Extent and Predictors of Decision Regret among Informal Caregivers Making Decisions for a Loved One: A Systematic Review

Author:

Elidor Hélène123,Adekpedjou Rhéda2,Zomahoun Hervé Tchala Vignon143,Ben Charif Ali1425ORCID,Agbadjé Titilayo Tatiana12,Rheault Nathalie14,Légaré France1425ORCID

Affiliation:

1. VITAM–Centre de recherche en santé durable, Quebec, QC, Canada

2. Canada Research Chair in Shared Decision Making and Knowledge Translation (Tier 1) and Population Health and Practice-Changing Research Group, Quebec, QC, Canada

3. Department of Social and Preventive Medicine, Faculty of Medicine, Université Laval, Quebec, QC, Canada

4. Health and Social Services Systems, Knowledge Translation and Implementation component of the Quebec SPOR-SUPPORT Unit, Université Laval, Quebec, QC, Canada

5. Department of Family Medicine and Emergency Medicine, Université Laval, Quebec, QC, Canada

Abstract

Background Informal caregivers often serve as decision makers for dependent or vulnerable individuals facing health care decisions. Decision regret is one of the most prevalent outcomes reported by informal caregivers who have made such decisions. Objective To examine levels of decision regret and its predictors among informal caregivers who have made health-related decisions for a loved one. Data sources We performed a systematic search of Embase, MEDLINE, Web of Science, and Google Scholar up to November 2018. Participants were informal caregivers, and the outcome was decision regret as measured using the Decision Regret Scale (DRS). Review methods Two reviewers independently selected eligible studies, extracted data, and assessed the methodological quality of studies using the Mixed Methods Appraisal Tool. We performed a narrative synthesis and presented predictors of decision regret using a conceptual framework, dividing the predictors into decision antecedents, decision-making process, and decision outcomes. Results We included 16 of 3003 studies identified. Most studies ( n = 13) reported a mean DRS score ranging from 7.0 to 32.3 out of 100 (median = 14.3). The methodological quality of studies was acceptable. We organized predictors and their estimated effects (β) or odds ratio (OR) with 95% confidence interval (CI) as follows: decision antecedents (e.g., caregivers’ desire to avoid the decision, OR 2.07, 95% CI [1.04–4.12], P = 0.04), decision-making process (e.g., caregivers’ perception of effective decision making, β = 0.49 [0.05, 0.93], P < 0.01), and decision outcomes (e.g., incontinence, OR = 4.4 [1.1, 18.1], P < 0.001). Conclusions This review shows that informal caregivers’ level of decision regret is generally low but is high for some decisions. We also identified predictors of regret during different stages of the decision-making process. These findings may guide future research on improving caregivers’ experiences.

Publisher

SAGE Publications

Subject

Health Policy

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