The feasibility of a self-management programme (My Life After Stroke; MLAS) for stroke survivors

Figures & data

Figure 1. Structure and content of the MLAS programme. A flow chart showing the ordering of MLAS sessions. MLAS starts with a first individual appointment, followed by the Stroke Journey group session then will undertake either option A (Managing Health and Wellbeing followed by Roadblocks sessions) or option B (Roadblocks then Managing Health and Wellbeing). Whether option A or B is taken, the final group session is Moving Forward on my Journey followed by the final individual appointment.

Table 1. outline of the 3-day facilitator training course.

Training Day	Topics
1 – Stroke Association bespoke “Stroke awareness” training	What is a stroke
	Recovery and reablement
	Supporting communication
	Family, carers and relationships
	Cognitive effects of stroke
2 - Core facilitator behaviours	MLAS philosophy
	Active listening skills
	How to self-reflect on delivery
	Providing feedback to peers
3 - MLAS-specific	Theories underpinning MLAS
	Walking through of the curriculum
	Having a go
	Planning for facilitation of MLAS

Table 2. Demographics of stroke survivors and carers that attended MLAS.

	Stroke survivors N = 17	Carers N = 7
Age in years (mean, SD)	75.00 (6.75)	71.86 (7.34)
Gender (male : female)	9 : 8	2 : 5
Smoking status (n=)
current:	0	0
ex:	10	1
never:	7	6
Lives with (n=)
Alone:	3	N/A
Spouse:	13
Family:	1
Employment status (n=)
Retired:	14	7
Volunteer:	1	0
Carer:	1 (Part-time)	0
Leave due to ill health:	1	0
Months since first stroke (median, range)	54 (3–354)	N/A
Number of strokes (n)		N/A
1:	15
2:	0
3:	2
More than 3:	0
Type of stroke (n)		N/A
Ischaemic:	11
Haemorrhagic:	2
Unknown/Not reported:	4

Figure 2. Recruitment flow chart. A flow chart showing 168 people were invited to take part in the MLAS feasibility study, leading to 90 who replied, 36 of these were interested in the study. 17 consented and 15 completed the study. Reasons for not being interested or consenting or withdrawing are shown and included people having other commitments or being unable to attend session dates, mobility or transport problems to get to appointments, feeling too well or fully recovered from their stroke, their stroke being too long ago and some people did not provide a reason.

Table 3. Attendance rates and reasons for non-attendance for each MLAS session.

	Attendance rate		Reason for non-attendance (where applicable)
	Stroke Survivors	Carers	Stroke Survivors	Carers
Individual appointment 1 (face to face)	17/17	7/7	N/A	N/A
Group session 1	16/17	7/7	1 withdrawal (unknown reason)
Group session 2	15/17	7/7	1 withdrawal (unknown reason) 1 hospital appointment	N/A
Group Session 3	16/17	6/7	1 withdrawal (unknown reason)	1 not recorded
Group Session 4	13/17	6/7	1 withdrawal (unknown reason) 2 on holiday 1 unwell	1 on holiday
Individual appointment 2	15/17	5/7	2 withdrawals (1 unknown reason, 1 forgot appointment)	1 withdrawal (forgot appointment) 1 unwell

Table 4. Baseline and change in stroke survivor questionnaires scores.

Questionnaire	N=	Baseline score Median (Range)	Change Median (Range)
Southampton Stroke Self-management (SSSMQ)	12	102 (55–151)	3.5 (−12–50)
Stroke-specific Quality of Life (SS-QOL)	15	3.02 (2.22–4.8)	0.04 (−1.37–1.63)
Stroke Impact Scale – Short-form (SIS-SF)	13	78.13 (46.88–100)	3.19 (−21.88–15.63)
Stroke Self-Efficacy (SSEQ)	15	110 (61–130)	0.01 (−53–32)

NB – for all measures, a higher score is positive. For example a higher SSSMQ score means participants feel better able to manage their health; SS-QOL, have a better quality of life; SIS-SF, have recovered more and SSEQ feel more confident to carry out tasks.

Table 5. Summary of participant feedback in the feasibility study.

Area of feedback	Written feedback comments
General feedback – what was useful	“reflections of the course” (Participant 5)
	“reaffirming my resolve to progress” (Participant 12)
	“to help you be a bit more positive” (Participant 8)
	It was “very informative and helpful” (Participant 10)
	“course very good” (Participant 9)
	“I think the course will help all stroke survivors” (Participant 13)
General feedback – what could be improved	“I could not better it” (Participant 1)
	“ I don”t think it could” (Participant 11)
	(By making) “better use of the workbooks” (Participant 4)
	“having more time in group session to look at workbooks” (Participant 6)
Topic / structure	“over the weeks the course brought me out of my shell” (Participant 14)
	“group meeting was really good, can’t recommend it enough” (Participant 15)
	Some aspects could be improved by having “a little more time to deeper discuss points” or “if more time (was given) on each subject and therefore (the course) extended to 6 sessions “ (Participant 5)
Timing	“To have a course not out of hospital, maybe a few months later” (Participant 13)
	“It would have been better if I had the course after the stroke” (Participant 1)
	“I think a similar course should be made optional for person that are just recovering from a stroke with persons such as ourselves that have found ways of dealing with post stroke problems” …”Although the numbers (of stroke survivors) were about right, it might have been more useful if some people attended that were more disabled than ourselves” (Participant 5)
Carer role	“ [MLAS] Focuses on the carers as well as stroke victims”, “carer help and back up” [was particularly useful] (Participant 16)
	It was useful “to find out what (stroke survivor name) got out of the course” (Participant 7)
	“We’re glad we came” (Participant 15)
Facilitators	“done a good job” (Participant 1)
	(facilitator name) was “understanding of my current position” (Participant 3)
	“I am grateful for the time the facilitators put in and their warm, friendly approach” (Participant 4)
	The course “was well handled” (Participant 5)
Outcome measures	There were “too many questionnaires and all in slightly different format and phrasing which made it difficult as I got tired” (Participant 4).