Perceptions of Adolescent Patients of the “Lived Experience” of Type 1 Diabetes

The care and management of adolescents with type 1 diabetes presents numerous challenges that are inherent to the fears, attitudes, and perceptions of their illness. This qualitative study aimed to explore the “lived experience” of individuals with type 1 diabetes. In-depth interviews were conducted with 20 patients diagnosed with type 1 diabetes in their adolescent years to elicit their views, perceptions, and concerns regarding living with diabetes. All interviews were conducted and analyzed using the principles of grounded theory. Five categories defining the patients’ lived experience were elicited: Barriers, Develop Skills, Manage Emotion, Social World, and Health Care Professionals. The problems experienced by adolescents with type 1 diabetes are multifactorial. Existentially, type 1 diabetes affects their daily activities and impinges on their academic achievement and personal aspirations. They have great difficulty coping with their health status and highlight a lack of empathy from health care professionals (HCPs). Their major fear is of hypoglycemia, resulting in their subsequent focus of preventing hypoglycemic episodes. Indeed, regardless of consequence, blood glucose levels are often deliberately kept above recommended levels, which serves to decrease the effectiveness of their health care management. This study shows that the quality of care provided for adolescent patients with type 1 diabetes is failing to meet their expectations and falls short of the essential standards commensurate with current health care policy. Improvements in long-term care management for these patients require changes in both patients’ and professionals’ understanding of the disease and of the ways it is managed.