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Research Article

Aging & Health

A Synthesis Of Knowledge About Caregiver Decision Making Finds Gaps In Support For Those Who Care For Aging Loved Ones

Affiliations
  1. Mirjam M. Garvelink ( [email protected] ) is a postdoctoral fellow in the Population Health and Practice-Changing Research Group of the Research Centre, CHU de Quebéc–Université Laval, in Québec City.
  2. Patrice A. G. Ngangue is a PhD candidate in community health in the Population Health and Practice-Changing Research Group of the Research Centre, CHU de Québec.
  3. Rheda Adekpedjou is a PhD candidate in epidemiology in the Population Health and Practice-Changing Research Group of the Research Centre, CHU de Québec.
  4. 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.
  5. Larissa Goh is an undergraduate student at the University of British Columbia, in Vancouver.
  6. Louisa Blair is a caregiver representative in the Population Health and Practice-Changing Research Group of the Research Centre, CHU de Québec.
  7. France Légaré is a professor in the Department of Family Medicine and Emergency Medicine and the Canada Research Chair in Implementation of Shared Decision Making in Primary Care, both at Université Laval.
PUBLISHED:No Accesshttps://doi.org/10.1377/hlthaff.2015.1375

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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