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Needs of Stroke Survivors as Perceived by Their Caregivers: A Scoping Review

Krishnan, Shilpa PT, PhD; Pappadis, Monique R. MEd, PhD; Weller, Susan C. PhD; Stearnes, Marsja MS; Kumar, Amit MPH, PhD, PT; Ottenbacher, Kenneth J. OTR, PhD; Reistetter, Timothy A. OTR, PhD

American Journal of Physical Medicine & Rehabilitation: July 2017 - Volume 96 - Issue 7 - p 487–505
doi: 10.1097/PHM.0000000000000717
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Objective Caregivers usually are not involved while planning the stroke survivor's medical and rehabilitation goals and interventions. This review aimed to identify the needs of stroke survivors as perceived by their caregivers.

Design A literature search from 2003 to 2014 was conducted using Medline, CINAHL, PsychINFO, and Google Scholar. Sixty-six studies were included. Most studies excluded did not encompass caregivers' perspectives. Four reviewers screened the titles, abstracts, and full texts of the articles for inclusion. The data extracted from these studies were synthetized into metathemes.

Results Fifty-two qualitative, ten quantitative survey, and four mixed-methods studies were included in the final synthesis. The studies came from 11 countries. The data synthesis produced following three metathemes: (a) body functional needs, including psychological function, physical function, cognitive function, and uncertainty related to function; (b) activity and participatory needs, including healthy lifestyle, physical activities, speech, independence, cognitive activities, and uncertainty related to activities and participation; and (c) environmental needs, encompassing support, services, safety, accommodation and accessibility, and uncertainty related to environmental factors.

Conclusions This scoping review identified a range of needs of stroke survivors as perceived by their caregivers. Incorporating the caregiver's preferences and values into clinical decisions may improve outcomes among stroke survivors.

Supplemental digital content is available in the text.

From the Department of Occupational Therapy (SK, TAR), Division of Rehabilitation Sciences (MRP, KJO, TAR), Preventive Medicine and Community Health (SCW), and Sealy Center on Aging (MS, KJO, TAR), University of Texas Medical Branch, Galveston, Texas; and Department of Health Services, Policy and Practice, Brown University, Providence, Rhode Island (AK).

All correspondence and requests for reprints should be addressed to: Timothy A. Reistetter, OTR, PhD, Department of Occupational Therapy, School of Health Professions, University of Texas Medical Branch, 301 University Blvd, Galveston, TX 77555-1142.

Supported with funding from the National Institute of Health, NICHD (K01-HD068513); Agency for Health Care Research and Quality (R24 HS022134, R01 HS024711); National Institute on Disability, Independent Living and Rehabilitation Research (90AR5009); UTMB Institute for Translational Sciences support by an NIH Clinical and Translational Science Award (UL1RR029876); and UTMB Claude D. Pepper Older Americans Independence Center NIH/NIA (P30 AG024832).

Preliminary results were presented at the Academy Health Scientific Meeting, Minneapolis, Minnesota, June 15, 2015; the Gerontological Society of America's Annual Scientific Meeting in Orlando, Florida, November 20, 2015; and the Topics of Patient Centered Outcomes Research, UTMB, Galveston, Texas, February 24, 2016.

Financial disclosure statements have been obtained, and no conflicts of interest have been reported by the authors or by any individuals in control of the content of this article.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.ajpmr.com).

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