“Please listen to me”: A cross-sectional study of experiences of seniors and their caregivers making housing decisions

BACKGROUND: Little is known about the decision-making experiences of seniors and informal caregivers facing decisions about seniors’ housing decisions when objective decision making measures are used. OBJECTIVES: To report on seniors’ and caregivers’ experiences of housing decisions. DESIGN: A cross-sectional study with a quantitative approach supplemented by qualitative data. SETTING: Sixteen health jurisdictions providing home care services, Quebec province, Canada. PARTICIPANTS: Two separate samples of seniors aged ≥ 65 years and informal caregivers of cognitively impaired seniors who had made a decision about housing. MEASUREMENTS: Information on preferred choice and actual choice about housing, role assumed in the decision, decisional conflict and decision regret was obtained through closed-ended questionnaires. Research assistants paraphrased participants’ narratives about their decision-making experiences and made other observations in standardized logbooks. RESULTS: Thirty-one seniors (median age: 85.5 years) and 48 caregivers (median age: 65.1 years) were recruited. Both seniors and caregivers preferred that the senior stay at home (64.5% and 71.7% respectively). Staying home was the actual choice for only 32.2% of participating seniors and 36.2% of the seniors cared for by the participating caregivers. Overall, 93% seniors and 71% caregivers reported taking an active or collaborative role in the decision-making process. The median decisional conflict score was 23/100 for seniors and 30/100 for caregivers. The median decision regret score was the same for both (10/100). Qualitative analysis revealed that the housing decision was influenced by factors such as seniors’ health and safety concerns and caregivers’ burden of care. Some caregivers felt sad and guilty when the decision did not match the senior’s preference. CONCLUSION: The actual housing decision made for seniors frequently did not match their preferred housing option. Advanced care planning regarding housing and better decision support are needed for these difficult decisions.