Association between caregiver engagement and patient-reported healthcare utilization after stroke: a mixed-methods study

ABSTRACT

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
• stroke rehabilitation
• stroke severity; caregivers
• caregiver-report; self-report; healthcare utilization

Acknowledgments

The authors thank the other investigators, the staff, and the participants of the Caring for Adults Recovering from the Effects of Stroke study and REasons for Geographic and Racial Differences in Stroke study for their valuable contributions. A full list of participating Reasons for Geographic and Racial Differences in Stroke investigators and institutions can be found at www.regardsstudy.org

Additional information

Funding

This research project is supported by a cooperative agreement U01 NS041588 from the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health, Department of Health and Human Service. Additional funding for the Caring for Adults Recovering from the Effects of Stroke project was provided by an investigator-initiated grant (R01 NS075047) from NINDS. The content is solely the responsibility of the authors and does not necessarily represent the official views of NINDS or the National Institutes of Health. Representatives of the funding agency have been involved in the review of the manuscript but not directly involved in the collection, management, analysis, or interpretation of the data.