Co-design and usability evaluation of a pilot module to support health literacy development in young people with cerebral palsy: A consumer-led approach.

BACKGROUND

Young adults with cerebral palsy (CP) experience challenges navigating adult healthcare systems due to limited access to age-appropriate, CP-specific information. Health literacy is a key enabler of autonomy and participation, yet few customised resources have been co-designed with this population.

OBJECTIVE

To co-design and pilot an online health literacy education module 'Your health' with young adults with CP, their parents/carers, and healthcare professionals, and assess initial usability.

METHODS

A three-stage sequential mixed methods design within an integrated knowledge translation framework was used. Stage 1 involved focus groups and interviews with young adults with CP (n = 8) and healthcare professionals (n = 14) to explore health information needs. Stage 2 involved iterative module co-design across 13 Working Group meetings with young adults with CP, parents/carers, and clinicians. Stage 3 involved usability testing with young adults with CP (n = 11) using a modified System Usability Scale (SUS) and optional qualitative feedback. Interview and feedback data were thematically analysed to identify key insights and usability considerations.

RESULTS

Stage 1 findings highlighted unmet needs for credible, accessible, and individualised health information. The co-designed module addressed these needs via lived experience content, accessible design features, and user-driven navigation. Usability testing yielded a mean SUS score of 80.2 (range 57.5-100), indicating strong usability. Participants found the module engaging, clear, and relevant, with minor suggestions for improvement.

CONCLUSIONS

This study demonstrates the feasibility and value of embedding co-design in health literacy resource development, providing a scalable model to support autonomy and healthcare participation among young adults with CP.