Version Changes
Revised. Amendments from Version 2
We are very grateful to the reviewers for their invaluable feedback. We made minor changes to the protocol between versions 1 and 2, in line with reviewer comments (see responses to reviewers (1, 2 and 3) for consideration of each of the specific changes). We revised the original title and aim of the study to more clearly inform the reader about the scope and purpose of the manuscript. We provided more clarity about the members of the stakeholder and expert panel, our expert panel includes people with lived experience of stroke and carers and we made this detail clearer in the abstract and expert panel table. Carers are key stakeholders in life after stroke. We added details to ensure that the context for the work was clearer for the reader, and the context for this work would focus on life after stroke. We added more detail to the data analysis section and expanded on our approach to coding and thematic analysis to ensure greater transparency and the interpretation of our future work when we are reporting the full study. We made changes to Table 3, this involved providing a more narrative explanation in the text that connects to the contents of Table 3. In addition we incorporated references in Table 3 to support the relevance of each theme listed in the Table. There were a small number of typographical errors and complex sentences which we corrected and addressed.
Abstract
Background
Ever-growing numbers of individuals are surviving stroke and living with the consequences. Life after stroke is a key pillar in addressing the burden of stroke for the remaining lifespan for those with stroke. No consensus on how to best promote agency and fulfilment in life after stroke or the resources required to achieve this currently exists.
Methods
In this realist review protocol we outline the methods we will use to gain an understanding of supporting Life after Stroke through the development of programme theories. These will consist of context–mechanism–outcome configurations (CMOCs) and will acknowledge the resources required. The review will follow the RAMESES five-stage structured methodology to (1) define the scope of the review, and the development of initial programme theories for supporting life after stroke, (2) develop a comprehensive search strategy to identify relevant research, (3) review primary studies and extract data, (4) synthesise evidence (5) refine programme theories iteratively throughout the process using an Expert Panel and reference group, to including stroke researchers, health care professionals working in stroke care, people with lived experience of stroke and carers, and stroke support agencies.
Conclusion
This realist review will examine the mechanisms and contexts for a supported life after stroke care pathway. The CMOCs developed will help explain how generative causation within the life after stroke pathway works. The findings will help inform policy and practice and inform future realist evaluations of Life after Stroke support pathways.
Keywords: Life after stroke; Realist review; Programme theory; Supportive pathways
Introduction
Stroke is a leading cause of death and disability, affecting survivors physically, emotionally, cognitively and socially, and impacting their wider family and social networks 1– 5 . In 2022, in Ireland, 5961 adults were admitted to acute hospitals following stroke, a year-on-year increase since 2019 6 . Sixty-six per cent of individuals discharged home, had documented mild to moderate stroke-related disability. By 2035 there will be a 34% increase in stroke events in the EU, and by 2047, the projected rise in prevalent cases in the community is 27% 7, 8 .
There is no consensus on what is meant by best care following discharge from specialist stroke services 1 . The Burden of Stroke in Europe Report describes life after stroke under four categories: health and activity issues, adjustment and wellbeing and information and support 7, 8 . Multiple unmet needs after stroke have been described in the literature including body function and structure, activities, participation, environmental and personal domains 8– 10 . Published Irish data on unmet needs identified mobility problems, emotional issues, fatigue, concentration difficulties, negative financial changes and low return-to-work rates after stroke 11 .
A qualitative synthesis described the disruption to life experienced by people and their families and the need to adapt and rebuild a post-stroke life and identity 12 . Documented post-stroke experiences included autonomy, uncertainty, engagement, hope and social relations as key challenges for participation in life after stroke 8, 9, 13 .
The Stroke Action Plan for Europe (SAPE) (2018–2030) recognises Life after Stroke as one of seven key pillars to address the burden of stroke and long-term consequences 1 . The SAPE general principles for Life after Stroke and the World Stroke Organisation include a call for the recognition by society, of the worth and value of people with stroke-related disabilities 14– 17 .
Our rapid realist review seeks to identify the mechanisms that promote agency and fulfilment in life after stroke and the resources required to achieve this. We will explore the contexts in which interventions have been successful, and will include the views and opinion of stakeholders in building programme level theories. This realist review will ask “what works for whom, why does it work and in what circumstances?” 18 .
Protocol
Study design
Realist synthesis is a theory driven approach and realist philosophy is based on ontological assumptions of a “real world” 19 . A realist lens conceptualises services and interventions that support Life after Stroke as a dynamic process 19, 20 . Context-mechanism-outcome configurations (CMOCs) explain generative causation, what mechanisms are activated and how these interactions lead to different outcomes 21, 22 . Our review will be conducted and reported according to the Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) 22 . The PRISMA-P checklist will be used 23 .
Methods
Stages of the realist review
Figure 1 outlines the five stages of the realist review in accordance with Pawson’s work 24 .
Figure 1. Five stages of the realist review according to Pawson 24 .
Defining the scope of the review
The aim of this realist review is to describe the mediators which enable a personally meaningful life after stroke. By determining the contexts, mechanisms and resources, the results will help guide clinicians, healthcare providers and peers to support people after stroke to regain a sense of identity, purpose, fulfilment and life satisfaction. The specific research questions being asked include:
What mediators or mechanisms enable interventions designed to support a personally meaningful life after stroke to result in the anticipated outcomes for people in their life after stroke?
What contextual factors and resources help facilitate achievement of a personally meaningful life after stroke following supportive interventions for people in their life after stroke?
The expert panel
An expert panel was convened and included clinicians, researchers, a recognised international expert, healthcare professionals working in stroke care, advocacy and stroke support workers from NGOs. The expert panel also included people with lived experience of stroke and carers. Table 1 provides a breakdown of the members of the expert group. This group will have an important role, placing a spotlight on key literature, providing lived experience as someone who works in stroke care or has personal experience of stroke to aid the interpretation of data and complex concepts, in assessing the available evidence and in enhancing the credibility of the programme-level theories developed and their relevance clinically.
Table 1. The Expert Panel membership.
| Membership
N=13 |
Gender
breakdown |
Sector | Additional information |
|---|---|---|---|
| National Stroke Programme
representation (N=2) |
Female: 2 | Health Service
Executive |
Responsibilities of the programme include
development of the National Stroke Strategy |
| People with lived experience
of stroke (N=2) Carers (N=4) |
Female: 1
Male: 1 Female:2 Male:2 |
Not applicable | |
| National stroke charity
representation (N=2) |
Female: 1
Male: 1 |
NGO | Advocacy director & Head of community
support services |
| Physiotherapy (N=2) | Female: 2 | Academic Clinical | |
| Occupational therapy (N=2) | Female: 1
Male: 1 |
Academic Clinical | |
| Speech and language therapy
(N=1) |
Female: 1 | Clinical | |
| Psychology (N=1) | Female: 1 | Clinical | |
| Nursing (N=1) | Female: 1 | Academic | International Expert |
NGO=Non Governmental Organization
Early programme theory development
Potential explanations for how supports to achieve a personally meaningful Life after Stroke might work are first required. Describing candidate programme theories (CPTs) for a realist review is an important step, and will provide a scaffold on which the causal mechanisms can generate outcomes in specific contexts 25 . This step will begin with scoping the existing literature and describing early hypotheses about an intervention’s mechanism of action and expert-level insights 26, 27 . A preliminary search of CINAHL and PubMed by title, abstract, keywords and subject headings was conducted in conjunction with a liaison librarian using search strings derived from the PICOC headings detailed in Table 2.
Table 2. PICOC Defined and Inclusion and Exclusion criteria.
| Inclusion Criteria | Exclusion Criteria | |
|---|---|---|
| P | Adult stroke or cerebrovascular accident or transient ischaemic
attack. |
Other neurological conditions including traumatic
brain injury. Paediatric stroke. |
| I | Interventions designed to practically or psychologically support
someone with stroke to have a personally meaningful life after stroke. Interventions may include self-management, peer support, communication, living well and healthily, goal setting and resilience building. |
Studies focussed on acute medical interventions,
pharmacotherapy, rehabilitation of stroke impairments and disability. |
| C | Not required but studies could include usual care or same or
other interventions as comparator groups. |
|
| O | Adapting to loss after stroke; re-establishing a self-identify
and self-confidence; engaging in work (vocational or other), engaging in family and societal roles; managing psychological stress; purpose and fulfilment after stroke; wellbeing. |
Impairment and disability outcomes. |
| C | Following discharge from acute hospital services across the
remaining lifespan. |
Studies in acute hospital or in-patient
rehabilitation settings. Studies not in the English language. |
This guided the first group of CPTs developed. Consultation between the researchers provided a first level refinement of these CPTs, often collapsing CPTs or separating them out where differing constructs were determined. These were then presented to the expert panel and further refined, taking account of their perspectives and experiences in relation to contexts, mechanisms and outcomes of supports for Life after Stroke. Here the panel were tasked with confirming, refuting or refining the CPTs 23 .
Development of a search strategy
The broad search terms derived from the CPTs are summarised in Table 3 and will be developed further with a liaison librarian, aligned to the RAMESES guidance 22, 23, 28 .
Table 3. Candidate Programme Theories.
| Candidate
programme theory |
Theme | Early COMCs | Author and Reference |
|---|---|---|---|
| 1 |
Supported self-
management after stroke |
Having agency and access to supportive resources, when
and as required, from healthcare professionals and or family and or peers to manage life after stroke creates a space and a support system in which stroke survivors can feel comfortable to flourish and work towards their hopes and priorities to achieve a personally meaningful life after stroke. |
Agency and access to
supportive resources (Chouliara et al. 2023) 30 Manage life after stroke (Ghazzawi et al. 2016) 31 Meaningful life (Sexton et al. 2024) 32 |
| 2 |
Goals and priorities
and identifying needs after stroke |
When transitioning from active rehabilitation, the
conversation should move from shared rehabilitation goals to a more skilled conversation, in collaboration with services and therapists. This conversation establishes their readiness for life after stroke. It should articulate what is a priority for the person with stroke and their family, what is important to them and what they need to re-establish a sense of identity. This will help promote adjustment to the new normal and allow active citizenship that may include engaging in work, vocational or other endeavours. |
Transitions (O’Callaghan
et al. 2024
33
; Chen
et al. 2021
34
)
Collaboration with services and therapists (Heredia-Callejón et al. 2023 35 ) Promote adjustment (Ghazzawi et al. 2016 31 ) |
| 3 | Peer support | For those who wish to engage with formal peer support resources and training; or adequately resourced informal peer support or incidental peer support, these can all play an important role in adjustment to life after stroke. This is achieved by providing a safe space to talk, promoting self-compassion and perspectives of gratitude, decreasing isolation and increasing a sense of connectedness and fulfilment in the community. | Peer support (Sadler
et al. 2017
36
)
Decrease isolation and increasing a sense of connectedness and fulfilment in the community (Yang et al. 2022 37 ) |
| 4 | Communication | Ongoing communication that includes active listening and a skilled communication partner (or specific supports such as speech and language therapy), allows the person with stroke and their wider support network (or nominated supporter) to air their feelings and express complex emotions or trauma. They can communicate their hopes for their future life and seek the help they require and to re-engage in more activities that are meaningful for them after their stroke. | Ongoing communication (Harrison
et al. 2017
38
)
Specific supports for those with language difficulty after stroke e.g. speech and language therapist facilitated (Chiaramonte & Vecchio 2021 39 ; Manning et al. 2019 40 ) To re-engage in activities after their stroke that are meaningful for them (Wray et al. 2019 41 ) |
| 5 |
Psychological
supports |
Psychological supports, including; professional support, to talk therapy, to active listening; can provide ‘headspace’ that helps people with stroke to work through complex emotions and internal thoughts. This can help them to develop a compassionate view of themselves, helps
them to restore their locus of control and ability to seek help, leading to improved perceptions of well-being and self-esteem in their life after stroke. |
Psychological supports, self-esteem (Fletcher
et al. 2024
42
)
Self-esteem (Hall et al. 2022 43 ) Peer and social support (Harrison et al. 2017 38 ) |
| 6 |
Living well after
stroke |
In individuals who have an understanding of risk factors for stroke (including medication adherence, physical activity, participation, healthy dietary habits, smoking cessation, safe substance use, alcohol and other emotional self-regulation and mood), self-evaluation of risk and self-directed choices should be supported by positive messaging and nudges for those who wish to change unhealthy lifestyle behaviours. Adequately resourced services, with supports for behaviour change that are underpinned by behaviour change theory and techniques including monitoring and feedback, can positively impact cardiovascular health and wellness. | Risk factors for stroke
(Gladstone and Poppe 2020 44 ) Self-evaluation of risk and self-directed choices (Lennon et al. 2018 45 ) Supports for behavioural change (Gangwani et al. 2022 46 ) |
Our initial review of the literature allowed us to develop initial candidate programme theories which we have presented in Table 3. They include supported self-management after stroke setting goals and priorities and identifying needs after stroke, peer support, communication within the health system and communication supports for people with aphasia after stroke, psychological supports for adjustment to a new post stroke identity and supporting a healthy lifestyle after stroke supporting the person with stroke to have a personally meaningful life after stroke to address risk factors after stroke and adopting a healthy lifestyle. These are initial, testable explanations of potential components and will allow us to gain an understanding of supporting Life after Stroke through the development of programme theories. We will evaluate context–mechanism–outcome configurations (CMOCs) further to guide the evaluation into what works, for whom, under what circumstances, and how. These theories are not fixed and will be refined as the evaluation progresses through a review of the literature and further discussions with the expert panel. While the literature discusses self-management, setting goals and priorities, peer support, communication and psychological supports and supporting a healthy lifestyle after stroke it rarely does so in the context of post-discharge care, long term supports and a life after stroke context.
Multiple sources including electronic databases, organisational websites and grey literature will be searched and we will cross reference citations in identified articles and suggested sources from the expert panel. The following databases CINAHL, EBSCOhost, MEDLINE, PubMed, EMBASE, Web of Science, Scopus, ScienceDirect Journals, and Google Scholar will be searched to identify the studies relevant to the review questions. The searches will include combinations of the keywords based on the population-intervention-comparison-outcome-context (PICOC) tool. This will help to describe the inclusion and exclusion criteria. An indicative search strategy for Ovid Medline is included ( Table 4).
Table 4. Indicative Search Strategy.
| No. | Query | Run Via | Results |
|---|---|---|---|
| 1 | (TI=(stroke or cardiovas* or "cerebral infarc*" or cerebral or "acquired brain injur*" or infract* or
intracereb* or "cerebrovascular accident*" or "CVA" or "cerebrovascular insult" or "CVI" or "brain attack")) OR AB=(stroke or cardiovas* or "cerebral infarc*" or cerebral or "acquired brain injur*" or infract* or intracereb* or "cerebrovascular accident*" or "CVA" or "cerebrovascular insult" or "CVI" or "brain attack") |
Web of Science | 1,269,283 |
| 2 | (TI=("integrated care" or "ICS" or "mulit-disciplinary care" or "multidisciplinary care" or "coordinated
care" or "co-ordinated care" or "fragmentation of care" or "continuity of care" or "transition of care" or "integrated health" or "comprehensive care" or "seamless care" or "transmural care" or "collaborative care" or "team based care" or "team-based-care" or "MDT" or ((team or multidisciplinary or "multi disciplinary") NEAR/2 care) )) OR AB=("integrated care" or "ICS" or "mulit-disciplinary care" or "multidisciplinary care" or "coordinated care" or "co-ordinated care" or "fragmentation of care" or "continuity of care" or "transition of care" or "integrated health" or "comprehensive care" or "seamless care" or "transmural care" or "collaborative care" or "team based care" or "team-based-care" or "MDT" or ((team or multidisciplinary or "multi disciplinary") NEAR/2 care )) |
Web of Science | 89,274 |
| 3 | (TI=("care planning" or "social support*" or "need* assessment*" or "access to care" or "service sign* post*" or "recreational activit*" or "recreational hobb*" or "social support" or "self management" or "recreational hobb*")) OR AB=("care planning" or "social support*" or "need* assessment*" or "access to care" or "service sign* post*" or "recreational activit*" or "recreational hobb*" or "social support" or "self management" or "recreational hobb*") | Web of Science | 133,521 |
| 4 | (TI=((peer NEAR/2 social) or (care NEAR/2 transition) or (pathway* NEAR/2 care) or (support* NEAR/2 group*) or (service NEAR/2 sign*) or ((physical or psychological) NEAR/2 support*)) OR AB=((peer NEAR/2 social) or (care NEAR/2 transition) or (pathway* NEAR/2 care) or (support* NEAR/2 group*) or (service NEAR/2 sign*) or ((physical or psychological) NEAR/2 support*))) | Web of Science | 90,290 |
| 5 | (TI=("universal access*" or 'primary screening' or ((multisectoral or multi-sectoral) NEAR/2 "public health intervention*") or "patient focused care" or "chain of care" or ((individual or societ*) NEAR/2 prevention*) or "evaluation of outcome*" or "primary prevention initiative*" or (target NEAR/2 "whole population*") or "self management*" or "health* lifetime change*" or "personalized assessment*" or "universal access" or "national strateg*" or "public health campaign*" or ((legislation* or national) NEAR/2 strateg*) or "early supported discharge" or (early NEAR/2 "supported discharge") or "specialist knowledge" or (skilled N2 "stroke personnel") or "evidence based pathway*" or "national stroke plan*" or "coordinated care" or "co ordinated care" or "co-ordinated care" or ((optimised or optimized or equal) N3 "access care") or (onset N2 treatment*) or "thrombolysis" or "specialist advice" or "continuum of care" or "specialist rehabilitation" or "early supported discharge" or (ongoing NEAR/3 intensive NEAR/2 intervention*) or "lifestyle support*" or "physical fitness program*" or (review NEAR/2 need*) or (adopting NEAR/2 "local condition*") or "patient centered care" or "patient centred care" or (national NEAR/3 "stroke care") or "enhanced self management*" or "enhanced self-management" or "assistance system*" or "secondary prevention" or (secondary NEAR/2 prevention) )) OR AB=("universal access*" or 'primary screening' or ((multisectoral or multi-sectoral) NEAR/2 "public health intervention*") or "patient focused care" or "chain of care" or ((individual or societ*) NEAR/2 prevention*) or "evaluation of outcome*" or "primary prevention initiative*" or (target NEAR/2 "whole population*") or "self management*" or "health* lifetime change*" or "personalized assessment*" or "universal access" or "national strateg*" or "public health campaign*" or ((legislation* or national) NEAR/2 strateg*) or "early supported discharge" or (early NEAR/2 "supported discharge") or "specialist knowledge" or (skilled N2 "stroke personnel") or "evidence based pathway*" or "national stroke plan*" or "coordinated care" or "co ordinated care" or "co-ordinated care" or ((optimised or optimized or equal) N3 "access care") or (onset N2 treatment*) or "thrombolysis" or "specialist advice" or "continuum of care" or "specialist rehabilitation" or "early supported discharge" or (ongoing NEAR/3 intensive NEAR/2 intervention*) or "lifestyle support*" or "physical fitness program*" or (review NEAR/2 need*) or (adopting NEAR/2 "local condition*") or "patient centered care" or "patient centred care" or (national NEAR/3 "stroke care") or "enhanced self management*" or "enhanced self-management" or "assistance system*" or "secondary prevention" or (secondary NEAR/2 prevention) ) | Web of Science | 235,698 |
| 6 | TI=(therap* or ("mental health" NEAR/2 (support* or therap* or service*)) or counselling or rehabilitation or (wellbeing NEAR/2 support) or "behavioral therapy" or "behavioural therapy" or "residential care" or "crisis intervention*" or "individual care plan*" or "social worker*" or "mental health treatment*" or "wellbeing support*" or "well-being support*" or "psychiatric support*" or "emotional support*" or ("self-efficacy" NEAR/2 support) or therap* or (("self-efficacy" or autonomy) N2 support)) | Web of Science | 1,279,103 |
| 7 | AB=(therap* or ("mental health" NEAR/2 (support* or therap* or service*)) or counselling or rehabilitation or (wellbeing NEAR/2 support) or "behavioral therapy" or "behavioural therapy" or "residential care" or "crisis intervention*" or "individual care plan*" or "social worker*" or "mental health treatment*" or "wellbeing support*" or "well-being support*" or "psychiatric support*" or "emotional support*" or ("self-efficacy" NEAR/2 support) or therap* or (("self-efficacy" or autonomy) N2 support)) | Web of Science | 3,004,968 |
| 8 | #2 OR #3 OR #4 OR #5 OR #6 OR #7 | Web of Science | 4,125,431 |
| 9 | (TI=(recovery or cognit* or neuropsych* or "mild cognitive impairment*" or "vascular mild cognitive impairment*" or attention or attention* or "information process*" or memory or recall or executive or dysexecutive or memory or "executive function*" or "attention*")) OR AB=(recovery or cognit* or neuropsych* or "mild cognitive impairment*" or "vascular mild cognitive impairment*" or attention or attention* or "information process*" or memory or recall or executive or dysexecutive) | Web of Science | 3,719,350 |
| 10 | TI=(negativity or (negative NEAR/2 (feeling* or emotion* or thought* or "mental state*")) or depression or depressive or melancholy or unhappiness or sorrow or woe or "poor mental state*" or "wellbeing" or "well-being" or melancholy or sadness or unhappiness ) | Web of Science | 308,614 |
| 11 | AB=(negativity or (negative NEAR/2 (feeling* or emotion* or thought* or "mental state*")) or depression or depressive or melancholy or unhappiness or sorrow or woe or "poor mental state*" or "wellbeing" or "well-being" or melancholy or sadness or unhappiness ) | Web of Science | 700,256 |
| 12 | TI=(work* or occupat* or "paid employment*" or employ* or vocation* or parent* or caregiv* or carer* or caring or mother* or father* or relationship* or relation or relations or caregiv* or leisure* or sport* or ("life participation" NEAR/3 (participation or engagement* or role))) | Web of Science | 2,849,953 |
| 13 | AB=(work* or occupat* or "paid employment*" or employ* or vocation* or parent* or caregiv* or carer* or caring or mother* or father* or relationship* or relation or relations or caregiv* or leisure* or sport* or ("life participation" NEAR/3 (participation or engagement* or role))) | Web of Science | 11,930,236 |
| 14 | #9 OR #10 OR #11 OR #12 OR #13 | Web of Science | 16,421,368 |
| 15 | ((TI=("long term" or "longterm" or "long-term")) OR AB=("long term" or "longterm" or "long-term")) | Web of Science | 1,436,868 |
| 16 | #1 AND #8 AND 14 AND 15 | Web of Science | 9,576 |
| 17 | (TI=("middle age" OR "young adult" OR "working age" OR "working adult*")) OR AB=("middle age" OR "young adult" OR "working age" OR "working adult*") | Web of Science | 57,013 |
| 18 | #16 AND #17 | Web of Science | 61 |
| 19 | (TI=("middle age" OR "young adult" OR "working age" OR "working adult*")) OR AB=("middle age" OR "young adult" OR "working age" OR "working adult*") | Web of Science | 59,547 |
| 20 | #16 AND #20 | Web of Science | 70 |
| 21 | #20 AND #16 and 2013 or 2014 or 2015 or 2016 or 2023 or 2022 or 2021 or 2020 or 2019 or 2017 or 2018 (Publication Years) and English (Languages) | Web of Science | 54 |
Evidence selection and appraisal
Papers will be included based on their relevance to the research question and IPTs 19 . We will assess the relevance and rigor of included works as we test the IPTs 29 .
Data extraction
Data extraction will be a three-step process, initial title and abstract screening using the inclusion and exclusion criteria ( Table 2); followed by full-text review and appraisal. All authors will screen documents for initial relevance. Any conflicts will be discussed by all authors. A bespoke data extraction form will be used to extract and review information for programme theory refinement to include context, mechanisms, outcomes and resources relating to the research questions.
Data analysis
Following data extraction, the selected papers will be imported into the qualitative software NVivo [91] version 14 (Mac), to facilitate coding and thematic data analysis to identify CMOCs. We will use the Braun and Clarke (29) thematic analysis framework to analyse the findings from each selected paper; (1) familiarity with the information, (2) generate codes, search for themes, (3) review the themes, (4) define and (5) name the themes and (6) produce the findings. Results and discussion sections will be coded in order to identify context, mechanism, outcome configurations in the findings.
The expert panel will help to improve the final theoretical framework and we will revisit any stage of the process to ensure that we have enough data and reach a state of ‘theory’.
Refinement of Initial Programme Theories (IPTs)
The first draft IPTs will be presented to the expert panel for feedback to ensure appropriate interpretation of results. The expert panel will ensure that the refined IPTs are robust, contextually appropriate and reflect the complexities associated with the implementation of the intervention and relevant outcomes 25 .
Dissemination of findings
Dissemination will be consistent with the RAMESES guidelines 22, 28 . The findings will be published in a peer-reviewed journal, presented at relevant conferences and stakeholder events. The protocol will be registered with PROSPERO.
Discussion
Realist inquiry facilitates an understanding of the extent to which an intervention works, for whom, in what context, why and how. This methodology has previously proven useful in research relating to stroke care in the context of early supported discharge 47 , neuropsychology rehabilitation 42 and in evaluating outpatient rehabilitation and community support services post stroke 48 . This protocol adds to the growing number of publications in stroke care. It provides details for a realist review that will enable a better understanding of the specific contexts in which certain mechanisms are activated to enable long-term support to achieve a personally meaningful life after stroke. The review will address both the visible and often hidden forces that generate the outcomes of interest 48, 49 .
Life after stroke has only been regarded as a separate entity in recent years. Few of the current adult UK stroke guidelines specifically address longer term stroke management 50 , reflecting the paucity of evidence in this area and the limited programme theory available to support the required complex interventions. The realist review proposed in this protocol, rather than judging the effectiveness of an intervention, is concerned with answering how supports provided for Life after Stroke work, who they work for and in what circumstances.
Realist programme theories that can coherently explain how supports are expected to work in Life after Stroke will provide researchers, policy makers and service funders/providers with new insights and robustly generated programme theories that can be developed, implemented or evaluated in existing stroke care pathways. Key to the knowledge gain associated with this methodologic approach is the inclusion of reference panels comprising healthcare professionals and experience-based experts in the development of the research questions, the search strategy and in the refinement of the review’s findings to both an Irish and a personal context.
Ethics and consent
Ethical approval and consent were not required.
Acknowledgements
The authors are grateful to our Public and Patient Involvement (PPI) partners who worked with us on the grant application, this research methodology and who participated as Expert Panel members in developing candidate programme theories to inform this review.
Funding Statement
Health Research Board Ireland [APA-2022-019]. This work was also supported by the Irish Heart Foundation and the HSE National Stroke Clinical Programme.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
[version 3; peer review: 3 approved]
Data availability
Underlying data
No data are associated with this protocol.
Extended data
Open Science Framework: CLASP project - Life after stroke and supportive stroke pathways: Protocol for a rapid realist review. https://doi.org/10.17605/OSF.IO/UJC5X 51 .
The project contains the following underlying data:
Extended File 1: PRISMA-P – complete checklist of items in reporting scoping reviews
Extended File 2: Search Terms – complete list of search terms used in all databases
Data are available under the terms of the Creative Commons Attribution 4.0 International license (CC-BY 4.0).
References
- 1. Norrving B, Barrick J, Davalos A, et al. : Action Plan for Stroke in Europe 2018–2030. Eur Stroke J. 2018;3(4):309–336. 10.1177/2396987318808719 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2. Irish National Audit of Stroke national report 2020.National Office of Clinical Audit, Dublin, Ireland, [Accessed 1st September April 2024]. Reference Source
- 3. GBD 2017 US Neurological Disorders Collaborators, Feigin VL, Vos T, et al. : Burden of neurological disorders across the US from 1990–2017: a Global Burden of Disease study. JAMA Neurol. 2021;78(2):165–176. 10.1001/jamaneurol.2020.4152 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4. O’Connell B, Baker L: Managing as carers of stroke survivors: strategies from the field. Int J Nurs Pract. 2004;10(3):121–126. 10.1111/j.1440-172X.2004.00469.x [DOI] [PubMed] [Google Scholar]
- 5. Quinn K, Murray C, Malone C: Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: a meta-synthesis of qualitative research. Disabil Rehabil. 2014;36(3):185–198. 10.3109/09638288.2013.783630 [DOI] [PubMed] [Google Scholar]
- 6. Irish National Audit of Stroke National Report 2022.National Office of Clinical Audit, Dublin, Ireland, [Accessed 26th August 2024]. Reference Source
- 7. Stevens E, McKevitt C, Emmett E, et al. : The burden of stroke in Europe.London: Stroke Alliance for Europe (SAFE),2017; [accessed 26th August 2024]. Reference Source [Google Scholar]
- 8. Sarre S, Redlich C, Tinker A, et al. : A systematic review of qualitative studies on adjusting after stroke: lessons for the study of resilience. Disabil Rehabil. 2014;36(9):716–726. 10.3109/09638288.2013.814724 [DOI] [PubMed] [Google Scholar]
- 9. Sumathipala K, Radcliffe E, Sadler E, et al. : Identifying the long-term needs of stroke survivors using the International Classification of Functioning, Disability and Health. Chronic Illn. 2012;8(1):31–44. 10.1177/1742395311423848 [DOI] [PubMed] [Google Scholar]
- 10. Chen T, Zhang B, Deng Y, et al. : Long-term unmet needs after stroke: systematic review of evidence from survey studies. BMJ Open. 2019;9(5): e028137. 10.1136/bmjopen-2018-028137 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11. Walsh ME, Galvin R, Loughnane C, et al. : Community re-integration and long-term need in the first five years after stroke: results from a national survey. Disabil Rehabil. 2015;37(20):1834–1838. 10.3109/09638288.2014.981302 [DOI] [PubMed] [Google Scholar]
- 12. Lou S, Carstensen K, Jørgensen CR, et al. : Stroke patients’ and informal carers’ experiences with life after stroke: an overview of qualitative systematic reviews. Disabil Rehabil. 2017;39(3):301–313. 10.3109/09638288.2016.1140836 [DOI] [PubMed] [Google Scholar]
- 13. Hannah D, Lindholm B, Maisch L: Certain uncertainty: life after stroke from the patient’s perspective. Circ Cardiovasc Qual Outcomes. 2014;7(6):968–969. 10.1161/CIRCOUTCOMES.114.001315 [DOI] [PubMed] [Google Scholar]
- 14. Feigin VL, Norrving B, Mensah GA: Global burden of stroke. Circ Res. 2017;120(3):439–448. 10.1161/CIRCRESAHA.116.308413 [DOI] [PubMed] [Google Scholar]
- 15. van Wijck F, Bernhardt J, Billinger SA, et al. : Improving life after stroke needs global efforts to implement evidence-based Physical Activity pathways. Int J Stroke. 2019;14(5):457–459. 10.1177/1747493019840930 [DOI] [PubMed] [Google Scholar]
- 16. Sacco RL, Sandercock P, Endres M, et al. : Review and prioritization of stroke research recommendations to address the mission of the World Stroke Organization: a call to action from the WSO Research Committee. Int J Stroke. 2015;10(Suppl A100):4–9. 10.1111/ijs.12625 [DOI] [PubMed] [Google Scholar]
- 17. World Stroke Organisation: Global Stroke Bill of Rights. [Accessed 26th August 2024]. Reference Source
- 18. Pawson R, Greenhalgh T, Harvey G, et al. : Realist review--a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy. 2005;10(suppl 1):21–34. 10.1258/1355819054308530 [DOI] [PubMed] [Google Scholar]
- 19. Westhorp G: Understanding mechanisms in realist evaluation and research. Doing realist research. London: Sage,2018. 10.4135/9781526451729.n4 [DOI] [Google Scholar]
- 20. Rogers L, De Brún A, Birken SA, et al. : Context counts: a qualitative study exploring the interplay between context and implementation success. J Health Organ Manag. 2021;35(7):802–824. 10.1108/JHOM-07-2020-0296 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21. Linsley P, Howard D, Owen S: The construction of context-mechanisms outcomes in realistic evaluation. Nurse Res. 2015;22(3):28–34. 10.7748/nr.22.3.28.e1306 [DOI] [PubMed] [Google Scholar]
- 22. Wong G, Westhorp G, Manzano A, et al. : RAMESES II reporting standards for Realist Evaluations. BMC Med. 2016;14(1): 96. 10.1186/s12916-016-0643-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 23. Page MJ, McKenzie JE, Bossuyt PM, et al. : The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372: n71. 10.1136/bmj.n71 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24. Pawson R: Evidence-based policy: in search of a method. Evaluation. 2002;8(2):157–181. 10.1177/1358902002008002512 [DOI] [Google Scholar]
- 25. Teeling SP, Davies C, Barnard M, et al. : A rapid realist review of qfuality care process metrics implementation in nursing and midwifery practice. Int J Environ Res Public Health. 2021;18(22): 11932. 10.3390/ijerph182211932 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 26. Hunter R, Gorely T, Beattie M, et al. : Realist review. Int Rev Sport Exerc Psychol. 2022;15(1):242–265. 10.1080/1750984X.2021.1969674 [DOI] [Google Scholar]
- 27. Pawson R, Tilley N: An introduction to Scientific Realist Evaluation. Evaluation for the 21st century: A handbook.1997;405–418. 10.4135/9781483348896.n29 [DOI] [Google Scholar]
- 28. Greenhalgh T, Wong G, Jagosh J, et al. : Protocol—the RAMESES II study: developing guidance and reporting standards for Realist Evaluation. BMJ Open. 2015;5(8): e008567. 10.1136/bmjopen-2015-008567 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29. Dada S, Dalkin S, Gilmore B, et al. : Applying and reporting relevance, richness and rigour in realist evidence appraisals: advancing key concepts in realist reviews. Res Synth Methods. 2023;14(3):504–514. 10.1002/jrsm.1630 [DOI] [PubMed] [Google Scholar]
- 30. Chouliara N, Cameron T, Byrne A, et al. : How do stroke Early Supported Discharge services achieve intensive and responsive service provision? Findings from a realist evaluation study (WISE). BMC Health Serv Res. 2023;23(1): 299. 10.1186/s12913-023-09290-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31. Ghazzawi A, Kuziemsky C, O’Sullivan T: Using a complex adaptive system lens to understand family caregiving experiences navigating the stroke rehabilitation system. BMC Health Serv Res. 2016;16(1): 538. 10.1186/s12913-016-1795-6 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32. Sexton E, Fowler K, Hickey A, et al. : Priorities for developing stroke care in Ireland from the perspectives of stroke survivors, family carers and professionals involved in stroke care: a mixed methods study. PLoS One. 2024;19(1): e0297072. 10.1371/journal.pone.0297072 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33. O’Callaghan G, Fahy M, O'Meara S, et al. : Transitioning to home and beyond following stroke: a prospective cohort study of outcomes and needs. BMC Health Serv Res. 2024;24(1): 449. 10.1186/s12913-024-10820-8 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34. Chen L, Xiao LD, Chamberlain D, et al. : Enablers and barriers in hospital-to-home transitional care for stroke survivors and caregivers: a systematic review. J Clin Nurs. 2021;30(19–20):2786–2807. 10.1111/jocn.15807 [DOI] [PubMed] [Google Scholar]
- 35. Heredia-Callejón A, García-Pérez P, Armenta-Peinado JA, et al. : Influence of the therapeutic alliance on the rehabilitation of stroke: a systematic review of qualitative studies. J Clin Med. 2023;12(13): 4266. 10.3390/jcm12134266 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 36. Sadler E, Sarre S, Tinker A, et al. : Developing a novel peer support intervention to promote resilience after stroke. Health Soc Care Community. 2017;25(5):1590–1600. 10.1111/hsc.12336 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 37. Yang CL, Labbé D, Sakakibara BM, et al. : World Café- a community conversation: a Canadian perspective on stroke survivors needs for community integration. Top Stroke Rehabil. 2022;29(5):392–400. 10.1080/10749357.2021.1928839 [DOI] [PubMed] [Google Scholar]
- 38. Harrison M, Ryan T, Gardiner C, et al. : Psychological and emotional needs, assessment, and support post-stroke: a multi-perspective qualitative study. Top Stroke Rehabil. 2017;24(2):119–125. 10.1080/10749357.2016.1196908 [DOI] [PubMed] [Google Scholar]
- 39. Chiaramonte R, Vecchio M: Dysarthria and stroke. The effectiveness of speech rehabilitation. A systematic review and meta-analysis of the studies. Eur J Phys Rehabil Med. 2021;57(1):24–43. 10.23736/S1973-9087.20.06242-5 [DOI] [PubMed] [Google Scholar]
- 40. Manning M, MacFarlane A, Hickey A, et al. : Perspectives of people with aphasia post-stroke towards Personal Recovery and Living Successfully: a systematic review and thematic synthesis. PLoS One. 2019;14(3): e0214200. 10.1371/journal.pone.0214200 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 41. Wray F, Clarke D, Forster A: How do stroke survivors with communication difficulties manage life after stroke in the first year? A qualitative study. Int J Lang Commun Disord. © 2019 Royal College of Speech and Language Therapists,2019;54(5):814–827. 10.1111/1460-6984.12487 [DOI] [PubMed] [Google Scholar]
- 42. Fletcher K, Wydera S, Thorpe N, et al. : A rapid realist review of clinical Neuropsychology Rehabilitation programmes to improve psychological wellbeing and Quality of Life for people with Acquired Brain Injuries. Neuropsychol Rehabil. 2024;34(8):1035–1070. 10.1080/09602011.2023.2273580 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 43. Hall J, Kroll T, van Wijck F, et al. : Co-creating digital stories with UK-based stroke survivors with the aim of synthesizing collective lessons from individual experiences of interacting with Healthcare Professionals. Front Rehabil Sci. 2022;3: 877442. 10.3389/fresc.2022.877442 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 44. Gladstone D, Poppe A: Canadian stroke best practices on behalf of the Canadian stroke best practice recommendations secondary prevention of stroke writing group and in collaboration with the Canadian stroke consortium. Reference Source
- 45. Lennon O, Blake C, Booth J, et al. : Interventions for behaviour change and self-management in stroke secondary prevention: protocol for an overview of reviews. Syst Rev. 2018;7(1): 231. 10.1186/s13643-018-0888-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 46. Gangwani R, Cain A, Collins A, et al. : Leveraging factors of self-efficacy and motivation to optimize stroke recovery. Front Neurol. 2022;13: 823202. 10.3389/fneur.2022.823202 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 47. Fisher RJ, Chouliara N, Byrne A, et al. : Large-scale implementation of stroke early supported discharge: the WISE realist mixed-methods study. Health Serv Deliv Res. 2021;9(22). 10.3310/hsdr09220 [DOI] [PubMed] [Google Scholar]
- 48. Ataman R, Ahmed S, Berta W, et al. : Sustainability of an outcome measure in outpatient stroke rehabilitation: a Realist Evaluation. J Eval Clin Pract. 2024;30(4):559–574. 10.1111/jep.13972 [DOI] [PubMed] [Google Scholar]
- 49. Jagosh J: Realist synthesis for public health: building an ontologically deep understanding of how programs work, for whom, and in which contexts. Ann Rev Public Health. 2019;40(1):361–372. 10.1146/annurev-publhealth-031816-044451 [DOI] [PubMed] [Google Scholar]
- 50. National Clinical Guideline for stroke for the UK and Ireland.London: Intercollegiate Stroke Working Party,2023; [accessed 02/09/2024]. Reference Source
- 51. Lennon O, O’Neill M, Walsh K, et al. : Life after stroke and supportive stroke pathways: protocol for a rapid realist review.[Dataset]. Open Science Framework. 2024. 10.17605/OSF.IO/UJC5X [DOI] [PMC free article] [PubMed]