Anka Van Gastel; 1,2, Matthijs Graner-Baars;3 Eelco De Koning;2 , Victor M. Montori;4,5 Viet-Thi Tran;6, 7, 8 Sean F. Dinneen;9, 10 Jessica Mesman;11 Joris Swaak;12 Henk-Jan Aanstoot;13 Anne Stiggelbout;1 Marleen Kunneman1,3,14
1Biomedical Data Sciences, Leiden University Medical Center, Leiden, the Netherlands
2 Internal Medicine, Leiden University Medical Center, Leiden, The Netherlands
3 The ééndiabetes foundation, Amsterdam, the Netherlands
4 Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester MN, USA
5Division of Endocrinology, Diabetes & Metabolism, Mayo Clinic College of Medicine, Rochester MN, USA.
6General Medicine, Paris Diderot University, Paris, France
7METHODS Team, Centre for Research in Epidemiology and Statistics (CRESS), Université Paris Cité, INSERM, Paris, France
8Centre d’Épidémiologie Clinique, HôpitalHôtel-Dieu, Paris, France.
9Galway University Hospitals, Galway, Ireland
10Department of Medicine, University of Galway, Galway, Ireland
11Department of Society Studies, Maastricht University, Maastricht, the Netherlands
12Panton Medical Design Agency, Deventer, the Netherlands
13Diabeter: Center for Pediatric and Adult Diabetes Care and Research, Rotterdam, the Netherlands
14 Health Campus the Hague, department of Public Health and Primary Care, Leiden University Medical Center, The Hague, The Netherlands
Aim: This study aimed to identify what young adults with type 1 diabetes (YAT1D) do to make diabetes care fit in their daily lives and the impact of diabetes and diabetes care on living.
Methods: Dutch YAT1D (18-30 years old), submitted photographed real-life situations of efforts to make care fit and of the impact of diabetes care on their lives. Participants organized their photos in themes, which formed the starting point for focus group discussions. We added a reflective questionnaire, semi-structured interview, and iterative validation to identify participant-defined themes and summarize the data.
Results: Participants (N=18) submitted a total of 240 photographs (range 2-34 per participant), showing a broad range of situations and emotions. Participants identified 16 themes grouped into four overarching categories: 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, environment, clinical (diabetes) care; 4) Mental aspects: emotional processes, perspective, being a patient. In overlap of My diabetes and My life, they identified eating and counting carbohydrates, activity and exercise, recreational substances.
Conclusion: Young adults with type 1 diabetes 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 new burdens. Participants emphasized the importance of mental health aspects 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.