The development of a self-management intervention for stroke survivors – My Life After Stroke (MLAS)

Figures & data

Figure 1. Key steps in the development process of the self-management programme.

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A figure showing that on the left, exploring the idea is the first part of developing a self-management programme, which leads into a cycle of developing a prototype, testing it out and refining it, ending on the right of the figure with a programme that is ready for research.

Table 1. Findings from the literature and how this was used to inform our self-management programme.

Finding	How this was used to inform our programme
The optimal dose and timing of interventions post-stroke is yet to be determined [26] Information and support given immediately post-stroke is often not accessed or retained [24] Psychological and social needs increase over time, compared to physical needs that tend to reduce following the immediate rehabilitation phase [11].	Stroke survivors are encouraged to attend at any point from diagnosis (no upper limit) except during the immediate rehabilitation phase, where functional needs are most prominent Narrative approach and journey metaphor is used for stroke survivors to tell their story, irrespective of how long ago their stroke was Opportunities for stroke survivors to share ideas and support are included A stroke directory is provided to inform stroke survivors of local and national organisation or groups that may help Problem solving and cognitive behaviour therapy approaches are used. Participant handbooks are provided weekly to back up information provided and skills learnt
Carers have emotional needs [27,28]	Carers are invited to attend with stroke survivor Opportunities for separate carer and stroke survivors activities and discussions are provided, to allow open, honest conversations and different perspectives to be explored
A one to one face-to-face contact at the start of the intervention is important [27]	The format of the intervention includes an individual appointment at the start of the intervention
A community venue may help facilitate integration and attendance [28]	It is recommended that the intervention is delivered in an easily accessible community setting
A standardised format helps to focus and structure [29] the content and allows information to be shared and reinforced at subsequent sessions (i.e., weekly) [30].	Each group session begins with a recap of the previous week’s topic, introduction to this week’s session and ends with a “what will I do now” section. The intervention is spread over several weeks to allow opportunities for reflection and review
Content should be individualised and determined by personal goals, rather than being professionally directed and there should be a focus on self-efficacy enhancing strategies [26,27,29,31].	Stroke survivors are encouraged to make a personally relevant action plan Facilitators encourage discussions between stroke survivors, rather than being didactic

Figure 2. The aim and core focus of the MLAS programme.

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An image with a circle in the middle saying achieve, to represent the main aim of MLAS. Surrounding this is another circle saying hope, independence and confidence, which MLAS aims to build or maintain. Surrounding that is a circle saying prevention, physical, social and psychological which are the four main topic areas in MLAS. Surrounding all this is information, as information sharing underpins the topic areas.

Table 2. Topics and corresponding theories and strategies to support the programme aims within each session of MLAS.

Session	Topics	Corresponding theory, model or approach to support programme aims	Tools used within the session to support
Individual appointment (pre-group session)	Outline of MLAS programme and group session commitments. Opportunity for participant to share their personal stroke experience and story. Identification of potential barriers to attendance or participation and supportive strategies to address	Narrative approach. COM-B: opportunity	Individual record sheet: record key components of their story of living with stroke and anything that can be done to support participants to attend group sessions
Group session: stroke journey	Introduce MLAS programme and the narrative approach and supporting road map resource. Education: what is a stroke (and neuroplasticity)? Emotional reactions to stroke from stroke survivor and carer perspective (the stroke passenger analogy). Opportunity to set a goal/action for the next week.	Narrative approach COM-B: psychological capability	Map resource and metaphor of a car journey used to discuss experiences post-stroke.
Group session: managing health & wellbeing	Review of previous weeks actions/goals Education: risk factors for stroke and & lifestyle changes to reduce stroke risk. Making lifestyle changes: emotions and motivation. Action plan.	COM-B: Psychological capability; reflective & automatic motivation; social opportunity Social learning theory	Motivational interviewing: Decisional balance. SMART goal setting and action planning
Group session: roadblocks	Review of previous weeks actions/goals Roadblocks on the journey: barriers and circumstances that block managing life after stroke. Problem solving. Opportunity to set goal/action for next week.	Cognitive behavioural therapy approach Problem solving therapy approach	Roadblocks on the map resource (journey metaphor)
Group session: moving forwards on my journey	Review of previous weeks actions/goals. Your relationships* Revisit stroke journey and recap main messages of programme. Moving forward – how will health and wellbeing be maintained post programme. Opportunity to set goal/action.	Problem-solving therapy approach COM-B: reflective motivation; physical opportunity	Map resource (journey metaphor) “What will I do now?” worksheet
Final individual appointment	Provide closure to the programme. Reflection on programme and any further needs. Signpost to other services.	Narrative approach.	Individual copy of map resource Journey metaphor to reflect on where participants feel they are now

*Topic added in following the iterations based on feedback.

COM-B: The capability, opportunity, motivation–behaviour model.

Figure 3. Format of the MLAS programme.

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An image with 6 boxes, the first box on the left shows the first session of MLAS is an individual appointment with a facilitator, lasting 45 minutes. To the right of this, are four subsequent boxes, showing the next sessions of MLAS are group sessions, each one week apart and lasting 2.5 hours titled Stroke Journey, Managing Health and Wellbeing, Road blocks and finally Moving Forward on my Journey. The last box on the right shows the final session is an individual appointment with the facilitator lasting 30 minutes, which is 4 weeks after the final group session.

Figure 4. Timetable and content of sessions for MLAS following the iterations.

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A flow chart showing the ordering of sessions after revisions. A participant will have a first individual appointment, then attend the Stroke Journey group session then will undertake either option A (Managing Health and Wellbeing followed by Roadblocks session) or option B (roadblocks then managing health and wellbeing). Whether option A or B is taken, all participants’ final group session is Moving Forward on my Journey followed by the final individual appointment.

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