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

Haley, William E. PhD1; Marino, Victoria R. BA1; Sheehan, Orla C. PhD, MD2; Rhodes, J. David BSN, RN, MPH3; Kissela, Brett MD, MS4; Roth, David L. PhD2

doi: 10.1097/rnj.0000000000000100

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.

Clinical Relevance Clinicians may enhance stroke care by recognizing and facilitating caregiver efforts across all phases of stroke care.

1 School of Aging Studies, University of South Florida, Tampa, FL, USA

2 Center on Aging and Health, Division of Geriatric Medicine and Gerontology, Department of Medicine, Johns Hopkins University, Baltimore, MD, USA

3 Department of Biostatistics, University of Alabama at Birmingham, Birmingham, AL, USA

4 Department of Neurology and Rehabilitation Medicine, University of Cincinnati, Cincinnati, OH, USA

Correspondence: William E. Haley, School of Aging Studies, MHC 1321, University of South Florida, Tampa, FL 33620, USA. E-mail:

Cite this article as: Haley, W. E., Marino, V. R., Sheehan, O. C., Rhodes, J. D., Kissela, B., & Roth, D. L. (2019). Stroke survivor and family caregiver reports of caregiver engagement in stroke care. Rehabilitation Nursing, 44(6), 302–310. doi: 10.1097/rnj.0000000000000100

Online date: September 5, 2017

© 2019 Association of Rehabilitation Nurses.
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