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

Hosie, Annmarie and Kochovska, Slavica and Ries, Nola and Gilmore, Imelda and Parker, Deborah and Sinclair, Craig and Sheehan, Caitlin and Collier, Aileen and Caplan, Gideon A. and Visser, Mandy and Xu, Xiaoyue and Lobb, Elizabeth and Sheahan, Linda and Brown, Linda and Lee, Wei and Sanderson, Christine R. and Amgarth-Duff, Ingrid and Green, Anna ORCID: https://orcid.org/0000-0002-7541-3665 and Edwards, Layla and Agar, Meera R. (2022) Older Persons’ and Their Caregivers’ Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review. The Gerontologist, 62 (2). e112-e122. ISSN 0016-9013

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Background and Objectives: Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Research Design and Methods: Scoping review of the 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 4,171 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 = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 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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Item Type: Article (Commonwealth Reporting Category C)
Refereed: Yes
Item Status: Live Archive
Additional Information: Files associated with this item cannot be displayed due to copyright restrictions.
Faculty/School / Institute/Centre: No Faculty
Faculty/School / Institute/Centre: No Faculty
Date Deposited: 19 Jul 2022 23:14
Last Modified: 14 Oct 2022 02:36
Uncontrolled Keywords: Analysis; Decision making; Dementia; Ethics (research, practice, policy, individual choices)
Fields of Research (2020): 42 HEALTH SCIENCES > 4205 Nursing > 420502 Aged care nursing
Identification Number or DOI: https://doi.org/10.1093/geront/gnaa118
URI: http://eprints.usq.edu.au/id/eprint/49624

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