OtherFrontiers in rehabilitation sciences2022

Co-designing resources to support the transition from child to adult health services for young people with cerebral palsy: A design thinking approach.

Jennifer Fortune, Jessica Burke, Conor Dillon and 8 others

PMID 36589713

WHAT IT FOUND

Young people with cerebral palsy prioritized self-management tools like transition apps and checklists.

Parents focused more on service-level changes. Co-designing these resources is feasible, but this process only created prototypes. It has not yet been tested to see if it actually improves transition outcomes.

Key findings

01The co-design process generated eight resource prototypes, which were narrowed to four for further refinement: digital stories, written information, a transition website, and checklists.

02Young people's ideas focused on tools for self-management and autonomy, while parents highlighted needed changes at the service and system levels.

03Accessibility emerged as a recurring theme and was established as a core design principle for all resources.

STILL TO COME

How it was doneWhat they found

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What it does not show

The study involved only eight advisory group members, which severely limits the generalisability of the findings to the wider population of young people with cerebral palsy. The resources are prototypes only; they have not been tested for effectiveness, usability, or impact on actual transition outcomes. The process was conducted online due to the pandemic, which limited hands-on co-design methods and may have affected engagement. Between-session work, such as bundling ideas and refining insights, was completed by researchers rather than collaboratively, which may have introduced bias.

Declared interests

The study was funded by the Health Research Board and the Central Remedial Clinic.

The easy way to misread this

Do not assume these resources are effective or ready for clinical use. The paper describes the creation of prototypes through a small advisory group. It does not report any testing of these resources with a larger sample, nor does it show that they improve transition outcomes.

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The study

Participants
8 advisory group members (4 young people, 4 parents)
Certainty of evidence
Low

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    Jennifer Fortune, Jessica Burke, Conor Dillon, et al. Co-designing resources to support the transition from child to adult health services for young people with cerebral palsy: A design thinking approach. Frontiers in rehabilitation sciences. 2022.

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