Co-designing Peer Support Interventions for Adolescents with Type 1 Diabetes and their Caregivers: A novel integration of community-based participatory research and human-centred design thinking.

Résumé

INTRODUCTION: Despite technological advances, managing type 1 diabetes (T1D) and achieving a high quality of life remains challenging for adolescents. Their caregivers also experience anxiety, stress, and burnout from management responsibilities. Peer support is an approach to help alleviate these challenges, yet most interventions are not co-designed with lived experience and may not be culturally relevant or aligned with patient or caregiver priorities. This paper describes the application of human-centred design (HCD) and community-based participatory research (CBPR) to co-design peer support intervention prototypes for adolescents and young adults (AYAs) with T1D and their caregivers.METHODS: The project unfolded in three stages: 1) Empathize and Define-AYAs with T1D and their caregivers created digital stories to share first-person narratives; 2) Ideate-a community event showcased the digital stories to diverse diabetes shareholders to generate and prioritize ideas for peer support interventions; 3) Prototype-a Hackathon brought together AYAs with T1D and caregivers to co-design peer support solutions based on priority ideas.RESULTS: Seven AYAs and four caregiver digital stories were produced in stage 1. In stage 2, 52 unique ideas were generated at the community event and refined into six Hackathon challenge statements. In stage 3, six peer support prototypes were developed during the Hackathon, with the winning designs focusing on addressing diabetes-related stigma in schools and supporting caregivers of newly diagnosed youth.CONCLUSION: Integrating CBPR and HCD, alongside innovative co-design methods, can effectively center lived experience to generate actionable, community-informed peer support prototypes for adolescents with T1D and their caregivers.