Older Persons’ and Their Caregivers’ Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review-Reference-Cited by-同舟云学术

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

Published:2020-08-31 Issue:2 Volume:62 Page:e112-e122
ISSN:0016-9013
Container-title:The Gerontologist
language:en
Short-container-title:

Author:

Hosie Annmarie¹²^ORCID,Kochovska Slavica³^ORCID,Ries Nola⁴^ORCID,Gilmore Imelda³^ORCID,Parker Deborah³^ORCID,Sinclair Craig⁵^ORCID,Sheehan Caitlin⁶^ORCID,Collier Aileen⁷^ORCID,Caplan Gideon A⁸⁹^ORCID,Visser Mandy³¹⁰^ORCID,Xu Xiaoyue³¹¹^ORCID,Lobb Elizabeth³⁶^ORCID,Sheahan Linda¹²¹³^ORCID,Brown Linda³^ORCID,Lee Wei²³^ORCID,Sanderson Christine R³^ORCID,Amgarth-Duff Ingrid³^ORCID,Green Anna³^ORCID,Edwards Layla³,Agar Meera R³¹⁴^ORCID

Affiliation:

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

Abstract

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.

Funder

Maridulu Budyari Gumal: Sydney Partnership for Health, Education, Research and Enterprise

Publisher

Oxford University Press (OUP)

Subject

Geriatrics and Gerontology,Gerontology,General Medicine

Link

http://academic.oup.com/gerontologist/advance-article-pdf/doi/10.1093/geront/gnaa118/33701958/gnaa118.pdf

Reference58 articles.

1. Frontotemporal dementia caregivers and researchers: Partnering for brain donation;Austrom;American Journal of Alzheimer’s Disease and Other Dementias,2011

2. Willingness to participate in Alzheimer’s disease research and attitudes towards proxy-informed consent: Results from the Health and Retirement Study;Ayalon;The American Journal of Geriatric Psychiatry,2009

3. “From Victimhood to Warriors”: Super-researchers’ insights into Alzheimer’s disease clinical trial participation motivations;Bardach;The Gerontologist,2020

Cited by 8 articles. 订阅此论文施引文献订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献

1. Home support for vulnerable older people: from shared decision-making to negotiation : A qualitative pilot study;Gériatrie et Psychologie Neuropsychiatrie du Vieillissement;2024-06

2. Driving quality in delirium care through a patient-centered monitoring system in palliative care: Protocol for the two-staged exploratory sequential mixed methods MODEL-PC study;Delirium Communications;2024-05-08

3. Research Attitude and Interest among Cancer Survivors with or without Cognitive Impairment;Cancers;2023-06-29

4. Expanding the ethnographic toolkit: Using medical documents to include kinless older adults living with dementia in qualitative research;Journal of Aging Studies;2023-06

5. Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research;Ethics & Human Research;2023-05