Co-designing a National Family Handbook for Childhood Brain Tumor

Abstract

Background/Objectives: Parents report unmet information needs relating to childhood brain tumors. Existing research shows that providing information to families supports self-efficacy and well-being. The project therefore aimed to co-design resources tailored to the informational needs of families navigating childhood brain tumors in Australia. Methods: Mixed methods were used across multiple phases. A landscape analysis in Phase 1 confirmed the gap in Australian resources as well as the identification of international resources suitable to inform local solutions. Following the Double Diamond Design Framework, subsequent phases of the project aimed to discover and define the problems faced by families before developing and delivering the solution. Parents of children with brain tumors participated in a journey mapping workshop, content adaptation through feedback, and an online survey to determine the preferred delivery mode of information. Clinicians provided iterative feedback as the resource was developed and refined. Results: Nine mothers participated in journey mapping and iterative adaptation of the resource along with twelve clinicians. There were 46 respondents to the survey, which identified a preference for multi-modal delivery of information, and 23 clinical and consumer reviewers in the final revision phase. The process of adaptation is presented, providing transparency on the development of this national resource. Conclusions: The use of self-efficacy theory and co-design was pivotal in this project. Integration of concepts from self-efficacy moves beyond simply presenting information to empowering the audience to feel capable of the task ahead of them. Co-design ensured the content and tone of the resulting resource are fit-for-purpose from the perspective of both clinicians and consumers. The resource is available as a physical book, digital resource, and audiobook and disseminated through children’s hospitals, professional networks, and brain tumor support groups.