Experiences of living with Type I diabetes: psychological distress and clinical implications

Living with diabetes can present a number of challenges for individuals concerned. Managing diabetes day to day involves a complex medication and behavioural regime which interrelates with various important psychosocial factors. Previous research suggests that people living with diabetes are as much as two-three times more likely to experience mental health difficulties compared with the general population. However evidence is emerging that many of these difficulties may in fact be a direct result of feeling distressed about living with a complicated and stressful chronic health condition, and not necessarily resultant from co-morbid psychiatric illness. These experiences are known by the term diabetes related distress. To date psychosocial factors related to living with diabetes have mainly been explored quantitatively. However, qualitative approaches have increased in popularity in diabetes research in recent years and can add valuable and rich information to existing data from quantitative research. Extant qualitative research in diabetes has mainly focused on people living with type 2 diabetes or children with type 1 diabetes, leaving adults living with type 1 diabetes as a relatively under researched group. This study aimed to answer the following research questions:Primary: What are the lived experiences of adults with type 1 diabetes? And secondary:What aspects of living with type 1 diabetes are experienced as distressing? ; and What are the potential implications for health services? Eight adults living with type 1 diabetes were interviewed about their experiences. Interviews were transcribed and analysed using interpretative phenomenological analysis. Six major themes emerged from participants' interviews. These were: Experiences of diagnosis, Physical impact of type 1 diabetes, Psychological impact of type 1 diabetes, Social impact of type 1 diabetes, Influence of healthcare teams and Ways of coping. Example subthemes are; Feeling frustrated and restricted by treatment regimes, psychological and emotional distress, constant awareness and worry, impact on development and sense of self, stigma and lack of understanding from others, support from diabetes team and experiences of a simplistic view of diabetes. Participants reported a wide variety of experiences related to the biological, psychological and social components of type 1 diabetes. Some of these were experienced as highly distressing whilst others were more easily managed. This was often dependent on individual differences and was not necessarily static over time. Further awareness of this in practice and a focus on diabetes and its treatment within the context of people’s unique psychosocial circumstances is highly important in supporting people to reduce diabetes related distress, which can improve glycaemic control, health related quality of life and wellbein