Background: Contrary to expectations, children do not experience better stroke recovery than adults. The lifetime impact on children and their families is likely to be greater than in adults, because children surviving stroke face many more years living with disability. Research shows reduced levels of well-being for survivors of childhood stroke across a variety of domains. Families tell us of the dearth of help and support available, and that they feel alone and often helpless.
Aims: This project aims to address key barriers to recovery by developing new information products (guides, checklists, planning tools, podcasts, videos, blogs and learning modules), formalising partnerships and increasing awareness.
Methods: Following a codesign framework, the Stroke Foundation Childhood Stroke team are working alongside a Lived Experience Advisory Group, made up of survivors of childhood stroke and parents.
Results: This presentation will explore the value of lived experience and the codesign process. It will also provide an overview of the project plan, the resources that have been developed and what is planned for delivery throughout the 3-year project.
Conclusion: The Stroke Foundation Childhood Stroke Project will deliver much needed resources to survivors of childhood stroke and their families. The project will also raise awareness of childhood stroke and promote inclusion.