Experiences of Caregivers and At-Risk Children Enrolled in a Prospective Pregnancy-Birth Cohort Study into the Causes of Type 1 Diabetes: The ENDIA Study
Kelly J. McGorm,
James D. Brown,
Alison G. Roberts,
Susan Greenbank,
Daniella Brasacchio,
Alyssa C. P. Sawyer,
Helena Oakey,
Peter G. Colman,
Maria E. Craig,
Elizabeth A. Davis,
Georgia Soldatos,
Rebecca L. Thomson,
John M. Wentworth,
Jennifer J. Couper,
Megan A. S. Penno,
on behalf of The ENDIA Study Group
Affiliations
Kelly J. McGorm
Discipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, Australia
James D. Brown
Discipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, Australia
Alison G. Roberts
Rio Tinto Children’s Diabetes Centre, Telethon Kids Institute, University of Western Australia, Perth, WA 6009, Australia
Susan Greenbank
Community and Consumer Involvement Group (CCIG), ENDIA Study, Adelaide, SA 5005, Australia
Daniella Brasacchio
Community and Consumer Involvement Group (CCIG), ENDIA Study, Adelaide, SA 5005, Australia
Alyssa C. P. Sawyer
School of Psychology, The University of Adelaide, Adelaide, SA 5005, Australia
Helena Oakey
Discipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, Australia
Peter G. Colman
Diabetes and Endocrinology, Royal Melbourne Hospital, Melbourne, VIC 3050, Australia
Maria E. Craig
The School of Women’s and Children’s Health, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, Australia
Elizabeth A. Davis
Rio Tinto Children’s Diabetes Centre, Telethon Kids Institute, University of Western Australia, Perth, WA 6009, Australia
Georgia Soldatos
Monash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC 3004, Australia
Rebecca L. Thomson
Discipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, Australia
John M. Wentworth
Diabetes and Endocrinology, Royal Melbourne Hospital, Melbourne, VIC 3050, Australia
Jennifer J. Couper
Discipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, Australia
Megan A. S. Penno
Discipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, Australia
Background: We sought research experiences of caregivers and their children were enrolled in the Environmental Determinants of Islet Autoimmunity (ENDIA) study. Methods: ENDIA is a pregnancy–birth cohort investigating early-life causes of type 1 diabetes (T1D). Surveys were sent to 1090 families between June 2021 and March 2022 with a median participation of >5 years. Caregivers completed a 12-item survey. Children ≥ 3 years completed a four-item survey. Results: The surveys were completed by 550/1090 families (50.5%) and 324/847 children (38.3%). The research experience was rated as either “excellent” or “good” by 95% of caregivers, and 81% of children were either “ok”, “happy” or “very happy”. The caregivers were motivated by contributing to research and monitoring their children for T1D. Relationships with the research staff influenced the experience. The children most liked virtual reality headsets, toys, and “helping”. Blood tests were least liked by the children and were the foremost reason that 23.4% of the caregivers considered withdrawing. The children valued gifts more than their caregivers. Only 5.9% of responses indicated dissatisfaction with some aspects of the protocol. The self-collection of samples in regional areas, or during the COVID-19 pandemic restrictions, were accepted. Conclusions: This evaluation identified modifiable protocol elements and was conducted to further improve satisfaction. What was important to the children was distinct from their caregivers.
