key: cord-0811179-w10x3yho
authors: Wammes, Joost D.; Kolk, Daisy; van den Besselaar, Judith H.; MacNeil- Vroomen, Janet L.; Buurman- van Es, Bianca M.; van Rijn, Marjon
title: Evaluating perspectives of relatives of nursing home residents on the nursing home visiting restrictions during the COVID-19 crisis: a Dutch cross-sectional survey study
date: 2020-09-30
journal: J Am Med Dir Assoc
DOI: 10.1016/j.jamda.2020.09.031
sha: d14f9653747b89d24dae258b9b3a0067bf69ad10
doc_id: 811179
cord_uid: w10x3yho

Objectives COVID-19 has caused many nursing homes to prohibit resident visits to prevent viral spread. Although visiting restrictions are instituted to prolong the life of nursing home residents, they may detrimentally affect their quality of life. The aim of this study is to capture perspectives from the relatives of nursing home residents on nursing home visiting restrictions. Design A cross-sectional online survey was conducted. Setting and participants: A convenience sample of Dutch relatives of nursing home residents (n = 1997) filled in an online survey on their perspectives regarding nursing home visiting restrictions. Methods The survey included Likert-item, multi-select, and open answer questions targeting four key areas: (1) communication access to residents, (2) adverse effects of visiting restrictions on residents and relatives, (3) potential protective effect of visiting restrictions, (4) important aspects for relatives during and after visiting restrictions. Results Satisfaction of communication access to nursing home residents was highest when respondents had the possibility to communicate with nursing home residents by nurses informing them via telephone, contact behind glass, and contact outside maintaining physical distance. Satisfaction rates increased when respondents had multiple opportunities to stay in contact with residents. Respondents were concerned that residents had increased loneliness (76%), sadness (66%), and decreased quality of life (62%) while study respondents reported personal sadness (73%) and fear (26%). There was no consensus amongst respondents if adverse effects of the visiting restrictions outweighed the protective effect for nursing home residents. Respondents expressed the need for increased information, communication options, and better safety protocols. Conclusion and Implications Providing multiple opportunities to stay in touch with nursing home residents can increase satisfaction of communication between residents and relatives. Increased context specific information, communication options and safety protocols should be addressed in national health policy.

Institutionalized older adults have the highest risk of mortality from the Corona virus 2019 19) 1-3 . Many governments, including the Netherlands, instituted visiting restrictions in nursing homes 28 to control contagion and avoid high mortality numbers 4 . For many nursing home residents, this 29 caused isolation from their family and friends 5 . 30

Isolating policies are widely recommended to prevent COVID-19 contagion 6, 7 . However, 31 consequential detrimental effects of isolating nursing home residents on quality of life are known 32 from the 2003 SARS outbreak 8 . A qualitative study of McCleary et al. 8 found that as a result of 33 nursing home visiting restrictions during the 2003 SARS outbreak, both nursing home residents and 34 their relatives experienced a negative impact on their physical and emotional well-being. Previous 35 studies have also found that chronic isolation of older adults was associated with cognitive decline 36 and anxiety 9, 10 . Furthermore, family care and support normally provided in nursing homes like 37 assistance with activities of daily living care, emotional support, and socialization is no longer 38 possible [11] [12] [13] . Also, it is known that alternative forms of communication between family and nursing 39 home residents used during visiting restrictions like telephone, video calls, and email are modest 40 substitutes for in-person family care 5, 14 . 41

On the March 20, 2020, the Netherlands closed all visitation to all 115,000 nursing home 42 residents 15 . Although visiting restrictions are instituted to prolong the life of nursing home residents, 43 they may detrimentally and disproportionately affect their quality of life, creating a dilemma 44 between quantity of life versus quality of life. Given this dilemma, it is important to evaluate visiting 45 restriction policies from different perspectives. It is particularly important to identify the perspectives 46 of the people who are highly affected by the restrictions, like nursing home residents and their 47 relatives. It is currently unclear if relatives support these restrictive policies, what detrimental effects 48 do relatives think may be occurring for nursing home residents and for themselves, and are there 49 unmet needs for residents and relatives. The aim of this study is to capture the perspectives on the 50 COVID-19 nursing home visiting restrictions from relatives of nursing home residents. These results are imminently important to inform policy makers and nursing homes with regard to unmet needs 52 and create best practices during and after visiting restrictions. Especially considering the COVID-19 53 crisis is far from over, and nursing homes might need to prohibit visits again in the near future. 54 J o u r n a l P r e -p r o o f

This cross-sectional survey study was conducted between April 28, 2020 and May 3, 2020, which was 57 six weeks after the Dutch government closed all nursing homes visitation due to the COVID-19 58 pandemic. Since May 25, 2020, nursing homes are gradually opening to a limited amount of visitors. 59

It should be noted that in this period there was a shortage of personal protective gear for nursing 60 home staff and visitors 16, 17 . This study was developed using the STROBE guidelines 18 . 61

People were eligible to participate in this study if they were 18 years and older, had a family member 63 or friend in a nursing home during the period of the visiting restrictions, and were able to read and 64 write Dutch. Respondents were recruited via the website of a senior citizens' union, nursing labor 65 union V&VN, a dementia patient federation, and two national newspapers. The soliciting text 66 explained the aim and relevance of this study. Potential respondents were asked to complete an 67 online survey embedded in a direct link on the website. 68

The survey construction was based on a literature review search and multiple group discussions with 70 a team of geriatricians, registered nurses, and physical therapists. The survey targeted four key areas: 71

(1) communication access to residents, (2) potential adverse effects of visiting restrictions on 72 residents and relatives (3) Results were presented as frequencies and percentages. Furthermore, using Likert-items as the 80 outcome variable, ordinal logistic regressions were performed with results expressed in proportional 81 odd's ratios. Variables included the backward stepwise selection procedure included age, sex, 82 relation to nursing home resident, and urban or rural living. The assumption of proportional odds 83 was tested for all models. The final model was based on independent variables having a p-value less 84 than 0.05. All data was analyzed using SPSS version 25.0. Qualitative data were analyzed using 85 thematic analysis to systematically examine patterns in the written data 19 . JW analyzed all written 86 data while DK and MvR analyzed both half of the data. Coding schemes were regularly discussed and 87 compared in the research group. 88 J o u r n a l P r e -p r o o f

From the 3316 survey respondents who started the survey, 1117 did not met the eligibility criteria, 91 and 202 were excluded because they did not fill in any survey question, resulting in 1997 92 respondents included in the analysis. Baseline characteristics of respondents are presented in Table  93 1. 94

Communication access to nursing home residents 95 Table 2 shows that most frequently used means to stay in touch with nursing home residents were 96 telephone (n=1135) and video calling (n=848). Respondents experienced most satisfaction when they 97 had the possibility to stay in touch with nursing home residents by nurses informing them by 98 telephone (44%), contact behind glass (40%), or contact outside maintaining distance (40%). 99

Furthermore, satisfaction of communication access increased by the amount of possibilities available 100 to respondents (see Figure 1 ). 101

The majority of relatives selected loneliness (76%), sadness (66%), and loss of quality of life (62%) as 103 potential adverse effects on nursing home residents (see Table 3 ). Respondents specified in the 104 'other' option that adverse effects also included increase of cognitive impairment, depressive 105 symptoms, insufficient personal care (e.g. care of hair and nails), and especially for persons with 106 dementia, alienation from their social network. The most selected adverse effect on relatives of 107 nursing home residents was sadness (73%). Respondents specified in the 'other' option that adverse 108 effects on relatives included feelings of guilt, and no recognition of informal caregiver role. 109

Perspectives on the protective effect of visiting restrictions 110 Relatives who stayed in contact with nursing home residents through nurses informing them 157 via telephone, contact behind glass, or contact outside maintaining physical distance experienced 158 most satisfaction of communication access to nursing home residents. Even though communicating 159 with nursing home residents by telephone and video calls was more frequently used, respondents 160 experienced less satisfaction thereof. This supports the idea that only telephone and video 161 communication is a modest substitute for physical contact 5, 14 . What is surprising is that more 162 satisfactions was experienced by nurses informing relatives via telephone than relatives engaging 163 with nursing home residents themselves. A possible explanation might be that the use of 164 communication devices for telephoning and video calling can be experienced as difficult for nursing 165 home residents, or is hindered by impairments such as deafness, visual impairments, or dementia, 166 while nurses might provide clearer information on the well-being of nursing home residents. 167

In addition, this study found that providing multiple possibilities to stay in contact with 168 nursing home residents increased satisfaction. However, only a small proportion of study participants 169 had access to more than two contact possibilities. These results imply more efforts should be made 170 to facilitate more frequent and alternative contact possibilities available apart from telephone and 171 video communication. 172

Furthermore, this study showed that most respondents were concerned the nursing home 173 residents were experiencing loneliness, sadness and decreased quality of life while respondents 174 themselves were mainly experiencing sadness. These findings are consistent with previous studies 175 who found that isolated older adults are at higher risk of depression and anxiety 8, 20 . Other studies 176 found that social isolation of older adults is also associated cardiovascular and cognitive decline 9, 10, 21 177

Adverse effects on health and well-being seem to be a prevalent argument in the debate on 178 discarding visiting restrictions. Even more so because many nursing home residents are in their end-179 of-life phase, and prefer quality of life over quantity of life 22 . Yet, this study showed that there is a 180 dichotomy in opinions of relatives of nursing home residents if visitors should be allowed back in 181 nursing homes. An interesting finding is that male sex and being at older age is associated with 182 higher agreement on the potential protective effects of visiting restrictions. A possible explanation 183 for older people having more positive attitudes regarding the protective effects of visiting restrictions 184 could be that older people themselves have a higher risk of severe illness from Nevertheless, these results imply policy makers have to find a balance between infection prevention 186 and opening up nursing homes for visitors. 187

Even though opinions regarding visiting restriction differed, this study identified several 188 needs experienced during visiting restrictions. This study found that needs were provision of 189 information and alternative ways for staying in touch with nursing home residents. These findings are 190 in line with other studies that emphasized the importance of communication between nursing home 191 staff, nursing home residents, and relatives 8, 23-25 . When nursing homes start allowing a limited 192 amount of visitors, needs concern protective measures like personal protective gear, and safety 193 protocols. These needs corroborate with strategies suggested by key public health organizations 194 specialized in infection control 6, 7 . 195 Considering the challenges in communication access to nursing home residents, the adverse 196 effects of visiting restrictions, and the importance of family caregiving in nursing homes 13 Table 2 . Contact possibilities, usage and satisfaction of relatives to stay in touch with nursing home 297 residents (n=1994). 298 299 Figure 1 . Contact possibilities, satisfaction of relatives by the amount of possibilities available to 300 them (n=1944). 301 Table 3 . Results of multi-select question regarding the potential adverse effects of visiting 302 restrictions on nursing home residents and their relatives (n=1942). 303 Table 4 . Results of Likert-items on perspectives of relatives regarding the protective effects of the 304 visiting restrictions (n=1997). 305

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COVID-19 and the consequences of isolating the elderly

We would like to thank the senior citizens' union PCOB, Nursing labor union V&VN, and the Dutch dementia patient federation for their valuable contribution in spreading the survey and collecting survey data.

Page 1 Since march 20 the government implemented visiting restrictions for all Dutch nursing homes, which prohibits all visits at nursing homes. These regulations are implemented to protect nursing home residents, their relatives and nursing home staff against the corona virus. With this survey we would like to know your experiences regarding the visiting restrictions, the way you stay in touch with nursing home residents and what are your needs.The survey takes approximately 5 minute to complete, however, can take more time, depending on your response. All answers will be anonymized and handled with confidentiality. This online survey is according to the Dutch General Data Protection Regulation (Dutch: Algemene Verordening Gegevensbescherming). The visiting restrictions can have negative effects on nursing home residents and you as relatives of nursing home residents. The following statements concern the potential effects you see for nursing home residents and for yourself. At this moment the visiting restrictions still apply to all visits of nursing home residents. Even though unclear when, in the future a minimum of amount of visitors might be allowed. The following questions concern your needs experienced now and for the future when nursing homes slowly open up.

What are you needs now all visits are prohibited for nursing home residents?[Q11] What do you need when nursing homes start allowing (a minimum amount) of visitors?

This were all survey questions. We would like you to provide your personal information. All information will we handled confidentially.[Q12] What is your age in years?[Q13] What is your sex? Males were more likely than females to agree that the restrictions protected nursing home residents, visitors, and the protective effects outweighed the adverse effects of well-being. Older adults had greater odds of agreeing that the restrictions protected visitors and the protective effects outweighed the adverse effects of well-being.J o u r n a l P r e -p r o o f J o u r n a l P r e -p r o o f J o u r n a l P r e -p r o o f J o u r n a l P r e -p r o o f J o u r n a l P r e -p r o o f