Review article| Volume 98, ISSUE 9, P1852-1862.e13, September 2017

Carers' Experiences, Needs, and Preferences During Inpatient Stroke Rehabilitation: A Systematic Review of Qualitative Studies

  • Julie Luker
    Corresponding author Julie Luker, PhD, Sansom Institute for Health Research, University of South Australia, Adelaide, South Australia 5000.
    Florey Institute of Neuroscience & Mental Health, Heidelberg, VIC, Australia

    National Health and Medical Research Council Centre of Research Excellence Stroke Rehabilitation and Brain Recovery, Heidelberg, VIC, Australia

    Sansom Institute for Health Research, University of South Australia, Adelaide, SA, Australia
    Search for articles by this author
  • Carolyn Murray
    Sansom Institute for Health Research, University of South Australia, Adelaide, SA, Australia

    Occupational Therapy, University of South Australia, Adelaide, SA, Australia
    Search for articles by this author
  • Elizabeth Lynch
    Florey Institute of Neuroscience & Mental Health, Heidelberg, VIC, Australia

    National Health and Medical Research Council Centre of Research Excellence Stroke Rehabilitation and Brain Recovery, Heidelberg, VIC, Australia

    Adelaide Nursing School, University of Adelaide, Adelaide, SA, Australia
    Search for articles by this author
  • Susanne Bernhardsson
    Närhälsan Research and Development Primary Health Care, Region Västra Götaland, Göteborg, Sweden
    Search for articles by this author
  • Michelle Shannon
    Florey Institute of Neuroscience & Mental Health, Heidelberg, VIC, Australia
    Search for articles by this author
  • Julie Bernhardt
    Florey Institute of Neuroscience & Mental Health, Heidelberg, VIC, Australia

    National Health and Medical Research Council Centre of Research Excellence Stroke Rehabilitation and Brain Recovery, Heidelberg, VIC, Australia
    Search for articles by this author
Published:March 28, 2017DOI:



      To report and synthesize the experiences, needs, and preferences of carers of stroke survivors undergoing inpatient rehabilitation.

      Data Sources

      MEDLINE, CINAHL, Embase, PsycINFO, and Web of Science were searched to March 2016. Reference lists of relevant publications were searched. No language restrictions were applied.

      Study Selection

      Eligible qualitative studies reported the experiences of carers of stroke survivors who underwent inpatient rehabilitation. The search yielded 3532 records; 93 full-text publications were assessed for eligibility, and 34 documents (33 studies) were included. Comprehensiveness of reporting was assessed using the Consolidated Criteria for Reporting Qualitative Health Research framework.

      Data Extraction

      Data on the characteristics of included studies were independently extracted by 2 authors. Differences in data extraction between authors were resolved through discussion or by a third author. All text in studies' results and discussion sections were extracted for analysis.

      Data Synthesis

      Extracted texts were analyzed inductively using thematic synthesis. Seven analytical themes were developed that related to the carers' experiences, needs, and preferences: (1) overwhelmed with emotions; (2) recognition as a stakeholder in recovery; (3) desire to be heard and informed; (4) persisting for action and outcomes; (5) being legitimate clients; (6) navigating an alien culture and environment; and (7) managing the transition home.


      This systematic review provides new insights into the experiences, needs, and preferences of carers of stroke survivors undergoing inpatient rehabilitation. Carers experienced distress as they navigated a foreign culture and environment without adequate communication and processes in place for their inclusion. We recommend deliberate efforts to provide a more inclusive environment that better supports and prepares carers for their new role.


      List of abbreviations:

      COREQ (Consolidated Criteria for Reporting Qualitative Health Research)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Feigin V.L.
        • Lawes C.M.
        • Bennett D.A.
        • Anderson C.S.
        Stroke epidemiology: a review of population-based studies of incidence, prevalence and case fatality in the late 20th century.
        Lancet Neurol. 2003; 2: 43-53
        • Lackland D.T.
        • Roccella E.J.
        • Deutsch A.F.
        • et al.
        Factors influencing the decline in stroke mortality: a statement from the American Heart Association/American Stroke Association.
        Stroke. 2014; 45: 315-353
        • Vaartjes I.
        • O'Flaherty M.
        • Capewell S.
        • Kappelle J.
        • Bots M.
        Remarkable decline in ischemic stroke mortality is not matched by changes in incidence.
        Stroke. 2013; 44: 591-597
        • Deloitte Access Economics
        The economic impact of stroke in Australia.
        (Available at:) (Accessed September 4, 2016)
        • Luker J.
        • Bernhardsson S.
        • Lynch E.
        • Murray C.
        • Hill O.
        • Bernhardt J.
        Carers’ experiences, needs and preferences during inpatient stroke rehabilitation: a protocol for a systematic review of qualitative studies.
        Syst Rev. 2015; 4: 108
        • National Stroke Foundation
        Walk in our shoes: stroke survivors and carers report on support after stroke.
        National Stroke Foundation, Melbourne2007
        • National Institute for Health and Care Excellence (NICE)
        Stroke rehabilitation in adults: clinical guideline.
        2013 (Available at: Accessed April 26, 2017.)
        • Teasell R.
        • Meyer M.J.
        • McClure A.
        • et al.
        Stroke rehabilitation: an international perspective.
        Top Stroke Rehabil. 2009; 16: 44-56
        • Pollock A.
        • Baer G.
        • Campbell P.
        • et al.
        Physical rehabilitation approaches for the recovery of function and mobility following stroke.
        Cochrane Database Syst Rev. 2014; : CD001920
        • Miller E.
        • Murray L.
        • Richards L.
        • et al.
        Comprehensive overview of nursing and interdisciplinary rehabilitation care of the stroke patient. A scientific statement from the American Heart Association.
        Stroke. 2010; 41: 2402-2448
        • National Stroke Foundation
        Clinical guidelines for stroke management.
        National Stroke Foundation, Melbourne2010
        • Howe T.D.
        • Davidson B.
        • Worrall L.
        • et al.
        ‘You needed to rehab… families as well': family members' own goals for aphasia rehabilitation.
        Int J Lang Commun Disord. 2012; 47: 511-521
        • Hunt D.
        • Smith J.A.
        The personal experience of carers of stroke survivors: an interpretative phenomenological analysis.
        Disabil Rehabil. 2004; 26: 1000-1011
        • Jungbauer J.
        • Döll K.
        • Wilz G.
        [Gender- and age-specific aspects of assistance need in caregivers of stroke patients: results from a qualitative panel study].
        Rehabilitation. 2008; 47 ([German]): 145-149
        • Luker J.
        • Lynch E.
        • Bernhardsson S.
        • Bennett L.
        • Bernhardt J.
        Stroke survivors’ experiences of physical rehabilitation after stroke: a systematic review of qualitative studies.
        Arch Phys Med Rehab. 2015; 96: 1698-1708
        • Tong A.
        • Flemming K.
        • McInnes E.
        • Oliver S.
        • Craig J.
        Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ.
        BMC Med Res Methodol. 2012; 12: 181
        • Thomas J.
        • Harden A.
        Methods for the thematic synthesis of qualitative research in systematic reviews.
        BMC Med Res Methodol. 2008; 8: 45
        • Dawson A.
        • Knox J.
        • McClure A.
        • Foley N.
        • Teasell R.
        Canadian best practice recommendations for stroke care.
        in: Lindsay M.P. Bayley M. Phillips S. Canadian best practice recommendations for stroke care 2013. Heart and Stroke Foundation and the Canadian Stroke Network, Ottawa2013: 1-95
        • Carroll C.
        • Booth A.
        • Lloyd-Jones M.
        Should we exclude inadequately reported studies from qualitative systematic reviews? An evaluation of sensitivity analyses in two case study reviews.
        Qual Health Res. 2012; 22: 1425-1434
        • Lindquist I.
        • Dahlberg K.
        [The experience of being next of kin to a person with stroke].
        Nord J Nurs Res. 2002; 22 ([Swedish]): 4-9
        • Bailey M.
        • Rennie N.
        Physiotherapy support for carers of stroke patients: a survey of carers' opinions.
        Br J Ther Rehabil. 1997; 4: 82-85
        • Moher D.
        • Liberati A.
        • Tetzlaff J.
        • Altman D.G.
        • PRISMA Group
        Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement.
        PLoS Med. 2009; 6: e1000097
        • Ang S.Y.
        • Tin A.S.
        • Pavitar G.
        • et al.
        A qualitative study into stroke caregivers' educational needs—perspectives of caregivers and healthcare professionals.
        Proc Singapore Healthcare. 2013; 22: 166-174
        • Avent J.
        • Glista S.
        • Wallace S.
        • Jackson J.
        • Nishioka J.
        • Yip W.
        Family information needs about aphasia.
        Aphasiology. 2005; 19: 365-375
        • Bertilsson A.-S.
        • von Koch L.
        • Tham K.
        • Johansson U.
        Client-centred ADL intervention after stroke: Significant others' experiences.
        Scand J Occup Ther. 2015; 22: 377-386
        • Cameron J.
        • Naglie G.
        • Silver F.L.
        • Gignac M.A.
        Stroke family caregivers' support needs change across the care continuum: a qualitative study using the timing it right framework.
        Disabil Rehabil. 2013; 35: 315-324
        • Cameron J.I.
        • Bastawrous M.
        • Marsella A.
        • et al.
        Stroke survivors', caregivers', and health care professionals' perspectives on the weekend pass to facilitate transition home.
        J Rehabil Med. 2014; 46: 858-863
        • Clark M.S.
        Patient and spouse perceptions of stroke and its rehabilitation.
        Int J Rehabil Res. 2000; 23: 19-29
        • Creasy K.R.
        • Lutz B.J.
        • Young M.E.
        • Ford A.
        • Martz C.
        The impact of interactions with providers on stroke caregivers' needs.
        Rehabil Nurs. 2013; 38: 88-98
        • Danzl M.M.
        • Hunter E.G.
        • Campbell S.
        • et al.
        “Living with a ball and chain”: the experience of stroke for individuals and their caregivers in rural Appalachian Kentucky.
        J Rural Health. 2013; 29: 368-382
        • Ellis-Hill C.R.
        • Robison J.
        • Wiles R.
        • McPherson K.
        • Hyndman D.
        • Ashburn A.
        Going home to get on with life: patients and carers [sic] experiences of being discharged from hospital following a stroke.
        Disabil Rehabil. 2009; 31: 61-72
        • Eng X.W.
        • Brauer S.G.
        • Kuys S.S.
        • Lord M.
        • Hayward K.S.
        Factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient stroke rehabilitation.
        Stroke Res Treat. 2014; 2014: 626538
        • Galvin R.
        • Stokes E.
        • Cusack T.
        Family-Mediated Exercises (FAME): an exploration of participant's involvement in a novel form of exercise delivery after stroke.
        Top Stroke Rehabil. 2014; 21: 63-74
        • Garrett D.
        • Cowdell F.
        Information needs of patients and carers following stroke.
        Nurs Older People. 2005; 17: 14-16
        • Gustafsson L.
        • Bootle K.
        Client and carer experience of transition home from inpatient stroke rehabilitation.
        Disabil Rehabil. 2013; 35: 1380-1386
        • Halle M.-C.
        • Le Dorze G.
        Understanding significant others' experience of aphasia and rehabilitation following stroke.
        Disabil Rehabil. 2014; 36: 1774-1782
        • Hewitt G.
        • Sims S.
        • Greenwood N.
        • Jones F.
        • Ross F.
        • Harris R.
        Interprofessional teamwork in stroke care: is it visible or important to patients and carers?.
        J Interprofessional Care. 2015; 29: 331-339
        • Levack W.M.
        • Dean S.G.
        • Siegert R.J.
        • McPherson K.M.
        Navigating patient-centered goal setting in inpatient stroke rehabilitation: how clinicians control the process to meet perceived professional responsibilities.
        Patient Educ Couns. 2011; 85: 206-213
        • Lutz B.J.
        • Young M.E.
        • Cox K.J.
        • Martz C.
        • Creasy K.R.
        The crisis of stroke: experiences of patients and their family caregivers.
        Top Stroke Rehabil. 2011; 18: 786-797
        • Morris R.
        • Payne O.
        • Lambert A.
        Patient, carer and staff experience of a hospital-based stroke service.
        Int J Qual Health Care. 2007; 19: 105-112
        • Morris R.
        • Morris P.
        Participants' experiences of hospital-based peer support groups for stroke patients and carers.
        Disabil Rehabil. 2012; 34: 347-354
        • Rochette A.
        • Racine E.
        • Lefebvre H.
        • Lacombe J.
        • Bastien J.
        • Tellier M.
        Ethical issues relating to the inclusion of relatives as clients in the post-stroke rehabilitation process as perceived by patients, relatives and health professionals.
        Patient Educ Couns. 2014; 94: 384-389
        • Rochette A.
        • Racine E.
        • Lefebvre H.
        • Bastien J.
        • Tellier M.
        Actual and ideal services in acute care and rehabilitation for relatives post-stroke from three perspectives: relatives, stroke clients and health professionals.
        J Rehabil Med. 2014; 46: 16-22
        • Schmitz M.A.
        • Finkelstein M.
        Perspectives on poststroke sexual issues and rehabilitation needs.
        Top Stroke Rehabil. 2010; 17: 204-213
        • Secrest J.S.
        How stroke survivors and primary support persons experience nurses in rehabilitation.
        Rehabil Nurs. 2002; 27: 176-181
        • Silva-Smith A.L.
        Restructuring life: preparing for and beginning a new caregiving role.
        J Fam Nurs. 2007; 13: 99-116
        • Smith S.D.
        • Gignac M.A.
        • Richardson D.
        • Cameron J.I.
        Differences in the experiences and support needs of family caregivers to stroke survivors: does age matter?.
        Top Stroke Rehabil. 2008; 15: 593-601
        • Tyson S.F.
        • Burton L.J.
        • McGovern A.
        • Sharifi S.
        Service users' views of the assessment process in stroke rehabilitation.
        Clin Rehabil. 2014; 28: 824-831
        • Wallengren C.
        • Friberg F.
        • Segesten K.
        Like a shadow—on becoming a stroke victim's relative.
        Scand J Caring Sci. 2008; 22: 48-55
        • Wiles R.
        • Pain H.
        • Buckland S.
        • McLellan L.
        Providing appropriate information to patients and carers following a stroke.
        J Adv Nurs. 1998; 28: 794-801
        • Young M.E.
        • Lutz B.J.
        • Creasy K.R.
        • Cox K.J.
        • Martz C.
        A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation.
        Disabil Rehabil. 2014; 36: 1892-1902
        • Wu C-m
        Learning to be a family caregiver for severely debilitated stroke survivors during the first year in Taiwan.
        ([dissertation]) University of Iowa, Iowa City2009
        • Campbell N.C.
        • Murray E.
        • Darbyshire J.
        • et al.
        Designing and evaluating complex interventions to improve health care.
        BMJ. 2007; : 334-455
        • Bakas T.
        • Burgener S.C.
        Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors.
        Top Stroke Rehabil. 2002; 9: 34-45
        • Rigby H.
        • Gubitz G.
        • Phillips S.
        A systematic review of caregiver burden following stroke.
        Int J Stroke. 2009; 4: 285-292
      1. Deloitte Access Economics. The economic value of informal care in 2015. Deloitte Access Economics Pty Ltd; Kingston, Australian Capital Territory.

        • Barry M.J.
        • Edgman-Levitan S.
        Shared decision making—the pinnacle of patient-centered care.
        N Engl J Med. 2012; 366: 780-781
        • Nolan M.
        Working with family carers: towards a partnership approach.
        Rev Clin Gerontol. 2001; 11: 91-97
        • Brown I.
        • Renwick R.
        • Nagler M.
        The centrality of quality of life in health promotion and rehabilitation.
        in: Renwick R. Brown I. Nagler M. Quality of life in health promotion and rehabilitation: conceptual approaches, issues and applications. Sage, Thousand Oaks1996
        • Sadler E.
        • McKevitt C.
        ‘Expert carers’: an emergent normative model of the caregiver.
        Soc Theory Health. 2013; 11: 40-58
        • The Health Foundation
        Person-centred care made simple: what everyone should know about person-centred care.
        2014 (Available at: Accessed April 26, 2017.)
        • Kitson A.
        • Marshall A.
        • Bassett K.
        • Zeitz K.
        What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing.
        J Adv Nurs. 2013; 69: 4-15
        • Australian Commission for Safety and Quality in Health Care
        The National Safety and Quality goals for health care: patient and consumer centred care.
        (Available at:) (Accessed November 11, 2016)
        • Consumers' Health Forum of Australia
        2015-2018 strategic plan.
        (Available at:) (Accessed November 22, 2016)
        • Shaw R.L.
        • Booth A.
        • Sutton A.J.
        • et al.
        Finding qualitative research: an evaluation of search strategies.
        BMC Med Res Methodol. 2004; 4: 5