{
  "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.\n\nMethods: 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.\n\nResults: 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.\n\nConclusions: 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.",
  "abstract_shown": true,
  "affiliations": [
    "School of Psychology, Adelaide University",
    "Adelaide Medical School, Adelaide University",
    "Endocrinology and Diabetes Department, Women’s and Children’s Hospital",
    "Department of Diabetes and Endocrinology, Royal Melbourne Hospital, Parkville",
    "Department of Endocrinology and Diabetes, Queensland Children’s Hospital",
    "Children’s Health Research Centre, Faculty of Health, Medicine, and Behavioural Sciences, The University of Queensland",
    "Department of Endocrinology and Diabetes, Royal Children’s Hospital, Parkville",
    "Institute of Endocrinology and Diabetes, Children’s Hospital at Westmead, Westmead",
    "Department of Endocrinology and Diabetes, Perth Children’s Hospital",
    "Charles Perkins Centre and Faculty of Medicine and Health, The University of Sydney",
    "Diabetes and Vascular Medicine Unit, Monash Health"
  ],
  "article_type": "research article",
  "arxiv": null,
  "author_total": 13,
  "authors": [
    {
      "affs": [
        0
      ],
      "name": "Mia Majstorovic"
    },
    {
      "affs": [
        1,
        2
      ],
      "name": "Kelly J. McGorm"
    },
    {
      "affs": [
        3
      ],
      "name": "John M. Wentworth"
    },
    {
      "affs": [
        4,
        5
      ],
      "name": "Tony Huynh"
    },
    {
      "affs": [
        6
      ],
      "name": "Fergus Cameron"
    },
    {
      "affs": [
        7
      ],
      "name": "Maria E. Craig"
    },
    {
      "affs": [
        8
      ],
      "name": "Elizabeth A. Davis"
    },
    {
      "affs": [
        9
      ],
      "name": "Kirstine J. Bell"
    },
    {
      "affs": [
        10
      ],
      "name": "Georgia Soldatos"
    },
    {
      "affs": [
        1
      ],
      "name": "Megan A.S. Penno"
    },
    {
      "affs": [
        0
      ],
      "name": "Alyssa Sawyer"
    },
    {
      "affs": [
        0
      ],
      "name": "Melissa Oxlad"
    },
    {
      "affs": [
        1,
        2
      ],
      "name": "Jennifer J. Couper"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/3bspaay4hxfrf.bib",
  "cited_by": 0,
  "doi": "10.3389/fendo.2026.1956622",
  "fulltext_url": "https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13724607/?tool=EBI",
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  "issns": [
    "1664-2392"
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  "landing_url": "https://www.frontiersin.org/articles/10.3389/fendo.2026.1956622/full",
  "language": "eng",
  "licence": "CC-BY-4.0",
  "licence_label": "CC BY 4.0",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "heading",
      "Original Research"
    ],
    [
      "openalex",
      "1311|Diabetes and associated disorders"
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  "openalex": "W7222949062",
  "pdf_url": "https://www.frontiersin.org/journals/endocrinology/articles/10.3389/fendo.2026.1956622/pdf",
  "pmcid": "PMC13724607",
  "pmid": "42973630",
  "published": "2026-10-19",
  "publisher": "Frontiers Media SA",
  "ris": "https://research.draconitic.com/paper/3bspaay4hxfrf.ris",
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  "subjects": [
    {
      "field": "biology",
      "origin": "openalex:1311|Diabetes and associated disorders",
      "subfield": "genetics-genomics"
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  ],
  "title": "Perspectives and experiences of youth and caregivers on screening and monitoring islet autoimmunity",
  "title_text": "Perspectives and experiences of youth and caregivers on screening and monitoring islet autoimmunity",
  "type": "peer-reviewed",
  "updated_at": "2026-11-06T12:21:02Z",
  "url": "https://research.draconitic.com/paper/3bspaay4hxfrf",
  "venue": "Frontiers in Endocrinology",
  "versions": []
}