, b, c, and d. those outliers are linked to a variety of important sub-populations, explored in more detail in § . . the cbg clustering and average time-series by cluster also indicate that the change of behavior over time is different across clusters before april. the speed at which cbgs increased their stay- . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . at-home behavior during a transition period between march and april (quantified by the slope of a linear fit of the cbg mobility time series during the transition period) is directly correlated with cbg cluster assignment. moreover, the distributions of that speed are statistically significantly different: for every pair of clusters, we were able to reject the null hypothesis that the speed distributions were the same at the significance level α = . using kolmogorov-smirnov test. this is also directly evident by looking at this time period and the average stay-at-home trends by cluster (figure ). for example, the cbgs from the least mobile cluster a also increased their staying-at-home level the fastest. the cbgs within each mobility cluster (defined in § . ) are geographically connected and have consistent patterns across all four states. the second column of figure illustrates these broad trends which are most visually evident in the distinction between urban, peri-urban, and rural areas. for example in washington, the seattle area cbgs mostly belong to the bright orange and light orange most-staying-at-home clusters a and b, the same is true for nearby bellevue . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint and redmond. similarly, in texas three large orange regions correspond to dallas, houston, and austin. in georgia, the distinct orange area on the map corresponds to atlanta and in california we see orange colors around san francisco, san jose, and los angeles area. likewise, blue colors -clusters c and d with lower stay-at-home levels -form continuous regions in rural areas on the state maps. cbgs that are close geographically tend to have similar mobility patterns. within each state, there is a stark contrast between urban and rural areas (figure ). for example, in washington, the large metropolitan areas around seattle and bellevue are colored orange (clusters a and b) as opposed to larger rural cbgs which belong to blue clusters (c and d). large cities like spokane or yakima also have dense orange coloring (figure ) suggesting that changes in behavior with urban centers are similar despite being geographically quite distant from each other. the time series column of figure shows that urban areas (orange clusters a and b) stay at home significantly more than rural areas (blue clusters c and d). this observation is consistent across all four states. this analysis also identifies heterogeneity within the geographic scale of urban centers and rural areas. for example, in dallas and seattle there are urban cbgs that belong to blue clusters c and d indicating that they stay at home less than the surrounding areas ( figure ). moreover, populous cities such as seattle, atlanta, austin and dallas have distinct geographic groupings of cbgs for clusters a and b within the urban area. the first column of figure clearly presents a smooth transition in the laplacian eigenmap embedding space between the bright orange cluster a that stays at home the most to the dark blue cluster d that stays at home the least. remarkably, we observe the same on the geographic map. for example, there is a rough radial pattern around dallas and austin: bright orange cbgs densely cover the city center and are replaced by light orange, then light blue and eventually dark blue as the distance from the city center increases (see figure ). that is, the transition is quite consistent -it covers the intermediate colors and the stayat-home level gradually decreases as distance from the city increases suggesting a more nuanced interpretation about the continuity of behavior across cbgs within urban centers supported by the geometric structure of the data manifold. in the greater seattle area, the transition is substantially less pronounced especially moving eastward from downtown; note that both a large urban area (bellevue) and suburb (redmond) exist to the east of seattle, both with a higher income population and the home to microsoft. despite the optimal number of clusters to be for each state ( § . ), relaxing this criteria and allowing for more clusters provides more granular information with urban areas while maintaining consistency with the cluster model. this also follows the intuition provided by the illustrations of the nonlinear embedding illustrated in three dimensions (left column, figure ) ; namely, the dense tubular structure is broken into finer grained clusters enabling higher resolution comparisons between cbgs framed along this nonlinear embedding. supplement §s provides details on increasing the number of clusters. further, a continuous mapping of the data along the dense tubular structure of the data manifold shows the smooth transition across urban, peri-urban, suburban, and rural areas; see supplement §s for more details. in contrast, the purple cluster e is not wholly on the tubular structure and does not exhibit the same geographically connected characteristics as the other clusters. more detail is provided on this cluster and the possible difference in subpopulation structure in § . . clusters a and b, which on average stayed home the most, included the most densely populated cbgs, while clusters c and d included the more sparsely populated ones (figure ) . high . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . ; population density is generally an indication of urban populations and low density of rural areas (see maps in figure ). the cbgs in clusters a and b also had the highest median household incomes (figure ) . in all states, the median stay-at-home fraction, population density, and household income of cbgs had a consistently decreasing trend from clusters a to d, and the jonckheere-terpstra test rejects the null hypothesis that these four clusters come from the same distribution of values (p< . ). cluster e did not follow these trends and appeared to cover a wider range of values (figure ). the boxplots present the interquartile range (boxes) and median values (center horizontal lines) of the covariate values for cbgs in each of the five clusters. whiskers span the % range. the "mean stay at home" fraction of a cbg is the mean of the daily percent of mobile devices that stayed completely at home during the time period analyzed. cluster e has a higher proportion of people who we expect to have high "geographic mobility" (i.e., change residences frequently). using acs estimates, cbgs with a low proportion living in the same house in the previous year or a high proportion of renters, people enrolled in . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . ; undergraduate or professional degree programs, or who are "young adults" ( to years old) tended to be in cluster e ( figure ). in california, the proportion of people with high geographic mobility appears to be higher in cluster a than in cluster b. upon closer investigation of the location of clusters in the city of seattle, washington, the spatial distribution of clusters d and e is consistent with the associations described above (figure ). the area surrounding the university of washington, where a large number of undergraduate and graduate students live, is in cluster e, while the university itself is in cluster d (figure , center of map). cluster e also includes downtown and lake union, where a recent influx of young tech workers fueled the development of new apartments. interestingly, in addition to students and young tech workers in seattle, cluster e also indicates some very high median income populations on the waterfront of bellevue and kirkland that were also highly mobile during this period. cluster d includes "sodo", the industrial area southwest of downtown, which is less affluent than the populations to the west, east, and north. the available safegraph dataset does not allow one to track the movements of individuals, but there are trends consistent with high population turnover. one can track the number of mobile devices that are detected by safegraph each day but not in their "home" cbg on a given day, which we call "never-near-home" devices. these devices could be on a trip away from home or they could have moved away entirely. in march, the fraction of never-near-home devices was highest in cluster e (figure and supplement §s ). on april and again on may , the number of devices never near home drops sharply in cluster e but not in the other clusters. this behavior is consistent with the owners of these devices moving to a new residence and safegraph re-assigning these devices to the new residence on the first day of a subsequent month. safegraph defines a person's "home" to be the location where the mobile device is detected most at night (from pm to am) over a -week period [ ] . if a person spends enough time in a new location, that new location can become the device's "home". these home locations were updated by safegraph at the start of each month until mid-may, when safegraph changed its procedure for assigning home locations to devices [ , ] . the high proportion who were never near their "homes" in march and april and the sharp drops in these fractions on april and may in cluster e, and to a lesser extent in cluster d, are consistent with this population moving away. in california, cluster a also has a noticeable decline on may (supplement § s ), which could indicate a high-income group that is geographically mobile. if a large number of people in a region move away, the devices will appear to be "away from home" because their home locations are out-of-date. these clusters will appear to be staying at home less than they really are. this batching artifact appears to be resolved in may , and the stay-at-home fraction in cluster e rises relative to the other clusters. we investigated the sensitivity of our results to the methodological approach. the cluster assignment for the gmm in the dimensional embedding space is robust. for every state, the maximum uncertainty is below % while the third quartile of the cluster assignment uncertainty is close to zero; at least % of the cbgs are well separated by a gmm in the -dimensional embedding space. we also found the cluster assignments, number of clusters, and overall cluster . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . ; figure : proportions of census block groups in each cluster by population characteristics associated with geographic mobility. the fraction of a cbg's population associated with the characteristic is plotted on the x-axis. cbgs are partitioned into equallyspaced bins, defined by the proportion of each cbg's population having the characteristic in % increments. the numbers of cbgs belonging to each bin are printed along the top of each panel. the proportion of cbgs in each cluster is plotted as vertically stacked bars for each bin (with cluster a in dark orange on the bottom through cluster e in purple on top). fitting was not impacted by the fitting procedure for the non-convex gmm objective function [ ] . however, given the intrinsic structure of the data (figure ), the quantification of uncertainty for clustering is consistent with the geometry of the mobility data being more continuous than discrete across clusters a,b,c,d. for example, the uncertain cbg assignments are linked to the boundaries of clusters on or near the tubular data structure. the number of clusters and cluster assignments . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . ; figure : clusters in the seattle metropolitan area. census block group boundaries are outlined. cbgs belonging to clusters d and e are highlighted in dark blue and purple, respectively. were optimized according to a standard approach which balances model fit and parsimony( § . ), but the number of clusters could be changed depending on a desired level of granularity or modeled as a continuous manifold (supplement §s ). it's worth noting in contrast that clustering in the linearly reduced space is highly uncertain with cluster assignment and number of clusters being sensitive to optimization initialization and procedure; for more details see supplement §s . we also found consistent results using alternative dimensionality reduction techniques such as locally-linear embedding and isomap. for each of the other nonlinear dimensionality reduction techniques, a similar dense tubular data manifold was present in the lower dimensional embedding space (supplement §s ). furthermore, the trustworthiness metric and knee point detection indicated all three manifold learning methods agreed that the effective dimensionality of the embedding was between and . our results are consistent with other studies linking demographic characteristics to cellphone mobility data during the sars-cov- pandemic. for example, in a recent study using the mobile device data from multiple sources, mobile devices from the highest income areas stayed home least before the pandemic and the most in late march [ ] . in the metropolitan area of atlanta, georgia, the populations that stayed home the most tended to have higher household incomes . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . ; figure : the fraction of devices that are only away from their homes each day. the medians and inter-quartile range of each day's values are shown for each cluster in washington state. and higher education levels [ ] . both of these studies hypothesize that these trends are due in part to the ability of people with high-paying jobs to work from home. a survey found that about half of adults in seattle switched to telework because of covid, with high-income households making the change far more than lower-income ( . % in households making >$ , per year and . % among those making <$ , ) [ ] . a recent study using another source of cell phone mobility data found that mobility was reduced more in urban than rural england [ ] , indicating that these trends could generalize beyond the united states. several related studies cluster mobility time series by a single demographic characteristic selected a priori, such as income [ , ] or population density [ ] or party affiliation [ ] , to demonstrate behavioral differences with respect to that characteristic. alternatively, one could reduce the time series to a summary statistic, such as average stay-at-home level over a particular time window, and study the relationship between that metric and several demographic covariates. in contrast, our methodological approach is broader; we measure similarities between complete . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. the copyright holder for this preprint this version posted november , . ; time series, which allowed us to identify population clusters that had a distinct change in behavior, which would have been hidden if we had clustered by average behavior over time. notably, we have identified features in the safegraph stay-at-home data that strongly suggests a mass migration out of several major metropolitan areas, especially in cbgs that have high proportions of young adults, renters, or students ( § . ). the closure of college of campuses and widespread job losses in march and april led many, especially young adults, to move [ , ] . moreover, the map presented in figure also matches our own intuition of where students of university washington live, both adjacent to the university as well as more distant rental housing along bike and metro commuting lines (all authors of this manuscript live in the greater seattle area). similarly, the high-migration census block groups identified near south lake union tends toward a younger, professional population working at technology companies such as amazon, and cbgs on the waterfront with high income populations in nearby cities such as bellevue and kirkland have a similar outward migration trend. identifying the population that moved early in the pandemic is a direct consequence of using a data-driven, equation-free approach. the approach has been integral to revealing the heterogeneity, but also the consistency, of mobility patterns across california, georgia, texas, and california; it has enabled a multi-scale geographic perspective on behavior allowing insights at the state, urban-rural, peri-urban, and suburban scale. recent efforts have also utilized clustering of mobility time-series data specifically for analyzing safegraph stay-at-home data in atlanta [ ] . our approach, though, is substantially broader in scope; identifying the low-dimensional embedding of the data enables a characterization of the geometric structure and the relatedness of each cbg mobility behavior. moreover, we found utilizing a nonlinear dimensionality reduction techniques such as laplacian eigenmaps for analyzing mobility time-series data is essential (supplement §s ) mirroring recent developments from dynamical systems focused on the development of equationfree methods for analyzing measurement data collected from complex systems [ ] . we have also leveraged clustering as a tool to interpret the similarity of mobility behavior between cbgs even in the reduced nonlinear embedding; we found that clusters allowed for comparisons of mobility characteristics (figure ), generalization across four states (figure ) , and also correlation with socioeconomic factors (figure and figure ). the nonlinear embedding, however, offers a more nuanced perspective about the similarity of mobility behavior between cbgs. for example, the visualization in three dimensions and the clustering results suggests a much smoother and continuous geometric structure of relatedness for cbgs assigned to clusters a,b,c,d (figure and § ). this helps frame the clustering results and socioeconomic factor correlation analysis. further, the embedding provides a richer characterization of the underlying complexity in mobility behavior. we acknowledge several limitations of the mobility data and challenges in linking behavior to demographic variables. safegraph aggregates mobility data from many uncoordinated sources on the locations of millions of cell phones. these phones are not systematically tracked, and the gps data might not be precise. the data are then aggregated by census block group and filtered to preserve the privacy of the mobile device owners. it is difficult to ascertain how well a set of mobility data represents the general population [ , ] . different states, and segments of the population, have different levels of coverage that are hard to correct for [ ] . this is further complicated by likely gaps in coverage for high-risk populations such as migrant agricultural workers. however, the associations we found between mobility and other factors are consistent with those found in other datasets and are quite plausible. we studied the fraction of mobile devices that stayed at home each day, but this is just one metric than can be derived from the mobility data. other measures, such as the mean length of time spent outside the home, the distance traveled from the home, or even the number of trips to stores, could provide additional insight into the population's response to the pandemic. the demographic data in this study was from the american community survey, which we believe generally reflects the population in but might not accurately characterize the demographics of the most rapidly changing areas. we cannot establish the direct cause of the differential reductions in mobility using these data. we use demographic and socioeconomic variables at the census block group level, which could lead us to ecological fallacies, and many of these variables are tightly linked, thus, disentangling their effects is not straightforward and could be counterproductive. despite these challenges, population mobility data and connections to behavior can inform public health policy makers. population behavior is a key component to understanding disease transmission dynamics; mobility data and the methods contained in this article helps quantify the change in population behavior during the pandemic. policy makers can use this tool to assess the impacts of policy, especially important as covid- cases start to resurge in the united states during a period of quarantine fatigue. we have also demonstrated that these data, analyses, and setting-specific information can provide epidemiologically relevant insights such as we uncovered around urban migration events. we believe the research in the article will provide insights for policymakers as they consider more modern, optimized, and targeted intervention strategies. dlc, ew, and jlp conceived the study, dlc and rl conducted the analyses, dlc, rl, ew, and jlp wrote the manuscript, dlc, rl, and jlp wrote the supporting material. . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) the copyright holder for this preprint this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint . cc-by-nc-nd . international license it is made available under a is the author/funder, who has granted medrxiv a license to display the preprint in perpetuity. (which was not certified by peer review) the copyright holder for this preprint this version posted november , . ; https://doi.org/ . / . . . doi: medrxiv preprint world health organization and others. weekly operational update on covid economic effects of coronavirus outbreak (covid- ) on the world economy the socio-economic implications of the coronavirus and covid- pandemic: a review timing of state and territorial covid- stay-at-home orders and changes in population movement -united states measuring mobility to monitor travel and physical distancing interventions: a common framework for mobile phone data analysis the use of mobile phone data to inform analysis of covid- pandemic epidemiology social distancing responses to covid- emergency declarations strongly differentiated by income polarization and public health: partisan differences in social distancing during the coronavirus pandemic time-series clustering for home dwell time during covid- : what can we learn from it? medrxiv anonymised and aggregated crowd level mobility data from mobile phones suggests that initial compliance with covid- social distancing interventions was high and geographically consistent across the uk aggregated mobility data could help fight covid- nonlinear oscillations, dynamical systems, and bifurcations of vector fields exploiting sparsity and equation-free architectures in complex systems data-driven science and engineering: machine learning, dynamical systems, and control the approximation of one matrix by another of lower rank data-driven modeling & scientific computation: methods for complex systems & big data diffusion maps, reduction coordinates, and low dimensional representation of stochastic systems diffusion maps laplacian eigenmaps for dimensionality reduction and data representation reconstruction of normal forms by learning informed observation geometries from data data analysis methodology for the safegraph stay-at-home index social distancing metrics load us census boundary and attribute data as 'tidyverse' and 'sf'-ready data frames downloaded on october openstreetmap: access to open street map raster images on lines and planes of closest fit to systems of points in space scikit-learn: machine learning in python neighborhood preservation in nonlinear projection methods: an experimental study finding a "kneedle" in a haystack: detecting knee points in system behavior machine learning: a probabilistic perspective mclust : clustering, classification and density estimation using gaussian finite mixture models r: a language and environment for statistical computing. r foundation for statistical computing estimating the dimension of a model how many clusters? which clustering method? answers via model-based cluster analysis sulla determinazione empirica di una legge di distribuzione estimate of deviation between empirical distribution functions in two independent samples safegraph common nighttime location algorithm nearly half of seattle-area adults working from home because of covid -here's who is and isn't hitting the road about a fifth of u.s. adults moved due to covid- or know someone who did a majority of young adults in the u.s. live with their parents for the first time since the great depression what about bias in the safegraph dataset key: cord- - n i authors: oliveira, jos'e nilmar alves de; orrillo, jaime; gamboa, franklin title: the home office in times of covid- pandemic and its impact in the labor supply date: - - journal: nan doi: nan sha: doc_id: cord_uid: n i we lightly modify eriksson's ( ) model to accommodate the home office in a simple model of endogenous growth. by home office we mean any working activity carried out away from the workplace which is assumed to be fixed. due to the strong mobility restrictions imposed on citizens during the covid- pandemic, we allow the home office to be located at home. at the home office, however, in consequence of the fear and anxiety workers feel because of covid- , they become distracted and spend less time working. we show that in the long run, the intertemporal elasticity of substitution of the home-office labor is sufficiently small only if the intertemporal elasticity of substitution of the time spent on distracting activities is small enough also. the home office is a modality of working away from a fixed job location the office and therefore can be carried out in any place different from a physical office. this modality of labor has existed for a long time and has been mainly common in multinational enterprises . however, this modality of working has increased over time around the world as shown in a survey carried out by ipsos, see fig. below. in spite of the significant gains from working from home in terms of worker productivity and satisfaction as shown in bloom et al. ( ) , it does not seem to be the case during the covid- pandemic, as workers could engage in distracting activities placing workers' productivity at risk. in this same vein of reasoning, dutcher and jabs saral ( ) highlight, even in normal times, the difficulties that may arise if telecommuting workers are not properly monitored. in spite of the fact that the home office or working from home in the past it was only applied to specific jobs, nowadays, because the covid- pandemic, most firms seem to be obligated to adopt it to continue operating in their markets. consequently, both the demand and supply for home offices seem to increase. hence, it is the purpose of this paper to theoretically determine the factors which influence the home-office job supply. where some workers like managers needed to get away from the office. due to the fear and the anxiety produced by the current pandemic. working from home is a very special kind of home office and it seems to be the rule in times of the current pandemic. of course not all jobs can be accomplished in a remote way this makes the productive sector seek to reorganise itself so that working from home becomes the best alternative due to the strong mobility restrictions imposed by the authorities of countries. it is also well known that many enterprises are planning on adopting home offices even after the current pandemic. so much so, that in many countries some businesses, like hotels, are planning to adapt their spaces to offer them as places to set up home offices. this obliges us to make a long-run analysis of the home-office job supply. to accomplish our purpose we consider a simple economic growth model with an endogenous labor supply like that of eriksson ( ) . although our model is very similar to eriksson?s model, we depart from it in the following aspect. we assume that the effort attached to human capital depends on the time spent on distracting activities, occurring during the working period. we assume that these distracting activities give some pleasure to workers, but we should not confuse such activities with leisure activities since the latter are supposed to occur outside normal working hours. it is also useful to note that during the covid- pandemic, workers are put on quarantine. it is therefore natural to assume that workers are more prone to be distracted by activities that decrease their home office production. we can interpret such distracting activities as being negative "shocks" to the labor supply. the word shock used here is not used in its rigorous sense of being stochastic since the economic growth model we used here is deterministic . our paper is related to the recent literature on the economic effects of the covid- crisis. the papers in this literature have different objectives -from understanding its evolution to predicting its impacts on the world economy. nonetheless, our paper is more related to the working-from-home literature which is surveyed by allen et al. ( ) . these authors address a type of home office, namely telecommuting and analyse how effective it is. our objective in this paper is much more modest in the sense that we seek to discover how the preferences for consumption and displeasure for working affect the growth of home-office job supply. more precisely, we show that this growth rate is affected by the parameters that represent both the workers? preferences for consumption and the workers? displeasure for working. this is important for both firms and governments as it allows them to implement, in an optimal way, the incentives for home-office job supply by adjusting the goals of each policy maker. our specific findings are related to the growth rate of variables along balanced-growth solution paths. we show that in the long run the intertemporal elasticity of substitution of home-office labor is sufficiently small only if the intertemporal elasticity of substitution of the time spent on distracting activities is small enough too. the paper is organised as follows: section presents the model in which are described both households and firms. in this same section, the social planner?s problem is formulated. section presents the main results and the paper ends with a short section which analyses the theoretical results and gives some concluding remarks. our model is a centralised economy like that of eriksson ( ) with some key modifications allowing us to make the labor supply endogenous via distracting activities. by distracting activities here i mean any activity which decreases labor time. they are not properly leisure but rather activities which produce both pleasure and affect or influence the acquisition of human capital which is placed in motion to produce consumption good/capital. distracting activities influence the effort which is allocated to produce either consumption goods or capital for future investments. moreover, these activities also influence the effort used to acquire human capital. we allow each worker, within a constant population, to supply labor l t . we assume that during the working hours each worker spends time s t in distracting activities which give a certain pleasure. it is useful to pointing out that the time s t is not leisure since it occurs during working hours l t . thus, l s − s t is the effective labor. we model the instantaneous payoff of each worker to be this payoff consists of two parts: the former is the pleasure coming from consumption and the latter is the displeasure felt while working. on the production side of the economy, the output is produced by using both capital, k t and effective labor l t − s t which is potentiated by the human capital h t . we formalise this by assuming the effort depends on s t . differently from uzawa ( ) and lucas ( ) , we make human capital endogenous by postulating each worker's effort e : [ , l t ] → [ , ] depends on the time spent s t in the following way: e(s t ) = − st lt . we also assume that this effort is allocated both to the production of human capital and the consumption good/capital. our allocation is ( − e) for the former and e for the latter. more precisely, we assume that both human and physical (or real) capitals accumulate according tȯ ( ) respectively. using the functional form of e, we can rewrite ( ) and ( ) after describing the consumption and production sides, we are going to formulate the benevolent planner's problem. the benevolent planner's problem is then to chose paths of consumption c, labor l, and time spent s on distracting activities in order to maximise the discounted stream of payoffs by every identical agent in the economy ∞ e −ρt v (c t , l t , s t )dt ( ) subject to ( ) and ( ) with k o > and h o > given. here, c t , l t and s t are control variables and ρ is the discount factor; and k t and h t are state variables. in what follows we will drop all indexes of time from variables which depend on the time to attain analytical tractability. in this model the effort e is endogenous, not by itself, like eriksson ( ) , but because it depends on the time spent on distracting activities. however, for the sake of comparison with related literature and mainly with that of eriksson's ( ) paper, we maintain, like him, that the instantaneous payoff is additively separable: and the production function like a cobb-douglas one : theoretical results we begin this section by characterising the solutions of the benevolent planner?s problem. for that, we consider the current-value hamiltonian for the optimal problem, with "prices" λ and λ used to value increments to physical and human capital respectively. the necessary conditions for optimality are: . ( ) -( ) are the the first order conditions to to maximise h, and ( ) and ( ) give the rates of change of λ i , i = , of both capitals. next, we will seek the balanced growth path from ( )-( ) which are solutions on which consumption and both kinds of capital are growing at constant percentage rates, the prices of the two kinds of capital are declining at constant rates. in what follows we will present our first results which have to do with the relationships between the rates of change of our variables k, c, l − s and h. proposition along the balanced growth solution of the planner's problem, we havek =ĉ =ĥ + (l − s) −l from ( ) we haveλ = −σĉ. so that ifĉ = θ, then from ( ) we get that the marginal productivity of capital is constant. that is, dividing by k through ( ) and using ( ), we have using ( ) and the fact thatk grows at a constant rate, by hypothesis, one has c k is a constant. after differentiating ( ) logarithmically with respect to time we getk =ĉ = θ. differentiating ( ) logarithmically with respect to time one has that the common growth rate of consumption and capital is proposition under the same hypotheses of proposition , one has: proof. summing ( ) and ( ) we get differentiating ( ) logarithmically with respect to time and using ( ) and ( ) one hasλ manipulating ( ) and ( ) sinceĥ is constant we have thatl =ŝ by ( ) . using the fact thatl − s =l, stablished above, we get item . putting ( ) into ( ) we get hence, item follows. the following proposition shows that the growth rates in terms of parameters. proposition under the same hypotheses of proposition , one has: after manipulating ( ) and to use ( ) and ( ) we reach tô putting ( ) into ( ) one has putting ( ) into ( ) we have putting ( ) into ( ) and after simplifying the result we get finally, proposition follows after substituting ( ) into items and of proposition . the following corollary shows the growth rate of the output equals the growth rate of the capital (or consumption). proof. this result follows from differentiating ( ) logarithmically with respect to time and using ( ) and item of proposition . in this section, we establish the convergence of the utility function and the transversality condition. we will do it by considering the balanced path and under the assumption that σ > . first, the utility integral can be written as . substituting the values ofĉ andl − s given by proposition we have that u is − ρ is negative since σ > and ρ < . thus, u is finite since x is negative. second, the transversality conditions associated with the benevolent planner's problem also hold. that is to say, lim t→∞ kλ e −ρt = and lim t→∞ hλ e −ρt = the former follows from the factsλ = −σĉ andk =ĉ. thus, one has x and x is negative from its definition (see above), the former result follows. finally, the latter follows from ( ) and ( ). to see it, it suffice to observe that whereĥ +λ − ρ equals x. since x is negative, the latter result follows. we start by setting the elasticity of the marginal utility of time spent on distracting activities, v (c t , s t , l t ). here the sub-index represents the partial derivative with respect to s t . by definition of elasticity one has using ( ) we compute e v (s t ). thus, manipulating and using ( ) we get e v (s t ) = γĥ −ĥ considering again the balanced path and using ( ) we write e v (s t ) in terms of parameters we know that the intertemporal elasticity of substitution of time spent on distracting activities ies is defined as e v (st) so that for σ > and ρ < , we clearly have that ies(s) tends to as γ → ∞. first, in relation to the home-office job supply represented by l t − s t we know from ( ) that the intertemporal elasticity of substitution of the home office is γ and the intertemporal elasticity of substitution of consumption is σ . second, for the balanced growth path satisfying ( ) -( ) to be a solution of the benevolent planner's problem it is sufficient that the transversality conditions are satisfied. this is achieved by assuming σ > . third, differently from eriksson's ( ) model we have considered the productivity of human capital sector as being and the discount factor ρ < . lastly, if workers had been patients ( ρ = ), we would have considered the productivity of the human capital sector as being greater than in order to keep the results similar to that of eriksson as is shown in propositions , and corollary . using all the results of the previous paragraph, we can then say that the intertemporal elasticity of substitution of time spent on distracting activities, ies(s) is small enough provided that the intertemporal elasticity of substitution of home-office is small enough. more precisely one has that lim γ→∞ ies(s) = the intuition behind this result is that if workers want to avoid fluctuations in home-office labor, they should display strong preference to avoid fluctuations on distracting activities. this result does not seem to be plausible in the short-run due to the high volatility of the distracting activities because of the covid- pandemic that has spread throughout the world provoking fear and anxiety in citizens and particularly in workers. however, to have ies(s) small enough does seem to be quite plausible in the long-run since workers will end up incorporating home office work if it is adopted as a form of labor. we finish this section by saying that although our paper is deterministic, it does explain to a certain degree, the long-run behaviour of the home-office job supply in terms of time spent on distracting activities. more precisely, a necessary condition for the home-office job supply to be smooth is that the intertemporal elasticity of substitution of distracting activities be small enough, as shown in the previous limit. we hope that in future research the home-office job supply will be analysed in ampler settings, including markets and government. how effective is telecommuting? assessing the status of our scientific findings does working from home work? evidence from a chinese experiment does team telecommuting affect productivity? an experiment economic growth with endogenous labour supply on the mechanics of economic development optimum technical change in an aggregative model of economic growth key: cord- -e hd iuu authors: maillard, jean-yves; bloomfield, sally f.; courvalin, patrice; essack, sabiha y.; gandra, sumanth; gerba, charles p.; rubino, joseph r.; scott, elizabeth a. title: reducing antibiotic prescribing and addressing the global problem of antibiotic resistance by targeted hygiene in the home and everyday life settings: a position paper date: - - journal: am j infect control doi: . /j.ajic. . . sha: doc_id: cord_uid: e hd iuu antimicrobial resistance (amr) continues to threaten global health. although global and national amr action plans are in place, infection prevention and control is primarily discussed in the context of healthcare facilities with home and everyday life settings barely addressed. as seen with the recent global sars-cov- pandemic, everyday hygiene measures can play an important role in containing the threat from infectious microorganisms. this position paper has been developed following a meeting of global experts in london, . it presents evidence that home and community settings are important for infection transmission and also the acquisition and spread of amr. it also demonstrates that the targeted hygiene approach offers a framework for maximizing protection against colonization and infections, thereby reducing antibiotic prescribing and minimizing selection pressure for the development of antibiotic resistance. if combined with the provision of clean water and sanitation, targeted hygiene can reduce the circulation of resistant bacteria in homes and communities, regardless of a country's human development index (overall social and economic development). achieving a reduction of amr strains in healthcare settings requires a mirrored reduction in the community. the authors call upon national and international policy makers, health agencies and healthcare professionals to further recognize the importance of targeted hygiene in the home and everyday life settings for preventing and controlling infection, in a unified quest to tackle amr. the global impact is already profound and expected to intensify, particularly among the poorest nations. , the main driver is overuse and misuse of antibiotics in medicine and agriculture including unregulated over-the-counter sales, while global spread of resistant bacteria or resistance genes is attributed to poor infection prevention and control in healthcare facilities, and sub-optimal hygiene and sanitation in communities, confounded by poor infrastructure and weak governance. in the us, between - % of the volume of human antibiotic use occurs in the outpatient setting, with nearly % considered to be inappropriate or unnecessary. without prompt action, it is estimated that rates of amr to commonly-used antibiotics could exceed - % in some countries by , and by , around million people could die each year as a result of resistance to antibiotics and other antimicrobial agents. almost million of these will be in africa and asia. in , an alliance of the who, the food and agriculture organization of the united nations interventions." the gap emphasizes the need for society-wide engagement, with a clear focus on "prevention first." one of the five strategic objectives is a reduction in the incidence of infection through improved sanitation, hygiene, and infection prevention. at least countries have finalized national action plans, with the plans of more than other countries under development. what is striking is that the gap and national plans discuss infection prevention and control primarily in the context of healthcare facilities. (see https://www.who.int/antimicrobialresistance/national-action-plans/library/en/). by contrast, the latest uk national action plan, which sets out a -year vision and a -year plan for how the uk will contribute to controlling amr by , offers guidelines on infection prevention in healthcare settings, but also highlights the role of the community, noting that, when it comes to infections in the community, the public have a huge part to play. in recent years, demographic changes and changes in health service structure mean that the number of people living in the community needing special care, because they are at greater risk of infection, has significantly increased. the largest proportion of these are the elderly, who generally have reduced immunity to infection which is often exacerbated by other illnesses like diabetes and malignant illnesses. a decrease in immunity usually starts from years old. other infection-susceptible groups include the very young, patients recently discharged from hospital, and family members with invasive devices such as catheters, as well as those whose immune competence is impaired as a result of chronic and degenerative illnesses (including hiv/aids) or because they are receiving immunosuppressant drugs or other therapies. immunosuppressed individuals are often also on other medications such as antibiotics, to help protect them from infection but can further increase susceptibility to infections such as clostridium difficile. home and everyday life settings provide multiple opportunities for spread of infection. everyday life settings include locations where normally there is no mandated hygiene policy as is typically found in clinical and educational settings; for example: work places, public transport, gyms, child day-care facilities, and shopping centers. poor hygiene is considered a major factor in the transmission of community-based infections, including gastrointestinal (gi) and respiratory tract (rt) infections such as colds and influenza, and skin infections caused by s. aureus. for the elderly, communal living environments, combined with problems of fecal incontinence, create an environment in which enteric and foodborne pathogens are easily spread. as a result, the incidence of salmonellosis and campylobacter diarrhea appears to be higher among the elderly in these situations. more vulnerable 'at risk' members of society are now being looked after outside hospital settings. for example, in germany, it is estimated that approximately three quarters of all people in need of care are currently being cared for at home. in the community the immunocompromised are also at risk from opportunistic pathogens such as e. coli, klebsiella spp., and pseudomonas aeruginosa, which are considered as hospital related. the key steps in preventing the spread of infection, known as breaking the chain of infection, are the same regardless of setting. in the home, pathogens may have been brought home from hospital settings or enter the home via colonized or infected people, pets/domestic animals, or through contaminated food and water. , pathogens and other microbes are shed constantly from these sources, with rapid transmission around the home mainly via hands, hand and food contact surfaces, cleaning utensils and in the air ( figure ). respectively. for campylobacter, counts of > and > were isolated from and . % respectively. this is a concern, since it is estimated that % of salmonella infections originate in the home, and a uk study detected campylobacter spp. in % of chilled retail chickens, with % of samples containing > colony forming units (cfu)/g of skin. the infectious dose of campylobacter is estimated at < cfu. chaidez et al. demonstrated that the risk of salmonella transmission from cleaning cloths via hands to mouth was far higher than the guideline levels for acceptable risk. since most pathogenic organisms die relatively rapidly, particularly on dry surfaces, the greatest risk of human exposure presents immediately after shedding from an infected or contaminated source. however some species, including s. aureus, e. coli, and other organisms such as fungal species, rhinovirus, and norovirus can survive for long periods even on dry surfaces. audit studies suggest that some gram-negative organisms can form permanent reservoirs or secondary sources of contamination, particularly where moisture is present such as in sinks and drains, kitchen cleaning cloths and sponges. the dose also depends on host susceptibility and mode of entry, and may be lower for at-risk groups in the community such as children, the elderly, and people with compromised immunity. although care of increasing numbers of patients in the community, including at home can help alleviate over-burdened health systems, it can be undermined by inadequate infection control in the home and urgent focus is now needed on infection transmission in homes and community settings in addition to healthcare settings. although multidrug-resistant (mdr) bacteria (i.e. bacteria that have acquired resistance to at least one agent in three or more antimicrobial classes) are typically hospital-acquired, since , we have seen the emergence of new "community acquired" strains of mrsa (ca-mrsa). while healthcare-associated strains are mainly a risk to vulnerable people, for ca-mrsa, any family member is at risk and it is more prevalent among children and young adults where they cause infections of cuts, wounds and abrasions. us experience suggests the risk is greatest among those engaging skin-to-skin contact activities and contact with contaminated objects such as towels, sheets and sports equipment. transmission is common in settings such as prisons, schools and sports teams. a study assessing the transmission of ca-mrsa in a university in the us, found multidrug resistant usa responsible for diseases including necrotizing pneumonia, severe sepsis and necrotizing fasciitis, on common touch surfaces at the university, student homes and local community settings. this suggests transfer between different locations within the community. enterobacterales are a common cause of community-associated infections, including urinary tract infections and bacteremia as well as gastrointestinal infections. kitchen sponges not only act as reservoirs of microorganisms, but also as disseminators over domestic surfaces, which can lead to cross-contamination of hands and food, which is considered a main cause of foodborne disease outbreaks. carbapenem-resistant enterobacteriaceae (cre) are also on the rise globally, but, to date, most cre infections in the us and europe have been healthcare-associated. , although data from asia is sparse, carbapenemases have been found in bacteria recovered from drinking water in india and in food-producing animals in china. , , in european studies during the s, vancomycin-resistant enterococci (vre) were detected in the stools of healthy volunteers. [ ] [ ] [ ] [ ] [ ] however, rates of vre, carbapenem resistance in acinetobacter infections, and mdr p. aeruginosa are thought to be low in individuals living in the community. overall, the evidence suggests that mdr strains of bacteria, like any other strains of bacteria, can enter the home or other settings via people who are infected or colonized or via contaminated food and can be spread to other members of the family via hands and contaminated surfaces. if implemented effectively, home and everyday life hygiene has the potential to reduce rates of infection and the need for antibiotic prescriptions, thereby reducing the selective pressure for the development and subsequent dissemination of resistance. microbiological data , suggest that the surfaces that are most often responsible for spread of harmful microbes, at key moments include the hands themselves, hand contact surfaces, food contact surfaces, and cleaning cloths and other cleaning items ( figure ). these surfaces are referred to as critical surfaces or critical control points. clothing, household linen, toilets, sinks and bath surfaces may also contribute to establishing a chain of infection, however, the risks associated with these surfaces are typically lower as they rely on the hands and other "chain links" to disseminate infectious microbes to cause human exposure. an important aspect of targeted hygiene is hygienic cleaning -as opposed to visible cleaningto break the chain of infection. this is achieved using hygiene procedures (products plus process) to reduce pathogenic microorganisms on critical surfaces to a level where they are no longer harmful to health -thereby preventing ongoing spread. , several methods exist to achieve such reduction in potential pathogens: mechanical/physical removal using dry wiping, soap or detergent-based cleaning together with adequate rinsing, inactivation or eradication using a disinfectant on hard surfaces or an alcohol-based sanitizer on the hands, or a physical process such as heating (to ≥ °c/ °f) or ultraviolet treatment. most frequently, a combination of these approaches is likely to be used. , when developing hygiene procedures aimed at breaking the chain of infection, the goal should be to ensure that each procedure is appropriate to its intended use. in recent years, risk modelling has been developed in order to achieve this. quantitative microbial risk assessment (qmra) was originally developed for ensuring water quality and is increasingly being used to develop infection prevention control strategies in other settings, including healthcare. , qmra is a scientifically-validated approach that uses published data to model the chain of infection and estimate safe residual level of contamination at critical points in the chain. , this information is then used to estimate the log reduction required to reduce contamination to a safe level. based on these estimates, tests modelling use conditions can be used to develop effective hygiene procedures to achieve the required reduction. the approach is set out in more detail by bloomfield et al. in the past, recommendations on selection of hygiene procedures for home and everyday life were based on the health status of family members, and it is still argued by some that disinfectants should only be used in situations where people are infected or at increased risk of infection. although there is data to show that hygiene is important in preventing transmission of mrsa colonization and infection in the domestic environment, further investigation is required to demonstrate the full extent to which poor home hygiene may contribute to the burden of foodborne infection associated with antibiotic resistant strains. quantifying the impact of hygiene on the burden of infection in home and everyday life is challenging because of the large population sizes required to generate significant results, and difficulties in conducting studies involving multiple interventions. most data have been generated from single intervention studies -primarily hand hygiene -where meta-analyses show a positive impact on gi and rt infections. [ ] [ ] [ ] children who attend day-care centers have significantly more infections than those who do not. the most common are rt and gi infections, and the risk of otitis media is almost twice that of children remaining at home. studies in day-care centers and schools in which hand hygiene was combined with cleaning and/or disinfection of environmental surfaces indicate a positive impact on illness rates and reduction in the use of antibiotics. [ ] [ ] [ ] [ ] in an intervention study reduction of antibiotic prescriptions for rt infections in a group who used hand sanitizers compared with a control group. another intervention study found that children were prescribed antibiotics for significantly fewer weeks in day care centers using specific disinfecting products and cleaning protocols than centers that continued to use their standard procedures and products (rr= . [ % ci . , . ]; p= . ) -a relative risk reduction of almost onethird. to the best of our knowledge, only one study on the impact of targeted hygiene in the home has been conducted. this study, conducted among low-income communities in cape town, south africa, evaluated the impact of hygiene education alone and education in combination with hand washing with soap at critical times, bathing at least three times a week, cleaning/disinfecting household surfaces at critical times, and proper waste disposal. qmra is also now being used to estimate the impact of hygiene interventions on infection in community settings. haas et al. concern has been expressed as to whether expanding use of microbicidal products, in the home and everyday life may contribute to the rise in amr. sub-lethal levels of microbicides can induce stress on bacterial cells, causing expression of mechanisms that reduce the biocide concentration at the bacterial target site further and allow the bacterial cell to repair. , these include overexpression of an efflux system, membrane regulatory changes, and changes in membrane permeability and composition. these same mechanisms can produce changes in the susceptibility profile to unrelated antimicrobials. in other words, the use of microbicides may cross-select for antibiotic resistance and be associated with reduced antibiotic susceptibility to clinically significant levels (recently reviewed by maillard ). factors inherent to the microbicide (i.e. concentration, formulation, mechanism of action), the microorganisms (i.e. type/strain, metabolism, resistance mechanisms), and product usage (e.g. concentration, exposure time), all impact on product efficacy. decreases in efficacy, for example, following shorter contact time or product dilution, will lead to bacterial survivalantimicrobial damage caused by a sub-lethal concentration of a microbicide is likely to be repairable. a number of expert reports commissioned in the last years have highlighted laboratory studies linking microbicide use with reduced antibiotic susceptibility. however, these reports conclude that there is little evidence for this effect occurring in real-life clinical practice, and have called for further research into whether microbicide use influences antibiotic resistance in the community. - rutala et al. ( ) found that the frequency of occurrence of antibiotic resistance in environmental isolates from homes was much lower than for clinical isolates from a hospital intensive care unit and an outpatient setting where there was routine extensive use of antibiotics. two studies were carried out to investigate whether antibiotic resistant strains were more likely to be found in homes where antibacterial products were used, compared with homes where they were not. , samples were collected from houses in the usa and uk of users and nonusers of antibacterials. susceptibility tests against antibiotics and antibacterial agents (triclosan, pine oil, bac and para-chloro-meta-xylenol) were carried out on the bacteria isolated. the authors concluded that there was no evidence that antibiotic resistant strains occurred more frequently in user homes compared with non-user homes. a -year study by aiello et al ( ) also showed that household use of antibacterial cleaning products was not a significant risk factor for occurrence of antibiotic resistant isolates from hands. despite more than years of research, there is still no conclusive resolution to the question of whether and to what extent; microbicides might contribute to amr in clinical practice. in light of laboratory data, which indicates that microbicide-induced amr is biologically plausible for some types of microbicides, it is concluded that use of microbicides needs to be prudent and appropriate and that the products containing them must be used at recommended concentrations and with the appropriate contact time. targeted hygiene works to ensure that use of disinfectants and hand sanitizers (i.e. microbicides used at the correct concentration and contact time) are confined to situations where there is identifiable risk of spread of harmful microorganisms, ensuring that they play an essential role in tackling amr. the need for antibiotic prescribing may in fact increase if disinfectants and hand sanitizers are not used as indicated, due to the increased risk of infection and survival of bacteria bearing amr determinants. these could potentially spread to other areas in the home and on into the community. it is important to note also that preventing viral infections as well as bacterial infections, such as those that cause respiratory and gi infections, can also have a role in reducing amr as this will eliminate the potential for mis-prescribing or misuse of antibiotics. in in , an estimated million people around the world were drinking from unimproved water sources, and . billion had no access to improved sanitation -the vast majority of these were in sub-saharan africa and south asia. it is estimated that . billion people lack the use of sanitation facilities which are not shared with other households, as with studies conducted in hics, the highest levels of contamination in lmics are typically found in moist locations such as kitchen sponges and dishcloths. [ ] [ ] [ ] the key question, however, is whether, and to what extent, the incidence and levels of potentially harmful pathogens (and thus infection risks) are higher in homes without access to adequate water and sanitation. sinclair and gerba monitored fecal coliforms, total coliforms, e. coli and heterotrophic plate count bacteria on household surfaces in homes that had improved latrines (i.e. a pour-flush latrine) in a rural village of cambodia, and compared the results with similar data from homes in the us and japan. fecal coliform levels in cambodia were found to be highest in moist locations such as the plastic ladle used for sink water, the toilet seat surface, and the cutting board surface. for e. coli, the mean log cfu per cm ranged from . to . , with highest counts found on the top of the squat toilet, the wash basin, and the floor around the toilet. fecal coliform levels were -fold higher on these surfaces in cambodia than on equivalent surfaces in the us and japanese studies. in lmics, due to a lack of basic sanitation, good hand hygiene is of vital importance. globally, it has been estimated that only % of the population washes its hands with soap after contact with excreta. observations show that hand washing with soap is undertaken in an ad hoc manner, with many households having no access to handwashing facilities. unsurprisingly, studies in lmics have reported high levels of fecal indicator bacteria on the hands of household members, [ ] [ ] [ ] with one study correlating presence of fecal contamination on the hands with the prevalence of gastrointestinal and respiratory symptoms within the household. a cochrane review showed that improving hand washing practices probably reduces diarrhea episodes in child day-care centers in both high income countries and among communities living in low to middle income countries by as much as %. the evidence set out in this paper suggests that, if combined with measures ensuring clean water and adequate sanitation, targeted hygiene practices in home and everyday life settings could make a significant contribution to tackling amr through infection prevention and a consequential reduction in antibiotic prescribing. this is true in all areas of the world including low-income countries. additionally, the evidence suggests that hygiene promotion would contribute to preventing the transmission of resistant bacteria from the home and everyday life settings, into healthcare settings, and back into the community. further research is still needed to evaluate the extent to which this might occur, especially in communities in low income countries. to be effective, hygiene interventions need to consider all aspects that are likely to affect the outcome. this includes a reduction of antibiotics from the food chain and the environment, improved hygiene education and availability of appropriate products as well as the provision of clean water and improved sanitation. based on these findings, the authors of this paper issue a call to action to national and international health policy makers, health agencies, and healthcare professionals to give greater recognition to the importance of hygiene in the home and everyday life and development and promotion or more effective codes of practice for hygiene in the home and everyday life as part of national action plans to tackle amr. although the precise impact of hygiene on transmission of infection between community and healthcare settings needs further investigation, it is important to recognise, that reducing the need for antibiotic prescribing and the circulation of amr strains in healthcare settings cannot be achieved without also reducing circulation of infections and amr strains in the community. we cannot allow hygiene in home and everyday life settings to become the weak link in the chain. the development of this position paper was supported by an educational grant from reckitt benckiser who fund the activity of the global hygiene council. medical writing support was provided by the medical communications agency, spink, which runs the secretariat for the ghc. antibiotic resistance: key facts the world bank/international bank for reconstruction and development. drug-resistant infections: a threat to our economic future the mortality burden of multidrug-resistant pathogens in india: a retrospective observational study anthropological and socioeconomic factors contributing to global antimicrobial resistance: a univariate and multivariable analysis antibiotic prescribing and use in doctor's offices: measuring outpatient antibiotic prescribing stemming the superbug tide: just a few dollars more review on antimicrobial resistance: tackling drug-resistant infections globally world health organization. global action plan on antimicrobial resistance world health organization. seventy-second world health assembly. provisional agenda item uk -year vision for antimicrobial resistance uk -year action plan for antimicrobial resistance food and agriculture organization of the united nations: antimicrobial resistance policy review and development framework community-based infections and the potential role of common touch surfaces as vectors for the transmission of infectious agents in home and community settings containing the burden of infectious diseases is everyone's responsibility escherichia coli st h as a foodborne uropathogen occurrence of bacteria and viruses on elementary classroom surfaces and the potential role of classroom hygiene in the spread of infectious diseases contamination of environmental surfaces during normal daily activities of hotel guest with rhinovirus colds the occurrence of influenza a virus on household and day care center fomites persistence of coronaviruses on inanimate surfaces and their inactivation with biocidal agents achieving hygiene in the domestic kitchen: the effectiveness of commonly used cleaning procedures hygiene issues in the home a microbiological survey of campylobacter contamination in fresh while uk-produced chilled chickens at retail sale centers for disease control and prevention. campylobacteriosis. in: cdc yellow book reduction of risk of salmonella infection from kitchen cleaning clothes by use of sodium hypochlorite disinfectant cleaner how long do nosocomial pathogens persist on inanimate surfaces? a systematic review characterization and quantification of bacterial pathogens and indicator organisms in household kitchens with and without the use of a disinfectant cleaner reduction of fecal coliform, coliform and heterotrophic plate count bacteria in the household kitchen and bathroom by disinfection with hypochlorite cleaners bacterial contamination of japanese households and related concern about sanitation bacteriological survey of used cellulose sponges and cotton dishcloths from domestic kitchens. dairy, food and environ sanit bacterial occurrence in kitchen hand towels the chain of infection transmission in the home and everyday life settings, and the role of hygiene in reducing the risk of infection. international scientific forum on home hygiene minimum infective dose of the major human respiratory and enteric viruses transmitted through food and the environment infective dose of foodborne pathogens in volunteers: a review clostridium difficile and the aetiology of pseudomembranous colitis rhinovirus infections in the upper airway determination of the % human infectious dose for norwalk virus quantitative microbial risk assessment. nd edn multidrug-resistant organisms in hospitals: what is on patient hands and in their rooms? multidrug-resistant bacteria in the community: trends and lessons learned refractory methicillin-resistant staphylococcus aureus carriage associated with contamination of the home environment staff carriage of methicillin-resistant staphylococcus aureus (emrsa ) and the home environment: a case report spread of methicillin-resistant staphylococcus aureus (mrsa) among household contacts of individuals with nosocomially acquired mrsa bed, bath and beyond: pitfalls in prompt eradication of methicillinresistant staphylococcus aureus carrier status in healthcare workers the influence of methicillin-resistant staphylococcus aureus (mrsa) carriers in a nursery and transmission of mrsa to their households spread of antibiotic resistant strains in the home and community. international scientific forum on home hygiene, international scientific forum on home hygiene whole genome sequencing revealed new molecular characteristics in multidrug resistant staphylococci recovered from high frequency touched surfaces in london familial carriage of methicillin-resistant staphylococcus aureus and subsequent infection in a premature neonate methicillin-resistant staphylococcus aureus (mrsa) in the community methicillin-resistant staphylococcus aureus carriage in a child care center following a case of disease. toronto child care center study group aureus isolated form public surfaces on a university campus. student homes and local community high community faecal carriage rates of ctx-m esbl-producing escherichia coli in a specific population group in birmingham -fold increase ( - ) in the rate of healthy subjects with extended-spectrum β-lactamase-producing escherichia coli faecal carriage in a parisian check-up centre antibiotic resistance in the food chain: a developing country perspective. front microbiol extended-spectrum β-lactamase (esbl)-producing enterobacteriaceae: a threat from the kitchen study on microbial communities in domestic kitchen sponges: evidence of cronobacter sakazakii and extended spectrum beta lactamase (esbl) producing bacteria new delhi metallo-β-lactamaseproducing carbapenem-resistant escherichia coli associated with exposure to duodenoscopes emergence of escherichia coli, co-producing ndm- and oxa- carbapenemases, in urinary isolates, at a tertiary care centre at central india risk factors for colonization due to carbapenemresistant enterobacteriaceae among patients exposed to long-term acute care and acute care facilities dissemination of ndm- positive bacteria in the new delhi environment and its implications for human health: an environmental point prevalence study identification of new delhi metallo-β-lactamase in acinetobacter lwoffii of food animal origin faecal carriage and nosocomial spread of vancomycin-resistant enterococcus faecium does the use in animals of antimicrobial agents, including glycopeptide antibiotics, influence the efficacy of antimicrobial therapy in humans? are vancomycin resistant enterococci (vre) normal inhabitants of the gi tract of hospitalized patients? prevalence of vancomycin-resistant enterococci in hospital and community-based patients in the netherlands [abstract prevalence of resistant fecal bacteria in turkeys, turkey farmers and turkey slaughterers [abstract the hygiene hypothesis misnomer and its potential impact on strategies to tackle the global problem of antibiotic resistance. alliance for the prudent use of antibiotics newsletter environmental factors influencing the development and spread of antibiotic resistance a risk assessment approach to the use of disinfectant procedures in the community too clean or not too clean? the case for targeted hygiene in the home and everyday life rsph calls for clean up of public attitudes to hygiene a risk assessment approach to use of antimicrobials in the home to prevent spread of infection a unified framework for developing effective hygiene procedures for hands, environmental surfaces and laundry in healthcare, domestic, food handling and other settings. gms hyg infect control evaluation and quantitative microbial risk assessment of a unique antimicrobial agent for hospital surface treatment quantitative microbial risk assessment: application for water safety management the role of surface disinfection in infection prevention controlling hospital-acquired infection: focus on the role of the environment and new technologies for decontamination household cleaning and surface disinfection: new insights and strategies use of hygiene protocols to control the spread of viruses in a hotel effect of hand hygiene on infectious disease risk in the community setting: a meta-analysis hand washing promotion for preventing diarrhoea. cochrane database syst rev prüss-ustün a, hygiene and health: systematic review of handwashing practices worldwide and update of health effects an open randomized controlled trial of infection prevention in child day-care centers effects of multiple cleaning and disinfection interventions on infectious diseases in children: a group randomized trial in china impact of an infection control program in a specialized preschool reducing absenteeism from gastrointestinal and respiratory illness in elementary school students: a randomized, controlled trial of an infection-control intervention effectiveness of a hand hygiene program at child care centers: a cluster randomized trial. pediatrics antibiotic use in child care centers: the impact of an enhanced environmental hygiene intervention comprehensive family hygiene promotion in peri-urban cape town: gastrointestinal and respiratory illness and skin infection reduction in children aged under a systematic review of hand-hygiene and environmental-disinfection interventions in settings with children modeling the role of fomites in a norovirus outbreak assessment of benefits from use of antimicrobial hand products: reduction in risk from handling ground beef cost-effectiveness of a targeted disinfection program in household kitchens to prevent foodborne illnesses in the united states, canada, and the united kingdom fda issues final rule on safety and effectiveness of antibacterial soaps resistance of bacteria to biocides bacterial resistance to biocides. in: block's disinfection, sterilization and preservation wolters kluwer: philadelphia scientific committee on emerging and newly identified health risks (scenihr) recent advances in the potential interconnection between antimicrobial resistance to biocides and antibiotics relationship of sanitizers, disinfectants, and cleaning agents with antimicrobial resistance summary report of an fao meeting of experts. fao antimicrobial resistance working group evaluation of antibiotic resistant bacteria in home kitchens and bathrooms. infection control and epidemiology the frequency of bacteria and antibiotic resistance in homes that use and do not use surface antibacterial agents investigation of antibiotic and antibacterial agent cross resistance in target bacteria from homes of antibacterial product users and non users antibacterial cleaning products and drug resistance the relevance of hygiene to health in developing countries antibiotic resistance in india: drivers and opportunities for action clean water and sanitation united nations educational, scientific and cultural organization (unesco) world water assessment programme. the united nations world water development report : leaving no one behind occurrence of faecal contamination in households along the us-mexico border impact of prescribed cleaning and disinfectant use on microbial contamination in the home coli from dishcloths as an indicator of hygienic status in households microbial contamination in kitchens and bathrooms of rural cambodian village households world health organization/united nations children's fund. progress on drinking water, sanitation and hygiene: update and sdg baselines hands, water, and health: fecal contamination in tanzanian communities with improved, non-networked water supplies sirajul islam m. a communityrandomised controlled trial promoting waterless hand sanitizer and handwashing with soap bacterial hand contamination among tanzanian mothers varies temporally and following household activities key: cord- -w t h authors: anderson, diana c.; grey, thomas; kennelly, sean; o'neill, desmond title: nursing home design and covid- : balancing infection control, quality of life, and resilience date: - - journal: j am med dir assoc doi: . /j.jamda. . . sha: doc_id: cord_uid: w t h many nursing home design models can have a negative impact on older people and these flaws have been compounded by coronavirus disease and related infection control failures. this article proposes that there is now an urgent need to examine these architectural design models and provide alternative and holistic models that balance infection control and quality of life at multiple spatial scales in existing and proposed settings. moreover, this article argues that there is a convergence on many fronts between these issues and that certain design models and approaches that improve quality of life, will also benefit infection control, support greater resilience, and in turn improve overall pandemic preparedness. residential care settings for older people are known variously as "nursing homes," "long-term care facilities," or "care homes." in general, it is argued that the design of many of these facilities do not adequately support quality of life for older people, , and now this is compounded by the covid- pandemic which illustrates how they are ill-designed for infection control and the protection of older people who are most at risk in our society. furthermore, this pandemic has illustrated the importance of space and spatial practices such as social distancing, isolation, or quarantine, all of which have immediate and long-term implications for the built environment in terms of planning, urban design, and architecture. , this article identifies the urgent need to examine these design models and provide alternative and holistic models that balance infection control and quality of life at multiple spatial scales in existing and proposed settings. the convergence on many fronts between these issues alongside certain design models and approaches that improve quality of life can also benefit infection control, support greater resilience, and in turn improve overall pandemic preparedness. built environment issues are of considerable importance in longterm care settings where older residents live in close quarters and often have high levels of impairment and chronic illness, all of which can lead to a greater infection rates and mortality. e in addition to physical health issues, the built environment of long-term care exacerbates psychosocial and mental health challenges of covid- as a result of quarantine, constrained social interaction, restricted visits from family and friends, the cancellation of shared activities, or the wearing of personal protective equipment by staff. , these interventions are particularly difficult for people with a cognitive impairment or a person that walks with purpose, formerly termed "wandering." finding a balance and convergence among infection control, quality of life, and overall resilience although the covid- pandemic has made it apparent that the design or retrofit of long-term care settings will have to tackle many difficult infection control challenges, additional recognition that the convergence between design for infection control and design for improved quality of life can yield an overall resilience is needed. in the following sections we explore these concepts further. in a series of studies, nursing home residents describe a range of issues important to their well-being, consistently identifying space and the built environment as factors. barney argues that community involvement and interaction is critical to quality of life in nursing homes. at the community scale, rijnaard et al. highlight the importance of proximity to a person's home community, contact with a familiar neighborhood, and access to local services or shops for small purchases. other major themes identified as important to nursing home residents include generativity, spiritual well-being, homelike environment, and privacy. aspects contributing to thriving in nursing homes challenge the traditional passive perspective of residents and instead emphasize more active aspects. these include positive relationships with other residents including visiting each other's rooms, participation in meaningful activities, and opportunities to go outside the residence, including visiting family, organized tours, attending church, or experiencing nature. qualities of the physical environment includes bright, spacious and private rooms with private bathrooms. qualities of the environment are also connected to the wellbeing of older adults in institutions, linked to main categories including "well-being in public and private spaces" and "lack of well-being in public and private spaces." experiences of being together and forming friendships is important for public spaces such as a lounge, whereas peacefulness is fundamental to relaxation and sleep in a resident's private room. conversely, being excluded from the group in lounge settings can be a source of negative feelings, whereas feelings of incompetence in private spaces such as not being able to use the bathroom can undermine well-being. the sense of home experienced by residents is influenced by a number of jointly identified factors, including the building and interior design. residents and relatives stress the importance of having a connection with nature and the outdoors. important themes contributing to a sense of home include the physical view; mobility and accessibility; and space, place, and the social environment. a holistic understanding of which features of the built environment are appreciated by the residents can lead to the design and retrofitting of nursing homes that are more in line with personal wishes and can impact positively on the quality of life and the sense of home of nursing home residents. the term "resilience" is gaining momentum within design professions given increasing environmental uncertainty and the current pandemic events. hildon et al. define resilience as "flourishing despite adversity" and examine the connection between resilience and quality of life for older people. for people with dementia, christie et al. argue that resilience or "adaptation in the face of adversity" is influenced by a person's "protective factors," including "a sense of connectedness with others," a "sense of mastery and control," and "meaning making opportunities." in this context, the quality of life issues discussed in the previous section have implications for resilience, yet very little attention has been paid to these issues in relation to nursing home design. although current design strategies have been primarily reactive to the context of covid- , a prospective approach to improving quality of life through architectural design, which includes maintaining connection to others and an overall focus on health, is a critical part of pandemic preparedness as it strengthens resilience. quality of life and care issues pertain to all aspects of the nursing home built environment (ie, from nursing home location and interaction with the community, down to building details, components, and technology), therefore we adopt a spatial framework spanning macro (overall urban setting), meso (neighborhoods and districts), and micro-scale level issues (site/building design). this multi-scalar approach (figure ) draws on both urban design and geographical gerontology and is used to briefly investigate examples of convergence/divergence among quality of life, infection control or pandemic preparedness, and overall resilience of nursing homes. furthermore, this spatial framework helps understand the issues around the lived experience of older people, community integration, and quality of life in nursing homes; issues that are also critical for resilience. proximity to a person's home community place attachment and a sense of home are complex issues tied not only to a particular dwelling, but also to the broader community, familiarity, and sense of belonging. for instance, a nursing home within a person's community has been shown to have pragmatic benefits (proximity to family), but also a factor in maintaining a sense of self through continuity with a place or community. these factors are rarely taken into account, reflected in comments from advocacy groups that state that the practice of locating nursing homes outside towns and villages "cuts residents off from community life and social interaction, and isolates those residing in them, thereby lessening their quality of life." given the importance that christie et al. ascribe to a "sense of connectedness" for resilience, proximity to a person's home community may be a critical factor in supporting and helping them adapt to adversity. although access by family and friends during a pandemic may be an infection risk and has resulted in restricted visiting has been enforced during covid- , , this cannot be sustained due to the loneliness, anxiety, and sense of loss and besiegement that this creates. integration with health and social care, and emergency services mapping local resources and creating service and care pathways among acute care, long-term care, health services, and the local community are critical to the implementation of integrated care for older persons. this integration is vital during certain emergency situations, first for evacuating residents of nursing homes to hospitals if required, and second for bringing emergency and medical aid to residents where evacuation is not safe or appropriate. fig. . nursing home design and the macro, meso, and micro spatial scales. many of the overall neighborhood issues that support quality of life and resilience (eg, public transportation, access to amenities, access and size of open and green spaces ), will also benefit the residents and staff of nursing homes, and family members. for older people in particular, a well-designed public realm with safe, accessible, and attractive pedestrian space is linked to walkability and improved social outcomes. furthermore, if nursing homes are to be more integrated with communities as promoted by certain nursing home models such as the green house model, then the neighborhoods in which they are embedded must be of a certain quality. indeed, walkable and activity friendly neighborhoods have been shown to have benefits for noncommunicable and infectious diseases by supporting walking and cycling, and by providing local amenity spaces for safe exercise and socialization. urban design that unites quality of life and pandemic resilience is vital. for instance, accessibility for wheelchairs and mobility devices is crucial for many older people and this requires wide footpaths, a feature that also supports covid- erelated social distancing. air quality issues at local community level research shows that older people are more vulnerable to both short-term and long-term air pollution. emerging research is also linking poor air quality to higher rates of covid- , making air quality at a neighborhood scale both a quality of life and resilience issue. care model and overall building configuration some of the environmental issues that make nursing homes prone to infection may include the number and density of residents, the numbers of staff and visitors accessing a single building, staff movement between multiple residents rooms, and singular high-traffic communal areas such as dining rooms or living spaces. , early research has suggested small settings with fixed staff that minimized entry/re-entry lower covid- infection rates. , these studies found that staff were a key source of outbreaks, suggesting that smaller, more autonomous residences with dedicated staff may improve infection control. in this regard, small-scale, homelike settings, known variously as "household" or "green care" models, , may prove beneficial. the "green house" model is an example of these households and typically have to residents with private bedrooms and bathrooms and small number of fixed staff (figure ) . the bedrooms surround a central living area and open kitchen and have access to a protected outdoor space. household models are linked to improved outcomes for residents, staff, and visitors, at the same time some aging advocates have promoted household models as a they allow covid- outbreaks to be managed in one household without affecting adjacent or colocated settings. the small number of people in a typical "household" setting reduces the amount of human traffic that may consequently reduce infection spread. signage at entrances and on key internal routes instructing people not to enter if they have certain symptoms, advising them about social distancing and hygiene, along with the provision of hand sanitizing facilities is advised. hand sanitizers should also be place in all resident rooms (ideally inside and outside door) and at other key spaces such as common rooms. although not specifically aimed at nursing homes, the american institute of architect's (aia) re-occupancy assessment tool contains useful advice, such as the use of one-way traffic flow systems in circulation areas; removing clutter from corridors to increase space for social distancing; the use of separate entrances and exits; or separate staff, resident, and visitor entrances. they also suggest contactless, motion sensor, or automatic operating doors. private rooms with bathrooms are linked to quality of life in nursing homes, improved infection control, and can be used to isolate confirmed or suspected cases of covid- and to facilitate visitors. the quality of these rooms is important and therefore size, good natural light, and ideally access to a private outdoor space or balcony would improve the experience for the resident, visitor, and staff. restricted access to common areas or shared living areas can be isolating for residents and a balance must be struck among social engagement, communal activities, and infection control. this issue pre-dates covid- , with stone et al. arguing that "maximizing quality of life for the resident while minimizing transmission of infections is a known challenge facing nh staff." although more research is required in this area, it is useful to consider the advice set out by the aia to change layouts in shared spaces to facilitate social distancing or provide outdoor seating and exterior social areas for occupants and visitors. although some nursing homes may need to zone or cohort patients, it is still important to ensure there is safe walking space, especially for residents with a cognitive impairment who may "walk with purpose." in addition to the resident room and communal shared spaces, the integration of "intermediate spaces" (ie, porches, alcoves in corridors, and seating placed strategically to allow viewing of the streetscape) supports the activities of viewing, watching, and observing, which have been noted as critical components of nursing home life. in an analysis of these transitional spaces, granger notes that they provide visual stimulus through purposeful design, critical for physical and mental health "even in old age. there is joy, companionship, and spontaneity which, i would add, is facilitated by the material contextdthe places and porchesdthat allow the elderly to touch the world beyond." although covid- has challenged architects and nursing homes to consider design strategies for minimizing outbreaks in these congregate living facilities, "it is imperative that the social needs of institutionalized seniors are accounted for, both in physical form and in programmatic strategy." space to exercise, access to nature, exposure to sun, and fresh air are some of the proven benefits of outdoor spaces in nursing homes. the outdoors can boost beneficial vitamin d for residents and provide an environment that is inhospitable to pathogens through reduced moisture, uv light, and the diluting effects of fresh air and air movement. early research from chinese hospitals treating covid- found outdoor hospital spaces had undetectable or very low concentrations of the virus. although more research is required in this area, reviews of previous pandemics argue for the benefits of spending time outdoors. although there has been a focus on dedicated staff entrances in the context of this current pandemic, staff must also be provided with adequate changing and hygiene facilities, with the flexibility to segregate these areas further in the setting of pandemic preparedness. space that can be converted to accommodate staff testing, in addition to a central command center, which might be needed to oversee facilities operations in this context, can also be considered. in addition, we advocate for respite areas for staff members that include access to natural light and nature, given the challenges posed by covid- in the context of mental health. , ventilation and air quality at the building level ventilation and air quality are critical to the well-being of older people in nursing homes , and are an important infection control issues. increasing air flow through natural and mechanical ventilation within buildings may help dilute and remove the virus, whereas higher relative humidity can be detrimental to viruses. although many heating, ventilation, and air conditioning systems (hvac) will not have built-in air humidification equipment, these systems may be appropriate in high-risk settings or low humidity regions. although most nursing homes may not have airborne infection isolation rooms, lynch and goring outline a number of steps to adapt a resident rooms with existing hvac to create a slightly negative-pressure room to reduce the spread of infected airborne droplets to the main facility. this involves installing supplemental exhaust ventilation, upgrading filters, and keeping doors closed to maintain the negative pressure. the macro, meso, and micro issues identify examples of the overlaps between design for quality of life, infection control/pandemic preparedness, and overall resilience. examining any new approaches to nursing home design through the lens of quality of life and resilience will help reduce fragility of long-term care and protect against ongoing infectious threats such as influenza or covid- , or future pandemics. table provides an overview of each spatial scale with proposed design solutions for consideration. although current gaps exist in the research for residential buildings for older adults and health outcomes, we propose a convergence between design for infection control and design for improved quality of life in order to yield resilience and subsequently, pandemic preparedness. although we recognize that issues around cost in the context of retrofitting existing facilities in addition to new construction are an important part of the necessary changes in nursing home living, monetary analysis is outside the scope of this paper. although costeffectiveness of using evidence-based design strategies in the acute care setting is well documented, further exploration is needed in the area of nursing home design and health outcomes. the future of residential design for older adults should promote quality of life, social interaction, and engagement, but more importantly foster choice and collaboration with older adults. this culture of resilience and care must occur at various spatial scales and include individual buildings in addition to a broader integration within communities. resilient nursing home building design needs to respond to potential vulnerabilities and allow the built environment certain flexibility in the face of changing conditions. given the impending consequences of infectious outbreaks, it is imperative that health care leaders collaborate with architects and designers to invest in long-term care facility designs for maximum resiliency. collaboration between the health and design professions can yield design solutions that promote quality of life alongside pandemic preparedness and resiliency. overall neighborhood factors, public realm disconnection from, or location within poor-quality neighborhood or public realm. age-attuned urbanism that creates walkable, safe, accessible, and attractive neighbors as the nursing home context. air quality poor community or neighborhood air quality. local policies to reduced traffic emissions, or improve air quality, the presence/planting of urban trees. micro (site/building design) care model and overall building configuration large institutional settings that undermine quality of life and increase potential ingress of virus. small-scale homelike models that enhance wellbeing and reduce potential ingress of virus. access and internal circulation large settings with high-traffic levels, singular entrances/exits with high usage and contamination risk, lack of signage or information, lack of social distancing space in corridors. smaller settings with dedicated resident/visitor and staff access, contact free doors, generous circulation space and controlled traffic flow. key resident spaces shared rooms and bathrooms, poor-quality rooms, and lack of direct access to outside, infectionrelated restricted access to shared spaces and isolation. high-quality single rooms with outdoor spaces, carefully managed shared spaces, provision for transitional spaces, safe walking areas, and access and views to outside. staff space consolidated spaces currently provided (ie, central locker room, centralized care stations). decentralized care stations, ability to subdivide staff spaces and provision for respite areas to support mental health. outdoor areas and spaces to exercise lack of access to outdoors and nature, and lack of outdoor exercise areas. provision of safe, secure, and easily observed/ monitored outdoor space within easy access for all residents. air quality/ventilation poor ventilation and air quality. provision of high-quality natural and mechanical ventilation as required, carefully designed/ maintained hvac. an international definition for "nursing home living well in care homes: a systematic review of qualitative studies nursing home design: a misguided architectural model covid- in nursing homes smart lifts, lonely workers, no towers or tourists: architecture after coronavirus. the guardian how the covid- pandemic will change the built environment nursing homes are ground zero for covid- pandemic long-term care facilities and the coronavirus epidemic: practical guidelines for a population at highest risk coronavirus disease in geriatrics and long-term care: the abcds of covid- world health organization. mental health and psychosocial considerations during the covid- outbreak infection prevention and control guidance for long-term care facilities in the context of covid- : interim guidance community presence as a key to quality of life in nursing homes the factors influencing the sense of home in nursing homes: a systematic review from the perspective of residents quality of life in nursing homes thriving in nursing homes in norway: contributing aspects described by residents well-being and lack of well-being among nursing home residents a three perspective study of the sense of home of nursing home residents: the views of residents, care professionals and relatives picture your nursing home: exploring the sense of home of older residents through photography examining resilience of quality of life in the face of health-related and psychosocial adversity at older ages: what is "right" about the way we age promoting resilience in dementia care: a person-centred framework for assessment and support planning disaster preparedness for seniors: a comprehensive guide for healthcare professionals resilient urban form: a conceptual framework geographical gerontology: perspectives, concepts, approaches the meaning of "aging in place" to older people the importance of place for older people moving into care homes housing-choicesfor-older-people-in-ireland-time-for-action- .pdf nursing homes or besieged castles: covid- in northern italy a step framework to implement integrated care for older persons talking while walking: an investigation of perceived neighbourhood walkability and its implications for the social life of older people the green house model of nursing home care in design and implementation activity-friendly neighbourhoods can benefit noncommunicable and infectious diseases planning and designing for pedestrians using mobility equipment covid- : keeping things moving adverse effects of outdoor pollution in the elderly association between short-term exposure to air pollution and covid- infection: evidence from china characteristics of u.s. nursing homes with covid- cases how can pandemic spreads be contained in care homes? post-occupancy evaluation of a transformed nursing home: the first four green houseÒ settings effect of design interventions on a dementia care setting small-scale homelike care in nursing homes sage advocacy submission to covid- nursing home expert panel sage advocacy how can pandemic spreads be contained in care homes guidelines for preventing respiratory illness in older adults aged years and above living in long-term care: a rapid review of clinical practice guidelines. medrxiv occupancy assessment tool v . . available at european centre for disease prevention and control. infection prevention and control for covid- in healthcare settings e fourth update understanding infection prevention and control in nursing homes: a qualitative study managing the covid- pandemic in care homes for older people home/viewing-watching-observing-aging-and-the-architecture-of-intermediatespace outdoor environments at three nursing homes optimisation of vitamin d status for enhanced immunoprotection against covid- aerodynamic characteristics and rna concentration of sars-cov- aerosol in wuhan hospitals during covid- outbreak. biorxiv the open-air treatment of pandemic influenza mental health care for medical staff in china during the covid- outbreak uncovering the devaluation of nursing home staff during covid- : are we fueling the next health care crisis? indoor air quality and thermal comfort in elderly care centers indoor air quality, ventilation and respiratory health in elderly residents living in nursing homes in europe a review of the research literature on evidence-based healthcare design novel coronavirus (covid- ) pandemic: built environment considerations to reduce transmission practical steps to improve air flow in long-term care resident rooms to reduce covid- infection risk fable hospital . : the business case for building better health care facilities key: cord- -q i authors: iaboni, andrea; cockburn, amy; marcil, meghan; rodrigues, kevin; marshall, cecelia; garcia, mary anne; quirt, hannah; reynolds, katelyn b.; keren, ron; flint, alastair j. title: achieving safe, effective and compassionate quarantine or isolation of older adults with dementia in nursing homes. date: - - journal: am j geriatr psychiatry doi: . /j.jagp. . . sha: doc_id: cord_uid: q i nursing homes are facing the rapid spread of covid- among residents and staff and are at the centre of the public health emergency due to the covid- pandemic. as policy changes and interventions designed to support nursing homes are put into place, there are barriers to implementing a fundamental, highly effective element of infection control, namely the isolation of suspected or confirmed cases. many nursing home residents have dementia, associated with impairments in memory, language, insight and judgment that impact their ability to understand and appreciate the necessity of isolation and to voluntarily comply with isolation procedures. while there is a clear ethical and legal basis for the involuntary confinement of people with dementia, the potential for unintended harm with these interventions is high, and there is little guidance for nursing homes on how to isolate safely, while maintaining the human dignity and personhood of the individual with dementia. in this commentary, we discuss strategies for effective, safe and compassionate isolation care planning, and present a case vignette of a person with dementia who is placed in quarantine on a dementia unit. andrea.iaboni@uhn.ca highlights . what is the primary question addressed by this study? what strategies can used in the nursing home setting to ensure the safe, effective, and compassionate quarantine of dementia patients with symptoms of covid- ? while there is a clear ethical and legal basis for the involuntary confinement of people with dementia, the potential for unintended harm with these interventions is high, and there is little guidance for nursing homes on how to isolate safely, while maintaining the human dignity and personhood of the individual with dementia. to address these gaps, there needs to be an urgent investment in proper staffing, training, and safe equipment in the nursing home sector. nursing homes that have not yet been impacted by covid- have a narrow window of opportunity to prepare for the isolation of residents with dementia and front-line staff are now looking to their leadership and government bodies to help prepare to take these actions as safely and compassionately as possible nursing homes are facing the rapid spread of covid- among residents and staff and are at the centre of the public health emergency due to the covid- pandemic. as policy changes and residents of nursing homes account for a disproportionate number of covid- related deaths, making up half of all covid- related deaths in western countries ( ) . in ontario, the most recent data shows a % case fatality rate in nursing home residents ( ) . one driver of the transmission of the virus in nursing homes has been delays in implementing appropriate infection control protocols ( ) . we know that achieving effective quarantine or isolation is challenging in residents with dementia, whose compromised cognitive functioning, insight and judgment impact their capacity to voluntarily comply with restrictions . in this commentary, we will discuss important barriers to achieving isolation in this population, including the need for ethical and clinical frameworks to guide rapid and decisive decision-making. we also provide a case vignette illustrating an approach to safe, effective and compassionate quarantine of an older adult with dementia. quarantine and isolation are highly effective tools in the control of contagious disease ( ), but they have been difficult to implement effectively in nursing homes. a pre-pandemic systematic review identified that some common features of outbreaks in nursing homes are delay in the implementation of control measures, and insufficient application of isolation and cohorting ( ) . in particular, the perception that infection control practices are in conflict with quality of life goals and the rights of the resident are an important barrier to their effective use ( ) . several features of the covid- infection -the duration of the incubation period, asymptomatic spread, and atypical presentations in older adults-represent challenges to infection control in nursing homes. isolating and screening nursing home residents based on symptoms alone would fail to identify approximately half of residents with covid- ( ) . widespread screening in nursing homes may be required, which will identify both symptomatic and asymptomatic covid- positive residents who need to be isolated. nursing home staff are experiencing moral distress due to the potential harms associated isolation of residents, as well as the severe consequences if these infection control measures are not effectively implemented. healthcare providers in nursing homes thus require substantial moral resilience and courage during these pandemic times, which can be fostered by ethical capacity building and institutional supports ( , ) . from an ethical perspective, the context of a pandemic shifts priorties towards the protection of a population (in this case, the other residents and staff), while providing safeguards for individual rights. principles used to balance the individual rights with collective safety include use of the least restrictive alternative to achieve effective infection control, addressing fairness and justice, and providing transparency and accountability in decision-making to maintain public trust ( ) . these public health principles are in contrast to the principles which have guided dementia care best practices over the past few decades, with a focus on relational ethics and the ethics of care, and emphasizing trust and responsiveness within the individual therapeutic relationship ( , ) . the use of an ethical framework addressing these conflicts can help to support and guide ethical decision-making ( ) . anecdotally, we have heard that uncertainty about nursing home regulations, fear for staff safety in trying to isolate residents, and lack of specific guidance about how to isolate residents, have contributed to nursing homes failing to react decisively to isolate residents with dementia. while international guidance has been consistent in recommending isolation of residents of nursing homes with confirmed or suspected covid- ( ), none of these guidelines directly address the practical challenges faced when trying to isolate people with dementia effectively while maintaining their safety and human dignity. there are several important gaps to address here. first, clinical guidance is needed for the development of isolation care plans that address the personhood needs of the isolated resident and that incorporate safeguards to minimize any harms. second, there is a need for guidance about the use of pharmacological management, seculsion, and physical restraint measures when less restrictive measures have failed. in the case vignette, we describe the safe and effective use of some of these measures and the steps taken to minimize harm, in a well-resourced setting. staffing shortages, lack of training and lack of resources place residents at higher risk of harm from more restrictive interventions, including the risk of falls and injuries, stroke, deconditioning, skin breakdown, blood clots, and death. overall, there needs to be an urgent investment in staffing and training, and additional resources provided to the nursing home sector to support the effective use of necessary infection control measures. in summary, nursing homes that have not yet been impacted by covid- have a narrow window of opportunity to prepare for the isolation of residents with dementia. front-line staff are looking to their leadership and government bodies now to help staff plan and prepare to implement effective infection control measures as safely and compassionately as possible. mrs x, a year-old woman with frontotemporal dementia was admitted to a tertiary dementia behavioural unit. in her nursing home, she would closely follow staff and residents while making loud, perseverative vocalizations. she was large, healthy, strong, and intimidating. seven days after admission, her nursing home confirmed covid- infections in several residents and staff, including a nurse with direct contact with mrs x. while mrs. x was asymptomatic, the hospital's guidelines stipulated that covid- exposed individuals should be quarantined for days ( days of which remained). we informed her substitute decision-maker of the necessity of quarantine and obtained consent for all measures. mrs. x had an initial negative covid- swab. the treatment team developed an "isolation care plan" using what was known about mrs. x. the plan included providing math worksheets and colouring pages, and playing movies and music on a tablet. signs were posted in her room for orientation ( ) . from noon to pm, an additional nurse was assigned to her, which served to minimize staff exposed and personal protective equipment (ppe) use. it became clear that mrs. x was unable to voluntarily isolate in her room, despite frequent interactions with her nurse and other staff. due to her size and strength, she could not be prevented by staff from leaving the room. seclusion was not possible: the door could be unlocked from inside the room. a door exit alarm ( ) was used to notify us if she was leaving or another resident was entering the room, but staff responding to the alarm were often faced with directing mrs. x without time to don ppe. given that less restrictive measures were not consistently effective, the decision was made to use physical restraints when necessary. mrs. x was restrained in a geriatric recliner using a pelvic holder with three staff in ppe required to safely initiate restraint. a tray table allowed her to engage in preferred activities and to hold snacks and drinks. in keeping with hospital policies, she was restrained at intervals no longer than two hours, and she was monitored and socially engaged by staff every minutes for the first hour and every minutes thereafter. if she fell asleep, she was assisted into bed. from the perspective of pharmacological management, her antipsychotic medication was changed to a more sedating agent, loxapine mg bid, and increased to mg bid three days later, with loxapine mg used as needed. over the -day period of quarantine, she received doses of as needed loxapine, and was restrained for hours ( % of waking hours). her final covid- swab was negative. the isolation restrictions ended and mrs. x was able to move freely around the unit. there were no obvious physical or psychological consequences of the quarantine. mortality associated with covid- outbreaks in care homes: early international evidence. ltccovid.org, international long-term care policy network, cpec-lse impact of covid- on residents of canada's long-term care homes -ongoing challenges and policy response. ltccovidorg, international long-term care policy network, cpec-lse epidemiology of covid- in a long-term care facility interventions to mitigate early spread of sars-cov- in singapore: a modelling study a systematic review on the causes of the transmission and control measures of outbreaks in long-term care facilities: back to basics of infection control infection prevention and control in nursing homes: a qualitative study of decision-making regarding isolation-based practices asymptomatic and presymptomatic sars-cov- infections in residents of a long-term care skilled nursing facility cultivating moral resilience moral courage in healthcare: acting ethically even in the presence of risk ethical and legal challenges posed by severe acute respiratory syndrome: implications for the control of severe infectious disease threats achieving care and social justice for people with dementia re-examining the basis for ethical dementia care practice ethical guidance for people who work in long-term care: what is the right thing to do in a pandemic? dementiability; c fall prevention and anti-wandering; c a.i. conceived the idea and wrote the manuscript. ac, mm, kr, cm, mag, hq, kr, and rk were involved in the review of the case, collected material for the report, and contributed to the writing of the manuscript. the authors report no conflicts with any product mentioned or concept discussed in this article key: cord- - md fq authors: sofo, adriano; sofo, antonino title: converting home spaces into food gardens at the time of covid- quarantine: all the benefits of plants in this difficult and unprecedented period date: - - journal: hum ecol interdiscip j doi: . /s - - - sha: doc_id: cord_uid: md fq people are facing uncertain and difficult times in the face of the covid- pandemic. the benefits of plants (psychological, health, economic, productive) in this period of forced isolation can be of key importance. if many of us have to self-isolate in urban or suburban environments, we need something to do to keep our bodies and minds active and fed. in such a challenging scenario, a vegetable garden in home spaces can bring recreational, health, economic and environmental benefits. regardless of the covid- pandemic, there is untapped potential for this kind of garden to impact environmental outcomes, public awareness, and market trends. home vegetable gardens could provide a small-scale approach to the sustainable use of natural resources, leading towards self-sufficiency, self-regulation, sustainability, and environmental protection. i am a professor of plant biology and soil chemistry in an italian university. i and my family are at the moment practicing "social isolation" at home, and this situation will be probably continue for the unforeseeable future. we are allowed to go outside only for the purchase of food and other basic necessities, and the disposal of rubbish, in a radius of m from home. because of the extreme contagiousness of covid- , unnecessary activity outside is strongly discouraged. within a few days, our daily life was turned upside down and we were forced to change the old habits. right now (april , ), italy is one of the countries hardest hit by positive diagnoses, , deaths, and , recoveries (dipartimento della protezione civile ), but we are not sure if the contagion peak has been reached and how long this pandemic will last. as do most italian citizens, i live in a condominium apartment, where families share common spaces and services, without a garden nor plants. in these conditions, one would think we would have a great deal of time on our hands, but on the contrary, this time is unusable. this is because of a general lack of concentration, also because of the daily bad news, and the significant efforts dedicated to the reorganization of family life. schools, universities, libraries, museums, and theatres are shut down. lessons for schoolchildren and students take place only remotely and, as a university lecturer, i am spending at least - h per day in front of my laptop for lecturing and tutoring my students, many of whom are concerned about the unprecedented terrible and unimaginable situation. during these laptop-hours, i am also in contact with colleagues and friends all over the world, many of whom i hadn't heard in years, all asking how we are. all these things are substitutes for the life i had but i considered myself very lucky and grateful: i can work from my laptop, an opportunity that not everyone has, and i am physically healthy and mentally active. despite these distractions, i had to reduce all this accumulated mental stress, psychological burden and, why not, make myself partly self-sufficient from a food standpoint, while not living in the countryside and having open spaces to cultivate. as a plant and soil biologist, i know that plants are the foundation of a multitude of ecosystem services (primary production, provisioning, supporting, regulating and cultural, etc.) and that an environment rich of plants, much more than we are aware of, can guarantee our physical and mental wellbeing (bratman et al. : russell et al. shwartz et al. ; bratman et al. ) . my apartment is not so big but i have an empty and unutilized -m terrace upstairs and our mediterranean climate is mild in the spring, so, i asked myself, why not convert it into a vegetable garden? besides cultivating and trying to be partially self-sufficient for fruit and vegetables (that are expensive and hard to find now), this could give me psychological benefits. there is an association between home gardening and physical and mental well-being, and this has been demonstrated for various categories of people at risk (grabbe et al. ; john et al. ; quick et al. ; van lier et al. ) . i had a lot of material in my garage, some pipes, shelves, supports, other stuff, and hardware. what i didn't have, i would order online. then, i acted scientifically, calculating the total costs, needed materials and items, plant species to be cultivated, types of soil and pots, production per unit of surface, psychological effects of plants on my family. documenting everything, taking photographs, and updating a personal/laboratory diary were my imperatives. we all, humans, plants, and soil would be part of an experiment, and all this without moving from home. here i present a short paper on my experience, focusing on the benefits of plants (psychological, health, economic, productive) in this period of forced isolation. if many of us have to self-isolate in urban or suburban environments characterized by the lack of spaces and resources, which negatively affects our brain activity (lambert et al. ) , we need something to do to keep our bodies and minds active and fed. i couldn't think of better work than setting up a home vegetable garden. i know that the idea seems, at a first glance, strange and inappropriate -considering the number of current and future problems -but, as a scientist, i felt i had to do it. with people now facing uncertain and difficult times in the face of covid- , i thought i might dedicate this article to the positive action of plants and see how they can help us. i have always been interested in urban permaculture, aimed at producing food in urban areas and promoting energy efficiency and self-production. because it starts from personal initiative and your own home, it is here, more than in all the other sectors of permaculture, that the imagination and the flair of the solutions adopted are surprising. urban permaculture can be concrete and pragmatic, aimed at the production of food in urban areas, replacing ornamental plants with edible species. the selection of plant species to cultivate in outside home spaces should be based primarily on their ability to cope with the harsh conditions of the urban environment, such as high wind and irradiance, lack of organic material and nutrients, and intermittent drought (pavao-zuckerman ). therefore, careful plant selection should be integrated into outside space design (lee et al. ; john et al. ; chaudhary et al. ) . urban habitats are unique and harsh environments for established plant communities, largely because of increased abiotic stresses, such as disturbance, pollution, drought, radiation, heat and microclimate extremes, but also because of the reduction of colonization and modifications in soil microbial diversity (e.g., mycorrhizas or bacteria). another additional difficulty, confirmed by my usual plant dealer, is that there is a rush on vegetable seedlings in garden centers because many more people are now wanting to grow their food. the spread of covid- has caused panic buying at supermarkets, so many families are skipping the supermarket and heading to their local garden center to grow their own and become self-suff cient. therefore, it is often necessary to wait on average one week to get seedlings (starting from the seed is not advisable, as it would take too long). in my small way, i will show you what you could do in your apartment space, on a balcony, a terrace or in a little courtyard. mine is a very practical example of urban permaculture and i hope that could contribute to lightening your stress in this complicated period. from various sites on the web, it is possible to draw countless ideas for designing and managing a small home garden. regardless of space and financial availability, you devise your slice of food independence. the most important thing is to start and be ready to try, without being afraid of making mistakes. a vegetable garden in the city has many advantages. first, you will produce healthy vegetables for yourself. then, there is the psycho-physical well-being that comprises doing a little physical activity and enjoying the satisfaction of seeing your vegetables grow (reed et al. ) . even at the community level, a vegetable garden has its positive sides: a green spot in the cement brightens the view, purifies the air, and cools the environment because of plant transpiration. on an ecological level, an urban garden is a refuge and a shelter for many animals -you cannot imagine how many. but let's proceed step by step. here is my decalogue based on my experience at the moment. for clarity, please note that i describe a garden in a mediterranean environment in the springtime. ) water is the most important issue. on terraces, there are usually rain gutters. instead of wasting rainwater, which moreover is of excellent quality, as it is saltfree, just adapt a tank (in fig. , a -liter resin tank) to the collection of rainwater. the lid, necessary to avoid water evaporation, has been perforated to facilitate the entry of the tube. considering the heat of a terrace in the summer months and the outrageous demand for water for transpiration and evapotranspiration, an additional reserve of water is useful and falls within the perspective of sustainability and saving of natural resources. in a few hours of moderate rain, the tank will fill. if in excess, the accumulated water could be also very useful for cleaning the terrace, which gets dirty when it is transformed into a vegetable garden. in the long run, it might be better to buy a pressure washer to save more water. after the first initial investment (not excessive), you will save a lot of water. other simpler tanks and buckets can also collect water. for aqueduct water, i recommend an irrigation system with an electronic control unit that sends water to the root system of the plants, reduces losses by evaporation, water consumption and costs of the water bill. here, the higher costs for the irrigation system should be taken into account. ) the scaffolding. here too there are various solutions. if we use large pots (a choice that i recommend), they should be raised and not positioned on the ground. this is useful both to better clean the terrace and to not tire you out. the most sustainable choice is the perforated steel or aluminum beams used to construct the shade canopies in the parking areas of shopping malls and supermarkets in europe, and they are inexpensive (fig. ) . by positioning several poles, the structure will be light, stable and will not bend even with the wind because the perforated surface does not offer much resistance. this kind of structure is very useful if you want to train a wild vine (ampelopsis brevipedunculata and parthenocissus quinquefolia) or wisteria (wisteria spp.), or other climbing plants that also have a decorative and shading function. in mediterranean climates, the hot late spring/summer days can raise soil temperature in the pots to even reach - °c and air temperature - °c , so it is advisable to use shade cloth or shading vegetation on the scaffolding to avoid burning roots and shoots of the plants so laboriously cultivated. ) the containers. here you are spoiled for choice but remember that we want to recycle water and save money. we will therefore not buy expensive pots. as simple containers, you can also use inexpensive black/transparent plastic containers that you will drill at the base for drainage, or the wooden boxes from greengrocers (nowadays very rare to find). if the choice falls on the pots, one must be careful and containers without good drainage and/or not transpiring are not recommended. here, it is easy for the roots to suffer from high heat or water stagnation. the best choice would be that of the classic rectangular brown clay pots, but they are heavy, fragile, and expensive (fig. ) . on the other side, the plastic ones are light, not expensive, and long-lasting. instead, we will use common plastic containers or other containers to transport soil, grass clippings, root residues, and compost. if desired, the containers can be built with wooden beams and sheets of various kinds but, considering that it is a terrace and that we must avoid water infiltration and stagnation, better to go with the clay or plastic pots (or a mixture of both). ) what to plant? here too the choice is wide. since the surface, even if you use several pots, is limited, all species that have a too low total fruit/biomass ratio (e.g., legumes) are not recommended. you would risk wasting too much space and having a minimum harvest. in springtime, you can grow different cultivars of lettuce (lactuca sativa), zucchini (cucurbita pepo), onion (allium cepa), chicory (cichorium intybus), rocket (arugula) (eruca sativa), green and red beet (beta vulgaris), fennel (foeniculum vulgare), chive (allium schoenoprasum), carrot (dacus carota), strawberry (fragaria spp.), late cauliflower/broccoli (brassica oleracea) and spinach (spinacia oleracea), early potato (solanum tuberosum), tomato (lycopersicon esculentum), eggplant (solanum melongena) and sweet/spicy pepper (capsicum spp.), and some fresh legumes, such as broad bean (vicia faba), fresh bean (phaseolus vulgaris), and pea (pisum sativum) (fig. ) . tomatoes and fresh legumes need support when they grow, such as wire or bamboo and plastic posts. each season has its particular harvest, so you will follow the rhythms marked by nature, and together you will have vegetables at zero meters. the potting soil should be organic and perhaps mixed with manure (maximum % w/w), with an expanded clay base to avoid water stagnation. it is best to start from seedlings rather than seed. the cost of the seedlings is not high, so starting from seed, especially for some broad-leaved vegetables, it is also sometimes uneconomical and requires too much time and too much care. after the initial investment of soil, remember that the subsequent additions could be produced from compost. if needed, you can carry out a mineral nitrogen fertilization, particularly recommended in spring. ) and lavender (lavandula officinaliswhose dry inflorescences are excellent for perfuming linen), or saplings (these latter better in circular pots placed on the ground), such as olive (olea europaea), pomegranate (punica granatum) and mulberry (morus spp.), or other useful and undemanding plants, such as aloe (aloe spp.whose inner leaf is a strong antioxidant and can be used for healing wounds and burns), citronella (cymbopogon nardusmosquito repellent) and prickly pear (opuntia ficus-indica) (fig. ) . you might put in some ornamental plants but remember that you are in a permaculture regime and therefore you must not have too many demands. ) the compost. another important consideration is the recycling of waste materials. the vegetable biomass of waste, even of a small vegetable garden, can be high and mixed with waste that would end up in the garbage (fruit skins, vegetable residues, eggshells, coffee grounds, tea bags, etc.) it becomes an excellent starting point for the production of compost. you can also add the shredded roots of the plants you want to replace and recover this fig. the containers used hum ecol precious soil. the waste of a vegetable garden has an optimal carbon/nitrogen ratio (around - ), so it is quickly transformed into soil. the soil residues that remain tied to the roots of old plants can be chopped and mixed with the rest, thus providing a natural starter of bacteria and saprophytic fungi. you will notice that your residues will smell first of fruit and vegetables, then of garbage, then of manure, and finally of fresh soil. at that point, compost became humus. the latter has many advantages: it is a fertilizer rich in carbon, nitrogen, and phosphorus, makes the soil soft and improves its structure (it is, therefore, a soil conditioner), keeps more water when it does not rain, contains billions of microorganisms (many of which with antibiotic effects against phytopathogens, others with plant growth-promoting action) and many others. for chopping, you can use an electric shredder that chops everything except very hard material, such as kernels (fig. ) . with the same volume, smaller pieces offer a larger surface area to the microbial attack and therefore composting is faster and more effective. to contain the compost, you can buy a compost bin (there are various sizes but, for a family of four, a -liter one is more than enough) or, with a little patience, you can build it (fig. ). it will surprise you how soon it will fill up and how much less waste you will produce. on warm days, when the bacterial metabolism is high, turning it now and then with a hoe, the compost will be ready in about three months. in this way of recycling you can produce fresh soil in situ and save on the soil buy. ) biodiversity. your home garden is also a cure-all for passing species. in my case, it is not unusual to see plenty of ladybugs (beneficial because they are carnivorous), various spiders, geckos, lizards, bats (attracted by insects), passerines, turtle doves, magpies, and thrushes (fig. ) . unfortunately, since your vegetable garden is free of pesticides (less pollution), it is normal for pests such as mealy cochineals that attack lemon and olive trees, nematodes that affect tomato roots, and finally cabbagewhite butterflies that lay eggs from which voracious leaf-eating caterpillars will appear, to come, but with patience, by hand or with natural remedies, these can be kept at bay. ) personal satisfaction. the home vegetable garden is satisfying because looking at the vegetables and fruit you have cared for gives a pleasant sense of fulfilment. a pod of a pea plant that tries to climb anywhere or the contrast of colors of a red beet leaf can enchant you. you can make yourself a salad, a fresh sauce or turnip greens, au gratin cauliflower, a vegetable soup with pasta, cooking the vegetables you have harvested, or use the sun-dried leaves or seeds of officinal plants as spices or ingredients for your dishes (fig. ) . with a vegetable garden at home, the value of the products is their real worth, because it only takes into account personal work and there are no additional costs, such as fuel for transportation, synthetic fertilizers, plant protection products, marketing, advertising. ) the costs. the terrace garden allows you to save money in the medium-term, even if this is not the only purpose. of course, there is an initial investment (table ) . we can find much of the listed material for free, build something, and find excellent offers on the internet. therefore, the cost of installation of a home vegetable garden is variable, and it could be much lower than the one i calculated in table . besides, you don't have to do all the things i have listed. it would be better to start on a small scale and expand step by step. as the garden will produce kilos of fresh vegetables (we make an average of - kg year ), at an average price of - € kg , you can recover annual management costs in a brief time. the initial costs are not excessive, if you consider the satisfaction of eating home-grown vegetables. ) not all apartments have large terraces or courtyards to devote to the cultivation of vegetables; often the area is limited to a balcony or even a windowsill. even in cases a vegetable garden in home spaces can provide recreation, enhance physical and mental health, and provide economic and environmental benefits (dunnett and qasim ; hartig et al. ; jennings and gaither ) . there are no greenhouse gas emissions, no use of synthetic fertilizers and pesticides, no leaching losses. regardless of practical challenges and the existential difficulties we face, there is untapped potential for home vegetable gardens to influence environmental outcomes, citizens' consciousness, and market trends. it is time to think about a new way of living that starts from daily activities, with a small-scale and bottom-up approach, based on sustainable use of natural resources and promotion of a subsistence economy and bartering, aimed at lasting well-being in generations both in material terms (food and energy) and psychological terms, able to integrate various disciplines (such as agriculture and animal husbandry, forestry, biology, architecture, engineering, but also economics, sociology, philosophy, and psychology), tending towards selfsufficiency, self-regulation, sustainability, and environmental protection. bill mollison, who coined the term "permaculture" in the s, said that "a culture cannot survive long without a sustainable agricultural base and ethics of land use." my heartfelt suggestion is to stay safe at home now and consider that this pandemic could be an opportunity for a whole new -and likely better -world. covid- is the last warning that gives us time to reconsider human behaviorfrom global warming to the ever-increasing intensity and speed of activities, all of which are related to the principle of the capitalistic system. this pause can help us deliberate how all this can be transformed into a sustainable system; maybe it is a big chance! the impacts of nature experience on human cognitive function and mental health the benefits of nature experience: improved affect and cognition urban mycorrhizas: predicting arbuscular mycorrhizal abundance in green roofs covid- italia -monitoraggio della situazione perceived benefits to human wellbeing of urban gardens gardening for the mental well-being of homeless women nature and health approaching environmental health disparities and green spaces: an ecosystem services perspective the potential for mycorrhizae to improve green roof function brains in the city: neurobiological effects of urbanization living roof preference is influenced by plant characteristics and diversity the nature of urban soils and their role in ecological restoration in cities vegetable garden as therapeutic horticulture for patients with chronic pain a repeated measures experiment of green exercise to improve self-esteem in uk school children humans and nature: how knowing and experiencing nature affect well-being enhancing urban biodiversity and its influence on city-dwellers: an experiment home gardening and the health and well-being of adolescents publisher's note springer nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations key: cord- - qn k authors: yu, hannah j.; kiernan, daniel f.; eichenbaum, david; sheth, veeral s.; wykoff, charles c. title: home monitoring of age-related macular degeneration: real-world utility of the foreseehome device for detection of neovascularization date: - - journal: ophthalmol retina doi: . /j.oret. . . sha: doc_id: cord_uid: qn k purpose: to evaluate real-world utility of the foreseehome monitoring device for the detection of conversion from intermediate age-related macular degeneration (iamd) to neovascular amd (namd) and compare with results published by the home study. design: retrospective analysis of electronic health records. subjects: eyes prescribed use of the foreseehome device across retinal practices in the usa. methods: usage information was collected from the online foreseehome portal for all eyes prescribed. for a pre-determined subset of eyes, additional clinical information was collected through chart review and analyzed for clinical utility. main outcome measures: outcome measures include frequency and length of use, number of eyes that used the device, established baseline and converted to namd, and number of alerts. results: eyes of patients were prescribed use of the foreseehome device. eyes ( . %) used the device at least once; among this population, ( . %) established baseline. patients who established baseline were significantly younger than those who did not establish baseline (p< . ). among eyes that established baseline, ( . %) had an overall inadequate frequency of use (≥ tests per week), and ( . %) did not use the device as frequently as instructed by the manufacturer (≥ tests per week); ( . %) discontinued use within one year. over a mean of . months, patients had alerts, indicating possible conversions to namd. out of the eyes that established baseline among eyes prescribed the device at one clinical site, alerts were recorded, ( . %) correctly identified conversion to namd and ( . %) represented false-positive alerts. conclusions: compared to the prospective home study, utility of the foreseehome device in the current analysis of real-world clinical-practice application was limited. a meaningful proportion of eyes never used the device or could not establish baseline. overall frequency of use was low and continuous usage of the device decreased over time. there is a need for improvement in home monitoring technology for eyes with iamd at risk of conversion to namd. although this is still a widely used method of self-monitoring, it has shown low levels of sensitivity and poor patient compliance. , more recent technology, however, has shown promise in the use of daily home telemonitoring of iamd. in , the home study reported beneficial results from a randomized trial using the foreseehome device (notal vision ltd, tel aviv, israel) for early detection of conversion to namd. the purpose of the current analysis was to determine the compliance of patients for each patient, the eye prescribed, age at first use, length of use, days since last exam, total number of tests, ability to establish baseline, alert number and alert types were collected from the foreseehome portal (www.foreseehomeonline.com). eyes were considered "active" if they had a test within days of january , . eyes classified as "never used" included eyes that never filled their prescription and eyes that filled their prescription but never used the device. overall frequency of use over total length of use was calculated from the total number of tests and the length of use. in the month before the alert was also captured. two frequencies of use were calculated to investigate compliance: "adequate" frequency was defined by the home study at ≥ tests per week; "instructed" frequency was defined at ≥ tests per week as specified by proportion of eyes that could not establish initial baseline, mean frequency of use, mean age, proportion of subjects within the home study age range, proportion of subjects within the home study va range, and proportion of od study eyes. chi square tests were performed to test for significant differences among proportions and -way analysis of variance (anova) was used to test for significant differences among mean values. a p-value less than . was considered statistically significant and a t-test distribution was used to calculate % confidence intervals (ci). for ≥ year, . % stopped before year; among eyes with the potential to have been tested for ≥ years, . % stopped between and years; among eyes with the potential to have been tested for ≥ years, . % stopped between years and . the current study demonstrated a higher rate of false-positive alerts per patient per year than did the home study. the home study reported . false alerts per person per oct technology is that the assessment of meaningful change will be passive following patient initiation of the at-home test. this would eliminate the limitation of patient data entry from which foreseehome and many other home monitoring devices suffer. finally, increased understanding of the reasoning behind patient noncompliance may help aid in the creation of optimal telemonitoring devices. difficult to evaluate how compliance with device usage was encouraged by physicians and staff longitudinally. it is also unknown how thoroughly patients were pre-screened before prescription of the device for their ability to use a computer mouse. the cost of the device for each patient was also not assessed and the influence of cost could not be evaluated. additionally, eyes that were classified as "never used" did not distinguish whether patients had never filled their prescription or filled their prescription and never used the device. the current study was also limited in its follow-up of test score change alerts and its confirmation of dry amd or namd diagnosis; in the home study, every in summary, the current study investigated the utility of the foreseehome device in routine clinical practice. compared to results from the home trial, patient compliance and ability to use the device were more limited, as clinically meaningful proportions of patients never used the device or were unable to establish a baseline. continuous usage of the device was low and decreased over time, and the overall false-positive rate was . %, a higher rate than reported in the home trial. these results prevalence of age-related maculopathy the framingham eye study. i. outline and major prevalence findings cataracts and macular degeneration in older americans causes and prevalence of visual impairment among adults in the united states global update of available data on visual impairment: a compilation of population-based prevalence studies prevalence of age-related macular degeneration in the united states age-related macular degeneration (amd) tables. national eye institute, national institute of health age-related eye disease study research group. a randomized, placebo-controlled, clinical trial of high-dose supplementation with vitamins c and e, beta carotene, and zinc for age-related macular degeneration and vision loss: areds report no ophthalmol chic ill age-related macular degeneration preferred age-related macular degeneration: etiology, pathogenesis, and therapeutic strategies consensus nomenclature for reporting neovascular age-related macular degeneration data age-related macular degeneration and blindness due to neovascular maculopathy smoking and age related macular degeneration: the number of pack years of cigarette smoking is a major determinant of risk for both geographic atrophy and choroidal neovascularisation risk factors associated with age-related macular degeneration. a case-control study in the age-related eye disease study associations of cardiovascular disease and its risk factors with age-related macular degeneration: the pola study age-related macular degeneration and incident cardiovascular disease: the multi-ethnic study of atherosclerosis hypertension, cardiovascular disease, and age- related macular degeneration. age-related macular degeneration risk factors study arch ophthalmol chic ill lutein and zeaxanthin in the diet and serum and their relation to age-related maculopathy in the third national health and nutrition examination survey age-related macular degeneration and antioxidant status in the pola study oculaires liées à l'age. arch ophthalmol chic ill dietary intake of antioxidants and risk of age-related macular degeneration the relationship of dietary carotenoid and vitamin a, e, and c intake with age-related macular degeneration in a case-control study age-related eye disease study research group. lutein + zeaxanthin and omega- fatty acids for age-related macular degeneration: the age-related eye disease study (areds ) randomized clinical trial ω- long-chain polyunsaturated fatty acid intake and -y incidence of neovascular age-related macular degeneration and central geographic atrophy: areds report , a prospective cohort study from the age-related eye disease study ranibizumab versus verteporfin for neovascular age-related macular degeneration intravitreal aflibercept (vegf trap-eye) in wet age- related macular degeneration comparison of age-related macular degeneration treatments trials (catt) ranibizumab and bevacizumab for treatment of neovascular age-related macular degeneration: two-year results ranibizumab for predominantly classic neovascular age-related macular degeneration: subgroup analysis of first-year anchor results baseline predictors for one-year visual outcomes with ranibizumab or bevacizumab for neovascular age-related macular degeneration earliest symptoms of diseases of the macula a brief history of macular grids: from thomas reid to edvard munch and fine sl. early detection of extrafoveal neovascular membranes by daily central field evaluation macular function surveillance revisited earliest symptoms caused by neovascular membranes in the macula randomized trial of a home monitoring system for early detection of choroidal neovascularization home monitoring of the eye (home) study randomized trial of the foreseehome monitoring device for early detection of neovascular age-related macular degeneration the home monitoring of the eye (home) study design -home study foreseehome amd monitoring program comparison of -hour holter monitoring with -day novel adhesive patch electrocardiographic monitoring effectiveness of telemonitoring in obstetrics: scoping review cardiac monitoring in patients with syncope: making that elusive diagnosis home telemonitoring in copd: a systematic review of methodologies and patients' adherence patient adherence to a mobile phone-based heart failure telemonitoring program: a longitudinal mixed-methods study optimal duration and predictors of diagnostic utility of patient-activated ambulatory ecg monitoring measurements during home telemonitoring: analysis of the intervention arm in a before and after trial choroidal neovascularization in age-related macular degeneration using ophthalmology practices hit hard by covid- closures current concepts and modalities for monitoring the fellow eye in neovascular age-related macular degeneration: an expert panel consensus. retina phila pa graphical methods for the detection and progress assessment of visual distortion caused by macular disorders. vis basel switz age, mean (sd)