Koning, Eelco J.P. de

Abstract Aim This study aimed to identify what young adults with type 1 diabetes (T1D) do to make diabetes care fit in their lives and the impact of diabetes and diabetes care on living. Methods Dutch young adults with T1D (18–30 years old) submitted photographed real‐life situations of efforts to make care fit and of the impact of care on their lives. Participants organised their photos in themes, which guided the focus group discussions. We added a reflective questionnaire, semi‐structured interview and iterative validation to identify participant‐defined themes and summarise the data. Results Participants ( N = 18) submitted 240 photographs in total, showing a broad range of situations and emotions. Participants identified 16 themes, grouped into four overarching categories describing their experiences with diabetes: (1) My diabetes: glucose levels, workload, 24/7 present; (2) My life: flow of (daily) life, special and irregular circumstances, life changes, body and health; (3) Support: devices and technology, social network, clinical (diabetes) care; (4) Mental aspects: emotional processes, perspective, being a patient. In the overlap of My diabetes and My life, they identified eating and counting carbohydrates, activity and exercise, recreational substances. Conclusion Young adults with T1D face the complex challenge of fitting their care into their ever‐changing lives. While support systems, such as devices, healthcare professionals and social networks can help, they can also create burdens. Participants emphasised the importance of mental health in their lives with T1D. This study highlights the need for diabetes care that acknowledges the emotional, social and practical realities of young adults' lives.

AbstractYoung adults living with type 1 diabetes often struggle to achieve what clinicians consider to be optimal levels of metabolic control. Despite the impact that this can have on a young person's future risk of complications, there are relatively few studies reporting new ways of organizing or delivering care to this cohort. In this article, we explore some of the reasons why young adult diabetes care is challenging, and describe approaches to “re‐imagining” how care might be improved. The work is informed by the ‘Making Care Fit’ collaborative and by a program of research, entitled D1 Now, involving co‐design of a complex person‐centered intervention with young adults.