Please use this identifier to cite or link to this item:
https://hdl.handle.net/2440/139163
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Type: | Journal article |
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 |
Author: | McGorm, K.J. Brown, J.D. Roberts, A.G. Greenbank, S. Brasacchio, D. Sawyer, A.C.P. Oakey, H. Colman, P.G. Craig, M.E. Davis, E.A. Soldatos, G. Thomson, R.L. Wentworth, J.M. Couper, J.J. Penno, M.A.S. |
Citation: | Children, 2023; 10(4):637-637 |
Publisher: | MDPI AG |
Issue Date: | 2023 |
ISSN: | 2227-9067 2227-9067 |
Statement of Responsibility: | 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, and on behalf of The ENDIA Study Group |
Abstract: | 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. |
Keywords: | type 1 diabetes; cohort study; evaluation; consumer and community involvement; consumer engagement |
Rights: | © 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/). |
DOI: | 10.3390/children10040637 |
Grant ID: | http://purl.org/au-research/grants/nhmrc/1078106 |
Published version: | http://dx.doi.org/10.3390/children10040637 |
Appears in Collections: | Medicine publications |
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File | Description | Size | Format | |
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hdl_139163.pdf | Published version | 4.06 MB | Adobe PDF | View/Open |
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