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
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 bet...
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-03-01
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| Series: | Children |
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| Online Access: | https://www.mdpi.com/2227-9067/10/4/637 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Kelly J. McGorm |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-11T05:08:20Z |
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| institution | Directory Open Access Journal |
| issn | 2227-9067 |
| language | English |
| last_indexed | 2024-03-11T05:08:20Z |
| publishDate | 2023-03-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj.art-b922970066a649a6966b5b556b2f7a7b2023-11-17T18:45:34ZengMDPI AGChildren2227-90672023-03-0110463710.3390/children10040637Experiences of Caregivers and At-Risk Children Enrolled in a Prospective Pregnancy-Birth Cohort Study into the Causes of Type 1 Diabetes: The ENDIA StudyKelly J. McGorm0James D. Brown1Alison G. Roberts2Susan Greenbank3Daniella Brasacchio4Alyssa C. P. Sawyer5Helena Oakey6Peter G. Colman7Maria E. Craig8Elizabeth A. Davis9Georgia Soldatos10Rebecca L. Thomson11John M. Wentworth12Jennifer J. Couper13Megan A. S. Penno14on behalf of The ENDIA Study GroupDiscipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, AustraliaDiscipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, AustraliaRio Tinto Children’s Diabetes Centre, Telethon Kids Institute, University of Western Australia, Perth, WA 6009, AustraliaCommunity and Consumer Involvement Group (CCIG), ENDIA Study, Adelaide, SA 5005, AustraliaCommunity and Consumer Involvement Group (CCIG), ENDIA Study, Adelaide, SA 5005, AustraliaSchool of Psychology, The University of Adelaide, Adelaide, SA 5005, AustraliaDiscipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, AustraliaDiabetes and Endocrinology, Royal Melbourne Hospital, Melbourne, VIC 3050, AustraliaThe School of Women’s and Children’s Health, Faculty of Medicine, University of New South Wales, Sydney, NSW 2052, AustraliaRio Tinto Children’s Diabetes Centre, Telethon Kids Institute, University of Western Australia, Perth, WA 6009, AustraliaMonash Centre for Health Research and Implementation, School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC 3004, AustraliaDiscipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, AustraliaDiabetes and Endocrinology, Royal Melbourne Hospital, Melbourne, VIC 3050, AustraliaDiscipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, AustraliaDiscipline of Paediatrics, Adelaide Medical School, Robinson Research Institute, The University of Adelaide, Adelaide, SA 5005, AustraliaBackground: 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.https://www.mdpi.com/2227-9067/10/4/637type 1 diabetescohort studyevaluationconsumer and community involvementconsumer engagement |
| spellingShingle | 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 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 Children type 1 diabetes cohort study evaluation consumer and community involvement consumer engagement |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| topic | type 1 diabetes cohort study evaluation consumer and community involvement consumer engagement |
| url | https://www.mdpi.com/2227-9067/10/4/637 |
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