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

Annmarie Hosie; Slavica Kochovska; Nola Ries; Imelda Gilmore; Deborah Parker; Craig Sinclair; Caitlin Sheehan; Aileen Collier; Gideon A Caplan; Mandy Visser; Xiaoyue Xu; Elizabeth Lobb; Linda Sheahan; Linda Brown; Wei Lee; Christine R Sanderson; Ingrid Amgarth-Duff; Anna Green; Layla Edwards; Meera R Agar

doi:10.1093/geront/gnaa118

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

Gerontologist. 2022 Feb 9;62(2):e112-e122. doi: 10.1093/geront/gnaa118.

Authors

Annmarie Hosie^{1

2}, Slavica Kochovska³, Nola Ries⁴, Imelda Gilmore³, Deborah Parker³, Craig Sinclair⁵, Caitlin Sheehan⁶, Aileen Collier⁷, Gideon A Caplan^{8

9}, Mandy Visser^{3

10}, Xiaoyue Xu^{3

11}, Elizabeth Lobb^{3

6}, Linda Sheahan^{12

13}, Linda Brown³, Wei Lee^{2

3}, Christine R Sanderson³, Ingrid Amgarth-Duff³, Anna Green³, Layla Edwards³, Meera R Agar^{3

14}

Affiliations

¹ School of Nursing Sydney, The University of Notre Dame Australia, Darlinghurst, New South Wales, Australia.
² The Cunningham Centre for Palliative Care, St Vincent's Health Network Sydney, Darlinghurst, New South Wales, Australia.
³ IMPACCT, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, Australia.
⁴ Faculty of Law, University of Technology Sydney, Ultimo, New South Wales, Australia.
⁵ ARC Centre of Excellence in Population Ageing Research, University of New South Wales, Kensington, Australia.
⁶ Palliative Care Department, Calvary Health Care Kogarah, New South Wales, Australia.
⁷ School of Nursing, University of Auckland, Auckland, New Zealand.
⁸ Prince of Wales Clinical School, University of New South Wales, Randwick, Australia.
⁹ Department of Geriatric Medicine, Prince of Wales Hospital, Randwick, New South Wales, Australia.
¹⁰ Leiden University Medical Center, The Netherlands.
¹¹ Faculty of Medicine, School of Population Health, University of New South Wales, Kensington, Australia.
¹² South Eastern Sydney Local Health District, Clinical Ethics Service, Randwick, New South Wales, Australia.
¹³ Sydney Health Ethics, University of Sydney, Camperdown, New South Wales, Australia.
¹⁴ South West Sydney Clinical School, University of New South Wales, Liverpool, Australia.

PMID: 32866239
DOI: 10.1093/geront/gnaa118

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.

Keywords: Analysis; Decision making; Dementia; Ethics (research, practice, policy, individual choices).

Publication types

Research Support, Non-U.S. Gov't
Review
Systematic Review

MeSH terms

Advance Directives
Aged
Aged, 80 and over
Australia
Caregivers* / psychology
Decision Making
Dementia* / psychology
Humans
Proxy