The experiences of stroke survivors, their families and unpaid carers regarding goal setting within stroke rehabilitation: a systematic review protocol

Review question/objective The overall aim of this qualitative systematic review is to explore the personal experiences of stroke survivors, their families and unpaid carers in goal setting in stroke rehabilitation. The objectives of this review are to: Describe the experiences of stroke survivors, their families and unpaid carers in goal setting in stroke rehabilitation Identify whether stroke survivors, their families and unpaid carers consider the impact of goal setting on the person-centeredness of the rehabilitation approach Ascertain whether stroke survivors, their families and unpaid carers consider if goal setting enables them to effectively self-manage their condition. Background Stroke is one of the leading causes of disability in adults and significantly affects the lives of individuals and their families, as well as the health and economy of a nation.1,2 Stroke affects individuals in different ways and is associated with a wide range of disabilities.3 It is recommended that individual needs and preferences are accounted for in the planning and delivery of stroke rehabilitation services, as part of a “patient-” or person-centered approach.4 Person-centeredness is now widely accepted as beneficial for people living with long-term conditions, such as stroke.5 It has become an increasingly important concept in healthcare and rehabilitation over the past two decades,6 with momentum building in the past five years.5 It has been described as a “philosophy or approach to the delivery of rehabilitation services that reflects the needs of individuals … rather than professionals”, involving patients actively managing their own healthcare and rehabilitation, in collaboration with health professionals and service providers who “understand and respect their individual needs”.7(p1416) Despite person-centeredness being widely recognized as a cornerstone in the management of long-term conditions, progress in implementation has been slow.5 Increasing numbers of people live with long-term conditions, which they manage independently for most of the time. The impact of this on health services is enormous. Supporting self-management complements the philosophy of person-centered care, helps people further develop skills to help themselves, improves quality of life and changes the way people use health services by reducing dependence.8 As one person with a long-term condition, Anya de Longh, described it, supporting self-management “creates more sustainable lives, which will in turn lead to a more sustainable NHS”. She highlights three key enablers of self-management support: “setting an agenda, setting goals, and follow-up”.9(p2) Goal setting has been recognized as a key element within rehabilitation.10 It can provide a tool to facilitate person-centeredness in healthcare decision-making11 and self-management,8 and can support people to find new ways of coping.12 Involving people experiencing neurological conditions, such as stroke, in goal setting confers potential benefits within rehabilitation, such as improving patient satisfaction and the relevance of goal setting,13 and is recommended within clinical guidelines for stroke rehabilitation.14–16 Agreement exists that involving stroke survivors in rehabilitation goal setting is beneficial. However, robust empirical evidence to support it remains lacking,10 there remains debate as to how it should best occur,11 and evidence suggests its use is not optimal.17 Various barriers have been cited, including insufficient time and resources,18 fear of losing professional authority,19 cognitive and communication impairments, and a lack of readiness to set goals.20 More recently it has also been highlighted that individual differences and preferences affect a person's ability and desire to be involved in goal setting, and different approaches to goal setting will likely be optimal for different individuals within the same “patient” population.21,22 Stroke survivors and professionals have different perspectives on goal setting after stroke, use different languages to describe goals, and stroke survivors often feel unclear about their role in the process.23 Rosewilliam et al., in their systematic review of stroke rehabilitation goal setting, reported that stroke survivors were motivated to be involved but perceived themselves as passive and not in control of their goals, which they attributed partly to a “prescriptive and inflexible” health system.10(p505) Katie Campion, a senior neurological therapist, gives an illuminating example, highlighting the importance of language in goal discussions. When discussing goals with a stroke survivor she was working with, he suggested his “goal” was “to find the middle” (referring to the physiotherapist's quest to help him find midline in sitting). However, when asked what his “hopes for the future” were he said, “to go back to work”.24(p1) Thus, it is crucial to the advancement of person-centered goal setting after stroke that we understand the perspective of the stroke survivor more comprehensively and accurately. There is also evidence to suggest that the impact of having a stroke on one's relationships with close family members is powerful. Brown and colleagues reported that close involvement of family members was both a source of encouragement and support, and a source of tension.21 Martin and colleagues highlighted the importance of social connectedness for better health outcomes and a more positive sense of self.25 On the other hand, Murray and Harrison reported that stroke had a potentially negative impact on romantic and sexual relationships, and placed increased pressure on family relationships.26 Salter and colleagues suggested that people post-stroke become more withdrawn to avoid burdening family and friends.27 Stroke survivors interviewed by Boger et al. identified informal (unpaid) carers as having potential to help or hinder their ability to self-manage their condition, and often acted as advocates for them.28 Over recent years there has been an ongoing drive towards specialist stroke rehabilitation in the home environment from an earlier stage post-stroke.4,15,29 Given a significant proportion of stroke survivors rely on help from others for everyday activities,30 many of whom will be close family members, it is important we also better understand the perspectives of the family and carers of stroke survivors. An initial search of the literature published prior to August 2014 was completed using the following databases: AMED, EMBASE, MEDLINE, BNI, CINAHL, the COCHRANE and PROSPERO databases, and the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports. This search found two systematic reviews that had considered stroke survivors’ experiences of goal setting in stroke rehabilitation as part of a mixed review. Rosewilliam et al. completed a systematic review of the qualitative and quantitative literature, up until June 2010, which aimed to map the nature and extent of application of “patient-centered” goal setting in stroke rehabilitation and to examine the evidence for any effects of its application.10 Their investigation of “patient” experiences focused on barriers and facilitators, as well as comparisons of “patient” and professional views. They did not include case studies. Sugavanam et al. completed a systematic review of the qualitative and quantitative literature, until April 2011, looking at both the effects and experiences of stroke rehabilitation goal setting, and included the experiences of both stroke survivors and their treating professionals.23 Both of these reviews have provided helpful insights into the perceptions of stroke survivors, in particular, comparing and contrasting them with those of professionals. However, over the past four years, since the end of the most recent review, there have been significant developments within stroke rehabilitation, in particular, an increased emphasis on person-centered goal setting. For example, in the United Kingdom, a fourth edition of national stroke guidelines has been published,15 highlighting the importance of “patient” involvement in goal setting, a repeated national audit of stroke care and rehabilitation has been conducted,30 and the National Institute for Health and Care Excellence (NICE) guidelines for long-term rehabilitation after stroke have been published.4 In addition, it is being increasingly recognized that a greater understanding of patient experience is required,31 leading to researchers choosing to further explore the experience and perspective of the stroke survivor.21,28 It is, therefore, important that this review includes literature up until the start date of the review (September 2015 or beyond). This will capture new data added to the body of knowledge since the end of the previous reviews, and allow for a re-synthesis of the data as a whole. This review also intends to explore the experiences of unpaid carers and family members specifically, which no other review has done to date. This review will include qualitative research evidence of any methodology with the aim of gaining the broadest and most accurate insight possible into the experiences of stroke survivors, and their families and unpaid carers. In conclusion, this review aims to look at the qualitative evidence available internationally regarding the experiences of stroke survivors, and their families or unpaid carers, of goal setting after stroke. It is anticipated that this knowledge will enhance our understanding of person-centered goal setting in stroke rehabilitation, which aims to place the person, their family, and their unpaid carers at the center of the rehabilitation process. Inclusion criteria Types of participants This review will consider studies that include adults (18 years old and over) who have experienced a stroke and undergone rehabilitation (as an inpatient or an outpatient), and their families and unpaid carers. Family members who care directly for their stroke survivor spouse or relative will be included. Family members who do not provide direct care but live with their stroke survivor spouse or relative will be included. Others who provide direct care, but are not paid or related to the stroke survivor, will be included. Paid carers (non-family) or family members who neither live with nor care for a stroke survivor will be excluded. Phenomena of interest Studies that investigate the experiences of stroke survivors, their families and unpaid carers regarding goal setting within rehabilitation will be considered. Studies investigating stroke rehabilitation goal setting as the entire focus, or those where it is investigated as a sub-section, will be considered. There exists a range of definitions of goal setting within rehabilitation. This review will use the definition of a goal agreed upon by an expert consensus through the use of a modified Delphi technique:11(p338) “A goal can be described as how things will be at some specified time in the future and that it is a desired state that requires both action and effort.” Goals may be long, medium or short term in nature, and these carry different characteristics. Long-term goals, also described as aims, are those “set at the limits of the foreseeable future”. They are built upon a stroke survivor's life values and priorities, and usually focus on social roles and participation.11 (p338) Intermediate or medium-term goals, also described as objectives, should be linked to aims and usually focus on activities.11 Short-term goals, also described as targets, should be linked to an objective and may be set at any functional level.11 This review will include the setting of goals, of any timeframe, which fit any of the above descriptions, within rehabilitation after stroke. Context Studies that explore the experiences of stroke survivors who have undergone rehabilitation in acute and community hospitals, inpatient rehabilitation units and the community (either in their own homes or in a residential or nursing home setting) will be considered. Types of studies Studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography and action research will be considered. Search strategy The search strategy aims to find both published and unpublished studies. A four-step search strategy will be utilized in this review. An initial limited search of MEDLINE, AMED, CINAHL and EMBASE will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe articles. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference lists of all identified reports and articles will be searched for additional studies. Finally, a focused search will be conducted for papers by known authors who have written papers in this area to ensure their complete works have been considered. Any study published in English will be considered for inclusion in this review. Each electronic database will be searched from the earliest date available until the start date of this review, to allow all available data to be reviewed together to provide the most accurate synthesis possible. The databases to be searched include: MEDLINE EMBASE CINAHL AMED BNI Social Care Online HMIC OTSeeker PEDro. The search for unpublished studies will include: Google Scholar, Open Grey and Conference Papers Index. References of identified studies will also be searched. Initial keywords to be used will be: Stroke (MESH) ;Goals (MESH) ;Goal Setting (“goal-setting” OR “goal setting” OR “set* goal*” OR “goal plan*” OR “aim*” OR “objective*” OR “target*”) (“GAS” OR “goal attainment scal*” OR “COPM” OR “canadian occupational performance measure”); Rehabilitation (“rehabilitation” OR “rehab*” OR “recover*”) ;Experiences (“experienc*” OR “perception*” OR “opinion*” OR “attitude*”) An example of the search strategy for Medline (HDAS) is included below: STROKE (MESH) GOALS (MESH) (“goal-setting” OR “goal setting” OR “set* goal” OR “goal plan*” OR “aim*” OR “objective*” OR “target*”).ti.ab (“GAS” OR “goal attainment scal*” OR “COPM” OR “Canadian occupational performance measure”).ti.ab (“rehabilitation” OR “rehab*” OR “recover*”).ti.ab (“experience*” OR “perception*” OR “opinion*” OR “attitude*”).ti.ab 2 OR 3 or 4 1 AND 7 5 AND 8 6 AND 9 10 (Limit to: Humans and (Age Groups All Adult 18 plus years) and (Languages English)) Assessment of methodological quality Two independent reviewers will assess papers selected for retrieval. The reviewers will initially scan the titles and abstracts to exclude papers that do not align with the inclusion criteria. Full text articles will be obtained for papers that do meet the inclusion criteria or where uncertainty exists. The full text articles will then be read and those that fulfill the inclusion criteria will be assessed for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix II). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer. Data extraction Data will be extracted from papers included in the review by two independent reviewers using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives. Data synthesis Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings (Level 1 findings) rated according to their quality, and categorizing these findings on the basis of similarity in meaning (Level 2 findings). These categories will then be subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings (Level 3 findings) that can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form. Conflicts of interest The authors have no conflicts of interest to declare. Acknowledgements The authors TS and AL are supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula. The views expressed are those of the authors and not necessarily those of the NHS, NIHR or the Department of Health.

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