Perspectives and experiences of youth and caregivers on screening and monitoring islet autoimmunity
11 affiliations
- 1School of Psychology, Adelaide University
- 2Adelaide Medical School, Adelaide University
- 3Endocrinology and Diabetes Department, Women’s and Children’s Hospital
- 4Department of Diabetes and Endocrinology, Royal Melbourne Hospital, Parkville
- 5Department of Endocrinology and Diabetes, Queensland Children’s Hospital
- 6Children’s Health Research Centre, Faculty of Health, Medicine, and Behavioural Sciences, The University of Queensland
- 7Department of Endocrinology and Diabetes, Royal Children’s Hospital, Parkville
- 8Institute of Endocrinology and Diabetes, Children’s Hospital at Westmead, Westmead
- 9Department of Endocrinology and Diabetes, Perth Children’s Hospital
- 10Charles Perkins Centre and Faculty of Medicine and Health, The University of Sydney
- 11Diabetes and Vascular Medicine Unit, Monash Health
Abstract
Aims: Screening and monitoring programs for islet autoantibodies, which signal risk of clinical type 1 diabetes, are being implemented globally. No studies have qualitatively explored youths’ perspectives on islet autoimmunity screening and monitoring, nor integrated their views with those of caregivers.
Methods: We interviewed 35 Australian youth (aged 9–18 years; median age = 11.5 years; n = 18 girls) with one or more islet autoantibodies and 49 caregivers of affected youth. Youth had been monitored for approximately 9 years (median). All families, except one, had a relative with type 1 diabetes. Twenty-one (42.86%) caregivers lived with clinical type 1 diabetes. Data were analysed using reflexive thematic analysis.
Results: Seven themes reflected our findings. Youth had limited understanding of the advantages of monitoring outside of research. They were predominantly focused on testing experiences rather than clinical risk. Caregivers generally displayed strong psychological responses, as did older adolescents. Family experience of diabetes shaped psychological responses in multifaceted ways. Caregivers further emphasised flexible service delivery and specific logistical considerations for screening and monitoring.
Conclusions: Youths’ focus on the practicalities of testing, rather than health risk, is reassuring in the context of planning international screening and monitoring programs. However, it highlights the need to prioritise procedural experiences. Youth should also be educated on the real-world benefits of monitoring. Psychosocial support is needed, particularly for caregivers and older adolescents, with healthcare individualised to the unique influence of family history of clinical diabetes. Caregivers further need reliable, structured monitoring pathways to manage distress, with equity and accessibility prioritised for sustained engagement.
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BibTeX
@article{majstorovic2026perspectives,
title = {{Perspectives and experiences of youth and caregivers on screening and monitoring islet autoimmunity}},
author = {Mia Majstorovic and Kelly J. McGorm and John M. Wentworth and Tony Huynh and Fergus Cameron and Maria E. Craig and Elizabeth A. Davis and Kirstine J. Bell and Georgia Soldatos and Megan A.S. Penno and Alyssa Sawyer and Melissa Oxlad and Jennifer J. Couper},
journal = {Frontiers in Endocrinology},
year = {2026},
month = oct,
doi = {10.3389/fendo.2026.1956622},
url = {https://www.frontiersin.org/articles/10.3389/fendo.2026.1956622/full},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Perspectives and experiences of youth and caregivers on screening and monitoring islet autoimmunity
AU - Mia Majstorovic
AU - Kelly J. McGorm
AU - John M. Wentworth
AU - Tony Huynh
AU - Fergus Cameron
AU - Maria E. Craig
AU - Elizabeth A. Davis
AU - Kirstine J. Bell
AU - Georgia Soldatos
AU - Megan A.S. Penno
AU - Alyssa Sawyer
AU - Melissa Oxlad
AU - Jennifer J. Couper
PY - 2026
DA - 2026/10/19
JO - Frontiers in Endocrinology
DO - 10.3389/fendo.2026.1956622
UR - https://www.frontiersin.org/articles/10.3389/fendo.2026.1956622/full
AB - Aims: Screening and monitoring programs for islet autoantibodies, which signal risk of clinical type 1 diabetes, are being implemented globally. No studies have qualitatively explored youths’ perspectives on islet autoimmunity screening and monitoring, nor integrated their views with those of caregivers. Methods: We interviewed 35 Australian youth (aged 9–18 years; median age = 11.5 years; n = 18 girls) with one or more islet autoantibodies and 49 caregivers of affected youth. Youth had been monitored for approximately 9 years (median). All families, except one, had a relative with type 1 diabetes. Twenty-one (42.86%) caregivers lived with clinical type 1 diabetes. Data were analysed using reflexive thematic analysis. Results: Seven themes reflected our findings. Youth had limited understanding of the advantages of monitoring outside of research. They were predominantly focused on testing experiences rather than clinical risk. Caregivers generally displayed strong psychological responses, as did older adolescents. Family experience of diabetes shaped psychological responses in multifaceted ways. Caregivers further emphasised flexible service delivery and specific logistical considerations for screening and monitoring. Conclusions: Youths’ focus on the practicalities of testing, rather than health risk, is reassuring in the context of planning international screening and monitoring programs. However, it highlights the need to prioritise procedural experiences. Youth should also be educated on the real-world benefits of monitoring. Psychosocial support is needed, particularly for caregivers and older adolescents, with healthcare individualised to the unique influence of family history of clinical diabetes. Caregivers further need reliable, structured monitoring pathways to manage distress, with equity and accessibility prioritised for sustained engagement.
SN - 1664-2392
ER -