"My greatest fear is that he'll get diabetes": a qualitative study of families' psychosocial responses to early detection of type 1 diabetes.

Abstract

Background: The incidence of type 1 diabetes (T1D) among European children has nearly doubled over the past three decades. Emerging disease-modifying therapies highlight the importance of early detection to delay disease onset and enhance psychosocial preparedness. However, participation in early detection may also evoke parental anxiety, underscoring the need to understand families' psychosocial experiences to ensure ethically and emotionally responsive screening programs. This study explores how families experience participation in early detection when children are first-degree relatives of individuals with T1D.

Methods: Semi-structured interviews were conducted with 31 parents of children aged 1-17 years participating in a Danish early detection program for T1D (DiaUnion). Data were analyzed using Antonovsky's Sense of Coherence framework to examine how families perceive, manage, and make sense of disease-related uncertainty during participation.

Results: Three themes describe how families experience participation in early detection. First, The Family Narrative illustrates how parents' prior experiences with T1D shape expectations and emotional responses to screening, often combining practical knowledge with heightened concern. Second, Diabetes in Everyday Life shows how families integrate early detection into daily routines and draw on experiential knowledge to manage uncertainty and interpret potential symptoms. Third, Children's Involvement highlights how parents navigate decisions about how and when to involve their children in discussions about risk and screening. Across themes, clear communication and procedural transparency were central in supporting families' sense of coherence and their ability to manage uncertainty.

Conclusion: Early detection programs for T1D should attend not only to clinical accuracy but also to families' psychosocial needs. Clear communication, transparency, and structured psychosocial support are essential to strengthen families' capacity to manage uncertainty and ensure that early detection is both effective and acceptable.