Characteristics of adolescents with chronic poorly controlled type 1 diabetes - A qualitative study.

AIMS: During adolescence, a minority of adolescents with type 1 diabetes have persistent and serious poor metabolic control. The main cause of poorly controlled diabetes during adolescence seems to be poor adherence to therapy. The reasons are intertwined between social, family, psychological, and other factors. The aim of our qualitative study was to describe the characteristics of adolescents with chronic poorly controlled diabetes and those of their families.

METHODS

We conducted 10 semi-structured interviews with adolescents aged 12-18 years and whose annual average hemoglobin A1c was greater than or equal to 9.5%. Six semi-structured interviews were conducted with parents (either with both or one parent). Interviews were then analyzed according to the comprehensive microanalysis method.

RESULTS

We selected three recurrent themes: family life and diabetes, diabetes care and issues, and negative representations of the disease. Family situations were often complex, with limited involvement by fathers and many conflicts regarding medical care. Adolescents were disinvested from day-to-day care although they were aware of the possible long-term complications. Adolescents and their families had a very negative outlook of and experience with diabetes.

CONCLUSION

The study highlighted family issues and difficult disease-related experiences among adolescents with persistent and poorly controlled diabetes. As a part of a comprehensive medical approach, it seems necessary to take into consideration the daily care of patients with diabetes within their unique family dynamic.