Keywords
Life after stroke; Realist review; Programme theory; Supportive pathways
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.
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.
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.
Life after stroke; Realist review; Programme theory; Supportive pathways
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.
See the authors' detailed response to the review by Nicola Hancock
Stroke is a leading cause of death and disability, affecting survivors physically, emotionally, cognitively and socially, and impacting their wider family and social networks1–5. In 2022, in Ireland, 5961 adults were admitted to acute hospitals following stroke, a year-on-year increase since 20196. 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 services1. The Burden of Stroke in Europe Report describes life after stroke under four categories: health and activity issues, adjustment and wellbeing and information and support7,8. Multiple unmet needs after stroke have been described in the literature including body function and structure, activities, participation, environmental and personal domains8–10. Published Irish data on unmet needs identified mobility problems, emotional issues, fatigue, concentration difficulties, negative financial changes and low return-to-work rates after stroke11.
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 identity12. Documented post-stroke experiences included autonomy, uncertainty, engagement, hope and social relations as key challenges for participation in life after stroke8,9,13.
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 consequences1. 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 disabilities14–17.
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.
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 process19,20. Context-mechanism-outcome configurations (CMOCs) explain generative causation, what mechanisms are activated and how these interactions lead to different outcomes21,22. 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 used23.
Figure 1 outlines the five stages of the realist review in accordance with Pawson’s work24.
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?
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.
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 contexts25. This step will begin with scoping the existing literature and describing early hypotheses about an intervention’s mechanism of action and expert-level insights26,27. 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.
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 CPTs23.
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 guidance22,23,28.
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. 202433; Chen et al. 202134) Collaboration with services and therapists (Heredia-Callejón et al. 202335) Promote adjustment (Ghazzawi et al. 201631) |
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. 201736) Decrease isolation and increasing a sense of connectedness and fulfilment in the community (Yang et al. 202237) |
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. 201738) Specific supports for those with language difficulty after stroke e.g. speech and language therapist facilitated (Chiaramonte & Vecchio 202139; Manning et al. 201940) To re-engage in activities after their stroke that are meaningful for them (Wray et al. 201941) |
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. 202442) Self-esteem (Hall et al. 202243) Peer and social support (Harrison et al. 201738) |
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 202044) Self-evaluation of risk and self-directed choices (Lennon et al. 201845) Supports for behavioural change (Gangwani et al. 202246) |
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).
Papers will be included based on their relevance to the research question and IPTs19. We will assess the relevance and rigor of included works as we test the IPTs29.
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.
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’.
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 outcomes25.
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 discharge47, neuropsychology rehabilitation42 and in evaluating outpatient rehabilitation and community support services post stroke48. 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 interest48,49.
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 management50, 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.
Ethical approval and consent were not required.
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/UJC5X51.
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).
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.
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Rehabilitation
Is the rationale for, and objectives of, the study clearly described?
Yes
Is the study design appropriate for the research question?
Yes
Are sufficient details of the methods provided to allow replication by others?
Yes
Are the datasets clearly presented in a useable and accessible format?
Yes
Competing Interests: No competing interests were disclosed.
Is the rationale for, and objectives of, the study clearly described?
Partly
Is the study design appropriate for the research question?
Yes
Are sufficient details of the methods provided to allow replication by others?
Yes
Are the datasets clearly presented in a useable and accessible format?
Yes
References
1. 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 PubMed Abstract | Publisher Full TextCompeting Interests: No competing interests were disclosed.
Reviewer Expertise: Rehabilitation
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Stroke rehabilitation, technology for rehabilitation, stroke service innovation
Is the rationale for, and objectives of, the study clearly described?
Yes
Is the study design appropriate for the research question?
Yes
Are sufficient details of the methods provided to allow replication by others?
Partly
Are the datasets clearly presented in a useable and accessible format?
Not applicable
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Stroke rehabilitation, technology for rehabilitation, stroke service innovation
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Version 1 23 Jan 25 |
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The use of a realist methodology is appropriate for capturing the complexity of post-stroke recovery and support systems. However, several points would benefit from further clarification and development to strengthen the protocol and ensure its methodological effectiveness.
TITLE: The title is appropriate, but the study design is not clearly indicated.
ABSTRACT:
CONLCUSION
This protocol addresses a critical area of stroke care and is based on an appropriate and robust methodological approach. However, as this is a purely descriptive, pilot study, further details are needed in key methodological sections. I encourage the authors to further explore these aspects, which will significantly improve the clarity and rigor of the protocol.T
The use of a realist methodology is appropriate for capturing the complexity of post-stroke recovery and support systems. However, several points would benefit from further clarification and development to strengthen the protocol and ensure its methodological effectiveness.
TITLE: The title is appropriate, but the study design is not clearly indicated.
ABSTRACT:
CONLCUSION
This protocol addresses a critical area of stroke care and is based on an appropriate and robust methodological approach. However, as this is a purely descriptive, pilot study, further details are needed in key methodological sections. I encourage the authors to further explore these aspects, which will significantly improve the clarity and rigor of the protocol.T