P-200: My greatest fear is that he’ll get diabetes a qualitative study of families’ psychosocial responses to early detection of type 1 diabetes
E Bjergskov Pedersen, P B Flarup, D Grabowski, P DeCosta, J C Antvorskov, F Pociot, L N JespersenAbstract
Introduction
As screening and early detection programs for type 1 diabetes (T1D) becomes more widespread, attention to psychosocial impact is increasingly important. Emerging disease-modifying therapies highlight the need for early detection to delay disease onset and strengthen psychosocial preparedness. At the same time, early detection may provoke parental anxiety, making it essential to understand these responses for ethically and emotionally sensitive interventions. This study is among the first to investigate the psychosocial dimensions of early detection in families where children are first-degree relatives of a family member with T1D.
Objectives
To explore the psychosocial experiences of families participating in an early detection program for T1D among children with a first-degree relative with T1D.
Methods
Semi-structured interviews were conducted with 31 parents of children aged 1-17 years with a first-degree relative with T1D. Data were analyzed using Antonovsky’s Sense of Coherence framework.
Results
Participation in early detection was experienced as more than a clinical procedure; it served as a coping mechanism for families managing disease-related uncertainty. Three key themes emerged: (1) early detection as a strategy to manage uncertainty, (2) the influence of parents’ diabetes narratives and prior diabetes experiences shaping coping strategies, and (3) the need for clear communication and age-appropriate involvement of children, with insufficient communication intensifying anxiety and uncertainty.
Conclusions
Early detection programs for T1D should incorporate clear communication strategies and tailored psychosocial support. Addressing families’ prior experiences and involving children in age-appropriate ways may help reduce anxiety and improve coping during prolonged uncertainty, particularly in families with prior exposure to T1D.