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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
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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. (2017). Stroke survivor and family caregiver reports of caregiver engagement in stroke care. Rehabilitation Nursing, 00(0), 00–00. doi: 10.1097/rnj.0000000000000100

© 2019 Association of Rehabilitation Nurses.
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