"This is going to be a nice-to-know, not a need-to-know": absence of concern - a qualitative study of risk perception in early detection of type 1 diabetes.

BACKGROUND

Type 1 Diabetes (T1D) is a chronic and demanding condition. In recent years, the development of immunomodulatory therapies has increased interest in early detection programs, which may delay disease onset and enable psychological preparedness. However, such programs also introduce new psychosocial considerations. This study explores how first-degree relatives of individuals with T1D perceive and experience participation in an early detection program.

METHODS

Semi-structured interviews were conducted with 28 adults aged 18-42 years participating in a Danish early detection program for T1D (DiaUnion). Data were analyzed using reflexive thematic analysis to explore patterns related to risk perception and meaning-making.

RESULTS

The analysis identified three main themes. First, narrative understanding of diabetes based on parental experience illustrates how perceptions of risk are shaped by family narratives and lived experiences. Second, general understanding of diabetes shows that perceptions are often informed by personal beliefs rather than biomedical knowledge. Third, interpretation of the screening result demonstrates that results are frequently downplayed and assigned limited personal significance. Across themes, participants actively constructed meaning around their risk through coping strategies such as normalization, reframing, and emphasizing controllability, which contributed to a generally low perceived risk.

CONCLUSION

Risk perception among first-degree relatives is shaped by pre-existing personal and familial narratives, which influence how screening results are interpreted. Early detection programs should therefore move beyond standardized communication and adopt more individualized approaches that account for participants' existing frameworks of understanding and coping.