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

Article

Hosie, Annmarie, Kochovska, Slavica, Ries, Nola, Gilmore, Imelda, Parker, Deborah, Sinclair, Craig, Sheehan, Caitlin, Collier, Aileen, Caplan, Gideon A., Visser, Mandy, Xu, Xiaoyue, Lobb, Elizabeth, Sheahan, Linda, Brown, Linda, Lee, Wei, Sanderson, Christine R., Amgarth-Duff, Ingrid, Green, Anna, 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), pp. e112-e122. https://doi.org/10.1093/geront/gnaa118
Article Title

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

ERA Journal ID16157
Article CategoryArticle
AuthorsHosie, Annmarie (Author), Kochovska, Slavica (Author), Ries, Nola (Author), Gilmore, Imelda (Author), Parker, Deborah (Author), Sinclair, Craig (Author), Sheehan, Caitlin (Author), Collier, Aileen (Author), Caplan, Gideon A. (Author), Visser, Mandy (Author), Xu, Xiaoyue (Author), Lobb, Elizabeth (Author), Sheahan, Linda (Author), Brown, Linda (Author), Lee, Wei (Author), Sanderson, Christine R. (Author), Amgarth-Duff, Ingrid (Author), Green, Anna (Author), Edwards, Layla (Author) and Agar, Meera R. (Author)
Journal TitleThe Gerontologist
Gerontologist
Journal Citation62 (2), pp. e112-e122
Number of Pages11
Year2022
Place of PublicationUnited States
ISSN0016-9013
1758-5341
Digital Object Identifier (DOI)https://doi.org/10.1093/geront/gnaa118
Web Address (URL)https://academic.oup.com/gerontologist/article/62/2/e112/5899769
Abstract

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.

KeywordsAnalysis; Decision making; Dementia; Ethics (research, practice, policy, individual choices)
ANZSRC Field of Research 2020420502. Aged care nursing
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Byline AffiliationsUniversity of Notre Dame Australia
University of Technology Sydney
University of New South Wales
Calvary Health Care Kogarah, Australia
University of Auckland, New Zealand
South Eastern Sydney Local Health District, Australia
Institution of OriginUniversity of Southern Queensland
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