Trying to be like everybody else: A qualitative study revealing the importance of social contexts and illness representations among adolescents with type 1 diabetes and their parents

Abstract

ObjectiveType 1 diabetes is one of the most common chronic conditions in young children and adolescents. During the period of adolescence, young people with diabetes often struggle with self-management and have compromised health-related quality of life. This often leads to familial conflicts affecting all family members negatively. The aim of this study is to provide qualitative insight into the everyday life of families with adolescents with type 1 diabetes.MethodsThe data consisted of participatory family workshops conducted using interactive dialogue tools. The total number of participants was 33 (adolescents n = 13, parents n = 20). The adolescents were between 15 and 17 years. The data were analyzed using systematic text condensation.ResultsThe results showed two main themes. The first theme, Diabetes-friendly and unfriendly social contexts, highlighted how the (dis)comfortability of disclosing diabetes was a significant factor in achieving optimal metabolic control. For parents, it affected their perception of social support. The second theme, incongruent illness representations among family members, dealt with the extended family conflict during the period of adolescence.DiscussionInsights from our study could help healthcare professionals apply a family-centered approach minimizing family conflict and supporting metabolic control when consulting families with adolescents with type 1 diabetes.