How do adults cope when the diagnosis is type 1 diabetes?

A qualitative study (from researchers at Kings College London) explores how adults with newly diagnosed type 1 diabetes experience and adapt to this new reality

By Sienna Russell-Green

Although it is often believed that type 1 diabetes is primarily diagnosed in childhood, almost half of all cases are diagnosed in adults aged over 30. Despite this, little is known about the psychological impact of developing type 1 diabetes as an adult.

Due-Christensen et al. (2018) conducted interviews with 30 adults with newly diagnosed type 1 diabetes. Their ages ranged from 20 to 67 years, and they had an average diabetes duration of 22 months. Participants were recruited from hospitals in Denmark and the UK. Follow-up telephone interviews took place 6 months after initial interviews.

Three thematic areas were identified: diagnosis; learning about diabetes; and learning to live with diabetes. Diabetes was a major disruptor to all participants’ lives both present and future, causing significant emotional distress. Adults required support in adapting to their condition emotionally, psychologically and socially – particularly in the early period of life with diabetes. If not properly addressed, emotional distress in this period led to psychological problems (e.g. fear of complications, and diabetes-specific distress) with implications for self-management and risk of long-term complications. One participant said: ‘I was terrified of hypos and still am… I kept my blood levels higher and higher and then I got into that bad routine… now I think it’s more a behavioral thing and I’m just so scared’.

Diagnosis also had a broader impact on participants’ relationships and professional lives. Anxiety about work performance was a major concern, including finding the time and/or place to check blood glucose or to inject insulin. In personal relationships, individuals struggled to manage relationships with partners, family and friends, sometimes facing stigma: ‘I definitely feel like the hardest thing is having to tell people and understanding that their opinion on your ability might change, even though it won’t’.

Participants believed that they did not receive adequate emotional support after diagnosis. Furthermore, the language used by health professionals was found to spark negative feelings about their diabetes care, e.g. fear or a sense of failure, or underplaying the seriousness of diabetes. The authors’ state that training health professionals on how to communicate and interact in a way that is reflective of peoples’ experiences may have a positive impact on how they think about their diabetes and their engagement with their diabetes team.

This study shows that the psychosocial problems associated with type 1 diabetes seem to arise in the early phase of living with this condition. Due-Christensen et al. recommend that providing increased psychological support during the period following diagnosis may improve both well-being and self-management, in turn reducing the severity and extent of psychological and physical health problems.

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Due-Christensen M, Willaing I, Ismail K & Forbes A. Learning about Type 1 diabetes and learning to live with it when diagnosed in adulthood: two distinct but interrelated psychological processes of adaptation. A qualitative longitudinal study. Diabetic Medicine, 2018;doi: 10.1111/dme. 13838, 1-11

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