Despite major pharmaceutical and technological innovations since the discovery of insulin 100 years ago, diabetes self-management and achieving a high-quality of life remains a challenge for adolescents with type 1 diabetes (T1D). Caregivers of adolescents with T1D can also experience negative impacts such as anxiety, stress, and conflict. Engaging peers or individuals with lived experience is an emerging strategy to support individuals living with chronic disease. Few studies have engaged adolescents with T1D and their caregivers in co-designing peer-led self-management interventions to support adolescents with T1D and their caregivers.
The goal of this project is to engage adolescents (ages 14-18 years), caregivers (primary support for an adolescent with T1D), diabetes clinicians, community partners, and researchers in co-designing equitable, accessible, and culturally inclusive peer support interventions for adolescents with T1D and their caregivers using a community-based participatory research approach.
This project uses four phases to engage the T1D community in co-designing peer support interventions.
PHASE 1: Brings together adolescents, caregivers, clinicians, community partners, and researchers through a Community Advisory Board, to advise, guide, and navigate all project decisions. We will recruit and train adolescent and caregiver peer co-researchers to conduct project activities.
PHASE 2: Uses digital storytelling workshops with adolescents and caregivers to gather insights into experiences with self-management including peer support to develop a series of stories.
PHASE 3: Includes a knowledge dissemination and exchange event, combined with a priority setting exercise with a broader audience of adolescents, caregivers, clinicians, researchers, and community partners.
PHASE 4: Includes a hackathon-style event to co-design interventions and ideas for feasibility trials with outcomes that are relevant to patients, caregivers and diabetes clinicians.
This project will demonstrate that peer support programs for adolescents with T1D and caregivers can be more meaningful, accessible, and inclusive if they are intentionally co-designed with service users and align with community needs and values. We will develop an implementation toolkit with project findings for dissemination across T1D and community networks and presenting the proposed interventions and ideas for trials to the other paediatric diabetes centres in Ontario. These project outcomes will improve the capacity for meaningful patient-oriented clinical research and clinical trials in the area of T1D and peer support.
PARTNERSHIPS: Amsterdam University Medical Centre, Centre for Community Based Research, Centre for Innovation in Peel Supports, Diabetes Action Canada, McGill University, Peel Family Education Centre, Provincial Council of Maternal and Child Health, StoryCentre Canada, University of Manitoba