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

Abstract

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.