Empowering futures: voices of children and young people in shaping diabetes research agendas

Aims: This study aimed to listen to children and young people with type 1 diabetes to determine which research was most important to them. We understood that managing diabetes could be challenging, especially dealing with painful insulin injections and strict food rules. By talking with children and young people, we sought to learn more about their needs and what mattered most to them in terms of research. Methods: This study was conducted by Diabetes UK in collaboration with the University of East London to understand what children and young people with type 1 diabetes need to better take care of themselves. The study involved 21 participants aged 6 to 17 from England, Wales, and Scotland. We conducted focus groups with children and young people, as well as separate proxy focus groups with parents/guardians of the youngest research participants. The parent/guardian focus groups supplemented the evidence from the children’s focus groups, with the study prioritizing the voices of children and young people, to explore the challenges they faced in managing diabetes at home, school, and during leisure activities.Results: Our study revealed significant issues in diabetes management across different age groups: 6–8-year-olds prioritize research for managing glucose levels at home, and educating catering assistants about diabetes; 9–11-year-olds prioritize easier-to-change pumps, and educating friends about diabetes; 12–14-year-olds focus on educating teachers, creating safe spaces for managing hypoglycaemia, and raising awareness about sports and mood fluctuations; 15–17-year-olds seek to reduce the burden of educating others about diabetes in school.Conclusions: This study is significant for future research and practice because it provides valuable insights that will guide future work in supporting children and young people with type 1 diabetes. By understanding their needs and priorities, we can develop strategies and policies that align with their lifestyles and expectations. This, in turn, will help them better manage their condition, reduce the risk of health crises, and improve their overall well-being as they grow older with diabetes.