Background: Childhood stroke affects up to 120 infants and 400 children annually in Australia. It is a leading cause of childhood disability and can result in physical, cognitive, and psychosocial challenges that significantly affect learning and participation at school. Families consistently report limited educator awareness and fragmented support for children navigating school.
Aims: Our Education Journey is a national Stroke Foundation initiative designed to address these gaps by co‑designing practical education resources that strengthen collaboration between families, educators, and health professionals.
Methods: A mixed‑methods co-design approach engaged survivors of childhood stroke, parents, educators, and allied health professionals through surveys (n=4 survivors, n=22 family members, n=7 educators, n=2 health professionals) and focus groups (n=3 survivors, n=9 family members, n=3 educators, n=1 health professional). Stakeholder insights informed iterative development and refinement of resources to ensure relevance and usability across diverse educational settings.
Results: Participants identified key challenges, including limited educator awareness of childhood stroke, difficulties advocating for student needs, limited access to information about available supports, and insufficient tools to guide school transitions and communication. These findings informed the co-development of practical guides, transition tools, and educator-focused resources outlining educational impacts of childhood stroke and recommended supports.
Conclusion: Embedding lived experience within a co-design process can produce meaningful, inclusive educational resources. Our Education Journey resources aim to improve educator understanding, strengthen collaboration between schools and families, and enhance school participation for children affected by childhood stroke. Processes used and learnings have applicability across other stroke, paediatric health and education contexts.