- Email: [email protected]
Carers' Experiences, Needs, and Preferences During Inpatient Stroke Rehabilitation: A Systematic Review of Qualitative Studies
Accepted Manuscript Carers' experiences, needs and preferences during inpatient stroke rehabilitation: a systematic review of qualitative studies Julie Luker, PhD, Carolyn Murray, PhD, Elizabeth Lynch, PhD, Susanne Bernhardsson, PhD, Michelle Shannon, MSc, Julie Bernhardt, PhD. PII:
S0003-9993(17)30182-X
DOI:
10.1016/j.apmr.2017.02.024
Reference:
YAPMR 56838
To appear in:
ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION
Received Date: 27 November 2016 Revised Date:
30 January 2017
Accepted Date: 25 February 2017
Please cite this article as: Luker J, Murray C, Lynch E, Bernhardsson S, Shannon M, Bernhardt J, Carers' experiences, needs and preferences during inpatient stroke rehabilitation: a systematic review of qualitative studies, ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION (2017), doi: 10.1016/ j.apmr.2017.02.024. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Carers’ experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16-01488
ACCEPTED MANUSCRIPT Title page
Title: Carers' experiences, needs and preferences during inpatient stroke rehabilitation: a
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systematic review of qualitative studies
Authors: Julie Luker, PhD,a,b,c Carolyn Murray, PhD,d Elizabeth Lynch, PhD,a,b,e Susanne
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Bernhardsson, PhD,f Michelle Shannon, MSc,a Julie Bernhardt, PhD.a,b
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From the a
Florey Institute of Neuroscience & Mental Health, Heidelberg, VIC, Australia;
b
NHMRC Centre of Research Excellence Stroke Rehabilitation and Brain Recovery,
Heidelberg, VIC, Australia; c
Sansom Institute for Health Research, University of South Australia, Adelaide, SA,
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Australia;
Occupational Therapy, University of South Australia, Adelaide, SA, Australia;
e
Adelaide Nursing School, University of Adelaide, Adelaide SA, Australia;
f
Närhälsan Research and Development Primary Health Care, Region Västra Götaland,
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Göteborg, Sweden
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d
Acknowledgements
The authors thank and acknowledge Olivia Hill, (BHlthSc(hons)) for her assistance with data searching and selection, and Debra Kay (PSM; Chairperson Health Consumers Alliance of SA) for her insights on the political health consumer agenda.
Carers’ experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16-01488
ACCEPTED MANUSCRIPT
Funding acknowledgements: At the time of the study Julie Luker held an NHMRC (1052524) Early Career Fellowship; Julie Bernhardt held an NHMRC (1058635) Senior Research Fellowship; Elizabeth Lynch and Carolyn Murray were undertaking PhDs funded by
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Australian Postgraduates Awards.
been presented elsewhere. Conflicts of interest: No conflicts are declared
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Corresponding author: Dr Julie Luker
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Presentation acknowledgments: At the time of submission material from this study has not
c/- Sansom Institute for Health Research, University of South Australia, Adelaide, South Australia 5000 Phone: +61 8 83021021
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Email: [email protected]
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PROSPERO systematic review registration number: CRD42015017315
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 1
Title:
Carers’ experiences, needs and preferences during inpatient stroke
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rehabilitation: a systematic review of qualitative studies
3 ABSTRACT
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Objective: To report and synthesise the experiences, needs and preferences of carers of
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stroke survivors undergoing inpatient rehabilitation.
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Data sources: MEDLINE, CINAHL, Embase, PsycINFO and Web of Science were searched
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to March 2016. Reference lists of relevant publications were searched. No language
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restrictions were applied.
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Study selection, appraisal and data extraction: Eligible qualitative studies reported the
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experiences of carers of stroke survivors who underwent inpatient rehabilitation. Selection,
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quality appraisal, and data extraction were undertaken by two or more reviewers. The search
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yielded 3532 records; 93 full-text publications were assessed for eligibility and 34 documents
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(33 studies) were included. Comprehensiveness of reporting was assessed using the COREQ
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framework. All text in studies’ results and discussion sections were extracted for analysis.
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Data synthesis: Extracted texts were analysed inductively using thematic synthesis. Seven
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analytical themes were developed that related to the carers’ experiences, needs and
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preferences: (1) Overwhelmed with emotions; (2) Recognition as a stakeholder in recovery;
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(3) Desire to be heard and informed; (4) Persisting for action and outcomes; (5) Being
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legitimate clients; (6) Navigating an alien culture and environment; (7) Managing the
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transition home.
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Conclusions: This systematic review provides new insights into the experiences, needs and
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preferences of carers of stroke survivors undergoing inpatient rehabilitation. Carers
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 experienced distress as they navigated a foreign culture and environment without adequate
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communication and processes in place for their inclusion. We recommend deliberate efforts
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to provide a more inclusive environment that better supports and prepares carers for their new
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role.
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28 29 ABBREVIATIONS
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ENTREQ
Enhancing Transparency of Reporting the Synthesis of Qualitative Research
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COREQ
Consolidated Criteria for Reporting Qualitative Health Research
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NICE
National Institute for Health and Care Excellence
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34 35 KEY WORDS
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Rehabilitation; Stroke; Qualitative research; Caregivers; Review
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 INTRODUCTION
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Stroke is a leading cause of death and disability worldwide [1]. Advances in acute stroke
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management have reduced mortality rates but not stroke incidence [2, 3], so the number of
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stroke survivors living with disability continues to grow, generating a heavy human and
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economic burden [3].
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The majority of stroke survivors (65%) require assistance from others for activities of daily
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living [4]. The 2009 Australian Survey of Disability, Ageing and Carers reported 26,367
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Australians caring for people with stroke, with most spending 40 hours or more per week in
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this role [4]. As self-reported data, these figures are likely to be an under-estimate.
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In the published protocol for this systematic review we explored the variable terminology,
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roles, time commitments and relationships that exist for carers of stroke survivors [5]. We
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define carers as the spouse or partner, family members, friends or ‘significant others’ who
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provide physical, practical or emotional support to someone after their stroke.
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Carers play essential roles in stroke recovery and rehabilitation, enabling many people with
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stroke to remain living in the community with an acceptable quality of life [6]. Inpatient
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stroke rehabilitation plays an important role in recovery of function and mobility for stroke
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survivors. There is a growing evidence base for rehabilitation after stroke, however very little
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of this evidence includes consideration of carers [7-9]. Although stroke guidelines
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recommend actively engaging carers in the rehabilitation process [10, 11], these
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recommendations are largely underpinned by expert opinion only and little guidance is
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available on how this is best achieved. Despite the essential role that carers play for people
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with stroke, and indeed for the healthcare sector, there is little indication on how best to
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prepare carers for this role.
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 The experiences, needs, and preferences of both stroke survivors and their carers are
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important aspects of the stroke rehabilitation process and should inform a person-centred
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approach [12-14]. Ideally, carers should be an integral part of a three-way partnership
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together with healthcare providers and stroke survivors. Our recent systematic review and
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meta-synthesis regarding the experience of stroke survivors during inpatient rehabilitation
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highlighted that better engagement of carers in stroke rehabilitation could contribute to
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progress and recovery [15]. Stroke survivors perceived that the involvement of carers could
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help to alleviate boredom and loneliness, assist with extra practice or exercise, encourage
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motivation and self-efficacy and help in accessing information.
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The growing recognition of the importance of carers for stroke survivors has led to a body of
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qualitative research exploring carers’ viewpoints during and after stroke rehabilitation. There
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is a need to synthesize the carer perspectives to inform development of sustainable, person-
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centred stroke rehabilitation models.
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The authors’ place in this research
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The authors of this systematic review are allied health professionals and researchers
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interested in evidence-based practices that meet the needs of healthcare consumers. The
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research team has interests in person-centred stroke care and models of rehabilitation that
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optimise recovery.
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 Objectives
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The primary objective of this systematic review was to report and synthesise the experiences,
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needs and preferences of carers of stroke survivors undergoing inpatient stroke rehabilitation.
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The secondary objective was to deliver evidence-informed recommendations for person-
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centred inpatient stroke rehabilitation that include consideration of, and planning for, the
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needs, preferences and contribution of carers.
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87 METHODS
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Details of our methodology have been previously reported [5], and the review was registered
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with PROSPERO (CRD42015017315). We followed the Enhancing Transparency of
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Reporting the Synthesis of Qualitative Research (ENTREQ) statement to guide our reporting
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[16]. We chose a thematic synthesis methodology [17] to facilitate analytical theme
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development extending beyond the primary studies, and to generate new insights..
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Criteria for considering studies for this review
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Types of studies: Qualitative studies were included with no language or publication date
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constraints applied.
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Types of participants: Carers of stroke survivors, when the stroke survivors participated in
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inpatient stroke rehabilitation.
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Intervention/exposure: Included studies considered the process of stroke rehabilitation from
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the carer perspective. Data could have been collected during inpatient rehabilitation, or after
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discharge with participants reflecting on their experience. 5
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Exclusion criteria: Studies where data did not directly relate to the experiences, services or
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care provided (or not provided) during inpatient rehabilitation; studies where data related to
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carers’ of stroke survivors could not be separated out; paediatric stroke.
106 The following definition of stroke rehabilitation was used for this review:
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“…a dynamic, progressive, goal orientated process aimed at enabling a person with
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impairment to reach their optimal physical, cognitive, emotional, communicative and/or
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social functional level” [18, p. 4].
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Electronic database searches were conducted in MEDLINE, CINAHL, PsycINFO, Embase,
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and Web of Science from the inception of the databases to March 2016. A research librarian
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helped develop a search string on MEDLINE, which was adapted for the other databases
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(example MEDLINE search in Online Appendix 1). Reference lists of relevant studies and
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reviews were hand searched to identify additional potentially relevant studies. No language
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restrictions were applied.
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Study selection
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Following the removal of duplicates, study selection occurred in two phases. In the first
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phase, all titles and abstracts were screened independently by two authors. All review authors
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performed this step. Differences were resolved through discussion or by a third author. In the
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second phase, full-text articles were screened independently by two authors and differences
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were resolved through discussion or by a third author (JL, CM, SB, EL). The Covidence
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 softwarea was used to assist the study selection, screening and critical appraisal processes.
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The flow diagram in Figure 1 illustrates the selection process and reasons for exclusion.
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Exclusion based on quality: Using the process described by Carroll et al (2012), studies were
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excluded if they did not meet at least two of four quality reporting criteria regarding study
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design, selection of participants, methods of data collection and analysis [19].
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131 Critical appraisal of selected papers
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Two authors (JL, SB, EL, CM) independently assessed the included articles for
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comprehensive reporting, discussed differences and reached consensus on scoring. Two non-
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English articles were assessed by the researcher fluent in the published language (SB) [14,
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20].
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Assessing comprehensiveness of reporting: To provide details of comprehensive and explicit
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reporting, included studies were assessed using the Consolidated Criteria for Reporting
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Qualitative Health Research (COREQ) 32-item checklist [16]. Using the COREQ criteria,
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appraisers made judgements about risks to the trustworthiness of included studies based on
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the quality or comprehensiveness of reporting. For example, studies were considered more
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trustworthy if authors justified and explained the setting where interviews or focus groups
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took place and credibility was questioned when those providing rehabilitation services also
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conducted the research, and there were no divergent cases presented.
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145 146
Data extraction
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 Data on the characteristics of included studies were independently extracted by two authors
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(JL plus MS, EL or SB) and a comparison between the extractions was made. Differences in
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data extraction between authors were resolved through discussion, or by a third author. All
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findings presented as text in the ‘Results/findings’, ‘Discussion’ and ‘Conclusion’ sections of
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papers were extracted (JL) and entered into the NVivo 10b software to assist data
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management and coding analysis.
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147
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153 Thematic synthesis
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Details of this thematic synthesis are reported in a previously published study protocol [5]. In
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summary, three stages of inductive coding and thematic development were undertaken, each
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involving independent analysis by two or more experienced qualitative researchers (JL plus
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SB, EL or MS). Small sections of meaning within the text data were initially coded to capture
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the meaning and content of the findings from the original studies. Secondly, the whole
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research team examined the coded data and organised them into logical and meaningful
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groups in a hierarchical tree structure, thereby forming descriptive themes and sub-themes. In
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the third stage (led by CM), analytical themes relating to the aims of the review were
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developed, with the intent of ‘going beyond’ the content of the original studies and adding an
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element of interpretation [17]. Both descriptive and analytical themes were then used as a
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basis for the formulation of evidence-informed recommendations for person-centred inpatient
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stroke rehabilitation that include consideration of the needs and preferences of carers.
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RESULTS
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Study selection results 8
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 The systematic search returned 2858 records after removal of duplicates. The abstract
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screening and full text review process resulted in the selection of 35 documents representing
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34 separate studies. One study [21] was excluded because it did not meet the core quality
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reporting criteria. Therefore, 34 documents from 33 studies were included in the thematic
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synthesis (see Figure 1).
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<< Figure 1 about here >>
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Characteristics of included studies
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Study details are shown in Table 1 and online Appendix 2. The 34 documents included 33
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published journal articles, and one freely available PhD thesis. One paper was published in
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Swedish [20] and another in German [14], and both were translated prior to data extraction.
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The included qualitative data were contributed by 452 carers of people with stroke from 10
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different countries, thus enhancing transferability and generalisability of the review. Studies
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were published between 1998 and 2015 and varied in their sample sizes, ranging from 3 to 48
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carer participants. Carers were the only participants in 11 studies; remaining studies also
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included data from stroke survivors and/or healthcare professionals. Studies’ primary aims
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varied and included exploring the perspectives of carers (and stroke survivors) regarding
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aspects of rehabilitation (n=13), carers’ needs or experiences as they transitioned from
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hospital to home (n=4), exploring information/education needs (n=5), and describing the
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process or meaning of becoming the carer to a stroke survivor (n=6). Three studies, with 76
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carer participants, focused on the experience of aphasia following stroke.
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<< Table 1 about here >>
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191 192
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Comprehensiveness of reporting
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The quality of reporting of the included studies varied, meeting between 9 and 25 of the 32
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items on the COREQ checklist (see online Appendix 3).
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196 Synthesis
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Analysis of the primary data resulted in 141 preliminary codes that were grouped into 56
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descriptive themes. In an exhaustive final level of analysis we developed interrelated
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analytical themes that went beyond the content of the original studies and added an element
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of interpretation to address our research aims. We identified seven analytical themes:
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overwhelmed with emotions, recognition as a stakeholder in recovery, desire to be heard and
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informed, persisting for action and outcomes, being legitimate clients, navigating an alien
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culture and environment, and managing the transition home. Table 2 details the analytical
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themes, their underpinning descriptive themes and the relevant source studies.
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<< Table 2 about here >>
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The themes are described below and selected quotes to illustrate each descriptive theme are
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provided in Online Appendix 4. Themes were not neatly bounded, with overlapping and cross
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connections noted across themes, illustrating the complexity of the experiences of carers
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during inpatient rehabilitation.
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1. Overwhelmed with emotions
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The first analytical theme was derived from 23 studies [12-14, 20, 23-27, 29, 30, 33, 36, 39-
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42, 45-47, 49, 51, 52] and comprised 11 descriptive themes. Carers experienced a strong
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emotional response to the stroke survivor having the stroke, being hospitalised and being
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distressed by the uncertainty of the future and the responsibilities they carried for supporting
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and advocating for the person with stroke. With the new responsibilities came some
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resentment and guilt about the self-sacrifice required of them and some carers reported pain
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and other physical symptoms which they believed resulted from their emotional state and
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stress. They noticed a shift in their relationships with their relative and felt grief and loss as
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they adjusted to their new circumstances. This response seemed particularly evident for those
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caring for people who had aphasia. It was perceived important that staff not only prepare
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carers for the worst but also provide a sense of hope for recovery and positivity. Emotional,
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psychosocial and practical support from family, staff and particularly peer carers, was
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reported to relieve distress.
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2. Recognition as a stakeholder in recovery
This theme was about carers wanting to contribute to the recovery of the stroke survivor as
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this facilitated feeling involved and helpful. The theme had nine descriptive themes arising
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from 26 studies [12, 13, 20, 23-26, 29, 31-36, 38, 39, 41-43, 45, 47-52]. Carers prioritised
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‘being there’ for the stroke survivor over their own self-care and their other life roles. They
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expressed frustration about staff not actively involving them in therapy, the lack of
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“homework” [12, p. 515] and having their expertise about the interests and past routines and
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roles of the stroke survivor underutilised. If not given exercises or activities to do with the
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stroke survivor, some carers devised their own. Carers believed that with their involvement,
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rehabilitation could be more individualised and meaningful and they could more effectively
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support the person emotionally. They found it harder to support the person’s recovery when
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they didn’t know what to expect, what the recovery trajectory would be and how the person
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was progressing. Lack of regular updates heightened their stress levels leading them to make
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their own conclusions and assumptions based on what they observed and their own
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initiatives.
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3. Desire to be heard and informed When carers felt listened to and included they had more confidence in the rehabilitation
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process. This theme had 10 descriptive themes and was highly prevalent throughout the data
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in 32 primary studies [12-14, 20, 23-37, 40-52]. When staff were supportive and caring
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toward carers, they became reassured that their relative was in a safe environment and when
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they were included and informed, they found it easier to advocate for the stroke survivor.
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When they were not included they felt disempowered and became suspicious about what was
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going on. This was damaging to the relationship between the carers and health professionals,
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particularly when carers were treated disparagingly causing them to feel invisible,
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intentionally excluded and alone. A participant in the research by Creasy [29, p 92]
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remembered being called a “haemorrhoid” by health professionals and a participant in Wu
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[51, p. 79] described medical practitioners as “arrogant” becoming defensive when carers
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asked them questions.
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It was recommended that health professionals actively engage with carers to understand their
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readiness for different information, and the appropriate doses, to keep them informed but not
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overwhelmed. The broad range of information required by carers was discussed in 20 primary
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studies with topics including the consequences of stroke and its causes, prognosis for
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recovery, assessment results, rehabilitation and therapy, how best to assist and interact with
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the stroke survivor, sexuality post-stroke, and preparation for discharge. A variety of
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information formats were required to meet carers’ varying needs and ideally these should be
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individualised, without jargon and often needed to be repeated. The research by Cameron
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[26] found that carer information needs changed over the recovery trajectory and
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coordinated, two-way sharing of information. Due to the extraordinary nature of their
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experience, carers wanted staff to proactively engage with them, as expressed by one carer
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“you're so overwhelmed you don't know what you need” [24, p. 371]. When information was
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not forthcoming, carers implemented strategies of “chasing” health professionals, patiently
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standing sentinel over the stroke survivor and sourcing their own information. 4. Persisting for action and outcomes
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This theme had six descriptive themes and included data from 13 primary studies [13, 28, 29,
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35, 36, 40, 42, 43, 45, 48-51]. Carers needed increasing persistence to find information that
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they needed and to get the care that they perceived the stroke survivor needed. The busy-ness
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of health professionals was regarded as a barrier to carers having their needs met. Whilst
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carers were initially empathetic about the workload of health professionals and the limited
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resources in the inpatient environment, their patience and politeness began to fade. A carer in
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research by Halle [36] stopped caring whether she upset the health professionals with her
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questions, and carers in Creasy’s study [29, p. 94] described themselves as being “the
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squeaky wheel” and using “a loud voice”. Carers raised concerns that insufficient therapy
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would compromise stroke recovery and about demeaning, uncaring treatment of the person
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with stroke. They found that complaining was mostly ineffective causing them to become
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increasingly protective. One carer in Secrest’s study described the difficulty of “having to
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choose my battles,” that “we had to keep fighting that,” and “we just begged.” [45]. It is
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likely that these experiences exacerbated the emotional strain and distress that were described
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in the first theme.
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26, 29, 31, 33-44, 47-52]. Based on staff behaviour, some carers perceived that they were not
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eligible for services from the health professionals. However, as explained in the first theme,
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carers were experiencing an emotionally difficult time and seemed to be crying out for some
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personal support and counselling. Many lamented the lack of carer training to prepare them
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for their new role (discussed further in theme 7). This finding resulted from some health
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systems not having processes in place for including carers, or a family centred approach,
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focusing only on the stroke survivor. This oversight led to carers being unprepared for their
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caring role.
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6. Navigating an alien culture and environment
This theme had eight descriptive themes and included data from 29 primary studies [12-14,
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23, 24, 26-40, 42, 43, 45-49, 51, 52]. Carers with health literacy who were familiar with
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hospital environments were at an advantage. Carers who were unfamiliar with hospital and
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rehabilitation settings were left to navigate an environment that was foreign to them without a
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“road map” [24, p. 368], and were reliant on health professionals to guide them. Issues arose
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when health professionals mistakenly assumed that carers already had information or
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knowledge, and when carers did not know what questions to ask. Some staff provided more
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help and support to carers than others, with Secrest [45] describing nurses as being on a
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continuum from helpful to adversarial. Established cultures and systems of care in the acute
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or rehabilitation environments sometimes prohibited inclusion of carers and promoted
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inflexibility about approaches to care. A sense of alienation was exacerbated by health
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professionals who did not always work in coordinated or efficient teams, which could lead to
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the repeating of questions and assessments. Carers appreciated the efforts of some health
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professionals to help them understand the processes, procedures and expectations during
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rehabilitation.
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7. Managing the transition home Carers have a pivotal role in enabling the stroke survivor to transition to home. This theme
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had six descriptive themes and included data from 24 primary studies [12, 13, 20, 23-29, 31,
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33-36, 39, 43, 44, 46, 47, 49-52]. Carers were often unprepared for discharge and many
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needed more hands-on practise and training. One carer commented “I don’t think they
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[speech pathologists] realize how important it is to the actual carer ... to learn some of the
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skills [for communicating with the person with aphasia]” [12, p. 516]. Practise and training
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that occurred in the inpatient environment did not always translate well to home and carers
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found it bewildering that professionals seemed unaware of this dissonance. Explicit
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information about arrangements gave carers more control over what services were organised
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and increased confidence to follow up if services and support were not forthcoming after
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discharge. Not all needs could be anticipated prior to discharge, so carers needed to have the
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resources to initiate services, manage finances and ask questions once the person with stroke
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returned home.
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The transition to home for carers included adjustment to their perception of the future,
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possible changes in their relationship with the stroke survivor and the new responsibilities
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associated with being a carer. Carers reported the need for coping strategies, counselling and
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opportunities for reflection about their situation. In particular, carers need to be given
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permission to take time out and respite to address their own needs.
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DISCUSSION
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This review completes our systematic study of stroke survivors [15] and their carers’
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experience of inpatient stroke rehabilitation. Key findings of our review were that carers of
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stroke survivors often become overwhelmed with emotions, that they have a strong desire to 15
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outcomes during inpatient rehabilitation. The process of stroke rehabilitation differs between
337
services, and is recognised as being a ‘complex intervention’ with a range of moving parts
338
[53], bringing challenges for multiple stakeholders. The role of the carer in long term care
339
and support of a person with stroke is well documented [6, 54], as is the long term stress [55]
340
often associated with providing that care. In the Australian healthcare context, replacing the
341
unpaid work provided by carers in 2015 is estimated to cost AU$60.3 billion or 3.8% of
342
Gross Domestic Product [56]. What is less well described is the early experience of becoming
343
a carer of someone with stroke and the needs of carers during the important phase of
344
rehabilitation.
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335
345
In this review we identified seven analytical themes highlighting both the early stress
347
associated with becoming a carer, and the challenges of getting the information and
348
engagement with staff that carers need to support the stroke survivor in an alien healthcare
349
environment. While many of these themes were unique to the experience of carers, and not
350
found in our earlier systematic review of stroke survivors [15], there were some interesting
351
synergies. For example, both people with stroke and their carers reported feelings of distress,
352
anxiety and fear during the inpatient period which was exacerbated by their sense of
353
dependency and reliance on staff. Both groups craved better two-way communication with
354
staff and timely information about the stroke and recovery. The importance of maintaining
355
hope, and the desire for more rehabilitation therapy were also common to both stroke
356
survivors and their carers. A number of themes highlight the preference of some carers to be
357
fully engaged in the process of rehabilitation. The idea that carers wish to be considered as
358
legitimate clients in the stroke survivor’s recovery came through strongly in this review. This
359
notion, that carers should be an integral part of rehabilitation, is increasingly promoted for
AC C
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16
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 360
stroke rehabilitation [7, 57]. The reality appears to be very different, and some guideline
361
recommendations still suggest passive roles for carers (such as receivers of information)
362
rather than active partnerships in the process [7, 11].
RI PT
363 In 2001, Nolan called for a “cognitive shift” in the way health professionals perceive carers
365
[58]. There is potential for conflict to arise between health professionals and carers regarding
366
recognition of expert knowledge of the stroke survivors’ needs. Both stakeholder groups hold
367
different forms of expertise relating to the survivor which, in combination, may enhance care
368
and recovery. A number of frameworks to explore the engagement of carers in rehabilitation
369
have been developed over the years. For example, Brown and colleagues [59] outlined a
370
model delineating potential levels of interaction between carers and health care professional
371
ranging from no involvement right through to family as therapy assistant, family as co-client,
372
collaborator or director. An alternative model, the ‘carer-as-expert’ model is based on the
373
principles that the demands on carers, and their skills and expertise, develop over time and
374
will not be static. The carer-as-expert approach aims to help carers attain the skill,
375
competencies and resources they need, without detriment to their own health [60]. What
376
remains elusive is the systematic application and testing of any theoretical approaches that
377
aim to improve engagement of carers throughout the period of rehabilitation and first
378
transition home. A review of caregiver interventions and caregiver/stroke survivor dyad
379
interventions found 32 studies with a range of study designs, treatment targets and outcomes
380
[54]. Some well-designed trials targeted education and skill building to support carers, and
381
interventions to reduce caregiver anxiety and stress [54]. While a number of
382
recommendations were made in the review, its focus was on health professional-led
383
interventions for carers, rather than on partnership approaches to delivering rehabilitation.
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364
17
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 384 Given the recently increased attention on delivering person-centred care, our findings are
386
particularly important to understand. Person-centred care is where the care provider focuses
387
on the needs and resources of the patient and can be defined as co-creation of care between
388
the patients, their family/carers, and health professionals [61]. A review of health policy and
389
literature identified three core elements of person-centred care as patient participation and
390
involvement, the relationship between the patient and the healthcare professional and the
391
context where care is delivered [62]. Furthermore, health governance bodies and health
392
consumer advocacy groups have identified respectful health service partnership with
393
consumers, health literacy to enable effective partnership, and shared decision making as
394
essential pillars of patient-centred care [63, 64]. Our review supports the importance of these
395
aspects for the carers of people rehabilitating from stroke.
M AN U
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385
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396 Study strengths
398
Our rigorous methodology and thematic synthesis enabled us to stay faithful to the primary
399
studies’ data, providing explicit and clear links between our inferences and the text of the
400
primary studies. Further strengths of this review are the large combined sample (452 stroke
401
carers), and the internationally diverse research (10 countries), enhancing transferability of
402
our findings.
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403 404
Study limitations
405
We have not reported findings separately for the two translated articles. Data in the non-
406
English papers aligned closely with other included studies, thus we are confident that this 18
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 deviation from our protocol did not compromise credibility [5]. Despite one study excluded
408
based on minimum quality criteria, the reporting within included primary studies was
409
variable with one third of the studies meeting less than 50% of COREQ criteria. This
410
suboptimal reporting may affect the credibility and limit the confidence that can be placed in
411
our findings. Further, we acknowledge that the COREQ criteria are relatively new and not
412
universally accepted as the best way of appraising all types of qualitative studies. This
413
review, as with all systematic reviews, may be limited by publication bias which may be
414
particularly constraining for qualitative studies. Nevertheless, despite these limitations, the
415
relevance, coherence and adequacy and richness of the data supporting the findings, suggest
416
that overall, moderate confidence can be placed in many of the review findings (i.e. the
417
findings are reasonable representations of the phenomena of interest).
418
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407
Conclusions and recommendations
420
This review provides important new insights into the experiences, needs and preferences of
421
carers of stroke survivors undergoing inpatient rehabilitation, and exposes several areas for
422
improvement, and where knowledge gaps exist. Carers experienced distress caused by the
423
stroke, and by having to navigate a foreign culture and environment without adequate
424
communication or processes in place for their inclusion. The systematic consideration of
425
carers as legitimate clients, partners and expert team members in the rehabilitation process
426
could ease the distress currently reported. Deliberate efforts are needed to provide a more
427
inclusive environment and systems that can enable carers to easily access support,
428
information and training for their new roles, based on their individual needs and preferences.
429
Strategies, including health literacy interventions, should be embedded within rehabilitation
430
to facilitate carers’ (and stroke survivors) understanding of stroke and the rehabilitation
431
process so that alienation is reduced and engagement is enabled. Respectful two-way
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419
19
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 communication must acknowledge carers as experts regarding the stroke survivor as a person,
433
and include carers in shared decision making if they wish. Further research is required to
434
better understand the barriers to person-centred care for carers during the inpatient
435
rehabilitation process, and what interventions will optimize health professionals’ meaningful
436
partnership with carers during rehabilitation.
438 439
Suppliers
SC
437
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432
a. Covidence online software; www.covidence.org/
441
b. NVivo 10; QRS International Pty Ltd. http://www.qsrinternational.com/nvivo-product
M AN U
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442
444 445
References
446
1.
prevalence and case fatality in the late 20th century. Lancet Neurology, 2003. 2(1): p. 43-53. 2.
449 450
Lackland, D.T., et al., Factors influencing the decline in stroke mortality: a statement from the
American Heart Association/American Stroke Association. Stroke, 2014. 45(1): p. 315-353.
3.
451 452
AC C
448
Feigin, V.L., et al., Stroke epidemiology: a review of population-based studies of incidence,
EP
447
TE D
443
Vaartjes, I., et al., Remarkable decline in ischemic stroke mortality is not matched by changes in incidence. Stroke, 2013. 44(3): p. 591-597.
4.
Deloitte Access Economics. The economic impact of stroke in Australia. 2013 September 4th
453
2016]; Available from: https://strokefoundation.com.au/What-we-do/Research/Economic-
454
impact-of-stroke-in-Australia [A.
20
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 455
5.
**************************** (Authors’ paper)
6.
National Stroke Foundation, Walk in our shoes: stroke survivors and carers report on support
456
458
460 461
clinical guideline. 2013. 8.
462 463
Teasell, R., et al., Stroke rehabilitation: an international perspective. Topics in Stroke Rehabilitation, 2009. 16(1): p. 44-56.
9.
464 465
National Institute for Health and Care Excellence (NICE) Stroke rehabilitation in adults:
RI PT
7.
SC
459
after stroke, N.S. Foundation, Editor. 2007: Melbourne, Australia.
Pollock, A., et al., Physical rehabilitation approaches for the recovery of function and mobility following stroke. Cochrane Database of Systematic Reviews 2014(4).
10.
M AN U
457
Miller, E., et al., Comprehensive overview of nursing and interdisciplinary rehabilitation care
466
of the stroke patient. A scientific statement from the American Heart Association. Stroke,
467
2010. 41(10): p. 2402-2448. 11.
469 470
National Stroke Foundation, Clinical guidelines for stroke management. 2010: Melbourne Australia.
12.
TE D
468
Howe, T.D., B.; Worrall, L.; Hersh, D.; Ferguson, A.; Sherratt, S.; Gilbert, J., 'You needed to rehab ... families as well': family members' own goals for aphasia rehabilitation.
472
International Journal of Language & Communication Disorders, 2012. 47(5): p. 511-21. 13.
474
interpretative phenomenological analysis. Disability and Rehabilitation, 2004. 26(16): p.
475 476
Hunt, D. and J.A. Smith, The personal experience of carers of stroke survivors: an
AC C
473
EP
471
1000-1011.
14.
Jungbauer, J., K. Döll, and G. Wilz, Gender- and age-specific aspects of assistance need in
477
caregivers of stroke patients: results from a qualitative panel study [German]. Rehabilitation,
478
2008. 47(3): p. 145-149.
479
15.
******************************** (Authors’ paper)
480 21
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 16.
482 483
ENTREQ. . BMC Medical Research Methodology, 2012. 12(8): p. 181. 17.
484 485
Tong, A., et al., Enhancing transparency in reporting the synthesis of qualitative research:
Thomas, J. and A. Harden, Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 2008. 8(10): p. 45.
18.
Dawson, A., et al., Canadian best practice recommendations for stroke care, in Canadian best
RI PT
481
486
practice recommendations for stroke care, M.P. Lindsay, M. Bayley, and S. Phillips, Editors.
487
2013, Heart and Stroke Foundation and the Canadian Stroke Network: Ottawa. p. 1-95. 19.
Carroll, C., A. Booth, and M. Lloyd-Jones, Should we exclude inadequately reported studies
SC
488
from qualitative systematic reviews? An evaluation of sensitivity analyses in two case study
490
reviews. Qualitative Health research, 2012. 22: p. 1425-1434.
491
20.
M AN U
489
Lindquist, I. and K. Dahlberg, The experience of being next of kin to a person with stroke
492
[Swedish]. Nordic Journal of Nursing Research & Clinical Studies / Vård i Norden, 2002. 22(3):
493
p. 4-9.
495
carers' opinions. British Journal of Therapy and Rehabilitation, 1997. 4(2): p. 82-85. 22.
497 498
PRISMA Statement. PLoS Med, 2009. 6(7): p. e1000097. 23.
499
p. 166-174.
24.
502 503 504
Ang, S.Y., et al., A qualitative study into stroke caregivers' educational needs - Perspectives of caregivers and healthcare professionals. Proceedings of Singapore Healthcare, 2013. 22(3):
500 501
Moher D, et al., Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The
EP
496
Bailey, M. and N. Rennie, Physiotherapy support for carers od stroke patients: a survey of
TE D
21.
AC C
494
Avent, J., et al., Family information needs about aphasia. Aphasiology, 2005. 19(3-5): p. 365375.
25.
Bertilsson, A.-S., et al., Client-centred ADL intervention after stroke: Significant others' experiences. Scandinavian Journal of Occupational Therapy, 2015. 22(5): p. 377-386.
22
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 505
26.
Cameron, J., et al., Stroke family caregivers' support needs change across the care
506
continuum: a qualitative study using the timing it right framework. Disability &
507
Rehabilitation, 2013. 35(4): p. 315-324.
508
27.
Cameron, J.I., et al., Stroke survivors', caregivers', and health care professionals' perspectives on the weekend pass to facilitate transition home. Journal of Rehabilitation Medicine, 2014.
510
46(9): p. 858-63. 28.
512
Journal of Rehabilitation Research, 2000. 23(1): p. 19-29. 29.
514 515
Creasy, K.R., et al., The Impact of Interactions with Providers on Stroke Caregivers' Needs. Rehabilitation Nursing, 2013. 38(2): p. 88-98.
30.
SC
513
Clark, M.S., Patient and spouse perceptions of stroke and its rehabilitation. International
M AN U
511
RI PT
509
Danzl, M.M., et al., "Living with a ball and chain": the experience of stroke for individuals and
516
their caregivers in rural Appalachian Kentucky. Journal of Rural Health, 2013. 29(4): p. 368-
517
82. 31.
Ellis-Hill, C.R., J.; Wiles, R.; McPherson, K.; Hyndman, D.; Ashburn, A., Going home to get on
TE D
518 519
with life: patients and carers [sic] experiences of being discharged from hospital following a
520
stroke. Disability & Rehabilitation, 2009. 31(2): p. 61-72. 32.
Eng, X.W., et al., Factors affecting the ability of the stroke survivor to drive their own
EP
521
recovery outside of therapy during inpatient stroke rehabilitation. Stroke Research and
523
Treatment, 2014(626538).
524
33.
525
2014. 21(1): p. 63-74.
34.
528 529 530
Galvin, R.S., E.; Cusack, T., Family-Mediated Exercises (FAME): an exploration of participant's involvement in a novel form of exercise delivery after stroke. Topics in Stroke Rehabilitation,
526 527
AC C
522
Garrett, D. and F. Cowdell, Information needs of patients and carers following stroke. Nursing Older People, 2005. 17(6): p. 14-16.
35.
Gustafsson, L. and K. Bootle, Client and carer experience of transition home from inpatient stroke rehabilitation. Disability & Rehabilitation, 2013. 35(16): p. 1380-6.
23
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 36.
532 533
rehabilitation following stroke. Disability and Rehabilitation, 2014. 36(21): p. 1774-1782. 37.
534 535
Halle, M.-C. and G. Le Dorze, Understanding significant others' experience of aphasia and
Hewitt, G., et al., Interprofessional teamwork in stroke care: Is it visible or important to patients and carers? Journal of Interprofessional Care, 2015. 29(4): p. 331-339.
38.
Levack, W.M.M., et al., Navigating patient-centered goal setting in inpatient stroke
RI PT
531
536
rehabilitation: How clinicians control the process to meet perceived professional
537
responsibilities. Patient Education and Counseling, 2011. 85(2): p. 206-213.
539
Topics in Stroke Rehabilitation, 2011. 18(6): p. 786-797. 40.
541 542
stroke service. International Journal for Quality in Health Care, 2007. 19(2): p. 105-112. 41.
543 544
Morris, R., O. Payne, and A. Lambert, Patient, carer and staff experience of a hospital-based
M AN U
540
Lutz, B.J., et al., The Crisis of Stroke: Experiences of Patients and Their Family Caregivers.
SC
39.
Morris, R. and P. Morris, Participants' experiences of hospital-based peer support groups for stroke patients and carers. Disability & Rehabilitation, 2012. 34(4): p. 347-54.
42.
Rochette, A., et al., Ethical issues relating to the inclusion of relatives as clients in the post-
TE D
538
545
stroke rehabilitation process as perceived by patients, relatives and health professionals.
546
Patient Education & Counseling, 2014. 94(3): p. 384-9. 43.
Rochette, A., et al., Actual and ideal services in acute care and rehabilitation for relatives
EP
547
post-stroke from three perspectives: Relatives, stroke clients and health professionals.
549
Journal of Rehabilitation Medicine, 2014. 46(1): p. 16-22.
550
44.
551 552
555
Schmitz, M.A. and M. Finkelstein, Perspectives on poststroke sexual issues and rehabilitation needs. Topics in Stroke Rehabilitation, 2010. 17(3): p. 204-13.
45.
553 554
AC C
548
Secrest, J.S., How stroke survivors and primary support persons experience nurses in rehabilitation. Rehabilitation Nursing Journal, 2002. 27(5): p. 176-81.
46.
Silva-Smith, A.L., Restructuring Life: Preparing for and Beginning a New Caregiving Role. Journal of Family Nursing, 2007. 13(1): p. 99-116.
24
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 47.
557
Stroke Survivors: Does Age Matter? Topics in Stroke Rehabilitation, 2008. 15(6): p. 593-601. 48.
559
Clinical Rehabilitation, 2014. 28(8): p. 824-831.
561 562
relative. Scandinavian Journal of Caring Sciences, 2008. 22(1): p. 48-55. 50.
563 564
51.
52.
Young, M.E., et al., A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation. Disability & Rehabilitation, 2014. 36(22): p. 1892-902.
53.
569 570
Wu, C.-m., Learning to be a family caregiver for severely debilitated stroke survivors during the first year in Taiwan. 2009, University of Iowa. p. 318 p.
567 568
Wiles, R.P., H.; Buckland, S.; McLellan, L., Providing appropriate information to patients and carers following a stroke. Journal of Advanced Nursing, 1998. 28(4): p. 794-801.
565 566
Wallengren, C., F. Friberg, and K. Segesten, Like a shadow - on becoming a stroke victim's
RI PT
49.
SC
560
Tyson, S.F., et al., Service users' views of the assessment process in stroke rehabilitation.
M AN U
558
Smith, S.D., et al., Differences in the Experiences and Support Needs of Family Caregivers to
Campbell, N.C., et al., Designing and evaluating complex interventions to improve health care. BMJ, 2007: p. 334-455.
54.
TE D
556
Bakas, T. and S.C. Burgener, Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors. Topics in Stroke Rehabilitation, 2002. 9(1):
572
p. 34-45. 55.
574 575
International Journal of Stroke, 2009. 4(4): p. 285–292. 56.
576 577
580
Deloitte Access Economics, The economic value of informal care in 2015. 2015: ACT, Australia.
57.
578 579
Rigby, H., G. Gubitz, and S. Phillips, A systematic review of caregiver burden following stroke.
AC C
573
EP
571
Barry , M.J. and S. Edgman-Levitan Shared Decision Making — The Pinnacle of PatientCentered Care. New England Journal of Medicine, 2012. 366(9): p. 780-781.
58.
Nolan, M., Working with family carers: towards a partnership approach. Reviews in Clinical Gerontology, 2001. 11(1): p. 91-97.
25
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 581
59.
Brown, I., R. Renwick, and M. Nagler, The centrality of quality of life in health promotion and
582
rehabilitation, in Quality of life in health promotion and rehabilitation: conceptual
583
approaches, issues and applications, R. Renwick, I. Brown, and M. Nagler, Editors. 1996,
584
Sage: Callifornia: Thousand Oaks.
586 587
Social Theory & Health 2013. 11(1): p. 40-58. 61.
588 589
Sadler, E. and C. McKevitt, ‘Expert carers’: An emergent normative model of the caregiver.
RI PT
60.
The Health Foundation Person-centred care made simple: What everyone should know about person-centred care. 2014.
62.
SC
585
Kitson, A., et al., What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. Journal of Advanced
591
Nursing, 2013. 69(1): p. 4-15.
592
63.
M AN U
590
Australian Commission for Safety and Quality in Health Care. The National Safety and Quality goals for health care: Patient and consumer centred care. 2012 11th Nov 2016]; Available
594
from: www.safetyandquality.gov.au/our-work/patient-and-consumer-centred-care/
595
64.
596
599
Available from: https://chf.org.au/2015-2018-strategic-plan 65.
Shaw, R.L., et al., Finding qualitative research: an evaluation of search strategies. BMC
EP
598
Consumers' Health Forum of Australia. 2015-2018 Strategic Plan. 2015 22/11/2016];
Medical Research Methodology, 2004. 4(1).
AC C
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600
FIGURES LEGEND
601
Figure 1
Flow chart of search and screening process
602 603
TABLES LEGEND
604
Table 1
Characteristics of studies
605
Table 2
Analytic and descriptive themes with source documents 26
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 Online Appendix 1
Search strategy for Ovid Medline
607
Online Appendix 2
Expanded study characteristics
608
Online Appendix 3
Appraisal of comprehensive reporting
609
Online Appendix 4
Analytic and descriptive themes with source documents
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27
ACCEPTED MANUSCRIPT
Table 1 Characteristics of studies (expanded in online Appendix 2) First author
Carer
year
participants n = 452
Ang [23]
RI PT
Study aim
To find out more about healthcare professionals' and
10
caregivers’ perceptions of educational needs while the 2013
To determine what information family members need
16
M AN U
Avent [24]
SC
stroke survivor is still in hospital
during 3 phases of aphasia: acute, initial rehabilitation 2005
and chronic Bailey* [21]
To survey the views of carers of stroke patients
21
regarding the service offered by physiotherapy to both
1997
Bertilsson [25]
7
TE D
carer and patient To explore and describe if and how a client-centred ADL intervention was integrated in the everyday lives of
EP
2015
significant others of people with stroke
2013
24
AC C
Cameron [26]
Cameron [27]
15
Explore the support needs over time from the perspective of family caregivers, and from the perspective of health care professionals. To compare and contrast these perspectives. To obtain an in-depth understanding of patients’, family caregivers’, and health care professionals’ perception of
2014
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
RI PT
n = 452 Weekend Passes and its role in facilitating the transition home
To examine, in a group of stroke patients and their
46
SC
Clark [28]
spouses, their perceptions of stroke, information received 2000
Creasy [29]
M AN U
about it, its management and its rehabilitation 17
To explore caregivers’ perceptions about interactions with providers in rehabilitation, and how these
2013
experiences affected caregiver preparation To describe the experience of stroke for survivors and
12
TE D
Danzl [30]
their caregivers in rural Appalachian Kentucky
2013 Ellis-Hill [31]
13
To develop the understanding of what constitutes a
EP
‘good’ or ‘poor’ experience in relation to the transition
2009
AC C
from hospital to home following a stroke
Eng [32] 2014
Galvin [33]
6
15
To explore factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient rehabilitation To explore the impact of family involvement in exercise delivery after stroke from the perspective of the
2014
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
RI PT
n = 452 individual with stroke and his or her family member Garrett [34]
To discover the perceived information needs of patients
16
information is given
To enhance our understanding of the transition
5
M AN U
Gustafsson [35]
SC
and their carers about when, by whom and what format 2005
experience for clients with stroke and their carers during 2013
discharge and the first month at home Halle [36]
To understand significant others’ experience of aphasia
12
TE D
rehabilitation within the context of post-stroke 2014
rehabilitation
Hewitt [37]
4
To explore patient and carer perceptions of good and
2012
48
AC C
Howe [12]
EP
poor teamwork and its impact on experiences of care
2015
Hunt [13]
4
To identify the rehabilitation goals that family members of individuals with aphasia have for themselves
To explore the experiences of members of families who are involved as carers of stroke survivors, in the early
2004 caring period before patients return home
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
Jungbauer [14]
RI PT
n = 452 To investigate the need for professional assistance in
10
carers of stroke patients who do not require a therapeutic 2008
group intervention, and how this need for assistance is
To investigate, by observation and interview, the
7
M AN U
Levack [38]
SC
changing in the course of rehabilitation
application of goal setting during a series of cases of 2011
inpatient stroke rehabilitation Lindquist [20]
To describe how wives and daughters, who are family
5
members of stroke survivors, experience their specific 2002
Lutz [39]
15
TE D
situation
To explore the needs of stroke patients and their family caregivers as they transition through the stroke care
EP
2011
continuum from acute care to inpatient rehabilitation to
AC C
home
Morris [40] 2007
Morris [41]
5
3
To study the experiences of patients, carers and staff throughout a hospital stroke care pathway To examine stroke patients’, carers’ and volunteer supporters’ experiences of peer support groups during
2012 hospital rehabilitation
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
Rochette [42]
RI PT
n = 452 To document the ethical issues regarding the systematic
30
inclusion of relatives as clients in the post-stroke 2014a
Rochette [43]
SC
rehabilitation process
To document the gap between actual and desired ideal
a/a
services for relatives post-stroke from 3 perspectives:
M AN U
2014b
relatives, stroke clients and health professionals Schmitz [44]
To study the perspectives and experiences of stroke
14
survivors and their partners regarding sexual issues and 2010
Secrest [45]
7
TE D
perceived rehabilitation needs
To explore experiences with rehabilitation nursing care of stroke survivors and their primary support persons to
2002
EP
gain insight into their perceptions of nurses' role in promoting quality of life
2007
12
AC C
Silva-Smith [46]
Smith [47]
9
To describe the process associated with preparing for and beginning a new caregiving role following a family member's stroke To learn about family care-givers' experiences and support needs during the rehabilitation phase to inform
2008 program development (especially interested on the
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
RI PT
n = 452 influence of age) Tyson [48]
To investigate service users (stroke survivors and
6
assessment process
To illuminate the meaning of going from being just a
16
M AN U
Wallengren [49]
SC
caregivers) experiences and views of the rehabilitation 2014
relative to gradually becoming a relative to a stroke 2008
victim from the time of the stroke event and the first weeks on
To examine the information needs of patients and
12
TE D
Wiles [50]
caregivers at various stages following stroke
1998 Wu [51]
17
To explore and describe the situational experience of
EP
Taiwanese family members who were learning how to
2014
AC C
become a caregiver for a stroke survivor during the first
Young [52] 2014
14
year after discharge To delineate critical assessment domains identified by a subset of spousal stroke caregivers
ACCEPTED MANUSCRIPT
Table 2 Analytic and descriptive themes with source documents Analytic themes
Descriptive themes
Source Documents
[12-14, 20, 23-27, 29, 30, 33, 36, 39-42,
SC
Overwhelmed with emotions
M AN U
Vulnerability of SS is confronting
45-47, 49, 51, 52] [13, 24, 36, 42, 45, 49] [13, 29, 47, 49, 51]
Feeling bewildered and shocked
[12, 13, 23, 24, 27, 49]
Experiencing grief and loss
[39, 49, 52]
Experiencing stress and physical symptoms
[12, 13, 23, 36, 49]
EP
TE D
Coping with uncertainty
Feeling distressed, fearful and anxious
AC C
1.
RI PT
No.
[13, 20, 24, 26, 27, 40, 49]
Feeling emotionally drained and exhausted
[26, 27, 39]
Managing multiple demands and new
[12, 13, 24, 26, 30, 33, 35, 36, 39, 46,
responsibilities
51]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
RI PT
No. [13, 36, 49]
Staying positive and hopeful
[12, 20, 23, 24, 36, 39, 47, 49]
SC
Responsibility creates resentment and guilt
Recognition as a stakeholder in recovery
TE D
Carers engaging with therapy and care
EP
Making sacrifices and prioritising the carer role Understanding the rationale for rehabilitation
[12-14, 23-27, 41, 47, 52] [12, 13, 20, 23-26, 29, 31-36, 38, 39, 41-43, 45, 47-52] [12, 13, 20, 25, 26, 32, 33, 36, 40, 42, 43, 51] [13, 29, 36, 39, 43, 47, 49, 52] [24, 25, 29, 31-33, 35, 36, 39, 51]
therapy
AC C
2.
M AN U
Support from others relieves distress
Carers know the SS
[12, 25, 29, 33, 36, 40, 45]
Managing the emotions of SS
[13, 23, 24, 29, 34-36, 40, 45]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
RI PT
No. [12, 13, 23, 24, 29, 36, 39, 40, 48, 50,
Knowing expected recovery
Getting updated on progress
[23, 26, 36, 40, 43, 48] [29, 34, 38, 40, 50]
Being opportunistic and observant
[29, 39, 49]
M AN U
Requesting individualised care and information
TE D
Desire to be heard and informed
[12-14, 20, 23-37, 40-52] [13, 25-27, 29, 31, 34, 37, 43, 49]
Disempowered through lack of information
[12, 20, 24, 30-32, 34, 36, 40, 48, 50,
EP
Inclusion promotes confidence
AC C
3.
SC
51]
51]
Learning the consequences of stroke
[23, 27-29, 34, 48, 50]
Needing a range of information topics and formats
[12-14, 20, 23, 24, 26, 28, 29, 31, 34-36, 43, 44, 47, 48, 50-52]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
Information is a form of support
RI PT
No.
SC
Needing different information at different times
44, 47, 50]
Wanting a co-ordinated approach to information
[12, 24, 26, 28-30, 34, 40, 42, 43, 48,
delivery
50]
TE D
M AN U
[29, 40, 42, 43, 48]
EP AC C
Being resourceful and proactive
Persisting for action and outcomes
[12, 14, 23, 24, 26, 27, 29, 30, 34, 43,
Having to run after staff for information
Being ignored or undervalued
4.
[28-31, 40, 47, 48]
[12, 20, 23, 29, 36, 42, 43, 46, 48, 49, 51] [23, 28, 29, 41, 43, 46, 47, 49, 51]
[13, 28, 29, 35, 36, 40, 42, 43, 45, 4851]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
RI PT
No. Staff were always busy
[29, 43, 48, 51]
SC
Annoying and upsetting staff to get results
M AN U
Ignoring carers compromises outcomes
Being protective of SS
[42, 45, 49]
Concerns about care and insufficient therapy
[13, 28, 29, 35, 40, 42, 45, 49, 50]
TE D
[13, 45]
Wanting personalised dialogue and information
EP
Being legitimate clients
[42, 43, 45, 51]
Observing demeaning conduct
AC C
5.
[20, 29, 36, 42, 43, 45]
[12-14, 20, 23-26, 29, 31, 33-44, 47-52] [14, 20, 23, 26, 29, 38, 39, 42, 47, 48, 50, 51]
Staff focusing only on the SS
[12, 20, 25, 26, 36, 37, 42, 43, 49, 52]
Addressing intimacy following stroke
[34, 44]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
No-one prepares the carer
RI PT
No. [23, 24, 29, 31, 50]
SC
Needing a family centred approach
Navigating an alien culture and
TE D
environment
41, 42, 47, 49] [12, 23, 26, 34, 37, 40, 42, 47, 52] [12-14, 23, 24, 26-40, 42, 43, 45-49, 51, 52] [12, 32, 42, 45, 48, 51]
Dependent/ reliant on staff
[23, 28, 29, 45, 46, 48]
EP
Adversarial relationships with staff
Health literacy matters
AC C
6.
M AN U
Carers not systematically involved
[12, 13, 20, 29, 31, 33, 35, 36, 38, 39,
[12, 23, 29, 34, 36, 37, 42, 43, 47, 48, 51]
Carers don’t know what they don’t know
[12, 27, 29-31, 34, 43, 51]
Communication eases alienation
[14, 24, 30, 35, 36, 40, 42, 48, 51]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
‘The system’ as a barrier to good care
RI PT
No. [12, 27-29, 32, 36, 38-40, 42, 47, 48,
Staff not working as a team
SC
51]
TE D
Managing the transition home
EP
Preparedness for discharge
Looking to the future
AC C
7.
M AN U
Staff providing support and encouragement
Strategies for managing stress
[37, 40, 42, 48] [12-14, 26-29, 31, 33, 36, 40, 42, 47, 49, 52] [12, 13, 20, 23-29, 31, 33-36, 39, 43, 44, 46, 47, 49-52] [12, 23, 26, 27, 29, 31, 33, 35, 36, 39, 46, 51, 52] [12, 28, 31, 35, 39, 46, 47, 49] [12, 13, 23, 25, 36, 39, 52]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
A changed relationship and life roles
RI PT
No. [12, 13, 20, 29, 34, 36, 44, 46, 47, 49,
SC
50, 52] [27, 35, 52]
Sourcing support for and from home
[12, 23-27, 29, 31, 33-35, 39, 43, 49-52]
AC C
EP
TE D
M AN U
Home and hospital are different
Medline (n=176)
CINAHL (n=700)
PsycINFO (n=50)
Additional records identified through other sources
(n=3532)
(n= 0)
SC
Records identified through database searching
Records after duplicates removed
M AN U
(n=2852)
Records screened
EP
TE D
Full-text documents assessed for eligibility (n=93)
AC C
Eligibility
(n=2852)
Included
Web of Science (n= 1375)
RI PT
Embase (n=1231)
Screening
Identification
ACCEPTED MANUSCRIPT
Records excluded (n=2759)
Full-text documents excluded with reasons (n=59)
• • • • • •
Wrong study design (n=9) Not inpatient rehab setting (n=27) Not carer perspective (n=4) Conference abstract (17) Full text unavailable (n=1) Core quality criteria not met (n=1)
Included in qualitative synthesis (n=34 documents (33 studies)
Figure 1 Flow chart of search and screening process (Moher et al 2009) [22]
ACCEPTED MANUSCRIPT
Online Appendix 1: Search strategy for Ovid Medline SPICE:
Setting: inpatient stroke rehabilitation facilities; Perspective: carers of stroke
survivors; Intervention: interventions for stroke survivors and/or their carers; Comparison: n/a;
RI PT
Evaluation: the experiences, needs and preferences of carers. Our search reflected the approach recommended by Shaw and colleagues [65], where the search used thesaurus terms, free-text terms and broad-based terms. Medline
SC
Search term Perspective
exp Stroke/
2.
exp Family/ or famil*.mp.
3.
hospital volunteers.mp. or Hospital Volunteers/
4.
visitors to patients.mp. or exp Visitors to Patients/
5.
Carer*.mp.
6.
caregivers.mp. or exp Caregivers/
7.
exp Friends/ or friend$1.mp
8.
adult children.mp. or exp Adult Children/
9.
siblings.mp. or exp Siblings/
10.
spouse.mp. or exp Spouses/
11.
(partner$1 or husband$1 or wi$3 or defacto).mp.
AC C
EP
TE D
M AN U
1.
Hits
12.
2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11
13.
12 AND 1
Setting and Intervention 14.
exp Rehabilitation Centers/ or exp Rehabilitation/ or rehabilitat*.mp. or exp Rehabilitation Nursing/
15.
(hospitali* or in?patient$1).mp.
16.
14 or 15
3884
ACCEPTED MANUSCRIPT
17.
13 AND 16
1041
Evaluation Qualitative Research/
19.
Cohort Studies/
20.
Observational Study/
21.
Focus Groups/
22.
Interview, Psychological/ or Interview/
23.
((semi-structured or semistructured or unstructured or informal or in-depth or indepth or face-to-face or structure or guide) adj3 (interview* or discussion* or question?aire*)).mp.
24.
(ethnograph* or fieldwork or 'field work' or 'key informant').mp.
25
18 or 19 or 20 or 21 or 22 or 23 or 24
320390
26
17 AND 25
176
AC C
EP
TE D
M AN U
SC
RI PT
18.
ACCEPTED MANUSCRIPT
Online Appendix 2: Expanded study characteristics
[carers of SS]
Ang [23] 2013
10
Singapore
[Adult children, spouses]
Avent [24]
16
2005
Methodological approach; theoretical framework
Health care professionals
Qualitative descriptive
Semi-structured interviews
nil
Qualitative
Focus groups
nil
unclear
nil
Grounded theory
[adult children, spouses, parent]
USA
Bertilsson [25] 2015
[Spouses, adult daughters] 7 [spouses]
Sweden
2013
24 [Adult children, spouses]
Canada Cameron [27] 2014
15 [Adult children, spouses, grandparent, friend]
Health care professionals
Qualitative; ‘timing it right’ framework
AC C
Cameron [26]
TE D
UK
21
EP
Bailey* [21] 1997
Data collection
Stroke survivors, health care professionals
Qualitative descriptive
Time of data collection
RI PT
[language]
Other participants
Just prior or after hospital discharge
SC
Participants n = 452
Aim
To find out more about healthcare professionals' and caregivers’ perceptions of educational needs while the stroke survivor is still in hospital
1 – 13 years post stroke
To determine what information family members need during 3 phases of aphasia: acute, initial rehabilitation and chronic
Questionnaire
unclear
To survey the views of carers of stroke patients regarding the service offered by physiotherapy to both carer and patient
Semi-structured interviews
At start and end of rehabilitation, 6 and 12mths follow-up
To explore and describe if and how a clientcentred ADL intervention was integrated in the everyday lives of significant others of people with stroke
Structured interviews
1mth to >1yr post-stroke
Explore the support needs over time from the perspective of family caregivers, and from the perspective of health care professionals. To compare and contrast these perspectives.
Semi-structured interviews face to face, follow-up interviews by phone
During IP rehabilitation, some follow-ups 4wks post discharge
To obtain an in-depth understanding of patients’, family caregivers’, and health care professionals’ perception of Weekend Passes and its role in facilitating the transition home
M AN U
First author, year, country
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
Other participants
Methodological approach; theoretical framework
Data collection
Canada
2000
46
Stroke survivors
Qualitative; ethnographic strategy
5 structured interviews
Stroke survivors
Grounded theory; symbolic interactionalism
Stroke survivors
Qualitative descriptive
Stroke survivors
Qualitative
[spouses]
To examine, in a group of stroke patients and their spouses, their perceptions of stroke, information received about it, its management and its rehabilitation
2 interviews, open ended questions
During inpatient rehabilitation, and 4mths postdischarge
To explore caregivers’ perceptions about interactions with providers in rehabilitation, and how these experiences affected caregiver preparation
Semi-structured interviews
1- 14yrs post stroke
To describe the experience of stroke for survivors and their caregivers in rural Appalachian Kentucky
Semi-structured interviews
Within 2wks of rehabilitation discharge
To develop the understanding of what constitutes a ‘good’ or ‘poor’ experience in relation to the transition from hospital to home following a stroke
Qualitative
Semi-structured interviews
During rehabilitation admission
To explore factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient rehabilitation
Grounded theory; phenomenological framework
Semi-structured interviews
At the end of the rehabilitation intervention
To explore the impact of family involvement in exercise delivery after stroke from the perspective of the individual with stroke and his or her family member
2013
17 [Adult children, spouses]
2013
12 [Adult children, spouses]
USA Ellis-Hill [31] 2009
13 [Adult children, spouses]
UK
2014
6 [main carers]
Australia Galvin [33] 2014
15 [Adult children, spouses]
Stroke survivors, health care professionals
AC C
Eng [32]
EP
Danzl [30]
TE D
USA
Stroke survivors
M AN U
Australia Creasy [29]
Aim
Acute inpatient, rehabilitation inpatient, and first 12mths home
SC
Clark [28]
Time of data collection
RI PT
First author, year, country
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
Other participants
Methodological approach; theoretical framework
Data collection
Ireland
2005
16
Modified grounded theory
Open ended question interviews
Stroke survivors
Qualitative descriptive
Semi-structured interviews
1 month postdischarge
To enhance our understanding of the transition experience for clients with stroke and their carers during discharge and the first month at home
nil
Grounded theory
Semi-structured interviews
Within 3mths of rehabilitation discharge
To understand significant others’ experience of aphasia rehabilitation within the context of post-stroke rehabilitation
Stroke survivors, carers not involved in IP rehabilitation
Critical incident technique; teamwork framework
Semi-structured interviews repeated 2-3 times
Discharge from acute, during inpatient rehabilitation, 3mths after being home
To explore patient and carer perceptions of good and poor teamwork and its impact on experiences of care
[relationships unknown]
2013
5 [Adult children, spouses, friend]
Halle [36] 2014
12 [Spouses, friends, mothers]
2015
4 [Adult children, spouses]
UK
Howe [12]
48
Australia
[Adult children spouses, siblings, other family]
Hunt [13]
4
2012
AC C
Hewitt [37]
EP
Canada
TE D
Australia
M AN U
UK Gustafsson [35]
2, 20 or 90 days post-stroke
Aim
Stroke survivors
SC
Garrett [34]
Time of data collection
RI PT
First author, year, country
To discover the perceived information needs of patients and their carers about when, by whom and what format information is given
nil
Qualitative descriptive; constructivist paradigm
Semi-structured interviews
3 - 195mths post-stroke
To identify the rehabilitation goals that family members of individuals with aphasia have for themselves
nil
Interpretive phenomenological
Semi-structured
During rehabilitation
To explore the experiences of members of families who are involved as carers of stroke
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
2004
Other participants
[Adult children, spouses]
Methodological approach; theoretical framework
Data collection
analysis; phenomenology
interviews
survivors, in the early caring period before patients return home
nil
Grounded theory
In-depth interviews 2 times
1st interview during rehabilitation admission, 2nd interview 1 year after
To investigate the need for professional assistance in carers of stroke patients who do not require a therapeutic group intervention, and how this need for assistance is changing in the course of rehabilitation
Stroke survivors, health care professionals
Constructivist grounded theory
nil
Lifeworld phenomenological approach; phenomenology
[Spouses]
Semi-structured interviews
During rehabilitation admission
To investigate, by observation and interview, the application of goal setting during a series of cases of inpatient stroke rehabilitation
Semi-structured interviews
During rehabilitation admission
To describe how wives and daughters, who are family members of stroke survivors, experience their specific situation
M AN U
Germany
[Adult children, spouses]
New Zealand Lindquist [20] 2002
5 [spouses, adult daughter]
EP
2011
7
Sweden
2011
15 [Adult children, spouses, parent]
USA Morris [40]
5
AC C
[Swedish] Lutz [39]
TE D
[German] Levack [38]
SC
2008
10
Aim
admission
UK Jungbauer [14]
Time of data collection
RI PT
First author, year, country
Stroke survivors, case managers
Grounded theory; symbolic interactionism
2 semi-structured interviews
1st interview near inpatient discharge, 2nd at 6mths postdischarge
To explore the needs of stroke patients and their family caregivers as they transition through the stroke care continuum from acute care to inpatient rehabilitation to home
Stroke survivors,
Qualitative
Focus groups
4 -18mths post
To study the experiences of patients, carers and staff throughout a hospital stroke care
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
2007
[relationships unknown]
Other participants
Methodological approach; theoretical framework
Data collection
health care professionals
pathway
Qualitative
During rehabilitation admission
To examine stroke patients’, carers’ and volunteer supporters’ experiences of peer support groups during hospital rehabilitation
Stroke survivors, health care professionals
Qualitative; phenomenological orientation
a/a
a/a
a/a
14
Stroke survivors
[spouse, siblings]
Canada Rochette [43]
[Adult children, spouses, siblings, other family, friends]
2014b
Schmitz [44] 2010
[Spouses]
USA Secrest [45] 2002 USA
7 [Adult children, spouses]
Qualitative
AC C
Canada
TE D
2014a
30
EP
Rochette [42]
Interviews (n=25), Focus groups (n=5)
Interviews during acute& rehabilitation admission, focus group 4-6wks after discharge
To document the ethical issues regarding the systematic inclusion of relatives as clients in the post-stroke rehabilitation process
a/a
a/a
To document the gap between actual and desired ideal services for relatives poststroke from 3 perspectives: relatives, stroke clients and health professionals
Semi-structured interviews
At least 6mths post stroke
To study the perspectives and experiences of stroke survivors and their partners regarding sexual issues and perceived rehabilitation needs
Semi-structured interviews
Time since stroke unclear
To explore experiences with rehabilitation nursing care of stroke survivors and their primary support persons to gain insight into their perceptions of nurses' role in promoting quality of life
M AN U
UK
Stroke survivors
Semi-structured interviews, questionnaires
SC
2012
Stroke survivors, peer supporters
3
Qualitative; existential phenomenological orientation
Aim
stroke
UK Morris [41]
Time of data collection
RI PT
First author, year, country
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
Silva-Smith [46]
12
Smith [47] 2008
nil
Grounded theory
2 semi-structured interviews
nil
Qualitative
Semi-structured interviews
Stroke survivors
Qualitative
nil
Phenomenological hermeneutic methodology
[Adult children, spouses, sibling, parent] 9 [Adult children, spouses, sibling]
Canada Tyson [48] 2014
6 [Spouses, parent]
Wiles [50] 1998
12 [Adult children, spouses]
UK
Wu [51] 2014 [thesis]
17 [Adult children, spouses, other
Stroke survivors
EP
Sweden
[Adult children, spouses, other family, friend]
Grounded theory
AC C
2008
16
TE D
UK Wallengren [49]
Data collection
Stroke survivors
Qualitative descriptive
Time of data collection
1st interview before discharge, 2nd 4wks post discharge
SC
USA
Methodological approach; theoretical framework
Aim
To describe the process associated with preparing for and beginning a new caregiving role following a family member's stroke
Within 6mths of stroke
To learn about family care-givers' experiences and support needs during the rehabilitation phase to inform program development (especially interested on the influence of age)
Focus groups
Within 1yr of rehabilitation discharge
To investigate service users (stroke survivors and caregivers) experiences and views of the rehabilitation assessment process
Open ended question interviews
During stroke unit admission
To illuminate the meaning of going from being just a relative to gradually becoming a relative to a stroke victim from the time of the stroke event and the first weeks on.
Semi-structured interviews
During hospitalization, or 1mth postdischarge, or up to 1 year postdischarge
To examine the information needs of patients and caregivers at various stages following stroke
2 semi-structured interviews, plus validation phone
During the first year post-stroke
To explore and describe the situational experience of Taiwanese family members who were learning how to become a caregiver for a stroke survivor during the
M AN U
2007
Other participants
RI PT
First author, year, country
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
Taiwan Young [52]
Other participants
Methodological approach; theoretical framework
family] 14
Data collection
Time of data collection
RI PT
First author, year, country
interviews (n=4) nil
Grounded theory
1st interview inpatient rehabilitation discharge, 2nd 3 6mths postdischarge
SC
2014
2 semi-structured interviews
Interviews were conducted face-to-face unless otherwise stated
AC C
EP
TE D
*Bailey & Rennie 1997 excluded based on quality
M AN U
USA
Aim
first year after discharge To delineate critical assessment domains identified by a subset of spousal stroke caregivers
ACCEPTED MANUSCRIPT
Online Appendix 3: Appraisal of comprehensive reporting COREQ (Tong et al 2007)
Core quality criteria (Carroll et al 2004) Domain 1
Domain 2
Domain 3
(8 items)
(15 items)
(9 items)
Researcher team & reflexivity
Study design
Analysis and findings
Ang [23] 2013
4
1
9
Avent [24] 2005
3
1
6
Bailey [21] 1997
1 [study excluded]
Bertilsson [25] 2015
4
2
11
Cameron et al. [26] 2013
4
1
Cameron [27] 2014
3
2
Clark [28] 2000
2
0
Creasy .[29] 2013
3
Danzl [30] 2013 Eng [32]
SC
Inclusion score > 2/4
5
M AN U
First author/ year
RI PT
Scoring: 1 point for each reporting criteria met Total (32)
15 12
15
18
9
8
18
8
7
17
6
2
8
4
10
7
21
3
4
12
7
23
4
4
10
7
21
AC C
EP
TE D
5
ACCEPTED MANUSCRIPT
2014 3
10
7
Galvin [33] 2014
4
7
9
6
Garrett [34] 2005
4
5
7
0
Gustafsson [35] 2013
4
3
7
Halle [36] 2014
4
6
11
Hewitt [37] 2015
4
3
9
Howe [12] 2012
4
2
9
Hunt [13] 2004
4
2
Jungbauer [14]2008
3
0
Levack [38] 2011
4
3
Lindquist [20]2002
4
Lutz [39] 2011
4
Morris [40] 2007
3
20
RI PT
4
SC
Ellis-Hill [31] 2009
22 12 18
7
24
6
18
5
16
6
4
12
5
3
8
9
5
17
3
9
4
16
0
7
7
14
4
7
4
15
AC C
EP
TE D
M AN U
8
ACCEPTED MANUSCRIPT
4
0
5
5
10
Rochette .[42] 2014a
4
4
9
7
20
Rochette [43] 2014b
4
2
6
4
Schmitz [44] 2010
4
4
9
6
Secrest [45] 2002
4
5
9
Silva-Smith [46] 2007
4
3
8
Smith et al [47] 2008
4
5
11
Tyson [48] 2014
3
5
8
Wallengren [49] 2008
3
5
Wiles [50] 1998
4
4
Wu [51] 2009
4
Young [52] 2014
4
SC M AN U
3
12 19 17
6
17
8
24
7
20
9
6
20
7
3
TE D EP
AC C
RI PT
Morris [41] 2012
14
5
12
8
25
4
13
8
25
ACCEPTED MANUSCRIPT
Online Appendix 4: Themes and illustrative quotes Illustrative quotes
RI PT
Overwhelmed by emotions
“The relatives appeared to be reminded of the vulnerability of life in a distressing way. The previously familiar life situation had become strange and uncertain.” (Wallengren [49] 2008)
Coping with uncertainty
“Uncertainties and doubts emerged as participants described their experiences. There were a number of unanswered questions running through the interview.” (Hunt [13] 2004)
Feeling bewildered and shocked
“We’re still very shocked…we’re trying but we’re not coping well…our family is going haywire.” (Ang [23] 2003)
Experiencing grief and loss
“A comprehensive caregiver assessment should begin by using a crisis intervention approach to discover the nature of the event and its meaning to the caregiver, as well as the adjustment phase of the caregiver. The grief response can be strong.” (Young [52] 2014)
Experiencing stress and physical symptoms
“I myself feel pain and discomfort: The relatives themselves described [their] own physical symptoms as a result of the situation, if only for a short period of time. Their body became unfamiliar, which was uncomfortable. Symptoms [such] as nausea, tiredness, restlessness, palpitations and constipation were described. One relative had suffered from increased tinnitus.” (Wallengren [49] 2008)
Feeling distressed, fearful and anxious
“The essence of the phenomenon of being next of kin to a person who has suffered a stroke is identified as experiencing a profoundly altered way of life, where existential doubts and anxiety concerning both how one’s own as well as the sick person’s current situation characterises daily life.” (Lindquist [20] 2002)
Feeling emotionally drained and exhausted
“Being constantly vigilant and bearing sole responsibility for patient safety often left them feeling emotionally drained.” (Cameron [26] 2013)
Managing multiple demands and new responsibilities
“Elements that seemed to trigger some participants’ recognition of their personal and relational needs were experiencing post-stroke significant physical or psychological problems. For example, one participant admitted that the heart problems he/she had were probably a consequence of increased responsibilities towards his/ her family member/ friend.” (Halle [36] 2014)
Responsibility creating resentment and guilt Staying positive and hopeful
TE D
M AN U
SC
Vulnerability of SS confronting
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Themes
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No.
“Carers can become resentful which in turn leads to feeling: ‘really guilty because you’ve got a good mother and suddenly you feel very guilty because you resent the fact that one’s own needs have to be sacrificed (Rachel).” (Hunt [13] 2004)
“Older carers … focused on keeping a positive outlook and looking on the bright side.” (Smith [47] 2008)
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Themes
Recognition as a stakeholder in recovery
“Oh yeah, I’ve been with her for a walk everyday and I’ll definitely continue with that. [Family Member 03].” (Galvin [33] 2014)
Making sacrifices and prioritising the carer role
“One caregiver stated bluntly, ‘I’ve gotten hurt. I’ve hurt my knee... I’ve hurt my back. I’ve had a cortisone shot in my back’. She also stated, ‘I will do this until the day that we finally both crash to the floor or I break a hip or he breaks a rib. Then we will both end up in a nursing home together’ [Carer 14].” (Young [52] 2014)
Understanding the rationale for rehabilitation therapy
“Knowing what to do and why: Carers raised a lack of knowledge as a key hindrance to stroke survivors driving their own recovery outside of therapy. Not knowing ‘what they could be doing themselves’ outside of therapy and the ‘ambiguous’ limits and guidelines unaddressed by therapy related clinical staff of whether they should ‘push some more’ were viewed as particularly limiting.” (Eng [32] 2014)
Carers know the SS
“A few caregivers discussed how providers engaged them as experts in patients’ normal/baseline status, and how the information they provided served to assist providers in care.” (Creasy [29] 2013)
Managing the emotions of SS
“A few caregivers mentioned that they would like to know how to pacify and motivate the stroke survivor as well as how to manage his/her expectations for independence.” (Ang [23] 2013)
Knowing expected recovery
“Because families and patients often arrived at the IRF [inpatient rehabilitation facility] with specific goals and timelines for recovery that did not always coincide with that of the healthcare team, it was important for providers to explain the rationale for treatment and discharge criteria as early as possible. When this information was not provided or understood, both patients and families became frustrated, confused, or even hesitant to continue with treatment.” (Creasy [29] 2013).
Getting updated on progress
Requesting individualised care
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Carers engaging with therapy and care
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2.
“When I first came to the clinic, I was scared. The therapist gave me the number of one of the other spouses. Talking to someone helps you, your kids and your family know what happened…the best thing that always happened was talking to someone who’s done it” (Avent [24] 2005)
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Support from others relieves distress
Illustrative quotes
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No.
“Another difference between acute care and rehabilitation was the opportunity for relatives to attend a team meeting, which was more frequent in rehabilitation than in acute care: ‘… they meet to review his case, how things are progressing, then they tell us about it, they give us a report each time’ [Relative 18].” (Rochette [43] 2014) (actual versus ideal) “The carer group believed that patients’ care was often too standardized and not delivered in a way that met their
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Illustrative quotes individual needs.” (Morris [40] 2007).
Being opportunistic and observant
“Others suffered from not being adequately informed about how seriously afflicted the stroke victim was. The uncertainty drove them to literally examine the stroke victim’s functions. If the stroke victim exhibited stability or progress, the hope for a future life increased. Some watched, observed and assessed the seriousness of the situation based on the caregivers’ [staff] behaviour.” (Wallengren [49] 2008)
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and information
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Desire to be heard and informed
“Perceived impacts that were reported largely concerned feelings of confidence, reassurance and safety when communication was perceived to be good and stress, annoyance and anxiety when it was not.” (Hewitt [37] 2015)
Disempowered through lack of information
“This state of ‘not knowing’ was very distressing for people as can be seen in the follow quote from the wife of Mr Cox…She had been trying to find out when physiotherapy would take place: ‘Cos I said, you know, ‘it’s been over a week now’ and I feel it’s really bad that he’s had nothing, professionally’ [13 Carer].” (Ellis-Hill [31] 2009)
Learning the consequences of stroke
“The physical consequences of stroke, in particular the specific impairments and disabilities caused by stroke, were an enduring theme. There was little early appreciation of social and psychological consequences of stroke, such as cognitive problems, depression, and loss of confidence. These problems were increasingly recognized with time, particularly by spouses.” (Clark [28] 2000)
Needing a range of information topics and formats
“Participants wanted information about a variety of topics such as aphasia, stroke and the services available. They wanted information to be available in a variety of formats and to be offered to them systematically.” (Howe [12] 2012)
Information is a form of support
“Participants described the need for clear education and communication from providers during the acute care phase. Caregivers that were informed each step of the way perceived providers as caring.” (Danzl [30] 2013)
Needing different information at different times
“The type of information needed also changed over time. At the time of the acute stroke event, needs largely focused on diagnosis and treatment. After the patients’ medical condition stabilized, information needs became more diverse and related to recovery and rehabilitation. During the preparation and implementation phases, needs were largest and most diverse as they related to long-term treatment goals, providing care, negotiating community care, secondary prevention, and navigating the health care system. During the adaptation phase, needs focused mainly on avoiding future strokes and enduring care needs.” (Cameron [26] 2013)
Having to run after staff for information
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Inclusion promotes confidence
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Themes
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No.
“Information seeking on the part of relatives was perceived as being the norm: ‘I tell you, it’s the same everywhere. Here [in rehabilitation] or in acute care, it’s just the same thing. If you want information, you have to run after it
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No.
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Illustrative quotes yourself.’ (Relative 23T2).” (Rochette [42] 2014) (ethical issues)
Being ignored or undervalued
“Despite constantly sitting by the side of the stroke victim and expressed need for support from the caregivers, the relatives felt invisible. They described feelings of alienation and reduced subjectivity, when only being paid limited attention. There were also feelings of invisibility and insignificance in interactions and contacts with caregivers. They expressed that caregivers did their job without any interest in or commitment to them.” (Wallengren [49] 2008)
Being resourceful and proactive
“Although participants expected professional staff to teach them what they needed to know, the information was not always forthcoming. More assertive participants asked for information. Other participants waited and, in the post discharge interview, described how they managed without it or sought out other sources for the information”. (SilvaSmith [46] 2007)
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“It is suggested that the lack of clear structure for imparting information may lead to missed opportunities. This situation could be minimised by adding clearly defined, timed prompts to stroke care pathways that would guide healthcare workers to provide the required information in suitable formats adapted to individual need”. (Garrett [34] 2005)
Persisting for action and outcomes
“Providers were ‘too busy’ or just in it ‘for the job – ‘The technical side works…The personal side does not work’ [Carer 12]”. (Creasy [29] 2013)
Annoying and upsetting staff to get results
“When they take initiative to communicate themselves, they are concerned that they will be perceived as nagging and difficult family members.” (Lindquist [20]2002)
Ignoring carers compromises outcomes
“He noted that ‘they were so used to people corning in bitching and complaining and grousing about the way their family member was being treated, they didn’t pay any attention to it or notice what you said’”. (Secrest [45]2002)
Observing demeaning conduct
“As a nurse, by profession, she allegedly witnessed many untoward sequalae from the nurses’ poor decisions. She said she and her mother needed ‘to be vigilant’”. (Secrest [45] 2002)
Being protective of SS
Concerns about care and insufficient therapy
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Staff were always busy
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4.
Wanting a co-ordinated approach to information delivery
“When a relative was present, it was perceived as a protective factor for the stroke-client ‘And if I’d not been there she wouldn’t have received anything for the three weeks she was there [in acute care], and so in a three-month period, we would have lost three weeks [of intensive rehabilitation]’ (Relative 7T1).” (Rochette [42] 2014) (ethical issues)
“They [patient notes] don’t get read through, [the patient] had notes of how he should be positioned in bed, the physio and OT spent a long time doing it, and I know the people that put him to bed didn’t look at it and I just
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No.
Themes
Illustrative quotes thought ‘what a waste of time’”. (Morris [40] 2007)
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“Emotional support in the inpatient rehabilitation phase was desired mostly by young female spouses. They wished for a receptive, personal and trustful contact with the care giver as well as relieving and encouraging talks.” (Jungbauer [14] 2008)
Staff focusing only on the SS
“A few participants had tried to bring up some of their personal needs with a rehabilitation professional, but they got responses that demonstrated and reinforced that rehabilitation was not for them” (Halle [36] 2014)
Addressing intimacy following stroke
“A female partner echoed a common belief that a lack of education or experience may account for the perception that rehabilitation professionals are uncomfortable talking about sexual adjustment with their patients: ‘Because they haven’t been educated themselves or [had] enough education or enough being open. They might be a little inhibited themselves’”. (Schmitz [44] 2010)
No-one prepares the carer
“The family members discussed the overwhelming nature of this experience and the lack of prior knowledge about stroke and aphasia. According to one participant, ‘you're so overwhelmed you don't know what you need’ and ‘It is hard to get [IwA] back like before and no one prepares you for what you go through and how difficult it is to get [IwA] communicating again’.” (Avent [24] 2005)
Needing a family centred approach
“Staff presence was important to me as they can put in a professional viewpoint...being there and hearing carers’ concerns helps the staff to understand the difficulties that carers and families have [Carer 3]”. (Morris [41] 2012)
Carers not systematically involved
“Relatives are still not systematically included as clients post-stroke, which a family-centered approach would favour.” (Rochette [42] 2014) (ethical issues)
Navigating an alien culture and environment Adversarial relationships with staff Dependent/reliant on staff Health literacy matters
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Wanting personalised dialogue and information
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Being legitimate clients
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5.
“Throughout these transcripts, there was a sense that the PSP [primary support person] was an outsider and at times, an actual intruder into the rehabilitation process.” (Secrest [45] 2002) “Most caregivers, however, relied on their healthcare providers and were left without necessary assistance if providers did not give them this information. ‘I don’t really know what to expect’ [Carer 9].” (Creasy [29] 2013) “Self or relative being part of the health care system was perceived by all as a protective factor because … they know better who to ask (more effective seeking), they may facilitate communication with health professionals (as perceived by health professionals) but they may also be more demanding as they know the constraints of the system
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No.
Themes
Illustrative quotes and want to access the best for their relative.” (Rochette [43] 2014) (actual versus ideal)
Communication eases alienation
“Clear communication between the rehabilitation team, the client, and the carer was emphasised as an important process in planning for discharge. The family conference, which occurred in the weeks early after admission and in the weeks prior to discharge were highlighted as an important time for the client, family and rehabilitation team to openly discuss issues and future plans.” (Gustaffson [35] 2013)
‘The system’ as a barrier to good care
“A truly ‘patient-centered’ approach to rehabilitation may require a significant shift in the way clinicians think about goal setting and rehabilitation. Clinicians would need to be open to the possibility that anything a patient or family member introduces during goal setting sessions should at least be considered for discussion. This might require clinicians to consider topics outside the traditional scope of inpatient rehabilitation.” (Levack [38] 2011)
Staff not working as a team
“Some participants … were irritated when staff asked ‘the same questions all the time’ without explanation…’. There is no liaison whatsoever between all these different people, and …you go through the same thing again…But they [health professionals] should’ve had all that and know this.’ [Carer 4].” (Tyson [48] 2014)
Staff providing support and encouragement
“Caregivers were happy when they received support from others – including healthcare professionals, family members, friends, and neighbors – and they experienced stress when these supports were not in place.” (Cameron [27] 2014)
Preparedness for discharge
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“People described feeling abandoned and unsupported when they were discharged suddenly or sooner than they had been expecting…. ‘I was very surprised when I picked up the phone and there’s this answer: ‘This is the physiotherapist at [ASU], your wife is ready to collect. Would you come and collect her?’. . . When she came out she had a green bag with her belongings in and when I looked at it later there were just three envelopes addressed to the district nurse and the doctors and I had no means of taking it then ‘cos my daughter-in-law had gone back and I didn’t want to leave her on her own . . . So, I wasn’t able to contact them, it being Saturday or Sunday, until Monday and they knew nothing about it at the GP surgery. They said they normally get a fax which they hadn’t had.’ [109C]” (Ellis-Hill [31] 2009)
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Managing the transition home
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“They needed to actively raise questions to get an understanding and more explanation from their physicians. However, family caregivers indicated they had no ideas how to ask a question because they lacked experience and were unfamiliar with these situations.” (Wu [51] 2009)
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7.
Carers don’t know what they don’t know
Looking to the future
“Primary caregivers … typically assumed the stroke survivor would be able to stay in the IRF until he or she was able to at least assist with most ADLs and IADLs and be able to be alone at least for short periods of time. ‘But I, I
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Themes
Illustrative quotes
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really feel like that by the time we go home, he is going to be able to do enough that I can assist him’. [C-1]” Lutz [39] 2011 “Everyday life is the important thing. It really is. Normal everyday life. Really. When everything’s normal and you drink tea in the evening and watch TV. It’s quiet and comfortable and then something special – like when the grandkids visit, or when we get together with them like we usually do on Saturdays and go out to lunch.” (Bertilsson [25] 2015)
A changed relationship and life roles
“One sister struggled with balancing the role of caregiver with those of sister and friend... ‘It’s hard playing these different roles. . . . You get into this caregiver thing where you kind of tell her what to do. . . . Sometimes it’s nice just to be friends too. It’s kind of harder to do that though. . . . It’s hard just to relax and enjoy going out with her when you’re worried about what she’s eating and what she’s drinking’”. (Silva-Smith [46] 2007)
Home and hospital are different
“For those [carers] who were able to attend training at the inpatient rehabilitation facility, the skills they learned often did not transfer well to the home setting.” (Young [52] 2014)
Sourcing support for and from home
“Carers identified the need for detailed information to be provided at an early post-stroke stage so that prompt applications for help and assistance could be made which would prevent anxiety about how they were going to cope. “ (Wiles [50] 1998)
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Strategies for managing stress
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No.
S0003-9993(17)30182-X
DOI:
10.1016/j.apmr.2017.02.024
Reference:
YAPMR 56838
To appear in:
ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION
Received Date: 27 November 2016 Revised Date:
30 January 2017
Accepted Date: 25 February 2017
Please cite this article as: Luker J, Murray C, Lynch E, Bernhardsson S, Shannon M, Bernhardt J, Carers' experiences, needs and preferences during inpatient stroke rehabilitation: a systematic review of qualitative studies, ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION (2017), doi: 10.1016/ j.apmr.2017.02.024. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
Carers’ experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16-01488
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Title: Carers' experiences, needs and preferences during inpatient stroke rehabilitation: a
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systematic review of qualitative studies
Authors: Julie Luker, PhD,a,b,c Carolyn Murray, PhD,d Elizabeth Lynch, PhD,a,b,e Susanne
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Bernhardsson, PhD,f Michelle Shannon, MSc,a Julie Bernhardt, PhD.a,b
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From the a
Florey Institute of Neuroscience & Mental Health, Heidelberg, VIC, Australia;
b
NHMRC Centre of Research Excellence Stroke Rehabilitation and Brain Recovery,
Heidelberg, VIC, Australia; c
Sansom Institute for Health Research, University of South Australia, Adelaide, SA,
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Australia;
Occupational Therapy, University of South Australia, Adelaide, SA, Australia;
e
Adelaide Nursing School, University of Adelaide, Adelaide SA, Australia;
f
Närhälsan Research and Development Primary Health Care, Region Västra Götaland,
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Göteborg, Sweden
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Acknowledgements
The authors thank and acknowledge Olivia Hill, (BHlthSc(hons)) for her assistance with data searching and selection, and Debra Kay (PSM; Chairperson Health Consumers Alliance of SA) for her insights on the political health consumer agenda.
Carers’ experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16-01488
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Funding acknowledgements: At the time of the study Julie Luker held an NHMRC (1052524) Early Career Fellowship; Julie Bernhardt held an NHMRC (1058635) Senior Research Fellowship; Elizabeth Lynch and Carolyn Murray were undertaking PhDs funded by
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Australian Postgraduates Awards.
been presented elsewhere. Conflicts of interest: No conflicts are declared
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Corresponding author: Dr Julie Luker
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Presentation acknowledgments: At the time of submission material from this study has not
c/- Sansom Institute for Health Research, University of South Australia, Adelaide, South Australia 5000 Phone: +61 8 83021021
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Email: [email protected]
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PROSPERO systematic review registration number: CRD42015017315
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 1
Title:
Carers’ experiences, needs and preferences during inpatient stroke
2
rehabilitation: a systematic review of qualitative studies
3 ABSTRACT
5
Objective: To report and synthesise the experiences, needs and preferences of carers of
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stroke survivors undergoing inpatient rehabilitation.
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Data sources: MEDLINE, CINAHL, Embase, PsycINFO and Web of Science were searched
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to March 2016. Reference lists of relevant publications were searched. No language
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restrictions were applied.
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Study selection, appraisal and data extraction: Eligible qualitative studies reported the
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experiences of carers of stroke survivors who underwent inpatient rehabilitation. Selection,
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quality appraisal, and data extraction were undertaken by two or more reviewers. The search
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yielded 3532 records; 93 full-text publications were assessed for eligibility and 34 documents
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(33 studies) were included. Comprehensiveness of reporting was assessed using the COREQ
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framework. All text in studies’ results and discussion sections were extracted for analysis.
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Data synthesis: Extracted texts were analysed inductively using thematic synthesis. Seven
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analytical themes were developed that related to the carers’ experiences, needs and
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preferences: (1) Overwhelmed with emotions; (2) Recognition as a stakeholder in recovery;
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(3) Desire to be heard and informed; (4) Persisting for action and outcomes; (5) Being
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legitimate clients; (6) Navigating an alien culture and environment; (7) Managing the
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transition home.
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Conclusions: This systematic review provides new insights into the experiences, needs and
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preferences of carers of stroke survivors undergoing inpatient rehabilitation. Carers
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1
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 experienced distress as they navigated a foreign culture and environment without adequate
25
communication and processes in place for their inclusion. We recommend deliberate efforts
26
to provide a more inclusive environment that better supports and prepares carers for their new
27
role.
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28 29 ABBREVIATIONS
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ENTREQ
Enhancing Transparency of Reporting the Synthesis of Qualitative Research
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COREQ
Consolidated Criteria for Reporting Qualitative Health Research
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NICE
National Institute for Health and Care Excellence
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34 35 KEY WORDS
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Rehabilitation; Stroke; Qualitative research; Caregivers; Review
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 INTRODUCTION
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Stroke is a leading cause of death and disability worldwide [1]. Advances in acute stroke
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management have reduced mortality rates but not stroke incidence [2, 3], so the number of
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stroke survivors living with disability continues to grow, generating a heavy human and
43
economic burden [3].
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The majority of stroke survivors (65%) require assistance from others for activities of daily
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living [4]. The 2009 Australian Survey of Disability, Ageing and Carers reported 26,367
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Australians caring for people with stroke, with most spending 40 hours or more per week in
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this role [4]. As self-reported data, these figures are likely to be an under-estimate.
48
In the published protocol for this systematic review we explored the variable terminology,
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roles, time commitments and relationships that exist for carers of stroke survivors [5]. We
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define carers as the spouse or partner, family members, friends or ‘significant others’ who
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provide physical, practical or emotional support to someone after their stroke.
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Carers play essential roles in stroke recovery and rehabilitation, enabling many people with
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stroke to remain living in the community with an acceptable quality of life [6]. Inpatient
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stroke rehabilitation plays an important role in recovery of function and mobility for stroke
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survivors. There is a growing evidence base for rehabilitation after stroke, however very little
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of this evidence includes consideration of carers [7-9]. Although stroke guidelines
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recommend actively engaging carers in the rehabilitation process [10, 11], these
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recommendations are largely underpinned by expert opinion only and little guidance is
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available on how this is best achieved. Despite the essential role that carers play for people
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with stroke, and indeed for the healthcare sector, there is little indication on how best to
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prepare carers for this role.
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 The experiences, needs, and preferences of both stroke survivors and their carers are
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important aspects of the stroke rehabilitation process and should inform a person-centred
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approach [12-14]. Ideally, carers should be an integral part of a three-way partnership
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together with healthcare providers and stroke survivors. Our recent systematic review and
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meta-synthesis regarding the experience of stroke survivors during inpatient rehabilitation
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highlighted that better engagement of carers in stroke rehabilitation could contribute to
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progress and recovery [15]. Stroke survivors perceived that the involvement of carers could
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help to alleviate boredom and loneliness, assist with extra practice or exercise, encourage
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motivation and self-efficacy and help in accessing information.
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The growing recognition of the importance of carers for stroke survivors has led to a body of
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qualitative research exploring carers’ viewpoints during and after stroke rehabilitation. There
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is a need to synthesize the carer perspectives to inform development of sustainable, person-
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centred stroke rehabilitation models.
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The authors’ place in this research
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The authors of this systematic review are allied health professionals and researchers
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interested in evidence-based practices that meet the needs of healthcare consumers. The
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research team has interests in person-centred stroke care and models of rehabilitation that
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optimise recovery.
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 Objectives
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The primary objective of this systematic review was to report and synthesise the experiences,
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needs and preferences of carers of stroke survivors undergoing inpatient stroke rehabilitation.
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The secondary objective was to deliver evidence-informed recommendations for person-
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centred inpatient stroke rehabilitation that include consideration of, and planning for, the
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needs, preferences and contribution of carers.
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87 METHODS
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Details of our methodology have been previously reported [5], and the review was registered
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with PROSPERO (CRD42015017315). We followed the Enhancing Transparency of
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Reporting the Synthesis of Qualitative Research (ENTREQ) statement to guide our reporting
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[16]. We chose a thematic synthesis methodology [17] to facilitate analytical theme
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development extending beyond the primary studies, and to generate new insights..
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Criteria for considering studies for this review
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Types of studies: Qualitative studies were included with no language or publication date
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constraints applied.
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Types of participants: Carers of stroke survivors, when the stroke survivors participated in
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inpatient stroke rehabilitation.
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Intervention/exposure: Included studies considered the process of stroke rehabilitation from
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the carer perspective. Data could have been collected during inpatient rehabilitation, or after
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discharge with participants reflecting on their experience. 5
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 103
Exclusion criteria: Studies where data did not directly relate to the experiences, services or
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care provided (or not provided) during inpatient rehabilitation; studies where data related to
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carers’ of stroke survivors could not be separated out; paediatric stroke.
106 The following definition of stroke rehabilitation was used for this review:
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“…a dynamic, progressive, goal orientated process aimed at enabling a person with
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impairment to reach their optimal physical, cognitive, emotional, communicative and/or
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social functional level” [18, p. 4].
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Electronic database searches were conducted in MEDLINE, CINAHL, PsycINFO, Embase,
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and Web of Science from the inception of the databases to March 2016. A research librarian
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helped develop a search string on MEDLINE, which was adapted for the other databases
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(example MEDLINE search in Online Appendix 1). Reference lists of relevant studies and
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reviews were hand searched to identify additional potentially relevant studies. No language
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restrictions were applied.
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Study selection
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Following the removal of duplicates, study selection occurred in two phases. In the first
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phase, all titles and abstracts were screened independently by two authors. All review authors
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performed this step. Differences were resolved through discussion or by a third author. In the
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second phase, full-text articles were screened independently by two authors and differences
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were resolved through discussion or by a third author (JL, CM, SB, EL). The Covidence
6
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 softwarea was used to assist the study selection, screening and critical appraisal processes.
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The flow diagram in Figure 1 illustrates the selection process and reasons for exclusion.
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Exclusion based on quality: Using the process described by Carroll et al (2012), studies were
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excluded if they did not meet at least two of four quality reporting criteria regarding study
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design, selection of participants, methods of data collection and analysis [19].
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131 Critical appraisal of selected papers
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Two authors (JL, SB, EL, CM) independently assessed the included articles for
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comprehensive reporting, discussed differences and reached consensus on scoring. Two non-
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English articles were assessed by the researcher fluent in the published language (SB) [14,
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20].
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Assessing comprehensiveness of reporting: To provide details of comprehensive and explicit
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reporting, included studies were assessed using the Consolidated Criteria for Reporting
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Qualitative Health Research (COREQ) 32-item checklist [16]. Using the COREQ criteria,
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appraisers made judgements about risks to the trustworthiness of included studies based on
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the quality or comprehensiveness of reporting. For example, studies were considered more
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trustworthy if authors justified and explained the setting where interviews or focus groups
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took place and credibility was questioned when those providing rehabilitation services also
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conducted the research, and there were no divergent cases presented.
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145 146
Data extraction
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 Data on the characteristics of included studies were independently extracted by two authors
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(JL plus MS, EL or SB) and a comparison between the extractions was made. Differences in
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data extraction between authors were resolved through discussion, or by a third author. All
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findings presented as text in the ‘Results/findings’, ‘Discussion’ and ‘Conclusion’ sections of
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papers were extracted (JL) and entered into the NVivo 10b software to assist data
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management and coding analysis.
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153 Thematic synthesis
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Details of this thematic synthesis are reported in a previously published study protocol [5]. In
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summary, three stages of inductive coding and thematic development were undertaken, each
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involving independent analysis by two or more experienced qualitative researchers (JL plus
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SB, EL or MS). Small sections of meaning within the text data were initially coded to capture
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the meaning and content of the findings from the original studies. Secondly, the whole
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research team examined the coded data and organised them into logical and meaningful
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groups in a hierarchical tree structure, thereby forming descriptive themes and sub-themes. In
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the third stage (led by CM), analytical themes relating to the aims of the review were
163
developed, with the intent of ‘going beyond’ the content of the original studies and adding an
164
element of interpretation [17]. Both descriptive and analytical themes were then used as a
165
basis for the formulation of evidence-informed recommendations for person-centred inpatient
166
stroke rehabilitation that include consideration of the needs and preferences of carers.
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167 168
RESULTS
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Study selection results 8
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 The systematic search returned 2858 records after removal of duplicates. The abstract
171
screening and full text review process resulted in the selection of 35 documents representing
172
34 separate studies. One study [21] was excluded because it did not meet the core quality
173
reporting criteria. Therefore, 34 documents from 33 studies were included in the thematic
174
synthesis (see Figure 1).
175
<< Figure 1 about here >>
176
Characteristics of included studies
177
Study details are shown in Table 1 and online Appendix 2. The 34 documents included 33
178
published journal articles, and one freely available PhD thesis. One paper was published in
179
Swedish [20] and another in German [14], and both were translated prior to data extraction.
180
The included qualitative data were contributed by 452 carers of people with stroke from 10
181
different countries, thus enhancing transferability and generalisability of the review. Studies
182
were published between 1998 and 2015 and varied in their sample sizes, ranging from 3 to 48
183
carer participants. Carers were the only participants in 11 studies; remaining studies also
184
included data from stroke survivors and/or healthcare professionals. Studies’ primary aims
185
varied and included exploring the perspectives of carers (and stroke survivors) regarding
186
aspects of rehabilitation (n=13), carers’ needs or experiences as they transitioned from
187
hospital to home (n=4), exploring information/education needs (n=5), and describing the
188
process or meaning of becoming the carer to a stroke survivor (n=6). Three studies, with 76
189
carer participants, focused on the experience of aphasia following stroke.
190
<< Table 1 about here >>
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191 192
9
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 193
Comprehensiveness of reporting
194
The quality of reporting of the included studies varied, meeting between 9 and 25 of the 32
195
items on the COREQ checklist (see online Appendix 3).
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198
Analysis of the primary data resulted in 141 preliminary codes that were grouped into 56
199
descriptive themes. In an exhaustive final level of analysis we developed interrelated
200
analytical themes that went beyond the content of the original studies and added an element
201
of interpretation to address our research aims. We identified seven analytical themes:
202
overwhelmed with emotions, recognition as a stakeholder in recovery, desire to be heard and
203
informed, persisting for action and outcomes, being legitimate clients, navigating an alien
204
culture and environment, and managing the transition home. Table 2 details the analytical
205
themes, their underpinning descriptive themes and the relevant source studies.
206
<< Table 2 about here >>
207
The themes are described below and selected quotes to illustrate each descriptive theme are
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provided in Online Appendix 4. Themes were not neatly bounded, with overlapping and cross
209
connections noted across themes, illustrating the complexity of the experiences of carers
210
during inpatient rehabilitation.
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1. Overwhelmed with emotions
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The first analytical theme was derived from 23 studies [12-14, 20, 23-27, 29, 30, 33, 36, 39-
213
42, 45-47, 49, 51, 52] and comprised 11 descriptive themes. Carers experienced a strong
214
emotional response to the stroke survivor having the stroke, being hospitalised and being
10
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 vulnerable. This response was characterised by shock and worry. Carers reported feeling
216
distressed by the uncertainty of the future and the responsibilities they carried for supporting
217
and advocating for the person with stroke. With the new responsibilities came some
218
resentment and guilt about the self-sacrifice required of them and some carers reported pain
219
and other physical symptoms which they believed resulted from their emotional state and
220
stress. They noticed a shift in their relationships with their relative and felt grief and loss as
221
they adjusted to their new circumstances. This response seemed particularly evident for those
222
caring for people who had aphasia. It was perceived important that staff not only prepare
223
carers for the worst but also provide a sense of hope for recovery and positivity. Emotional,
224
psychosocial and practical support from family, staff and particularly peer carers, was
225
reported to relieve distress.
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2. Recognition as a stakeholder in recovery
This theme was about carers wanting to contribute to the recovery of the stroke survivor as
228
this facilitated feeling involved and helpful. The theme had nine descriptive themes arising
229
from 26 studies [12, 13, 20, 23-26, 29, 31-36, 38, 39, 41-43, 45, 47-52]. Carers prioritised
230
‘being there’ for the stroke survivor over their own self-care and their other life roles. They
231
expressed frustration about staff not actively involving them in therapy, the lack of
232
“homework” [12, p. 515] and having their expertise about the interests and past routines and
233
roles of the stroke survivor underutilised. If not given exercises or activities to do with the
234
stroke survivor, some carers devised their own. Carers believed that with their involvement,
235
rehabilitation could be more individualised and meaningful and they could more effectively
236
support the person emotionally. They found it harder to support the person’s recovery when
237
they didn’t know what to expect, what the recovery trajectory would be and how the person
238
was progressing. Lack of regular updates heightened their stress levels leading them to make
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11
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 239
their own conclusions and assumptions based on what they observed and their own
240
initiatives.
241
3. Desire to be heard and informed When carers felt listened to and included they had more confidence in the rehabilitation
243
process. This theme had 10 descriptive themes and was highly prevalent throughout the data
244
in 32 primary studies [12-14, 20, 23-37, 40-52]. When staff were supportive and caring
245
toward carers, they became reassured that their relative was in a safe environment and when
246
they were included and informed, they found it easier to advocate for the stroke survivor.
247
When they were not included they felt disempowered and became suspicious about what was
248
going on. This was damaging to the relationship between the carers and health professionals,
249
particularly when carers were treated disparagingly causing them to feel invisible,
250
intentionally excluded and alone. A participant in the research by Creasy [29, p 92]
251
remembered being called a “haemorrhoid” by health professionals and a participant in Wu
252
[51, p. 79] described medical practitioners as “arrogant” becoming defensive when carers
253
asked them questions.
254
It was recommended that health professionals actively engage with carers to understand their
255
readiness for different information, and the appropriate doses, to keep them informed but not
256
overwhelmed. The broad range of information required by carers was discussed in 20 primary
257
studies with topics including the consequences of stroke and its causes, prognosis for
258
recovery, assessment results, rehabilitation and therapy, how best to assist and interact with
259
the stroke survivor, sexuality post-stroke, and preparation for discharge. A variety of
260
information formats were required to meet carers’ varying needs and ideally these should be
261
individualised, without jargon and often needed to be repeated. The research by Cameron
262
[26] found that carer information needs changed over the recovery trajectory and
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12
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 recommended health professionals be sensitive to this. There was a strong desire for
264
coordinated, two-way sharing of information. Due to the extraordinary nature of their
265
experience, carers wanted staff to proactively engage with them, as expressed by one carer
266
“you're so overwhelmed you don't know what you need” [24, p. 371]. When information was
267
not forthcoming, carers implemented strategies of “chasing” health professionals, patiently
268
standing sentinel over the stroke survivor and sourcing their own information. 4. Persisting for action and outcomes
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This theme had six descriptive themes and included data from 13 primary studies [13, 28, 29,
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35, 36, 40, 42, 43, 45, 48-51]. Carers needed increasing persistence to find information that
272
they needed and to get the care that they perceived the stroke survivor needed. The busy-ness
273
of health professionals was regarded as a barrier to carers having their needs met. Whilst
274
carers were initially empathetic about the workload of health professionals and the limited
275
resources in the inpatient environment, their patience and politeness began to fade. A carer in
276
research by Halle [36] stopped caring whether she upset the health professionals with her
277
questions, and carers in Creasy’s study [29, p. 94] described themselves as being “the
278
squeaky wheel” and using “a loud voice”. Carers raised concerns that insufficient therapy
279
would compromise stroke recovery and about demeaning, uncaring treatment of the person
280
with stroke. They found that complaining was mostly ineffective causing them to become
281
increasingly protective. One carer in Secrest’s study described the difficulty of “having to
282
choose my battles,” that “we had to keep fighting that,” and “we just begged.” [45]. It is
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likely that these experiences exacerbated the emotional strain and distress that were described
284
in the first theme.
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5. Being legitimate clients
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 This fifth theme had six descriptive themes sourced from 29 primary studies [12-14, 20, 23-
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26, 29, 31, 33-44, 47-52]. Based on staff behaviour, some carers perceived that they were not
288
eligible for services from the health professionals. However, as explained in the first theme,
289
carers were experiencing an emotionally difficult time and seemed to be crying out for some
290
personal support and counselling. Many lamented the lack of carer training to prepare them
291
for their new role (discussed further in theme 7). This finding resulted from some health
292
systems not having processes in place for including carers, or a family centred approach,
293
focusing only on the stroke survivor. This oversight led to carers being unprepared for their
294
caring role.
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6. Navigating an alien culture and environment
This theme had eight descriptive themes and included data from 29 primary studies [12-14,
297
23, 24, 26-40, 42, 43, 45-49, 51, 52]. Carers with health literacy who were familiar with
298
hospital environments were at an advantage. Carers who were unfamiliar with hospital and
299
rehabilitation settings were left to navigate an environment that was foreign to them without a
300
“road map” [24, p. 368], and were reliant on health professionals to guide them. Issues arose
301
when health professionals mistakenly assumed that carers already had information or
302
knowledge, and when carers did not know what questions to ask. Some staff provided more
303
help and support to carers than others, with Secrest [45] describing nurses as being on a
304
continuum from helpful to adversarial. Established cultures and systems of care in the acute
305
or rehabilitation environments sometimes prohibited inclusion of carers and promoted
306
inflexibility about approaches to care. A sense of alienation was exacerbated by health
307
professionals who did not always work in coordinated or efficient teams, which could lead to
308
the repeating of questions and assessments. Carers appreciated the efforts of some health
309
professionals to help them understand the processes, procedures and expectations during
310
rehabilitation.
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7. Managing the transition home Carers have a pivotal role in enabling the stroke survivor to transition to home. This theme
313
had six descriptive themes and included data from 24 primary studies [12, 13, 20, 23-29, 31,
314
33-36, 39, 43, 44, 46, 47, 49-52]. Carers were often unprepared for discharge and many
315
needed more hands-on practise and training. One carer commented “I don’t think they
316
[speech pathologists] realize how important it is to the actual carer ... to learn some of the
317
skills [for communicating with the person with aphasia]” [12, p. 516]. Practise and training
318
that occurred in the inpatient environment did not always translate well to home and carers
319
found it bewildering that professionals seemed unaware of this dissonance. Explicit
320
information about arrangements gave carers more control over what services were organised
321
and increased confidence to follow up if services and support were not forthcoming after
322
discharge. Not all needs could be anticipated prior to discharge, so carers needed to have the
323
resources to initiate services, manage finances and ask questions once the person with stroke
324
returned home.
325
The transition to home for carers included adjustment to their perception of the future,
326
possible changes in their relationship with the stroke survivor and the new responsibilities
327
associated with being a carer. Carers reported the need for coping strategies, counselling and
328
opportunities for reflection about their situation. In particular, carers need to be given
329
permission to take time out and respite to address their own needs.
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331
DISCUSSION
332
This review completes our systematic study of stroke survivors [15] and their carers’
333
experience of inpatient stroke rehabilitation. Key findings of our review were that carers of
334
stroke survivors often become overwhelmed with emotions, that they have a strong desire to 15
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 be recognised as a stakeholder in recovery, and that they need to persist for action and
336
outcomes during inpatient rehabilitation. The process of stroke rehabilitation differs between
337
services, and is recognised as being a ‘complex intervention’ with a range of moving parts
338
[53], bringing challenges for multiple stakeholders. The role of the carer in long term care
339
and support of a person with stroke is well documented [6, 54], as is the long term stress [55]
340
often associated with providing that care. In the Australian healthcare context, replacing the
341
unpaid work provided by carers in 2015 is estimated to cost AU$60.3 billion or 3.8% of
342
Gross Domestic Product [56]. What is less well described is the early experience of becoming
343
a carer of someone with stroke and the needs of carers during the important phase of
344
rehabilitation.
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345
In this review we identified seven analytical themes highlighting both the early stress
347
associated with becoming a carer, and the challenges of getting the information and
348
engagement with staff that carers need to support the stroke survivor in an alien healthcare
349
environment. While many of these themes were unique to the experience of carers, and not
350
found in our earlier systematic review of stroke survivors [15], there were some interesting
351
synergies. For example, both people with stroke and their carers reported feelings of distress,
352
anxiety and fear during the inpatient period which was exacerbated by their sense of
353
dependency and reliance on staff. Both groups craved better two-way communication with
354
staff and timely information about the stroke and recovery. The importance of maintaining
355
hope, and the desire for more rehabilitation therapy were also common to both stroke
356
survivors and their carers. A number of themes highlight the preference of some carers to be
357
fully engaged in the process of rehabilitation. The idea that carers wish to be considered as
358
legitimate clients in the stroke survivor’s recovery came through strongly in this review. This
359
notion, that carers should be an integral part of rehabilitation, is increasingly promoted for
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stroke rehabilitation [7, 57]. The reality appears to be very different, and some guideline
361
recommendations still suggest passive roles for carers (such as receivers of information)
362
rather than active partnerships in the process [7, 11].
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365
[58]. There is potential for conflict to arise between health professionals and carers regarding
366
recognition of expert knowledge of the stroke survivors’ needs. Both stakeholder groups hold
367
different forms of expertise relating to the survivor which, in combination, may enhance care
368
and recovery. A number of frameworks to explore the engagement of carers in rehabilitation
369
have been developed over the years. For example, Brown and colleagues [59] outlined a
370
model delineating potential levels of interaction between carers and health care professional
371
ranging from no involvement right through to family as therapy assistant, family as co-client,
372
collaborator or director. An alternative model, the ‘carer-as-expert’ model is based on the
373
principles that the demands on carers, and their skills and expertise, develop over time and
374
will not be static. The carer-as-expert approach aims to help carers attain the skill,
375
competencies and resources they need, without detriment to their own health [60]. What
376
remains elusive is the systematic application and testing of any theoretical approaches that
377
aim to improve engagement of carers throughout the period of rehabilitation and first
378
transition home. A review of caregiver interventions and caregiver/stroke survivor dyad
379
interventions found 32 studies with a range of study designs, treatment targets and outcomes
380
[54]. Some well-designed trials targeted education and skill building to support carers, and
381
interventions to reduce caregiver anxiety and stress [54]. While a number of
382
recommendations were made in the review, its focus was on health professional-led
383
interventions for carers, rather than on partnership approaches to delivering rehabilitation.
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Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 384 Given the recently increased attention on delivering person-centred care, our findings are
386
particularly important to understand. Person-centred care is where the care provider focuses
387
on the needs and resources of the patient and can be defined as co-creation of care between
388
the patients, their family/carers, and health professionals [61]. A review of health policy and
389
literature identified three core elements of person-centred care as patient participation and
390
involvement, the relationship between the patient and the healthcare professional and the
391
context where care is delivered [62]. Furthermore, health governance bodies and health
392
consumer advocacy groups have identified respectful health service partnership with
393
consumers, health literacy to enable effective partnership, and shared decision making as
394
essential pillars of patient-centred care [63, 64]. Our review supports the importance of these
395
aspects for the carers of people rehabilitating from stroke.
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398
Our rigorous methodology and thematic synthesis enabled us to stay faithful to the primary
399
studies’ data, providing explicit and clear links between our inferences and the text of the
400
primary studies. Further strengths of this review are the large combined sample (452 stroke
401
carers), and the internationally diverse research (10 countries), enhancing transferability of
402
our findings.
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Study limitations
405
We have not reported findings separately for the two translated articles. Data in the non-
406
English papers aligned closely with other included studies, thus we are confident that this 18
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 deviation from our protocol did not compromise credibility [5]. Despite one study excluded
408
based on minimum quality criteria, the reporting within included primary studies was
409
variable with one third of the studies meeting less than 50% of COREQ criteria. This
410
suboptimal reporting may affect the credibility and limit the confidence that can be placed in
411
our findings. Further, we acknowledge that the COREQ criteria are relatively new and not
412
universally accepted as the best way of appraising all types of qualitative studies. This
413
review, as with all systematic reviews, may be limited by publication bias which may be
414
particularly constraining for qualitative studies. Nevertheless, despite these limitations, the
415
relevance, coherence and adequacy and richness of the data supporting the findings, suggest
416
that overall, moderate confidence can be placed in many of the review findings (i.e. the
417
findings are reasonable representations of the phenomena of interest).
418
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Conclusions and recommendations
420
This review provides important new insights into the experiences, needs and preferences of
421
carers of stroke survivors undergoing inpatient rehabilitation, and exposes several areas for
422
improvement, and where knowledge gaps exist. Carers experienced distress caused by the
423
stroke, and by having to navigate a foreign culture and environment without adequate
424
communication or processes in place for their inclusion. The systematic consideration of
425
carers as legitimate clients, partners and expert team members in the rehabilitation process
426
could ease the distress currently reported. Deliberate efforts are needed to provide a more
427
inclusive environment and systems that can enable carers to easily access support,
428
information and training for their new roles, based on their individual needs and preferences.
429
Strategies, including health literacy interventions, should be embedded within rehabilitation
430
to facilitate carers’ (and stroke survivors) understanding of stroke and the rehabilitation
431
process so that alienation is reduced and engagement is enabled. Respectful two-way
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19
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433
and include carers in shared decision making if they wish. Further research is required to
434
better understand the barriers to person-centred care for carers during the inpatient
435
rehabilitation process, and what interventions will optimize health professionals’ meaningful
436
partnership with carers during rehabilitation.
438 439
Suppliers
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a. Covidence online software; www.covidence.org/
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b. NVivo 10; QRS International Pty Ltd. http://www.qsrinternational.com/nvivo-product
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References
446
1.
prevalence and case fatality in the late 20th century. Lancet Neurology, 2003. 2(1): p. 43-53. 2.
449 450
Lackland, D.T., et al., Factors influencing the decline in stroke mortality: a statement from the
American Heart Association/American Stroke Association. Stroke, 2014. 45(1): p. 315-353.
3.
451 452
AC C
448
Feigin, V.L., et al., Stroke epidemiology: a review of population-based studies of incidence,
EP
447
TE D
443
Vaartjes, I., et al., Remarkable decline in ischemic stroke mortality is not matched by changes in incidence. Stroke, 2013. 44(3): p. 591-597.
4.
Deloitte Access Economics. The economic impact of stroke in Australia. 2013 September 4th
453
2016]; Available from: https://strokefoundation.com.au/What-we-do/Research/Economic-
454
impact-of-stroke-in-Australia [A.
20
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 455
5.
**************************** (Authors’ paper)
6.
National Stroke Foundation, Walk in our shoes: stroke survivors and carers report on support
456
458
460 461
clinical guideline. 2013. 8.
462 463
Teasell, R., et al., Stroke rehabilitation: an international perspective. Topics in Stroke Rehabilitation, 2009. 16(1): p. 44-56.
9.
464 465
National Institute for Health and Care Excellence (NICE) Stroke rehabilitation in adults:
RI PT
7.
SC
459
after stroke, N.S. Foundation, Editor. 2007: Melbourne, Australia.
Pollock, A., et al., Physical rehabilitation approaches for the recovery of function and mobility following stroke. Cochrane Database of Systematic Reviews 2014(4).
10.
M AN U
457
Miller, E., et al., Comprehensive overview of nursing and interdisciplinary rehabilitation care
466
of the stroke patient. A scientific statement from the American Heart Association. Stroke,
467
2010. 41(10): p. 2402-2448. 11.
469 470
National Stroke Foundation, Clinical guidelines for stroke management. 2010: Melbourne Australia.
12.
TE D
468
Howe, T.D., B.; Worrall, L.; Hersh, D.; Ferguson, A.; Sherratt, S.; Gilbert, J., 'You needed to rehab ... families as well': family members' own goals for aphasia rehabilitation.
472
International Journal of Language & Communication Disorders, 2012. 47(5): p. 511-21. 13.
474
interpretative phenomenological analysis. Disability and Rehabilitation, 2004. 26(16): p.
475 476
Hunt, D. and J.A. Smith, The personal experience of carers of stroke survivors: an
AC C
473
EP
471
1000-1011.
14.
Jungbauer, J., K. Döll, and G. Wilz, Gender- and age-specific aspects of assistance need in
477
caregivers of stroke patients: results from a qualitative panel study [German]. Rehabilitation,
478
2008. 47(3): p. 145-149.
479
15.
******************************** (Authors’ paper)
480 21
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 16.
482 483
ENTREQ. . BMC Medical Research Methodology, 2012. 12(8): p. 181. 17.
484 485
Tong, A., et al., Enhancing transparency in reporting the synthesis of qualitative research:
Thomas, J. and A. Harden, Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 2008. 8(10): p. 45.
18.
Dawson, A., et al., Canadian best practice recommendations for stroke care, in Canadian best
RI PT
481
486
practice recommendations for stroke care, M.P. Lindsay, M. Bayley, and S. Phillips, Editors.
487
2013, Heart and Stroke Foundation and the Canadian Stroke Network: Ottawa. p. 1-95. 19.
Carroll, C., A. Booth, and M. Lloyd-Jones, Should we exclude inadequately reported studies
SC
488
from qualitative systematic reviews? An evaluation of sensitivity analyses in two case study
490
reviews. Qualitative Health research, 2012. 22: p. 1425-1434.
491
20.
M AN U
489
Lindquist, I. and K. Dahlberg, The experience of being next of kin to a person with stroke
492
[Swedish]. Nordic Journal of Nursing Research & Clinical Studies / Vård i Norden, 2002. 22(3):
493
p. 4-9.
495
carers' opinions. British Journal of Therapy and Rehabilitation, 1997. 4(2): p. 82-85. 22.
497 498
PRISMA Statement. PLoS Med, 2009. 6(7): p. e1000097. 23.
499
p. 166-174.
24.
502 503 504
Ang, S.Y., et al., A qualitative study into stroke caregivers' educational needs - Perspectives of caregivers and healthcare professionals. Proceedings of Singapore Healthcare, 2013. 22(3):
500 501
Moher D, et al., Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The
EP
496
Bailey, M. and N. Rennie, Physiotherapy support for carers od stroke patients: a survey of
TE D
21.
AC C
494
Avent, J., et al., Family information needs about aphasia. Aphasiology, 2005. 19(3-5): p. 365375.
25.
Bertilsson, A.-S., et al., Client-centred ADL intervention after stroke: Significant others' experiences. Scandinavian Journal of Occupational Therapy, 2015. 22(5): p. 377-386.
22
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 505
26.
Cameron, J., et al., Stroke family caregivers' support needs change across the care
506
continuum: a qualitative study using the timing it right framework. Disability &
507
Rehabilitation, 2013. 35(4): p. 315-324.
508
27.
Cameron, J.I., et al., Stroke survivors', caregivers', and health care professionals' perspectives on the weekend pass to facilitate transition home. Journal of Rehabilitation Medicine, 2014.
510
46(9): p. 858-63. 28.
512
Journal of Rehabilitation Research, 2000. 23(1): p. 19-29. 29.
514 515
Creasy, K.R., et al., The Impact of Interactions with Providers on Stroke Caregivers' Needs. Rehabilitation Nursing, 2013. 38(2): p. 88-98.
30.
SC
513
Clark, M.S., Patient and spouse perceptions of stroke and its rehabilitation. International
M AN U
511
RI PT
509
Danzl, M.M., et al., "Living with a ball and chain": the experience of stroke for individuals and
516
their caregivers in rural Appalachian Kentucky. Journal of Rural Health, 2013. 29(4): p. 368-
517
82. 31.
Ellis-Hill, C.R., J.; Wiles, R.; McPherson, K.; Hyndman, D.; Ashburn, A., Going home to get on
TE D
518 519
with life: patients and carers [sic] experiences of being discharged from hospital following a
520
stroke. Disability & Rehabilitation, 2009. 31(2): p. 61-72. 32.
Eng, X.W., et al., Factors affecting the ability of the stroke survivor to drive their own
EP
521
recovery outside of therapy during inpatient stroke rehabilitation. Stroke Research and
523
Treatment, 2014(626538).
524
33.
525
2014. 21(1): p. 63-74.
34.
528 529 530
Galvin, R.S., E.; Cusack, T., Family-Mediated Exercises (FAME): an exploration of participant's involvement in a novel form of exercise delivery after stroke. Topics in Stroke Rehabilitation,
526 527
AC C
522
Garrett, D. and F. Cowdell, Information needs of patients and carers following stroke. Nursing Older People, 2005. 17(6): p. 14-16.
35.
Gustafsson, L. and K. Bootle, Client and carer experience of transition home from inpatient stroke rehabilitation. Disability & Rehabilitation, 2013. 35(16): p. 1380-6.
23
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 36.
532 533
rehabilitation following stroke. Disability and Rehabilitation, 2014. 36(21): p. 1774-1782. 37.
534 535
Halle, M.-C. and G. Le Dorze, Understanding significant others' experience of aphasia and
Hewitt, G., et al., Interprofessional teamwork in stroke care: Is it visible or important to patients and carers? Journal of Interprofessional Care, 2015. 29(4): p. 331-339.
38.
Levack, W.M.M., et al., Navigating patient-centered goal setting in inpatient stroke
RI PT
531
536
rehabilitation: How clinicians control the process to meet perceived professional
537
responsibilities. Patient Education and Counseling, 2011. 85(2): p. 206-213.
539
Topics in Stroke Rehabilitation, 2011. 18(6): p. 786-797. 40.
541 542
stroke service. International Journal for Quality in Health Care, 2007. 19(2): p. 105-112. 41.
543 544
Morris, R., O. Payne, and A. Lambert, Patient, carer and staff experience of a hospital-based
M AN U
540
Lutz, B.J., et al., The Crisis of Stroke: Experiences of Patients and Their Family Caregivers.
SC
39.
Morris, R. and P. Morris, Participants' experiences of hospital-based peer support groups for stroke patients and carers. Disability & Rehabilitation, 2012. 34(4): p. 347-54.
42.
Rochette, A., et al., Ethical issues relating to the inclusion of relatives as clients in the post-
TE D
538
545
stroke rehabilitation process as perceived by patients, relatives and health professionals.
546
Patient Education & Counseling, 2014. 94(3): p. 384-9. 43.
Rochette, A., et al., Actual and ideal services in acute care and rehabilitation for relatives
EP
547
post-stroke from three perspectives: Relatives, stroke clients and health professionals.
549
Journal of Rehabilitation Medicine, 2014. 46(1): p. 16-22.
550
44.
551 552
555
Schmitz, M.A. and M. Finkelstein, Perspectives on poststroke sexual issues and rehabilitation needs. Topics in Stroke Rehabilitation, 2010. 17(3): p. 204-13.
45.
553 554
AC C
548
Secrest, J.S., How stroke survivors and primary support persons experience nurses in rehabilitation. Rehabilitation Nursing Journal, 2002. 27(5): p. 176-81.
46.
Silva-Smith, A.L., Restructuring Life: Preparing for and Beginning a New Caregiving Role. Journal of Family Nursing, 2007. 13(1): p. 99-116.
24
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 47.
557
Stroke Survivors: Does Age Matter? Topics in Stroke Rehabilitation, 2008. 15(6): p. 593-601. 48.
559
Clinical Rehabilitation, 2014. 28(8): p. 824-831.
561 562
relative. Scandinavian Journal of Caring Sciences, 2008. 22(1): p. 48-55. 50.
563 564
51.
52.
Young, M.E., et al., A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation. Disability & Rehabilitation, 2014. 36(22): p. 1892-902.
53.
569 570
Wu, C.-m., Learning to be a family caregiver for severely debilitated stroke survivors during the first year in Taiwan. 2009, University of Iowa. p. 318 p.
567 568
Wiles, R.P., H.; Buckland, S.; McLellan, L., Providing appropriate information to patients and carers following a stroke. Journal of Advanced Nursing, 1998. 28(4): p. 794-801.
565 566
Wallengren, C., F. Friberg, and K. Segesten, Like a shadow - on becoming a stroke victim's
RI PT
49.
SC
560
Tyson, S.F., et al., Service users' views of the assessment process in stroke rehabilitation.
M AN U
558
Smith, S.D., et al., Differences in the Experiences and Support Needs of Family Caregivers to
Campbell, N.C., et al., Designing and evaluating complex interventions to improve health care. BMJ, 2007: p. 334-455.
54.
TE D
556
Bakas, T. and S.C. Burgener, Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors. Topics in Stroke Rehabilitation, 2002. 9(1):
572
p. 34-45. 55.
574 575
International Journal of Stroke, 2009. 4(4): p. 285–292. 56.
576 577
580
Deloitte Access Economics, The economic value of informal care in 2015. 2015: ACT, Australia.
57.
578 579
Rigby, H., G. Gubitz, and S. Phillips, A systematic review of caregiver burden following stroke.
AC C
573
EP
571
Barry , M.J. and S. Edgman-Levitan Shared Decision Making — The Pinnacle of PatientCentered Care. New England Journal of Medicine, 2012. 366(9): p. 780-781.
58.
Nolan, M., Working with family carers: towards a partnership approach. Reviews in Clinical Gerontology, 2001. 11(1): p. 91-97.
25
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 581
59.
Brown, I., R. Renwick, and M. Nagler, The centrality of quality of life in health promotion and
582
rehabilitation, in Quality of life in health promotion and rehabilitation: conceptual
583
approaches, issues and applications, R. Renwick, I. Brown, and M. Nagler, Editors. 1996,
584
Sage: Callifornia: Thousand Oaks.
586 587
Social Theory & Health 2013. 11(1): p. 40-58. 61.
588 589
Sadler, E. and C. McKevitt, ‘Expert carers’: An emergent normative model of the caregiver.
RI PT
60.
The Health Foundation Person-centred care made simple: What everyone should know about person-centred care. 2014.
62.
SC
585
Kitson, A., et al., What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. Journal of Advanced
591
Nursing, 2013. 69(1): p. 4-15.
592
63.
M AN U
590
Australian Commission for Safety and Quality in Health Care. The National Safety and Quality goals for health care: Patient and consumer centred care. 2012 11th Nov 2016]; Available
594
from: www.safetyandquality.gov.au/our-work/patient-and-consumer-centred-care/
595
64.
596
599
Available from: https://chf.org.au/2015-2018-strategic-plan 65.
Shaw, R.L., et al., Finding qualitative research: an evaluation of search strategies. BMC
EP
598
Consumers' Health Forum of Australia. 2015-2018 Strategic Plan. 2015 22/11/2016];
Medical Research Methodology, 2004. 4(1).
AC C
597
TE D
593
600
FIGURES LEGEND
601
Figure 1
Flow chart of search and screening process
602 603
TABLES LEGEND
604
Table 1
Characteristics of studies
605
Table 2
Analytic and descriptive themes with source documents 26
Carers experiences of stroke rehabilitation Ms. Ref. No.: ARCHIVES-PMR-D-16ACCEPTED MANUSCRIPT 01488 Online Appendix 1
Search strategy for Ovid Medline
607
Online Appendix 2
Expanded study characteristics
608
Online Appendix 3
Appraisal of comprehensive reporting
609
Online Appendix 4
Analytic and descriptive themes with source documents
AC C
EP
TE D
M AN U
SC
RI PT
606
27
ACCEPTED MANUSCRIPT
Table 1 Characteristics of studies (expanded in online Appendix 2) First author
Carer
year
participants n = 452
Ang [23]
RI PT
Study aim
To find out more about healthcare professionals' and
10
caregivers’ perceptions of educational needs while the 2013
To determine what information family members need
16
M AN U
Avent [24]
SC
stroke survivor is still in hospital
during 3 phases of aphasia: acute, initial rehabilitation 2005
and chronic Bailey* [21]
To survey the views of carers of stroke patients
21
regarding the service offered by physiotherapy to both
1997
Bertilsson [25]
7
TE D
carer and patient To explore and describe if and how a client-centred ADL intervention was integrated in the everyday lives of
EP
2015
significant others of people with stroke
2013
24
AC C
Cameron [26]
Cameron [27]
15
Explore the support needs over time from the perspective of family caregivers, and from the perspective of health care professionals. To compare and contrast these perspectives. To obtain an in-depth understanding of patients’, family caregivers’, and health care professionals’ perception of
2014
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
RI PT
n = 452 Weekend Passes and its role in facilitating the transition home
To examine, in a group of stroke patients and their
46
SC
Clark [28]
spouses, their perceptions of stroke, information received 2000
Creasy [29]
M AN U
about it, its management and its rehabilitation 17
To explore caregivers’ perceptions about interactions with providers in rehabilitation, and how these
2013
experiences affected caregiver preparation To describe the experience of stroke for survivors and
12
TE D
Danzl [30]
their caregivers in rural Appalachian Kentucky
2013 Ellis-Hill [31]
13
To develop the understanding of what constitutes a
EP
‘good’ or ‘poor’ experience in relation to the transition
2009
AC C
from hospital to home following a stroke
Eng [32] 2014
Galvin [33]
6
15
To explore factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient rehabilitation To explore the impact of family involvement in exercise delivery after stroke from the perspective of the
2014
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
RI PT
n = 452 individual with stroke and his or her family member Garrett [34]
To discover the perceived information needs of patients
16
information is given
To enhance our understanding of the transition
5
M AN U
Gustafsson [35]
SC
and their carers about when, by whom and what format 2005
experience for clients with stroke and their carers during 2013
discharge and the first month at home Halle [36]
To understand significant others’ experience of aphasia
12
TE D
rehabilitation within the context of post-stroke 2014
rehabilitation
Hewitt [37]
4
To explore patient and carer perceptions of good and
2012
48
AC C
Howe [12]
EP
poor teamwork and its impact on experiences of care
2015
Hunt [13]
4
To identify the rehabilitation goals that family members of individuals with aphasia have for themselves
To explore the experiences of members of families who are involved as carers of stroke survivors, in the early
2004 caring period before patients return home
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
Jungbauer [14]
RI PT
n = 452 To investigate the need for professional assistance in
10
carers of stroke patients who do not require a therapeutic 2008
group intervention, and how this need for assistance is
To investigate, by observation and interview, the
7
M AN U
Levack [38]
SC
changing in the course of rehabilitation
application of goal setting during a series of cases of 2011
inpatient stroke rehabilitation Lindquist [20]
To describe how wives and daughters, who are family
5
members of stroke survivors, experience their specific 2002
Lutz [39]
15
TE D
situation
To explore the needs of stroke patients and their family caregivers as they transition through the stroke care
EP
2011
continuum from acute care to inpatient rehabilitation to
AC C
home
Morris [40] 2007
Morris [41]
5
3
To study the experiences of patients, carers and staff throughout a hospital stroke care pathway To examine stroke patients’, carers’ and volunteer supporters’ experiences of peer support groups during
2012 hospital rehabilitation
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
Rochette [42]
RI PT
n = 452 To document the ethical issues regarding the systematic
30
inclusion of relatives as clients in the post-stroke 2014a
Rochette [43]
SC
rehabilitation process
To document the gap between actual and desired ideal
a/a
services for relatives post-stroke from 3 perspectives:
M AN U
2014b
relatives, stroke clients and health professionals Schmitz [44]
To study the perspectives and experiences of stroke
14
survivors and their partners regarding sexual issues and 2010
Secrest [45]
7
TE D
perceived rehabilitation needs
To explore experiences with rehabilitation nursing care of stroke survivors and their primary support persons to
2002
EP
gain insight into their perceptions of nurses' role in promoting quality of life
2007
12
AC C
Silva-Smith [46]
Smith [47]
9
To describe the process associated with preparing for and beginning a new caregiving role following a family member's stroke To learn about family care-givers' experiences and support needs during the rehabilitation phase to inform
2008 program development (especially interested on the
ACCEPTED MANUSCRIPT
First author
Carer
year
participants
Study aim
RI PT
n = 452 influence of age) Tyson [48]
To investigate service users (stroke survivors and
6
assessment process
To illuminate the meaning of going from being just a
16
M AN U
Wallengren [49]
SC
caregivers) experiences and views of the rehabilitation 2014
relative to gradually becoming a relative to a stroke 2008
victim from the time of the stroke event and the first weeks on
To examine the information needs of patients and
12
TE D
Wiles [50]
caregivers at various stages following stroke
1998 Wu [51]
17
To explore and describe the situational experience of
EP
Taiwanese family members who were learning how to
2014
AC C
become a caregiver for a stroke survivor during the first
Young [52] 2014
14
year after discharge To delineate critical assessment domains identified by a subset of spousal stroke caregivers
ACCEPTED MANUSCRIPT
Table 2 Analytic and descriptive themes with source documents Analytic themes
Descriptive themes
Source Documents
[12-14, 20, 23-27, 29, 30, 33, 36, 39-42,
SC
Overwhelmed with emotions
M AN U
Vulnerability of SS is confronting
45-47, 49, 51, 52] [13, 24, 36, 42, 45, 49] [13, 29, 47, 49, 51]
Feeling bewildered and shocked
[12, 13, 23, 24, 27, 49]
Experiencing grief and loss
[39, 49, 52]
Experiencing stress and physical symptoms
[12, 13, 23, 36, 49]
EP
TE D
Coping with uncertainty
Feeling distressed, fearful and anxious
AC C
1.
RI PT
No.
[13, 20, 24, 26, 27, 40, 49]
Feeling emotionally drained and exhausted
[26, 27, 39]
Managing multiple demands and new
[12, 13, 24, 26, 30, 33, 35, 36, 39, 46,
responsibilities
51]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
RI PT
No. [13, 36, 49]
Staying positive and hopeful
[12, 20, 23, 24, 36, 39, 47, 49]
SC
Responsibility creates resentment and guilt
Recognition as a stakeholder in recovery
TE D
Carers engaging with therapy and care
EP
Making sacrifices and prioritising the carer role Understanding the rationale for rehabilitation
[12-14, 23-27, 41, 47, 52] [12, 13, 20, 23-26, 29, 31-36, 38, 39, 41-43, 45, 47-52] [12, 13, 20, 25, 26, 32, 33, 36, 40, 42, 43, 51] [13, 29, 36, 39, 43, 47, 49, 52] [24, 25, 29, 31-33, 35, 36, 39, 51]
therapy
AC C
2.
M AN U
Support from others relieves distress
Carers know the SS
[12, 25, 29, 33, 36, 40, 45]
Managing the emotions of SS
[13, 23, 24, 29, 34-36, 40, 45]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
RI PT
No. [12, 13, 23, 24, 29, 36, 39, 40, 48, 50,
Knowing expected recovery
Getting updated on progress
[23, 26, 36, 40, 43, 48] [29, 34, 38, 40, 50]
Being opportunistic and observant
[29, 39, 49]
M AN U
Requesting individualised care and information
TE D
Desire to be heard and informed
[12-14, 20, 23-37, 40-52] [13, 25-27, 29, 31, 34, 37, 43, 49]
Disempowered through lack of information
[12, 20, 24, 30-32, 34, 36, 40, 48, 50,
EP
Inclusion promotes confidence
AC C
3.
SC
51]
51]
Learning the consequences of stroke
[23, 27-29, 34, 48, 50]
Needing a range of information topics and formats
[12-14, 20, 23, 24, 26, 28, 29, 31, 34-36, 43, 44, 47, 48, 50-52]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
Information is a form of support
RI PT
No.
SC
Needing different information at different times
44, 47, 50]
Wanting a co-ordinated approach to information
[12, 24, 26, 28-30, 34, 40, 42, 43, 48,
delivery
50]
TE D
M AN U
[29, 40, 42, 43, 48]
EP AC C
Being resourceful and proactive
Persisting for action and outcomes
[12, 14, 23, 24, 26, 27, 29, 30, 34, 43,
Having to run after staff for information
Being ignored or undervalued
4.
[28-31, 40, 47, 48]
[12, 20, 23, 29, 36, 42, 43, 46, 48, 49, 51] [23, 28, 29, 41, 43, 46, 47, 49, 51]
[13, 28, 29, 35, 36, 40, 42, 43, 45, 4851]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
RI PT
No. Staff were always busy
[29, 43, 48, 51]
SC
Annoying and upsetting staff to get results
M AN U
Ignoring carers compromises outcomes
Being protective of SS
[42, 45, 49]
Concerns about care and insufficient therapy
[13, 28, 29, 35, 40, 42, 45, 49, 50]
TE D
[13, 45]
Wanting personalised dialogue and information
EP
Being legitimate clients
[42, 43, 45, 51]
Observing demeaning conduct
AC C
5.
[20, 29, 36, 42, 43, 45]
[12-14, 20, 23-26, 29, 31, 33-44, 47-52] [14, 20, 23, 26, 29, 38, 39, 42, 47, 48, 50, 51]
Staff focusing only on the SS
[12, 20, 25, 26, 36, 37, 42, 43, 49, 52]
Addressing intimacy following stroke
[34, 44]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
No-one prepares the carer
RI PT
No. [23, 24, 29, 31, 50]
SC
Needing a family centred approach
Navigating an alien culture and
TE D
environment
41, 42, 47, 49] [12, 23, 26, 34, 37, 40, 42, 47, 52] [12-14, 23, 24, 26-40, 42, 43, 45-49, 51, 52] [12, 32, 42, 45, 48, 51]
Dependent/ reliant on staff
[23, 28, 29, 45, 46, 48]
EP
Adversarial relationships with staff
Health literacy matters
AC C
6.
M AN U
Carers not systematically involved
[12, 13, 20, 29, 31, 33, 35, 36, 38, 39,
[12, 23, 29, 34, 36, 37, 42, 43, 47, 48, 51]
Carers don’t know what they don’t know
[12, 27, 29-31, 34, 43, 51]
Communication eases alienation
[14, 24, 30, 35, 36, 40, 42, 48, 51]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
‘The system’ as a barrier to good care
RI PT
No. [12, 27-29, 32, 36, 38-40, 42, 47, 48,
Staff not working as a team
SC
51]
TE D
Managing the transition home
EP
Preparedness for discharge
Looking to the future
AC C
7.
M AN U
Staff providing support and encouragement
Strategies for managing stress
[37, 40, 42, 48] [12-14, 26-29, 31, 33, 36, 40, 42, 47, 49, 52] [12, 13, 20, 23-29, 31, 33-36, 39, 43, 44, 46, 47, 49-52] [12, 23, 26, 27, 29, 31, 33, 35, 36, 39, 46, 51, 52] [12, 28, 31, 35, 39, 46, 47, 49] [12, 13, 23, 25, 36, 39, 52]
ACCEPTED MANUSCRIPT
Analytic themes
Descriptive themes
Source Documents
A changed relationship and life roles
RI PT
No. [12, 13, 20, 29, 34, 36, 44, 46, 47, 49,
SC
50, 52] [27, 35, 52]
Sourcing support for and from home
[12, 23-27, 29, 31, 33-35, 39, 43, 49-52]
AC C
EP
TE D
M AN U
Home and hospital are different
Medline (n=176)
CINAHL (n=700)
PsycINFO (n=50)
Additional records identified through other sources
(n=3532)
(n= 0)
SC
Records identified through database searching
Records after duplicates removed
M AN U
(n=2852)
Records screened
EP
TE D
Full-text documents assessed for eligibility (n=93)
AC C
Eligibility
(n=2852)
Included
Web of Science (n= 1375)
RI PT
Embase (n=1231)
Screening
Identification
ACCEPTED MANUSCRIPT
Records excluded (n=2759)
Full-text documents excluded with reasons (n=59)
• • • • • •
Wrong study design (n=9) Not inpatient rehab setting (n=27) Not carer perspective (n=4) Conference abstract (17) Full text unavailable (n=1) Core quality criteria not met (n=1)
Included in qualitative synthesis (n=34 documents (33 studies)
Figure 1 Flow chart of search and screening process (Moher et al 2009) [22]
ACCEPTED MANUSCRIPT
Online Appendix 1: Search strategy for Ovid Medline SPICE:
Setting: inpatient stroke rehabilitation facilities; Perspective: carers of stroke
survivors; Intervention: interventions for stroke survivors and/or their carers; Comparison: n/a;
RI PT
Evaluation: the experiences, needs and preferences of carers. Our search reflected the approach recommended by Shaw and colleagues [65], where the search used thesaurus terms, free-text terms and broad-based terms. Medline
SC
Search term Perspective
exp Stroke/
2.
exp Family/ or famil*.mp.
3.
hospital volunteers.mp. or Hospital Volunteers/
4.
visitors to patients.mp. or exp Visitors to Patients/
5.
Carer*.mp.
6.
caregivers.mp. or exp Caregivers/
7.
exp Friends/ or friend$1.mp
8.
adult children.mp. or exp Adult Children/
9.
siblings.mp. or exp Siblings/
10.
spouse.mp. or exp Spouses/
11.
(partner$1 or husband$1 or wi$3 or defacto).mp.
AC C
EP
TE D
M AN U
1.
Hits
12.
2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 or 10 or 11
13.
12 AND 1
Setting and Intervention 14.
exp Rehabilitation Centers/ or exp Rehabilitation/ or rehabilitat*.mp. or exp Rehabilitation Nursing/
15.
(hospitali* or in?patient$1).mp.
16.
14 or 15
3884
ACCEPTED MANUSCRIPT
17.
13 AND 16
1041
Evaluation Qualitative Research/
19.
Cohort Studies/
20.
Observational Study/
21.
Focus Groups/
22.
Interview, Psychological/ or Interview/
23.
((semi-structured or semistructured or unstructured or informal or in-depth or indepth or face-to-face or structure or guide) adj3 (interview* or discussion* or question?aire*)).mp.
24.
(ethnograph* or fieldwork or 'field work' or 'key informant').mp.
25
18 or 19 or 20 or 21 or 22 or 23 or 24
320390
26
17 AND 25
176
AC C
EP
TE D
M AN U
SC
RI PT
18.
ACCEPTED MANUSCRIPT
Online Appendix 2: Expanded study characteristics
[carers of SS]
Ang [23] 2013
10
Singapore
[Adult children, spouses]
Avent [24]
16
2005
Methodological approach; theoretical framework
Health care professionals
Qualitative descriptive
Semi-structured interviews
nil
Qualitative
Focus groups
nil
unclear
nil
Grounded theory
[adult children, spouses, parent]
USA
Bertilsson [25] 2015
[Spouses, adult daughters] 7 [spouses]
Sweden
2013
24 [Adult children, spouses]
Canada Cameron [27] 2014
15 [Adult children, spouses, grandparent, friend]
Health care professionals
Qualitative; ‘timing it right’ framework
AC C
Cameron [26]
TE D
UK
21
EP
Bailey* [21] 1997
Data collection
Stroke survivors, health care professionals
Qualitative descriptive
Time of data collection
RI PT
[language]
Other participants
Just prior or after hospital discharge
SC
Participants n = 452
Aim
To find out more about healthcare professionals' and caregivers’ perceptions of educational needs while the stroke survivor is still in hospital
1 – 13 years post stroke
To determine what information family members need during 3 phases of aphasia: acute, initial rehabilitation and chronic
Questionnaire
unclear
To survey the views of carers of stroke patients regarding the service offered by physiotherapy to both carer and patient
Semi-structured interviews
At start and end of rehabilitation, 6 and 12mths follow-up
To explore and describe if and how a clientcentred ADL intervention was integrated in the everyday lives of significant others of people with stroke
Structured interviews
1mth to >1yr post-stroke
Explore the support needs over time from the perspective of family caregivers, and from the perspective of health care professionals. To compare and contrast these perspectives.
Semi-structured interviews face to face, follow-up interviews by phone
During IP rehabilitation, some follow-ups 4wks post discharge
To obtain an in-depth understanding of patients’, family caregivers’, and health care professionals’ perception of Weekend Passes and its role in facilitating the transition home
M AN U
First author, year, country
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
Other participants
Methodological approach; theoretical framework
Data collection
Canada
2000
46
Stroke survivors
Qualitative; ethnographic strategy
5 structured interviews
Stroke survivors
Grounded theory; symbolic interactionalism
Stroke survivors
Qualitative descriptive
Stroke survivors
Qualitative
[spouses]
To examine, in a group of stroke patients and their spouses, their perceptions of stroke, information received about it, its management and its rehabilitation
2 interviews, open ended questions
During inpatient rehabilitation, and 4mths postdischarge
To explore caregivers’ perceptions about interactions with providers in rehabilitation, and how these experiences affected caregiver preparation
Semi-structured interviews
1- 14yrs post stroke
To describe the experience of stroke for survivors and their caregivers in rural Appalachian Kentucky
Semi-structured interviews
Within 2wks of rehabilitation discharge
To develop the understanding of what constitutes a ‘good’ or ‘poor’ experience in relation to the transition from hospital to home following a stroke
Qualitative
Semi-structured interviews
During rehabilitation admission
To explore factors affecting the ability of the stroke survivor to drive their own recovery outside of therapy during inpatient rehabilitation
Grounded theory; phenomenological framework
Semi-structured interviews
At the end of the rehabilitation intervention
To explore the impact of family involvement in exercise delivery after stroke from the perspective of the individual with stroke and his or her family member
2013
17 [Adult children, spouses]
2013
12 [Adult children, spouses]
USA Ellis-Hill [31] 2009
13 [Adult children, spouses]
UK
2014
6 [main carers]
Australia Galvin [33] 2014
15 [Adult children, spouses]
Stroke survivors, health care professionals
AC C
Eng [32]
EP
Danzl [30]
TE D
USA
Stroke survivors
M AN U
Australia Creasy [29]
Aim
Acute inpatient, rehabilitation inpatient, and first 12mths home
SC
Clark [28]
Time of data collection
RI PT
First author, year, country
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
Other participants
Methodological approach; theoretical framework
Data collection
Ireland
2005
16
Modified grounded theory
Open ended question interviews
Stroke survivors
Qualitative descriptive
Semi-structured interviews
1 month postdischarge
To enhance our understanding of the transition experience for clients with stroke and their carers during discharge and the first month at home
nil
Grounded theory
Semi-structured interviews
Within 3mths of rehabilitation discharge
To understand significant others’ experience of aphasia rehabilitation within the context of post-stroke rehabilitation
Stroke survivors, carers not involved in IP rehabilitation
Critical incident technique; teamwork framework
Semi-structured interviews repeated 2-3 times
Discharge from acute, during inpatient rehabilitation, 3mths after being home
To explore patient and carer perceptions of good and poor teamwork and its impact on experiences of care
[relationships unknown]
2013
5 [Adult children, spouses, friend]
Halle [36] 2014
12 [Spouses, friends, mothers]
2015
4 [Adult children, spouses]
UK
Howe [12]
48
Australia
[Adult children spouses, siblings, other family]
Hunt [13]
4
2012
AC C
Hewitt [37]
EP
Canada
TE D
Australia
M AN U
UK Gustafsson [35]
2, 20 or 90 days post-stroke
Aim
Stroke survivors
SC
Garrett [34]
Time of data collection
RI PT
First author, year, country
To discover the perceived information needs of patients and their carers about when, by whom and what format information is given
nil
Qualitative descriptive; constructivist paradigm
Semi-structured interviews
3 - 195mths post-stroke
To identify the rehabilitation goals that family members of individuals with aphasia have for themselves
nil
Interpretive phenomenological
Semi-structured
During rehabilitation
To explore the experiences of members of families who are involved as carers of stroke
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
2004
Other participants
[Adult children, spouses]
Methodological approach; theoretical framework
Data collection
analysis; phenomenology
interviews
survivors, in the early caring period before patients return home
nil
Grounded theory
In-depth interviews 2 times
1st interview during rehabilitation admission, 2nd interview 1 year after
To investigate the need for professional assistance in carers of stroke patients who do not require a therapeutic group intervention, and how this need for assistance is changing in the course of rehabilitation
Stroke survivors, health care professionals
Constructivist grounded theory
nil
Lifeworld phenomenological approach; phenomenology
[Spouses]
Semi-structured interviews
During rehabilitation admission
To investigate, by observation and interview, the application of goal setting during a series of cases of inpatient stroke rehabilitation
Semi-structured interviews
During rehabilitation admission
To describe how wives and daughters, who are family members of stroke survivors, experience their specific situation
M AN U
Germany
[Adult children, spouses]
New Zealand Lindquist [20] 2002
5 [spouses, adult daughter]
EP
2011
7
Sweden
2011
15 [Adult children, spouses, parent]
USA Morris [40]
5
AC C
[Swedish] Lutz [39]
TE D
[German] Levack [38]
SC
2008
10
Aim
admission
UK Jungbauer [14]
Time of data collection
RI PT
First author, year, country
Stroke survivors, case managers
Grounded theory; symbolic interactionism
2 semi-structured interviews
1st interview near inpatient discharge, 2nd at 6mths postdischarge
To explore the needs of stroke patients and their family caregivers as they transition through the stroke care continuum from acute care to inpatient rehabilitation to home
Stroke survivors,
Qualitative
Focus groups
4 -18mths post
To study the experiences of patients, carers and staff throughout a hospital stroke care
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
2007
[relationships unknown]
Other participants
Methodological approach; theoretical framework
Data collection
health care professionals
pathway
Qualitative
During rehabilitation admission
To examine stroke patients’, carers’ and volunteer supporters’ experiences of peer support groups during hospital rehabilitation
Stroke survivors, health care professionals
Qualitative; phenomenological orientation
a/a
a/a
a/a
14
Stroke survivors
[spouse, siblings]
Canada Rochette [43]
[Adult children, spouses, siblings, other family, friends]
2014b
Schmitz [44] 2010
[Spouses]
USA Secrest [45] 2002 USA
7 [Adult children, spouses]
Qualitative
AC C
Canada
TE D
2014a
30
EP
Rochette [42]
Interviews (n=25), Focus groups (n=5)
Interviews during acute& rehabilitation admission, focus group 4-6wks after discharge
To document the ethical issues regarding the systematic inclusion of relatives as clients in the post-stroke rehabilitation process
a/a
a/a
To document the gap between actual and desired ideal services for relatives poststroke from 3 perspectives: relatives, stroke clients and health professionals
Semi-structured interviews
At least 6mths post stroke
To study the perspectives and experiences of stroke survivors and their partners regarding sexual issues and perceived rehabilitation needs
Semi-structured interviews
Time since stroke unclear
To explore experiences with rehabilitation nursing care of stroke survivors and their primary support persons to gain insight into their perceptions of nurses' role in promoting quality of life
M AN U
UK
Stroke survivors
Semi-structured interviews, questionnaires
SC
2012
Stroke survivors, peer supporters
3
Qualitative; existential phenomenological orientation
Aim
stroke
UK Morris [41]
Time of data collection
RI PT
First author, year, country
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
Silva-Smith [46]
12
Smith [47] 2008
nil
Grounded theory
2 semi-structured interviews
nil
Qualitative
Semi-structured interviews
Stroke survivors
Qualitative
nil
Phenomenological hermeneutic methodology
[Adult children, spouses, sibling, parent] 9 [Adult children, spouses, sibling]
Canada Tyson [48] 2014
6 [Spouses, parent]
Wiles [50] 1998
12 [Adult children, spouses]
UK
Wu [51] 2014 [thesis]
17 [Adult children, spouses, other
Stroke survivors
EP
Sweden
[Adult children, spouses, other family, friend]
Grounded theory
AC C
2008
16
TE D
UK Wallengren [49]
Data collection
Stroke survivors
Qualitative descriptive
Time of data collection
1st interview before discharge, 2nd 4wks post discharge
SC
USA
Methodological approach; theoretical framework
Aim
To describe the process associated with preparing for and beginning a new caregiving role following a family member's stroke
Within 6mths of stroke
To learn about family care-givers' experiences and support needs during the rehabilitation phase to inform program development (especially interested on the influence of age)
Focus groups
Within 1yr of rehabilitation discharge
To investigate service users (stroke survivors and caregivers) experiences and views of the rehabilitation assessment process
Open ended question interviews
During stroke unit admission
To illuminate the meaning of going from being just a relative to gradually becoming a relative to a stroke victim from the time of the stroke event and the first weeks on.
Semi-structured interviews
During hospitalization, or 1mth postdischarge, or up to 1 year postdischarge
To examine the information needs of patients and caregivers at various stages following stroke
2 semi-structured interviews, plus validation phone
During the first year post-stroke
To explore and describe the situational experience of Taiwanese family members who were learning how to become a caregiver for a stroke survivor during the
M AN U
2007
Other participants
RI PT
First author, year, country
ACCEPTED MANUSCRIPT
Participants n = 452
[language]
[carers of SS]
Taiwan Young [52]
Other participants
Methodological approach; theoretical framework
family] 14
Data collection
Time of data collection
RI PT
First author, year, country
interviews (n=4) nil
Grounded theory
1st interview inpatient rehabilitation discharge, 2nd 3 6mths postdischarge
SC
2014
2 semi-structured interviews
Interviews were conducted face-to-face unless otherwise stated
AC C
EP
TE D
*Bailey & Rennie 1997 excluded based on quality
M AN U
USA
Aim
first year after discharge To delineate critical assessment domains identified by a subset of spousal stroke caregivers
ACCEPTED MANUSCRIPT
Online Appendix 3: Appraisal of comprehensive reporting COREQ (Tong et al 2007)
Core quality criteria (Carroll et al 2004) Domain 1
Domain 2
Domain 3
(8 items)
(15 items)
(9 items)
Researcher team & reflexivity
Study design
Analysis and findings
Ang [23] 2013
4
1
9
Avent [24] 2005
3
1
6
Bailey [21] 1997
1 [study excluded]
Bertilsson [25] 2015
4
2
11
Cameron et al. [26] 2013
4
1
Cameron [27] 2014
3
2
Clark [28] 2000
2
0
Creasy .[29] 2013
3
Danzl [30] 2013 Eng [32]
SC
Inclusion score > 2/4
5
M AN U
First author/ year
RI PT
Scoring: 1 point for each reporting criteria met Total (32)
15 12
15
18
9
8
18
8
7
17
6
2
8
4
10
7
21
3
4
12
7
23
4
4
10
7
21
AC C
EP
TE D
5
ACCEPTED MANUSCRIPT
2014 3
10
7
Galvin [33] 2014
4
7
9
6
Garrett [34] 2005
4
5
7
0
Gustafsson [35] 2013
4
3
7
Halle [36] 2014
4
6
11
Hewitt [37] 2015
4
3
9
Howe [12] 2012
4
2
9
Hunt [13] 2004
4
2
Jungbauer [14]2008
3
0
Levack [38] 2011
4
3
Lindquist [20]2002
4
Lutz [39] 2011
4
Morris [40] 2007
3
20
RI PT
4
SC
Ellis-Hill [31] 2009
22 12 18
7
24
6
18
5
16
6
4
12
5
3
8
9
5
17
3
9
4
16
0
7
7
14
4
7
4
15
AC C
EP
TE D
M AN U
8
ACCEPTED MANUSCRIPT
4
0
5
5
10
Rochette .[42] 2014a
4
4
9
7
20
Rochette [43] 2014b
4
2
6
4
Schmitz [44] 2010
4
4
9
6
Secrest [45] 2002
4
5
9
Silva-Smith [46] 2007
4
3
8
Smith et al [47] 2008
4
5
11
Tyson [48] 2014
3
5
8
Wallengren [49] 2008
3
5
Wiles [50] 1998
4
4
Wu [51] 2009
4
Young [52] 2014
4
SC M AN U
3
12 19 17
6
17
8
24
7
20
9
6
20
7
3
TE D EP
AC C
RI PT
Morris [41] 2012
14
5
12
8
25
4
13
8
25
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Online Appendix 4: Themes and illustrative quotes Illustrative quotes
RI PT
Overwhelmed by emotions
“The relatives appeared to be reminded of the vulnerability of life in a distressing way. The previously familiar life situation had become strange and uncertain.” (Wallengren [49] 2008)
Coping with uncertainty
“Uncertainties and doubts emerged as participants described their experiences. There were a number of unanswered questions running through the interview.” (Hunt [13] 2004)
Feeling bewildered and shocked
“We’re still very shocked…we’re trying but we’re not coping well…our family is going haywire.” (Ang [23] 2003)
Experiencing grief and loss
“A comprehensive caregiver assessment should begin by using a crisis intervention approach to discover the nature of the event and its meaning to the caregiver, as well as the adjustment phase of the caregiver. The grief response can be strong.” (Young [52] 2014)
Experiencing stress and physical symptoms
“I myself feel pain and discomfort: The relatives themselves described [their] own physical symptoms as a result of the situation, if only for a short period of time. Their body became unfamiliar, which was uncomfortable. Symptoms [such] as nausea, tiredness, restlessness, palpitations and constipation were described. One relative had suffered from increased tinnitus.” (Wallengren [49] 2008)
Feeling distressed, fearful and anxious
“The essence of the phenomenon of being next of kin to a person who has suffered a stroke is identified as experiencing a profoundly altered way of life, where existential doubts and anxiety concerning both how one’s own as well as the sick person’s current situation characterises daily life.” (Lindquist [20] 2002)
Feeling emotionally drained and exhausted
“Being constantly vigilant and bearing sole responsibility for patient safety often left them feeling emotionally drained.” (Cameron [26] 2013)
Managing multiple demands and new responsibilities
“Elements that seemed to trigger some participants’ recognition of their personal and relational needs were experiencing post-stroke significant physical or psychological problems. For example, one participant admitted that the heart problems he/she had were probably a consequence of increased responsibilities towards his/ her family member/ friend.” (Halle [36] 2014)
Responsibility creating resentment and guilt Staying positive and hopeful
TE D
M AN U
SC
Vulnerability of SS confronting
EP
1.
Themes
AC C
No.
“Carers can become resentful which in turn leads to feeling: ‘really guilty because you’ve got a good mother and suddenly you feel very guilty because you resent the fact that one’s own needs have to be sacrificed (Rachel).” (Hunt [13] 2004)
“Older carers … focused on keeping a positive outlook and looking on the bright side.” (Smith [47] 2008)
ACCEPTED MANUSCRIPT
Themes
Recognition as a stakeholder in recovery
“Oh yeah, I’ve been with her for a walk everyday and I’ll definitely continue with that. [Family Member 03].” (Galvin [33] 2014)
Making sacrifices and prioritising the carer role
“One caregiver stated bluntly, ‘I’ve gotten hurt. I’ve hurt my knee... I’ve hurt my back. I’ve had a cortisone shot in my back’. She also stated, ‘I will do this until the day that we finally both crash to the floor or I break a hip or he breaks a rib. Then we will both end up in a nursing home together’ [Carer 14].” (Young [52] 2014)
Understanding the rationale for rehabilitation therapy
“Knowing what to do and why: Carers raised a lack of knowledge as a key hindrance to stroke survivors driving their own recovery outside of therapy. Not knowing ‘what they could be doing themselves’ outside of therapy and the ‘ambiguous’ limits and guidelines unaddressed by therapy related clinical staff of whether they should ‘push some more’ were viewed as particularly limiting.” (Eng [32] 2014)
Carers know the SS
“A few caregivers discussed how providers engaged them as experts in patients’ normal/baseline status, and how the information they provided served to assist providers in care.” (Creasy [29] 2013)
Managing the emotions of SS
“A few caregivers mentioned that they would like to know how to pacify and motivate the stroke survivor as well as how to manage his/her expectations for independence.” (Ang [23] 2013)
Knowing expected recovery
“Because families and patients often arrived at the IRF [inpatient rehabilitation facility] with specific goals and timelines for recovery that did not always coincide with that of the healthcare team, it was important for providers to explain the rationale for treatment and discharge criteria as early as possible. When this information was not provided or understood, both patients and families became frustrated, confused, or even hesitant to continue with treatment.” (Creasy [29] 2013).
Getting updated on progress
Requesting individualised care
TE D
M AN U
SC
Carers engaging with therapy and care
EP
2.
“When I first came to the clinic, I was scared. The therapist gave me the number of one of the other spouses. Talking to someone helps you, your kids and your family know what happened…the best thing that always happened was talking to someone who’s done it” (Avent [24] 2005)
RI PT
Support from others relieves distress
Illustrative quotes
AC C
No.
“Another difference between acute care and rehabilitation was the opportunity for relatives to attend a team meeting, which was more frequent in rehabilitation than in acute care: ‘… they meet to review his case, how things are progressing, then they tell us about it, they give us a report each time’ [Relative 18].” (Rochette [43] 2014) (actual versus ideal) “The carer group believed that patients’ care was often too standardized and not delivered in a way that met their
ACCEPTED MANUSCRIPT
Illustrative quotes individual needs.” (Morris [40] 2007).
Being opportunistic and observant
“Others suffered from not being adequately informed about how seriously afflicted the stroke victim was. The uncertainty drove them to literally examine the stroke victim’s functions. If the stroke victim exhibited stability or progress, the hope for a future life increased. Some watched, observed and assessed the seriousness of the situation based on the caregivers’ [staff] behaviour.” (Wallengren [49] 2008)
RI PT
and information
SC
Desire to be heard and informed
“Perceived impacts that were reported largely concerned feelings of confidence, reassurance and safety when communication was perceived to be good and stress, annoyance and anxiety when it was not.” (Hewitt [37] 2015)
Disempowered through lack of information
“This state of ‘not knowing’ was very distressing for people as can be seen in the follow quote from the wife of Mr Cox…She had been trying to find out when physiotherapy would take place: ‘Cos I said, you know, ‘it’s been over a week now’ and I feel it’s really bad that he’s had nothing, professionally’ [13 Carer].” (Ellis-Hill [31] 2009)
Learning the consequences of stroke
“The physical consequences of stroke, in particular the specific impairments and disabilities caused by stroke, were an enduring theme. There was little early appreciation of social and psychological consequences of stroke, such as cognitive problems, depression, and loss of confidence. These problems were increasingly recognized with time, particularly by spouses.” (Clark [28] 2000)
Needing a range of information topics and formats
“Participants wanted information about a variety of topics such as aphasia, stroke and the services available. They wanted information to be available in a variety of formats and to be offered to them systematically.” (Howe [12] 2012)
Information is a form of support
“Participants described the need for clear education and communication from providers during the acute care phase. Caregivers that were informed each step of the way perceived providers as caring.” (Danzl [30] 2013)
Needing different information at different times
“The type of information needed also changed over time. At the time of the acute stroke event, needs largely focused on diagnosis and treatment. After the patients’ medical condition stabilized, information needs became more diverse and related to recovery and rehabilitation. During the preparation and implementation phases, needs were largest and most diverse as they related to long-term treatment goals, providing care, negotiating community care, secondary prevention, and navigating the health care system. During the adaptation phase, needs focused mainly on avoiding future strokes and enduring care needs.” (Cameron [26] 2013)
Having to run after staff for information
TE D
M AN U
Inclusion promotes confidence
EP
3.
Themes
AC C
No.
“Information seeking on the part of relatives was perceived as being the norm: ‘I tell you, it’s the same everywhere. Here [in rehabilitation] or in acute care, it’s just the same thing. If you want information, you have to run after it
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No.
Themes
Illustrative quotes yourself.’ (Relative 23T2).” (Rochette [42] 2014) (ethical issues)
Being ignored or undervalued
“Despite constantly sitting by the side of the stroke victim and expressed need for support from the caregivers, the relatives felt invisible. They described feelings of alienation and reduced subjectivity, when only being paid limited attention. There were also feelings of invisibility and insignificance in interactions and contacts with caregivers. They expressed that caregivers did their job without any interest in or commitment to them.” (Wallengren [49] 2008)
Being resourceful and proactive
“Although participants expected professional staff to teach them what they needed to know, the information was not always forthcoming. More assertive participants asked for information. Other participants waited and, in the post discharge interview, described how they managed without it or sought out other sources for the information”. (SilvaSmith [46] 2007)
M AN U
SC
RI PT
“It is suggested that the lack of clear structure for imparting information may lead to missed opportunities. This situation could be minimised by adding clearly defined, timed prompts to stroke care pathways that would guide healthcare workers to provide the required information in suitable formats adapted to individual need”. (Garrett [34] 2005)
Persisting for action and outcomes
“Providers were ‘too busy’ or just in it ‘for the job – ‘The technical side works…The personal side does not work’ [Carer 12]”. (Creasy [29] 2013)
Annoying and upsetting staff to get results
“When they take initiative to communicate themselves, they are concerned that they will be perceived as nagging and difficult family members.” (Lindquist [20]2002)
Ignoring carers compromises outcomes
“He noted that ‘they were so used to people corning in bitching and complaining and grousing about the way their family member was being treated, they didn’t pay any attention to it or notice what you said’”. (Secrest [45]2002)
Observing demeaning conduct
“As a nurse, by profession, she allegedly witnessed many untoward sequalae from the nurses’ poor decisions. She said she and her mother needed ‘to be vigilant’”. (Secrest [45] 2002)
Being protective of SS
Concerns about care and insufficient therapy
EP
TE D
Staff were always busy
AC C
4.
Wanting a co-ordinated approach to information delivery
“When a relative was present, it was perceived as a protective factor for the stroke-client ‘And if I’d not been there she wouldn’t have received anything for the three weeks she was there [in acute care], and so in a three-month period, we would have lost three weeks [of intensive rehabilitation]’ (Relative 7T1).” (Rochette [42] 2014) (ethical issues)
“They [patient notes] don’t get read through, [the patient] had notes of how he should be positioned in bed, the physio and OT spent a long time doing it, and I know the people that put him to bed didn’t look at it and I just
ACCEPTED MANUSCRIPT
No.
Themes
Illustrative quotes thought ‘what a waste of time’”. (Morris [40] 2007)
RI PT
“Emotional support in the inpatient rehabilitation phase was desired mostly by young female spouses. They wished for a receptive, personal and trustful contact with the care giver as well as relieving and encouraging talks.” (Jungbauer [14] 2008)
Staff focusing only on the SS
“A few participants had tried to bring up some of their personal needs with a rehabilitation professional, but they got responses that demonstrated and reinforced that rehabilitation was not for them” (Halle [36] 2014)
Addressing intimacy following stroke
“A female partner echoed a common belief that a lack of education or experience may account for the perception that rehabilitation professionals are uncomfortable talking about sexual adjustment with their patients: ‘Because they haven’t been educated themselves or [had] enough education or enough being open. They might be a little inhibited themselves’”. (Schmitz [44] 2010)
No-one prepares the carer
“The family members discussed the overwhelming nature of this experience and the lack of prior knowledge about stroke and aphasia. According to one participant, ‘you're so overwhelmed you don't know what you need’ and ‘It is hard to get [IwA] back like before and no one prepares you for what you go through and how difficult it is to get [IwA] communicating again’.” (Avent [24] 2005)
Needing a family centred approach
“Staff presence was important to me as they can put in a professional viewpoint...being there and hearing carers’ concerns helps the staff to understand the difficulties that carers and families have [Carer 3]”. (Morris [41] 2012)
Carers not systematically involved
“Relatives are still not systematically included as clients post-stroke, which a family-centered approach would favour.” (Rochette [42] 2014) (ethical issues)
Navigating an alien culture and environment Adversarial relationships with staff Dependent/reliant on staff Health literacy matters
TE D
M AN U
SC
Wanting personalised dialogue and information
EP
6.
Being legitimate clients
AC C
5.
“Throughout these transcripts, there was a sense that the PSP [primary support person] was an outsider and at times, an actual intruder into the rehabilitation process.” (Secrest [45] 2002) “Most caregivers, however, relied on their healthcare providers and were left without necessary assistance if providers did not give them this information. ‘I don’t really know what to expect’ [Carer 9].” (Creasy [29] 2013) “Self or relative being part of the health care system was perceived by all as a protective factor because … they know better who to ask (more effective seeking), they may facilitate communication with health professionals (as perceived by health professionals) but they may also be more demanding as they know the constraints of the system
ACCEPTED MANUSCRIPT
No.
Themes
Illustrative quotes and want to access the best for their relative.” (Rochette [43] 2014) (actual versus ideal)
Communication eases alienation
“Clear communication between the rehabilitation team, the client, and the carer was emphasised as an important process in planning for discharge. The family conference, which occurred in the weeks early after admission and in the weeks prior to discharge were highlighted as an important time for the client, family and rehabilitation team to openly discuss issues and future plans.” (Gustaffson [35] 2013)
‘The system’ as a barrier to good care
“A truly ‘patient-centered’ approach to rehabilitation may require a significant shift in the way clinicians think about goal setting and rehabilitation. Clinicians would need to be open to the possibility that anything a patient or family member introduces during goal setting sessions should at least be considered for discussion. This might require clinicians to consider topics outside the traditional scope of inpatient rehabilitation.” (Levack [38] 2011)
Staff not working as a team
“Some participants … were irritated when staff asked ‘the same questions all the time’ without explanation…’. There is no liaison whatsoever between all these different people, and …you go through the same thing again…But they [health professionals] should’ve had all that and know this.’ [Carer 4].” (Tyson [48] 2014)
Staff providing support and encouragement
“Caregivers were happy when they received support from others – including healthcare professionals, family members, friends, and neighbors – and they experienced stress when these supports were not in place.” (Cameron [27] 2014)
Preparedness for discharge
SC
M AN U
TE D
“People described feeling abandoned and unsupported when they were discharged suddenly or sooner than they had been expecting…. ‘I was very surprised when I picked up the phone and there’s this answer: ‘This is the physiotherapist at [ASU], your wife is ready to collect. Would you come and collect her?’. . . When she came out she had a green bag with her belongings in and when I looked at it later there were just three envelopes addressed to the district nurse and the doctors and I had no means of taking it then ‘cos my daughter-in-law had gone back and I didn’t want to leave her on her own . . . So, I wasn’t able to contact them, it being Saturday or Sunday, until Monday and they knew nothing about it at the GP surgery. They said they normally get a fax which they hadn’t had.’ [109C]” (Ellis-Hill [31] 2009)
EP
Managing the transition home
RI PT
“They needed to actively raise questions to get an understanding and more explanation from their physicians. However, family caregivers indicated they had no ideas how to ask a question because they lacked experience and were unfamiliar with these situations.” (Wu [51] 2009)
AC C
7.
Carers don’t know what they don’t know
Looking to the future
“Primary caregivers … typically assumed the stroke survivor would be able to stay in the IRF until he or she was able to at least assist with most ADLs and IADLs and be able to be alone at least for short periods of time. ‘But I, I
ACCEPTED MANUSCRIPT
Themes
Illustrative quotes
RI PT
really feel like that by the time we go home, he is going to be able to do enough that I can assist him’. [C-1]” Lutz [39] 2011 “Everyday life is the important thing. It really is. Normal everyday life. Really. When everything’s normal and you drink tea in the evening and watch TV. It’s quiet and comfortable and then something special – like when the grandkids visit, or when we get together with them like we usually do on Saturdays and go out to lunch.” (Bertilsson [25] 2015)
A changed relationship and life roles
“One sister struggled with balancing the role of caregiver with those of sister and friend... ‘It’s hard playing these different roles. . . . You get into this caregiver thing where you kind of tell her what to do. . . . Sometimes it’s nice just to be friends too. It’s kind of harder to do that though. . . . It’s hard just to relax and enjoy going out with her when you’re worried about what she’s eating and what she’s drinking’”. (Silva-Smith [46] 2007)
Home and hospital are different
“For those [carers] who were able to attend training at the inpatient rehabilitation facility, the skills they learned often did not transfer well to the home setting.” (Young [52] 2014)
Sourcing support for and from home
“Carers identified the need for detailed information to be provided at an early post-stroke stage so that prompt applications for help and assistance could be made which would prevent anxiety about how they were going to cope. “ (Wiles [50] 1998)
EP
TE D
M AN U
SC
Strategies for managing stress
AC C
No.