Background. In Canada, caregivers of older adults receiving home care face difficult decisions that may lead to decision regret. We assessed difficult decisions and decision regret among caregivers of older adults receiving home care services and factors associated with decision regret. Methods. From March 13 to 30, 2020, at the outbreak of the COVID-19 pandemic, we conducted an online survey with caregivers of older adults receiving home care in the 10 Canadian provinces. We distributed a self-administered questionnaire through Canada’s largest and most representative private online panel. We identified types of difficult health-related decisions faced in the past year and their frequency and evaluated decision regret using the Decision Regret Scale (DRS), scored from 0 to 100. We performed descriptive statistics as well as bivariable and multivariable linear regression to identify factors predicting decision regret. Results. Among 932 participants, the mean age was 42.2 y (SD = 15.6 y), and 58.4% were male. The most frequently reported difficult decisions were regarding housing and safety (75.1%). The mean DRS score was 28.8/100 (SD = 8.6). Factors associated with less decision regret included higher caregiver age, involvement of other family members in the decision-making process, wanting to receive information about the options, and considering organizations interested in the decision topic and health care professionals as trustworthy sources of information (all P < 0.001). Factors associated with more decision regret included mismatch between the caregiver’s preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care (all P < 0.001). Discussion. Decisions about housing and safety were the difficult decisions most frequently encountered by caregivers of older adults in this survey. Our results will inform future decision support interventions. Highlights This is one of the first studies to assess decision regret among caregivers of older adults receiving home and community care services and to identify their most frequent difficult decisions. Difficult decisions were most frequently about housing and safety. Most caregivers of older adults in all 10 provinces of Canada experienced decision regret. Factors associated with less decision regret included higher caregiver age, the involvement of other family members in the decision-making process, wanting to receive information about the options, considering organizations interested in the decision topic, and health care professionals as trustworthy sources of information. Factors associated with more decision regret included mismatch between the caregiver’s preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care.
ObjectivesDecision aids (DAs) for clients in home and community care can support shared decision-making (SDM) with patients, healthcare teams and informal caregivers. We aimed to identify DAs developed for home and community care, verify their adherence to international DA criteria and explore the involvement of interprofessional teams in their development and use.DesignSystematic review reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.Data sourcesSix electronic bibliographic databases (MEDLINE, Embase, CINAHL Plus, Web of Science, PsycINFO and the Cochrane Library) from inception to November 2019, social media and grey literature websites up to January 2021.Eligibility criteriaDAs designed for home and community care settings or including home care or community services as options.Data extraction and synthesisTwo reviewers independently reviewed citations. Analysis consisted of a narrative synthesis of outcomes and a thematic analysis. DAs were appraised using the International Patient Decision Aid Standards (IPDAS). We collected information on the involvement of interprofessional teams, including nurses, in their development and use.ResultsAfter reviewing 10 337 database citations and 924 grey literature citations, we extracted characteristics of 33 included DAs. DAs addressed a variety of decision points. Nearly half (42%) were relevant to older adults. Several DAs did not meet IPDAS criteria. Involvement of nurses and interprofessional teams in the development and use of DAs was minimal (33.3% of DAs).ConclusionDAs concerned a variety of decisions, especially those related to older people. This reflects the complexity of decisions and need for better support in this sector. There is little evidence about the involvement of interprofessional teams in the development and use of DAs in home and community care settings. An interprofessional approach to designing DAs for home care could facilitate SDM with people being cared for by teams.PROSPERO registration numberCRD42020169450.
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