Stroke Survivor and Family Caregiver Reports of Caregiver Engagement in Stroke Care

Purpose The aim of the study was to identify areas of caregiver engagement in stroke care as viewed by stroke survivors and family caregivers. Design Interviews with stroke survivor/caregiver dyads (N = 71) from a population-based study of incident stroke. Methods We interviewed stroke survivors and caregivers about caregiver involvement at multiple stages of stroke care. We assessed similarities and differences between stroke survivor and caregiver reports and analyzed responses to open-ended questions. Findings Stroke survivor and caregiver reports of engagement were highly correlated (r = .89), although caregivers reported higher involvement. Open-ended comments suggested that, in about 25% of cases, stroke survivors and caregivers agreed that caregiver engagement led to major improvements in stroke survivor care, most commonly during onset of symptoms. Conclusions Stroke survivors and caregivers report significant and impactful caregiver engagement throughout the course of stroke.