Learning about Type 1 diabetes and learning to live with it when diagnosed in adulthood: two distinct but inter-related psychological processes of adaptation A qualitative longitudinal study

Abstract

Aim: To explore the experiences of adults with newly diagnosed Type 1 diabetes in order to understand the adaptive processes that occur in the early phase of the condition.

Methods: We conducted longitudinal semi-structured interviews with 30 adults newly diagnosed with Type 1 diabetes (age range 20-67 years; 16 men; median diabetes duration 23.5 months), recruited from hospitals in Denmark and the UK. The data were analysed using a narrative approach.

Results: The narratives could be grouped into three thematic areas: the diagnosis; learning about diabetes; and learning to live with diabetes. Diabetes was characterized as a major disruptor to the established and future life plans of participants, causing significant emotional distress. The narratives showed how early experiences triggered the development of ongoing psychological problems (fear of complications or hypoglycaemia) and diabetes distress, and that navigating different social scenarios (relationships and employment) could be challenging, leading to suboptimal self-management behaviours. The narratives also showed that health professionals often did not attend effectively to participants' emotional needs after diagnosis, and that the language used frequently triggered negative feelings, such as fear or a sense of failure.

Conclusions: Many of the common psychosocial problems associated with Type 1 diabetes seem to gestate in the early phase of life with the condition. There appear to be opportunities to enhance the support provided in this phase to minimize these problems.