Digital support for self-management in children with diabetes: Understanding their needs and developing a design concept

In this paper we present a study on the needs and requirements in a digital tool to support self-management in children and adolescents (0-18 years) with type 1 diabetes. The study was formally initiated by the Steno Diabetes Center North Jutland (SDCN), which wanted to develop a virtual universe that could support children and young people in coping with their disease. Through this study we interviewed the project manager from SDCN and the head of the family group in North Jutland. Furthermore, we observed a workshop involving health care professionals and learning specialists who were working with ideas for the virtual universe. We conducted two focus group interviews, one for children with type 1 diabetes and one for parents with diabetic children. The analysis of the data revealed very different ideas about what digital support is important for the self-management of this target group. Health care professionals focused on developing various learning materials using virtual reality or augmented reality, while the parents desired security and control and requested materials that could inform and educate people in their locale, such as school teachers, parents of their children's friends, etc. The children emphasized the importance of not being singled out and requested simple tools that could be used from their smartphones. They especially asked for tools that could help them manage their diabetes by themselves in a fast and effective way, e.g., making it easier to count carbohydrates and calculate their insulin intake. Based on the analysis, we developed suggestions for a design. The main lesson learned from this study was the importance of focusing on the actual users and their everyday lives in developing new tools, and not on technological possibilities.