The concepts of illness or disease? Roles impacting healthcare for patients with type 1 diabetes in adulthood

Background, aims and objectives: In adulthood many patients with type 1 diabetes have difficulties reaching the goals of good metabolic control and apparently find it unhelpful to attend diabetes clinics. In addition to medical treatment, a focus on psychological problems is recommended, as diabetes self-management can be very challenging requiring both motivation and courage to accept to be and to appear different from others. Methods: In this case-study of the encounter between nurses and young patients with type 1 diabetes and poor metabolic control we used field observations of the encounter and semi-structured interviews, one focusing on the encounter and a second on life with diabetes. Additionally, a focus-group-discussion was used to explore the encounter as well as how the patients were coping in everyday life with diabetes. Kleinmanns two perspectives on chronic conditions, disease/illness, as well as symbolic interactionism using Goffmans metaphor of drama, were used in the analysis. Results: Our findings suggest that during adulthood patients walked into the clinic appropriating the role of good patients cooperating with the nurses mainly on disease problems. Walking out from the clinic they were no longer patients but ordinary young people trying to hide in the role as a patient. In everyday life, they had many barriers which prevented them from prioritizing their diabetes. Conclusion: A focus on illness, and thereby on the wellbeing of the patients, may have to play a more prominent role in diabetes treatment and there seems to be a need for a different approach towards the care of these patients.