Clarifying responsibility for self-management of diabetes in adolescents using insulin pumps - a qualitative study

Aim. To gain insight into and generate theoretical knowledge about the processes involved when insulin pump-treated adolescents take or miss taking their bolus doses. Background. Insulin pump treatment is considered the most physiological way to imitate the healthy body's insulin profile in adolescents with diabetes. Despite insulin pump treatment, it is hard to maintain near-normal glucose control in adolescents; one reason for this is missed bolus doses with meals. Method. In this qualitative interview study, the grounded theory method was chosen as a model for the collection and analysis of data. Twelve adolescents (five boys and seven girls, mean age: 14 4 years, range: 12-19 years) from different Swedish paediatric diabetes clinics, four parents and one paediatric diabetes nurse were interviewed during 2008 and 2009. Two adolescents and two parents were re-interviewed after approximately 10 months. Data from clinical visits and diabetes camps were used to verify emerging categories. Findings. Responsibility in the context of taking or missing bolus doses emerged as the core category. It is elaborated and explained through three subcategories: distribution of responsibility, transfer of responsibility and clarification of responsibility. The findings describe the need to clarify the responsibility for diabetes self-management in continuous negotiations between adolescents and parents to avoid missed doses. Conclusion. Negotiations to clarify the responsibility for diabetes self-management must be a continuous process between adolescents and parents. Diabetes care teams can facilitate and encourage these negotiations.