Background: Previous research at the Princess Alexandra Hospital identified a disconnect between current stroke education practices and the needs of stroke survivors. Addressing this gap required a collaborative approach that centred survivor experience.
Aims: This study partnered with stroke survivors, support people, and clinicians to understand the lived experience and co‑design education solutions across two pathways: hyperacute stroke to home, and rehabilitation to home.
Methods: Using participatory action research, face‑to‑face co‑design workshops were conducted with stroke survivors, support people, and clinicians. Workshops focused on two phases: Capture (exploring and understanding the experience) and Develop (co‑designing education solutions).
Results: Participants included 5 stroke survivors, 4 support people, and 6 clinicians (rehabilitation group), and 5 stroke survivors, 3 support people, and 6 clinicians (hyperacute group). Across both pathways, participants prioritised process‑oriented education over stroke-specific information‑heavy approaches. Key needs included clearer orientation to units, a visual “journey map” outlining what to expect at each stage, and personalised information about their stroke with guidance on where to find further resources (e.g., My Stroke Journey booklet). Participants emphasised the importance of understanding the “what”, “why”, and “how” of care processes specific to their stroke during both acute and rehabilitation phases.
Conclusion: Co‑designed, process‑focused education offers a more relevant and empowering model for stroke survivors. By building understanding through embedding personalised stroke information within transparent acute care and rehabilitation processes rather than solely through stroke-specific information provision, these solutions have the potential to enhance well‑being and strengthen survivor–clinician partnerships across the stroke journey.