Psychosocial aspects of early detection in type 1 diabetes: Language matters, decision making and support needs

The potential implementation of early type 1 diabetes (T1D) detection pathways, encompassing autoantibody screening and longitudinal monitoring, raises important psychosocial considerations for ethical, person-centred care. This review summarises evidence on the psychosocial impact of early T1D detection, identifying key evidence gaps and recommendations for integrating psychosocial support.

A semi-structured narrative review was conducted using PubMed-indexed international peer-reviewed literature, complemented by experiential insights from an interdisciplinary authorship team.

Broader Health screening literature emphasises that individuals' values, beliefs about chance, severity and controllability, alongside sociocultural context, shape decision making and coping. Early T1D detection introduces inherent uncertainty regarding timing and clinical progression. Despite a limited evidence base, largely focused on parents and lacking tailored person-reported outcome measures (PROMs), studies suggest a transient increase in negative emotional responses (e.g., anxiety, depressive symptoms, distress). Individual variation appears linked to screening outcome, prior experiences with T1D and tolerance for uncertainty. Effective, stigma-free communication and psychosocial support delivered by family-oriented professionals can facilitate informed, autonomous decision making. Mental health specialists play a key role in developing behaviourally informed protocols for care and communication, training care teams and providing targeted support for families experiencing persistent distress. Community involvement in the design, testing and evaluation of these communication tools, models of care and development of PROMs are essential for acceptability and equity.

Integrating psychological monitoring and care is a critical component of the early T1D detection pathway. Contextually relevant and co-designed information, support strategies and PROMs are needed to help families make informed decisions and navigate uncertainties.