A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved Ones
Open accessAbstract
We conducted a mixed-methods knowledge synthesis to assess the effectiveness of interventions to improve caregivers' involvement in decision making with seniors, and to describe caregivers' experiences of decision making in the absence of interventions. We analyzed forty-nine qualitative, fourteen quantitative, and three mixed-methods studies. The qualitative studies indicated that caregivers had unmet needs for information, discussions of values and needs, and decision support, which led to negative sentiments after decision making. Our results indicate that there have been insufficient quantitative evaluations of interventions to involve caregivers in decision making with seniors and that the evaluations that do exist found few clinically significant effects. Elements of usual care that received positive evaluations were the availability of a decision coach and a supportive decision-making environment. Additional rigorously evaluated interventions are needed to help caregivers be more involved in decision making with seniors.
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Caregivers have hitherto been largely ignored in research about elderly people.
“and yet have hitherto been largely ignored in research about elderly people [24]”
From Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design (2016) · cites this paper as [24]
The Discussion (page not provided) identifies a gap in research on caregivers’ involvement in specific decisions for seniors: only four of the 66 studies reviewed evaluated interventions. That supports a narrower concern about research on caregiver decision-making, but not the broader claim that caregivers have been largely ignored in research about elderly people generally. (LLM, conf=0.85)
Experimental — accuracy not yet measuredCaregivers experience the most decisional conflict during the decision-making process.
“they are the ones who experience the most decisional conflict during the decision-making process [23, 24]”
From Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design (2016) · cites this paper as [24]
The Feasibility of the Decision section reports conflicts caregivers faced between preferred and actual decisions, and Outcomes of Decision Making reports doubt and uncertainty. Neither section establishes that caregivers experience more decisional conflict than anyone else; the claim’s “most” comparison is unsupported. (LLM, conf=0.84)
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Cited by
Sorted by citations
Dionne-Odom, J. N., Ejem, D., Wells, R., Barnato, A. E., Taylor, R. A., Rocque, G. B., Turkman, Y. E., Kenny, M., Ivankova, N. V., Bakitas, M. A., et al. (2019) · PLOS ONE · doi:10.1371/journal.pone.0212967 · Cited by 111 · see citing works
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- Authors
- Garvelink, M. M., Ngangue, P. A. G., Adekpedjou, R., Diouf, N. T., Goh, L., Blair, L., & Légaré, F.
- Affiliations
- CHU de Québec-Université Laval (CA)
- Centre hospitalier universitaire de Québec (CA)
- Rheda Adekpedjou is a PhD candidate in epidemiology in the Population Health and Practice-Changing Research Group of the Research Centre, CHU de Québec.
- Ndeye T. Diouf is a PhD candidate in community health in the Population Health and Practice-Changing Research Group of the Research Centre, CHU de Québec.
- University of British Columbia (CA)
- Université Laval (CA)
- Venue
- Health Affairs
- Publisher
- Health Affairs Publishing, LLC
- Published
- 2016-04
- Volume
- 35
- Issue
- 4
- Pages
- 619-626
- ISSN
- 0278-2715 (ISSN-L)
- 1544-5208
- OpenAlex
- W2340607288
- Cited by
- 72
- References
- 28
- Citations by year
- 2026: 2 · 2025: 3 · 2024: 3 · 2023: 8 · 2022: 7 · 2021: 13 · 2020: 14 · 2019: 8 · 2018: 5 · 2017: 6 · 2016: 3
- FWCI
- 7.29
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Health Affairs (publishedVersion)
- PubMed (publishedVersion)
- Radboud Repository (Radboud University) (submittedVersion)
- Radboud Repository (Radboud University) (submittedVersion, other-oa)
- Funders
- Canadian Institutes of Health Research (140842_1)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- caregiver decision-making, family caregivers, older adults, shared decision-making, caregiver involvement, decision support, caregiver needs, intervention effectiveness, usual care, end-of-life care
- MeSH terms
- Aged, Aged, 80 and over, Aging, Canada, Decision Making, Evaluation Studies as Topic, Female, Humans, Health Knowledge, Attitudes, Practice, Male, Patient Participation, United States, Geriatric Assessment, Caregivers, Needs Assessment, Qualitative Research
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