Empowering Youth with Type 1 Diabetes: A Conversation on Engagement
November is American Diabetes Month. In honor of the roughly 240,000 American youth diagnosed with type 1 diabetes1, Sprout highlights a 2020 study examining the role of youth engagement in improving the consistent use of continuous glucose monitors (CGM).2 These innovative devices offer real-time data capture, enabling more informed disease management decisions and fewer long-term diabetic complications.3 However, the effectiveness of CGMs relies on consistent device use.2,3
Insights from Miller et al. (2020) suggest that involving children and adolescents in the decision to initiate this type of therapy is one of the key factors in improving consistent CGM use.2 This is consistent with other research demonstrating the importance of self-efficacy (confidence) in predicting treatment adherence in youth with type 1 diabetes.4
Sprout scientist, Anna de la Motte, sat down with a family friend who has lived with type 1 diabetes since a young age to gain his perspective on what youth engagement really means, and what could be done to increase it.
A Glimpse into Youth Engagement
How were you involved in your care when you were first diagnosed?
“I was diagnosed when I was 5 years old. At that age, I wasn’t really capable of making all the decisions for myself or fully understanding everything that was going on. We had some tools, basically just a piece of paper for writing down blood sugars, and then we would look at them every year with the doctor to see how I was doing. I felt involved in reviewing the blood sugars.”
What could be done to improve engagement with young patients?
“It would be helpful if there was some type of psychological counsellor who was also involved in the process. Someone to ask, ‘how are you feeling about these things,’ and to see what they’re actually concerned about in their care and how they feel about the decisions. It would be really useful to see if there are things they aren’t satisfied with.
Kids will do whatever they’re told to because they don’t really have agency. They’re minors and they might not feel stable enough to make decisions about their own care. Having someone to see how the kid really feels, how they understand their diabetes and how it affects their life, and how they are feeling about the different options presented to them, would be a good thing. You’re not asked those questions as a little kid, it’s mostly presented as ‘here is the thing that’s going to help you.’”
How did your parents or doctors involve you in your own care when you were younger?
My parents were really good at supporting me in whatever way I asked them for. From my perspective, managing diabetes is super independent. Some families are more instructive about what you can and can’t eat; my family was like, make sure you count your carbs and keep track of things. This helped when I was finally living alone because they can’t really manage it for you. It becomes your choice on the food you consume or not. My parents allowed me to do what I thought was right”.
Empowering Young Patients
The insights shared by this person who has lived with type 1 diabetes since a young age highlight the importance of engaging young patients actively in their care. While they may not have the maturity to make all decisions themselves, providing a supportive and empathetic environment, including psychological counselling, can go a long way in making them feel heard and understood.
Furthermore, allowing them to take ownership of their care, within safe and reasonable boundaries, fosters a sense of independence and empowerment. It’s a collaborative approach where young patients are not just recipients of treatment but active participants in their health management.
In recognition of National Diabetes Month, let’s continue to emphasize the significance of youth engagement in diabetes care. By listening to their needs, addressing their concerns, and encouraging them to be active participants in their health journey, we can help empower the next generation to manage their condition effectively and lead healthier lives.
American Diabetes Association (2022, July 28). Statistics about diabetes. https://diabetes.org/about-us/statistics/about-diabetes
Miller, V.A., Xiao, R., Slick, N., et al. (2020). Youth involvement in the decision to start CGM predicts subsequent CGM use. Diabetes Care, 43(10), 2355-2361. https://doi.org/10.2337/dc20-0348
Didyuk, O., Econom, N., Guardia, A., et al. (2021). Continuous glucose monitoring devices: Past, present, and future focus on the history and evolution of technological innovation. Journal of Diabetes Science and Technology, 15(3), 676-683.
Rasbach, L.E., Volkening, L.K., Markowitz, J.T., et al. (2015). Youth and parent measures of self-efficacy for continuous glucose monitoring: survey psychometric properties. Diabetes Technology & Therapeutics, 17(5), 327-334.