Background:
Post‑stroke fatigue (PSF) affects nearly half of stroke survivors, limiting function, activity, and participation. Post-stroke fatigue remains poorly understood with no evidence-based treatments available. Similarities between lived experience of pain and fatigue suggest psychoeducation could benefit fatigue. We aimed to translate proven pain psychoeducation for PSF.
Methods:
We used a 3-stage integrated knowledge translation approach to translate pain psychoeducation concepts for PSF. Knowledge users were recruited via the Stroke Foundation enableMe forum (stroke survivors and carers) and via public and private health service networks (clinicians). Knowledge users participated in 3 formal workshops, informal discussions, and iterative reviews of evolving intervention drafts. The co‑design process included synthesising areas of agreement, misunderstanding, experiential fit, and divergence which guided translation decisions.
Results:
Knowledge users who co-designed the intervention consisted of stroke survivors (n=9), carers (n=2) and clinicians (n=14). The final intervention was an 8-week psychoeducation program consisting of a booklet that supplements weekly 45‑minute telehealth sessions delivered by a clinician. Knowledge users shaped content adaptation, clarified concepts, and identified components requiring reframing or replacement. Most pain psychoeducation curriculum concepts (60%) translated to a fatigue context with minimal change. Language and visuals were adapted for clarity, and content was made aphasia accessible where possible. Behaviour change techniques were embedded, supporting reflective learning and engagement.
Conclusions:
Codesign allowed the successful translation of a psychoeducation intervention from chronic pain to stroke fatigue. Inclusion of knowledge users enriched the translation process and was essential prior to evaluating intervention acceptability and preliminary outcomes in a pilot trial.