JMIR Publications

ABSTRACT

Background:

Type 2 Diabetes (T2D) is a complex chronic disease that poses significant mental health challenges to affected youth. Despite calls for youth-centered research in this area, qualitative and mixed methods research is lacking, and longitudinal understandings of the mental health experiences of youth have not been generated. Living labs as interactive knowledge exchange and longitudinal research platforms have potential to generate such understandings.

Objective:

The objectives of the proposed research are to: 1. co-design with youth and parent co-researchers a virtual living lab platform with an embedded registry of youth with T2D; 2. use this platform to generate longitudinal understandings of youths' mental health experiences; 3. identify youth priorities for research and care based on the thematic data, and 4. co-design an arts-based knowledge translation resource to communicate these priorities.

Methods:

This study proposes a 3-stage longitudinal qualitatively driven mixed methods design. Stage 1 involves co-designing an online platform with youth and parent co-researchers over a 4-month period and establishing a user-registry of English-speaking youth (ages 10-25) with T2D (diagnosed at age 18 or younger) in Canada, and their parents or guardians. In stage 2, up to 50 youth will be purposively selected from the registry to complete baseline mental health measures, followed by 12 content modules using diary and arts-based response methods. Inductive thematic and mixed methods analysis will inform stage 3. Stage 3: Up to a third of the stage 3 participants will be purposively selected to identify priorities for mental health research and care, and co-design arts-based KT resources to impart critical research findings to stakeholder groups identified with participants and youth co-researchers. This is an experimental modality for data collection and participant numbers may be fewer; however, methodological insights regarding engagement will be collated and published to support digital strategy in future work.

Results:

The Research Ethics Board at the University of Manitoba granted ethical approval for this study. Four youth co-researchers have been recruited to co-design Brightspark – Canada's first virtual living lab platform for youth and families with T2D. By establishing an embedded registry of youth with T2D enabling discrete studies and module-based inquiries over time. The platform is currently in development. Recruitment and data collection will begin in March 2024. We anticipate that the study will be completed by December 2025.

Conclusions:

Youth-Onset T2D is a significant challenge, with less than 30% of youth with T2D achieving treatment targets. Self-management in youth with T2D is further complicated by mental health, psychosocial morbidity, identity formation, stigma, blame, shame, historical oppression, and structural barriers to health. The study will contribute a sustainable structure to understand this major issue through a novel living lab, providing opportunities to support these efforts and generate critically needed understandings of youths' mental health experiences to advance youth-centered research and care.