Co-Designing a National Family Handbook for Childhood Brain Tumor.

Area of Science:

• Pediatric Oncology
• Health Psychology
• User Experience Design

Background:

• Parents of children with brain tumors experience significant unmet information needs.
• Existing research highlights the positive impact of information provision on family self-efficacy and well-being.
• A gap exists in tailored, Australian-specific resources for families affected by childhood brain tumors.

Purpose of the Study:

• To co-design culturally relevant and accessible information resources for Australian families of children with brain tumors.
• To address identified informational gaps and support family self-efficacy.
• To develop a resource that aligns with the needs and preferences of both consumers and clinicians.

Main Methods:

• A mixed-methods approach was employed, following the Double Diamond Design Framework.
• Journey mapping workshops and iterative feedback sessions involved parents and clinicians.
• An online survey identified preferred information delivery modes, and a landscape analysis informed resource development.

Main Results:

• The co-design process involved nine mothers and twelve clinicians in journey mapping and content adaptation.
• A survey of 46 respondents indicated a preference for multi-modal information delivery.
• The final resource underwent revision by 23 clinical and consumer reviewers, ensuring its suitability.

Conclusions:

• Co-design and self-efficacy theory were central to developing an empowering resource for families.
• The resulting resource is available in multiple formats (book, digital, audiobook) and disseminated widely.
• The project successfully created a fit-for-purpose national resource addressing critical information needs for childhood brain tumor families.