Participants were recruited from the ENDIA pregnancy-birth cohort, Type1Screen and one hospital diabetes clinic. Interviews were conducted between March 2025 and February 2026, with most held over Zoom, and the recordings were transcribed verbatim and de-identified before inductive reflexive thematic analysis. The youth participants were 9 to 18 years old, with a median age of 11.5 years; 18 were girls and 17 were boys.

They had been monitored for a median of 109 months. Among the 49 caregivers, 43 were women; 36 cared for youths aged 9 years or older and 13 cared for children younger than nine. All but one family had a relative with type 1 diabetes, and 21 caregivers, or 42.9%, lived with clinical type 1 diabetes themselves.

Youth interviews lasted an average of about 14 minutes, compared with approximately 23 minutes for caregiver interviews. Seven themes emerged. Youth generally had limited understanding of the advantages of monitoring outside research and often described their motivation as helping others or supporting future diabetes research and treatments.

By contrast, caregivers highlighted possible benefits including avoiding diabetic ketoacidosis, supporting a smoother transition to clinical diabetes and accessing trials intended to delay or prevent insulin use. The testing procedures themselves were central to youths’ experiences. Participants described discomfort or distress associated with venous blood draws and oral glucose tolerance tests.

Many preferred finger-pricks because they considered them quicker and less painful, while others reported adapting to testing over time. Younger participants said distraction, virtual reality, numbing products, butterfly needles and other devices made blood tests more tolerable. Some also valued familiar routines and experienced, consistent staff.

For potential trial participation, youths aged 9 to 14 generally preferred tablets or liquids, citing taste and ease of ingestion. Psychological responses varied by age and family experience. Younger youths were generally unconcerned about islet autoimmunity, although two 18-year-olds reported fear, uncertainty, difficulty coping with the absence of a treatment regimen and confusion about whether they had a medical condition.

Older adolescents also described concern about waiting. Caregivers reported responses including anxiety, worry, shock, devastation and guilt, but some said monitoring provided control or reduced initial distress. Two caregivers wanted a clinical diagnosis because it would provide a course of action; the study did not establish that they wanted the diagnosis itself.

Family connections to type 1 diabetes had both supportive and distressing effects. Some youths said observing a relative’s diabetes normalized the condition, while others reported worry after witnessing a sibling’s diagnosis or medical emergency. Several said they would feel supported if they developed diabetes because a relative with experience could help.

Caregivers with lived experience also differed: some felt more confident about coping, whereas others described being reminded of the urgency surrounding an earlier diagnosis. The authors therefore emphasized individualized psychological care rather than assumptions based solely on family history. Caregivers also emphasized reliable, structured monitoring pathways.

Their recommendations included electronic booking, reminders, notifications when samples were received and processed, and a clear plan for how and when results would be delivered. Timely results mattered because delays caused anxiety or annoyance, while unexpected calls left some families without a clear next step. Caregivers wanted coordination among monitoring clinics, pathology services and clinical diabetes care, with some requesting multidisciplinary involvement by doctors, diabetes educators, dietitians and mental healthcare professionals.

Continuity with a reliable nurse or diabetes educator and sensitive communication of results were valued. Accessibility and convenience were recurring concerns. Work, caring duties, school activities and extracurricular schedules complicated repeated appointments.

Regional and rural families described limited local services and pathology access, although many youth and caregivers supported telehealth as a way to reach specialists. Some participants preferred in-person care, particularly for serious discussions, while regional families also wanted a local contact who could explain monitoring and the next steps. Caregivers additionally valued flexible sample collection and appointment times, accessible parking and coordinated same-day services, with practical constraints involving continuous glucose monitor access also reported.

The findings have important boundaries. Few older adolescents or fathers were interviewed, almost all families had a first-degree relative with diabetes, and most caregivers had tertiary education. The sample was drawn largely from research cohorts, with only one youth recruited through a clinic referral, limiting generalizability to families eligible for general-population screening.

ENDIA participants also had more contact with research staff and more educational input than Type1Screen participants. Gender differences were not evaluated. The authors said larger longitudinal studies would be needed to quantify distress among youths over time.

Subject of Research: Youth and caregiver experiences of islet autoimmunity screening and monitoring in Australia

Article Title: Perspectives and experiences of youth and caregivers on screening and monitoring islet autoimmunity

Article References: Majstorovic, M., McGorm, K. J., Wentworth, J. M., Huynh, T., Cameron, F., Craig, M. E., Davis, E. A., Bell, K. J., Soldatos, G., Penno, M. A. S., Sawyer, A., Oxlad, M., & Couper, J. J. (2026). Perspectives and experiences of youth and caregivers on screening and monitoring islet autoimmunity. Frontiers in Endocrinology, 17, Article 1956622. https://doi.org/10.3389/fendo.2026.1956622

Image Credits: AI Generated

DOI: 10.3389/fendo.2026.1956622

Keywords: islet autoimmunity, type 1 diabetes, screening, monitoring, youth, caregivers, qualitative research, psychological support, telehealth, Australia, Perspectives, experiences