Background: Caregivers (CGs) are critical in helping stroke survivors (SSs) retain function and receive adequate healthcare. Objectives: We aimed to identify the activities that CGs are engaged in over the course of stroke care from open-ended SS interviews and explore the association between CG engagement and SS healthcare utilization post-stroke.Methods: We qualitatively analyzed 9-month post-stroke interviews with 118 SSs about their experiences before, during and following acute care from the Caring for Adults Recovering from the Effects of Stroke (CARES) study. We classified each SS as having either an engaged or non-engaged CG based on whether the SS indicated CG involvement in any part of their stroke care. We compared differences between groups in self-reported use of outpatient therapy, home health care, ambulatory care, mental health services, and acute care.Results: SSs who were interviewed most often described CG involvement as driving the SS to the hospital or calling 911 (n = 48; 23.4%), coordinating medical appointments (n = 43; 21.0%) and monitoring recovery (n = 23; 11.2%). SSs with engaged CGs were more likely to see a speech-language pathologist and had more emergency room visits compared to those with non-engaged CGs. No differences were observed after adjusting for stroke severity.Conclusions: Higher rates of healthcare utilization by SSs with engaged CGs may be driven by greater stroke severity and greater need for services. Interestingly, the presence of an engaged CG did not facilitate more care for the SS after adjusting for stroke severity.
Keywords: Stroke; caregiver-report; self-report; healthcare utilization; stroke rehabilitation; stroke severity; caregivers.