Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.

Hosie, A; Kochovska, S; Ries, N; Gilmore, I; Parker, D; Sinclair, C; Sheehan, C; Collier, A; Caplan, GA; Visser, M; Xu, X; Lobb, E; Sheahan, L; Brown, L; Lee, W; Sanderson, CR; Amgarth-Duff, I; Green, A; Edwards, L; Agar, MR

Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.

Hosie, A Kochovska, S Ries, N

Gilmore, I Parker, D Sinclair, C Sheehan, C Collier, A Caplan, GA Visser, M Xu, X Lobb, E Sheahan, L Brown, L Lee, W Sanderson, CR Amgarth-Duff, I Green, A Edwards, L Agar, MR

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Publication Type:: Journal Article
Citation:: The Gerontologist, 2020
Issue Date:: 2020-08-31

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Field	Value	Language
dc.contributor.author	Hosie, A
dc.contributor.author	Kochovska, S
dc.contributor.author	Ries, N https://orcid.org/0000-0002-5264-6722
dc.contributor.author	Gilmore, I
dc.contributor.author	Parker, D
dc.contributor.author	Sinclair, C
dc.contributor.author	Sheehan, C
dc.contributor.author	Collier, A
dc.contributor.author	Caplan, GA
dc.contributor.author	Visser, M
dc.contributor.author	Xu, X
dc.contributor.author	Lobb, E
dc.contributor.author	Sheahan, L
dc.contributor.author	Brown, L
dc.contributor.author	Lee, W
dc.contributor.author	Sanderson, CR
dc.contributor.author	Amgarth-Duff, I
dc.contributor.author	Green, A
dc.contributor.author	Edwards, L
dc.contributor.author	Agar, MR
dc.date.accessioned	2020-09-02T07:19:53Z
dc.date.available	2020-09-02T07:19:53Z
dc.date.issued	2020-08-31
dc.identifier.citation	The Gerontologist, 2020
dc.identifier.issn	0016-9013
dc.identifier.issn	1758-5341
dc.identifier.uri	http://hdl.handle.net/10453/142510
dc.description.abstract	BACKGROUND AND OBJECTIVES:Human research ethics statements support equitable inclusion of diverse groups. Yet older people are under-represented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. RESEARCH DESIGN AND METHODS:Scoping review of literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. RESULTS:From 4171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods and foci, with hypothetical scenarios, quantitative analyses and examination of proxy consent predominating. Participants (n=7331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%) and older persons with dementia/cognitive impairment (6%). Synthesis identified two themes: willingness to participate and decision-making approaches. DISCUSSION AND IMPLICATIONS:Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.
dc.format	Print-Electronic
dc.language	eng
dc.relation	Maridulu Budyari Gumal - The Sydney Partnership for Health, Education, Research and Enterprise (SPHERE)
dc.relation.ispartof	The Gerontologist
dc.relation.hasversion	Accepted Manuscript version	en
dc.relation.isbasedon	10.1093/geront/gnaa118
dc.rights	info:eu-repo/semantics/embargoedAccess
dc.rights	This is a pre-copyedited, author-produced version of an article accepted for publication in The Gerontologist following peer review. The version of record Older Persons’ and Their Caregivers’ Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review, The Gerontologist, 2020;, gnaa118 is available online at: https://doi.org/10.1093/geront/gnaa118.	en
dc.subject	1103 Clinical Sciences
dc.subject.classification	Gerontology
dc.title	Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.
dc.type	Journal Article
utslib.location.activity	United States
utslib.for	1103 Clinical Sciences
pubs.organisational-group	/University of Technology Sydney/Faculty of Law
pubs.organisational-group	/University of Technology Sydney/Strength - HJ - Health Justice
pubs.organisational-group	/University of Technology Sydney
utslib.copyright.status	open_access	*
utslib.copyright.embargo	2021-08-31T00:00:00+1000Z
dc.date.updated	2020-09-02T07:19:43Z
pubs.publication-status	Published

Abstract:

BACKGROUND AND OBJECTIVES:Human research ethics statements support equitable inclusion of diverse groups. Yet older people are under-represented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. RESEARCH DESIGN AND METHODS:Scoping review of literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. RESULTS:From 4171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods and foci, with hypothetical scenarios, quantitative analyses and examination of proxy consent predominating. Participants (n=7331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%) and older persons with dementia/cognitive impairment (6%). Synthesis identified two themes: willingness to participate and decision-making approaches. DISCUSSION AND IMPLICATIONS:Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.

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http://hdl.handle.net/10453/142510