Patients’ experience of and participation in a stroke self-management programme, My Life After Stroke (MLAS): a multimethod study

Abstract

Objective A self-management programme, My Life After Stroke (MLAS), was developed to support stroke survivors. This evaluation reports patients’ experience.Design Multimethod, involving interviews and questionnaires.Setting 23 general practices in the intervention arm of a cluster randomised controlled trial in East of England and East Midlands, UK.Participants People on the stroke registers of participating general practices were invited to attend an MLAS programme.Interventions MLAS comprises one-to-one and group-based sessions to promote independence, confidence and hope.Primary and secondary outcome measures The primary outcome was uptake of the programme. Participants who declined MLAS were sent a questionnaire to ascertain why. Attendees of four programmes completed evaluation forms. Attendees and non-attendees of MLAS were interviewed. Ad-hoc email conversations with the lead author were reviewed. Thematic analysis was used for qualitative data.Results 141/420 (34%) participants (mean age 71) attended an MLAS programme and 103 (73%) completed 1. 64/228 (28%) participants who declined MLAS gave reasons as: good recovery, ongoing health issues, logistical issues and inappropriate. Nearly all attendees who completed questionnaires felt that process criteria such as talking about their stroke and outcomes such as developing a strong understanding of stroke had been achieved.Conclusions MLAS was a positive experience for participants but many stroke survivors did not feel it was appropriate for them. Participation in self-management programmes after stroke might be improved by offering them sooner after the stroke and providing a range of delivery options beyond group-based, face-to-face learning.Trial registration number NCT03353519, NIH.