Battling the loneliness of diabetes
Left to right: Hennessy, age 15 with her mom Jordan and Jayden, age 15
Over 2,500 kids in BC live with diabetes, and that number is growing. Many families have shared that they feel alone in their diagnosis, and that their friends, teachers or colleagues simply don’t know how to be supportive.
Feedback like this inspired the Diabetes Transformation Project (DTP) at BC Children’s Hospital. This initiative is
taking a multi-faceted approach to transforming pediatric diabetes care through family-to-family connections, education, training, research, and communication with experts who truly understand the challenges of a diabetes diagnosis.
Supporting each other and learning together
The DTP is using technology to bring families together with two peer-support projects: Huddle4Parents, for families of young children with diabetes, and HuddleNextGen, focused on adolescents and their families as older youth become more independent in managing their diabetes. These projects provide online sessions and group chats to create close connections between families across the province.
LearnDiabetes, another pillar of the DTP, is making reliable information more available to families managing diabetes. It features digitized learning materials so parents, caregivers and children can learn in a convenient and meaningful way.
Sharing data to support research
The BC Pediatric Diabetes Registry was started at BC Children’s Hospital to transform the care of diabetes patients today and tomorrow by capturing daily data on their experiences with the disease. This data could reveal key insights that might lead to new discoveries. In order to gather more information the DTP is expanding this data
collection across the province, and there are currently 758 patients enrolled in the registry.
With the guidance of patient families and experts across the province, BC Children’s Hospital and the DTP team aim to improve the experience of children and families with diabetes so they can spend less time focusing on diabetes and more time living their lives.
This article was originally featured in the Fall 2022 issue of Shine magazine.