key: cord-0726081-n11q582b
authors: Jesus, Tiago S.; Kamalakannan, Sureshkumar; Bhattacharjya, Sutanuka; Bogdanova, Yelena; Arango-Lasprilla, Juan; Bentley, Jacob; Gibson, Barbara E.; Papadimitriou, Christina
title: People with disabilities and other forms of vulnerability to the COVID-19 pandemic: Study protocol for a scoping review and thematic analysis
date: 2020-08-20
journal: Arch Rehabil Res Clin Transl
DOI: 10.1016/j.arrct.2020.100079
sha: 134cbeb91b9f570da5490bf2f5bb9f137bedefad
doc_id: 726081
cord_uid: n11q582b

ABSTRACT Objective To develop a protocol for a scoping review mapping as well as thematically analysing the literature on the impact of, and responses to, the COVID-19 pandemic, focused on people with disabilities with other layer(s) of individual vulnerability or social disadvantage . Method Scientific databases (Medline/PubMed, Web of Science, Scopus, AgeLine, PsycINFO, CINAHL, ERIC) and preprint servers (MedRxiv, SocArXiv, PsyArXiv) will be searched for. Google searches, snowballing, and key-informant strategies also will be used, including with a focus on the grey literature (e.g. official reports). Peer-reviewed and preprint publications will be covered in six languages, and the grey literature in English. Publications are included if they address: people with disabilities; the COVID-19 pandemic or subsequent social-economic or occupational impacts; and 3) individual or social vulnerabilities, including any form of discrimination, marginalization, or social disadvantage. Two independent reviewers will perform eligibility decisions and key data extractions. Beyond mapping the literature, the results will thematically analyse any disproportionate risks people with disabilities and other form(s) of vulnerability experience in terms of: being infected by the COVID-19; having severe health consequences; and facing negative socio-economic impacts. Actions taken or recommended to reduce identified inequalities also will be synthesized. The whole research team, with diverse backgrounds, will be involved in the synthesis. Conclusion The review, planned to be expedited, aims to timely inform policy-makers, health authorities, disability advocates, and other stakeholders about needs and ways to promote equity and disability-inclusive responses to the COVID-19 pandemic and the resultant socio-economic shockwaves.

has not been equal across populations. 1 2 Many populations have been vulnerable, including 53 but not limited to older individuals and people with chronic health conditions and 54 disabilities. 1 3-6 For instance, minorities or socially disadvantaged populations can also be 55 disproportionally affected by the COVID-19, such as: African Americans, Hispanics, refugees, 56 migrants, indigenous people, uninsured, prisoners, those who are institutionalized, 57 homeless, resource-poor, living in densely-populated communities or households, frontline 58 essential workers (i.e. unable to telework), or without access to soap or clean water. 1 2 5 7-15 59 These are just a few examples of social disadvantages or vulnerabilities, entrenched as 60 societal injustices, which add to individual vulnerabilities to the COVID-19 pandemic. 2 14 61 Vulnerability to the COVID-19 pandemic can be reflected in terms of: greater exposure to or 62 risk of being infected, not having timely access to COVID-19 diagnostic tests, not being able heart diseases, or diabetes. 36 Moreover, PwD living in the community often need assistance 90 for their daily activities, accessing basic goods, or seeking healthcare, while such an 91 assistance may be restricted under lockdowns. 36 Finally, in person access to general health 92 and rehabilitation services may be restricted, due to lockdown measures or because, even 93 routinely available health or rehabilitation services, beds, and providers have been diverted 94 to the emergency response to the COVID-19 pandemic. 44-47 95 All accounted, most PWD experience additional disadvantages that make them especially 96 vulnerable to (i.e. at a greater risk of being disproportionally as well as negatively impacted 97 by) the COVID-19 pandemic. 23 24 32 48 As such, they may need timely, purposive action from 98 key stakeholders (e.g. policy makers, public health authorities, civil society) for the health 99 and social inequalities not to be further widened (but rather reduced) during and following 100 the COVID-19 pandemic. 101 The purpose of the study which this protocol refers to is to review and synthesize the global A scoping review method will be applied. 49,50 Scoping reviews typically address an 119 exploratory research question toward mapping key concepts, types of evidence, and gaps in 120 research related to a given area, and often includes an examination of the extent, range, 121 and nature of research activity in a broad or complex topic, and finally may be coupled with 122 a synthesis of the main content or themes covered, in order to inform further policy, 123 practice, and research. 50 The map and synthesis of these disproportionate risks and respective actions taken or 152 recommended, as reported in the reviewed literature, may timely inform policy-makers, 153 public health authorities, disability advocates, and other health and rehabilitation 154 stakeholders, on needs or action aimed at promoting health equity, avoid discrimination, 155 foster social protection, and promote the fulfilling of the human rights of people with 156 disabilities, and especially so for those facing multiple layers of vulnerability to the COVID-19 2. Identifying relevant studies (developing the search) 160 Seven databases for the scientific, peer-reviewed literature (Medline/PubMed, Web of 162 Science -Core Collection, Scopus, AgeLine, PsycINFO, CINAHL, ERIC). We do not include 163 EMBASE, for example, because it adds to Medline/PubMed essentially at biomedical and 164 biochemistry or pharmaceutical levels, while the scope of this study is at a broader health 165 and social impact levels. Databases searches will be run in the mid July, and repeated when 166 the initial synthesis has been completed, estimated in one or two months thereafter. Given 167 the pace of publications on COVID-19, 58 this update is likely key. 168 Publications on the COVID-19 are recent and more common in preprint servers than in the 169 peer-reviewed publications. 58 Accordingly, we will also search three databases for pre-print 170 literature (i.e. MedRxiv, SocArXiv, PsyArXiv), while this search will be updated under the 171 same terms. The Appendix 1 also details search strategy for each of the preprint servers. 172 Records arising from scientific databases and preprint serves will be exported a commercial 173 references manager software (EndNote, Clarivate Analytics), where duplicates will be 174 removed. 175 Google searches also will be performed with combinations of main keywords, as detailed in 176 the Appendix 1. This is aimed at finding key elements of the grey literature, with a focus on 177 official reports, guidelines, advice, or recommendations (e.g. from national or international (e.g. author tracking, referenced sources), will be finally conducted over any included 184 references, for identification of any additional records. 185 Finally, supplied with a preliminary list of inclusions, members of the American Congress of 186 Rehabilitation Medicine's International Networking Group and refugee Empowerment Task 187 Force will be consulted as key informants as to any additional references we may have 188 missed. Two independent reviewers (SK and SB) will carry both the Level 1 screening (titles-and-253 abstract) and Level 2 screening (full-text review with eligibility decisions). Each of these 254 processes will be preceded by a pilot screening in a 5 to 10% random sample of references, 255 in which an 80% agreement, or greater, needs to be achieved among the reviewers for the 256 full screening to take place. Training and further pilot screening might be required until the 257 minimum threshold is achieved. The process will be supervised by the guarantor of the 258 review (TJ), who has extensive experience leading scoping reviews. The same researcher 259 decides on any remaining disagreements while calling for the support of any particular co-260 author, as needed, according to one's expertise. Finally, depending on the amount of 261 references to be screened, additional reviewers may be engaged in the performance of the 262 two independent reviewer roles, subject to the same criteria. 263 Peer-reviewed or preprint publications in six languages (i.e. English, French, Spanish, Greek, 264 Russian, and Portuguese) will be included in the scoping review. Publications in Mandarin or 265 Arabic languages, for example, will be excluded due to lack of these language skills within 266 the research team. The review of articles in language other than English, by a reviewer not 267 primarily assigned with independent reviewer tasks, will be directly overseen by the 268 guarantor of the review (TJ). 269 For the grey literature coming from Google searches, we will include reports, guidelines, Using a data extraction form and structure constructed by the research team, formal data 292 elements (e.g. publication type, source) will be extracted by one of the research authors 293 (SK), with a random sample of 5% verified by another (JB). This will follow a pre-determined 294 coding structure elaborated by the research team. 295 Regarding the content of the literature, two independent reviewers (SK and SB) will extract 296 text quotations on any added risk for or disproportionate impact (e.g. on health, socio- people with disabilities and other vulnerabilities in the pandemic scenario will be described. 314 The same analysis will be applied to publications describing action taken, on one hand, and 315 recommended to be taken, on the other hand, to address any disproportional risk or impact. 316 Moreover, we will quantify the publications addressing individual versus social vulnerability, for the results to be actionable right now, in the context of the COVID-19 pandemic. 93 93 and what is typical in rapid review approaches for pressing health policy issues, 405 even apart from a pandemic scenario. 95 For example, two independent reviewers are 406 involved across stages of the scoping review, and a study protocol will be published, which is 407 still uncommon in scoping reviews especially in the rehabilitation field, even without a 408 'rapid' label. 96 Although the process is expedited and does not include the grey literature in 409 languages other than English, in essence a fully-fledged scoping review is conducted, 410 including 6 languages for the peer-reviewed and preprint literature. As a major limitation, l 411 persons with disabilities have not been consulted as experts. Consulting experts is an 412 optional step. For feasibility and timeliness, only experts from an existing group will be 413 consulted. That current restriction does not impede, though, that any missing perspectives 414 (e.g. from PwD or their representatives) could -and probably will -be collected and 415 integrated later on, over the scoping review results.

The dissemination of the study results will be made through a peer-reviewed publication, 417 and through newsletter or policy briefs expanding from the action of the American Congress 418 of Rehabilitation Medicine's "refugee empowerment task force", and its broader 419 International Networking Group. 

Guidance for conducting systematic scoping 603 reviews

Extending the PRISMA statement to equity-606 focused systematic reviews (PRISMA-E 2012): explanation and elaboration

Preferred reporting items for systematic review 610 and meta-analysis protocols (PRISMA-P) 2015 statement

Registration of systematic reviews in PROSPERO: 30,000 613 records and counting

Registration in the international prospective 616 register of systematic reviews (PROSPERO) of systematic review protocols was 617 associated with increased review quality

Publish or perish: Reporting Characteristics of Peer-621 reviewed publications, pre-prints and registered studies on the COVID-19 pandemic

Towards a conceptual description of 624 rehabilitation as a health strategy

The International Classification of Functioning

Health (ICF): a unifying model for the conceptual description of the rehabilitation 628 strategy

Scoping review of the person-centered literature in 631 adult physical rehabilitation

Research Plan on Rehabilitation

Marginalized Groups

Building a COVID-19 Vulnerability Index

Assessing COVID-19 Risk, Vulnerability and Infection 644 Prevalence in Communities

Using thematic analysis in psychology

Towards deep inclusion for equity-oriented health 649 research priority-setting: A working model

Equity in healthcare resource allocation decision 653 making: A systematic review

An Integrated Approach to Disability Policy 656

Intellectual and developmental 657 disabilities

Alliance for Health Policy and Systems Research & World Health Organization. Systems 660 Thinking for Health Systems Strengthening

Systems science and systems thinking for public 662 health: a systematic review of the field

Intersections Between Systems Thinking and 665

Market Shaping for Assistive Technology: The SMART (Systems-Market for Assistive 666 and Related Technologies) Thinking Matrix

A systems thinking approach to analysis of the Patient Protection and 670

Journal of public health management and practice

Systems thinking perspectives applied to healthcare 674 transition for youth with disabilities: a paradigm shift for practice, policy and 675 research

Disability Policy Evaluation: Combining Logic 678 Models and Systems Thinking

When complexity science meets 682 implementation science: a theoretical and empirical analysis of systems change

Complex adaptive systems: concept analysis

Complex adaptive systems and 689 their relevance for nursing: An evolutionary concept analysis. International journal of 690 nursing practice

Scoping review of complexity theory in health 693 services research

Complexity science: The challenge of complexity in health care

The human rights of children with disabilities during health emergencies: the 699 challenge of COVID-19. Developmental medicine and child neurology

Routledge 703 © 2020 selection and editorial matter, Nick Watson and Simo Vehmas

Occupational injustice: A critique. Canadian journal of 706 occupational therapy Revue canadienne d

Critical reflections on occupational justice: Toward a rights-based approach 709 to occupational opportunities. Canadian journal of occupational therapy Revue 710 canadienne d

Occupational 713 Justice and Its Related Concepts: An Historical and Thematic Scoping Review. OTJR : 714 occupation, participation and health

Universally design social policy: when disability disappears? Disability and 717 rehabilitation

Conducting Accessible Research: Including People With 720 Disabilities in Public Health, Epidemiological, and Outcomes Studies

Training physicians about caring for persons with disabilities: 724 "Nothing about us without us

Disability and the post-2015 development agenda. Disability and 727 rehabilitation

Why public health matters today more than ever: 730 the convergence of health and social policy

COVID-19 and the need to prioritize health equity 734 and social determinants of health

Rapid reviews for rapid decision-making during the 737 coronavirus disease (COVID-19) pandemic

Europeen sur les maladies transmissibles

Rapid review methods more challenging during 742 COVID-19: Commentary with a focus on 8 knowledge synthesis steps

Rapid 746 reviews to strengthen health policy and systems: a practical guide

People with comorbid, chronic, or secondary health conditions, including those with an impact on the respiratory, cardiovascular, or immune function. These persons can be more severely affected by the COVID-19 disease.People at an older age or with frail health conditions, including people with a history of debilitating health conditions (e.g. dementia) and people with history of substance abuse. These persons can also be more severely affected by the direct health consequences of the COVID-19 disease, or be subject to relapses or aggravation of their health status or functional limitations by the lack of support or assistance that may arise from the pandemic or resultant lockdowns.People facing social isolation and lack of social support from lockdown or other preventive measures, especially older populations who can be subject to tighter or longer physical proximity restrictions. These persons can be vulnerable to negative psychosocial impacts of the COVID-19 pandemic, including in terms of mental health, disfranchisement, occupational injustice, and social isolation.People with depression or other mental health conditions (or at risk of having mental health conditions) can have their mental health status aggravated by the health or socioeconomic impacts of the COVID-19. These include any suicidal ideation or behaviours arising from the unemployment, financial, and other stresses coming from the public health and economic crisis.Children with sensory processing difficulties who have unusual responses to sensory input can have difficulty coping with activities of hand washing and wearing masks. Access to health services and equipment:People who are uninsured, under-insured, or with no universal access to health care, including care directly related with the COVID-19. This includes capacity to get (timely) diagnostic tests for the COVID-19 or for accessing adequate treatment, including access to ventilators.People living in medically-underserved or under-supplied areas (e.g. rural or remote locations with limited access to diagnostic and treatment facilities, face masks, or other personal protective equipment).People with no or reduced access to transportation facilities or personal assistance services as a means to satisfy health and functional needs or access to healthcare. People whose needed, timely access to assistive devices has been affected by disruptions in supply chain or distribution of these products as a result of the COVID-19 pandemic and labour restrictions.

J o u r n a l P r e -p r o o f People who are homeless, homebound, under-housed, and who thereby may struggle to assure physical distancing and adequate hygiene measures.People living in densely populated communities or households, who may struggle to assure physical distancing, including during mandatory or self-imposed quarantine measures.People institutionalized, including the hospitalized and those living in nursing homes or residential facilities who are subject to infection spread within the institutional environment.Prisoners or incarcerated -in detainment or correctional facilities, where maintaining physical distancing and containing the spread of the disease can be complex or unattainable.People without (reliable) access to clean water and soap for the recommended hygiene measures.People living in locations whose living conditions or social order have been threatened by military conflict, natural disasters, or other humanitarian crises.

Populations identified as pertaining to low-or middle-income countries, regions or areas, who may struggle to financially access health care beyond any universally assured, afford a living with the loss of income associated to preventive measures (e.g. periods of lockdown), or in which lockdown measures for containing the pandemic have not been taken, at the population level, for economic reasons.People otherwise facing poverty or with no stable or sufficient income, economically exploited, under-paid, working in the informal economy, without access to a paid sick (or quarantine) leave, or the so-called working poor, who may have limited to no capacity to afford lockdowns and may have higher exposure to the socio-economic shockwaves of the COVID-19 pandemic, without sizeable social protection.

Children and youths with special education needs may have important restrictions in the in-person participation in school and other (e.g. therapeutic) activities, restricted by lockdown measures. Telematic schooling or therapy may be demanding, unpractical, or less effective for many (e.g. requiring caregiving assistance; skills in communication and information technologies from the caregivers or the children; digital devices and internet access; performed without tactile or bodily sensation such as that provided by an handson therapeutic input at the backdrop of children with sensory processing issues).Children and youths with developmental disabilities as well as their informal caregivers J o u r n a l P r e -p r o o f may have restricted access to health, social or child protection services they may need to rely on, because of lockdowns or because these services and resources have been prioritized for addressing acute needs arising from the COVID-19 pandemic.Children and youths with developmental disabilities may be exposed to increased adverse childhood experiences such as abuse and neglect, exacerbated by COVID-19 related stress/impact on caregivers and family.Children and youths with developmental disabilities may have restricted opportunities to develop social abilities, interpersonal relationships, and other key developments as a result of the restricted social and physical contact, or may have difficulty adjusting to a suddenly altered routine.

People with frontline, essential jobs (e.g. in healthcare, pharmacy, grocery stores, transports), which need to be carried out even during lockdown periods.People otherwise not able to telework, either by the nature of the job, lack of skills in using information and communication technologies, or lack of reasonable accommodations People unemployed, underemployed, laid-off, pressured to anticipate retirement, or pressured to take over frontline essential jobs without enough preparation, may face economic or health risks, including mental health risks.

Refugees or asylum seekers as well as migrants, including undocumented, may face cultural or language barriers to understand or comply with public health measures, poor living or preventive isolation conditions, poor to no access to healthcare, poor economic resources, among other drivers of vulnerability and social disadvantage likely exacerbated during a pandemic scenario.People from minority or socially disadvantaged races (e.g. African Americans), ethnicities, minority religions within an area, or indigenous populations, who may lower working and livelihood conditions, lower access to healthcare, and cultural differences not accounted for in public health measures designed to with the majorities or better-off in mind.People that are victims of interpersonal or domestic violence, coercion, or gender-based prejudice may face healthcare access restriction, may be unwillingly exposed to physical contact, or may be vulnerable to violence during lockdown periods.Box 1: Examples of groups of people who can be vulnerable to the COVID-19 pandemic, apart from people experiencing a disability, organized by type of vulnerability