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. 2023 Mar 29;10(4):637.
doi: 10.3390/children10040637.

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  1 , James D Brown  1 , Alison G Roberts  2   3 , Susan Greenbank  4 , Daniella Brasacchio  4 , Alyssa C P Sawyer  5 , Helena Oakey  1 , Peter G Colman  6 , Maria E Craig  7   8 , Elizabeth A Davis  2   3 , Georgia Soldatos  9   10 , Rebecca L Thomson  1 , John M Wentworth  6   11 , Jennifer J Couper  1   12 , Megan A S Penno  1 , On Behalf Of The Endia Study Group
Affiliations

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 et al. Children (Basel). .

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: cohort study; consumer and community involvement; consumer engagement; evaluation; type 1 diabetes.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
STROBE diagrams for (A) the Caregiver Survey, and (B) the Child Survey.
Figure 2
Figure 2
Overall experience ratings for (A) the Caregiver Survey, and (B) the Child Survey. (C) Correlated caregiver-child responses for overall experience ratings. (D) Responses to “How important have the following parts of the study been for your experience in ENDIA?”
Figure 3
Figure 3
(A) Aspects of participation in ENDIA that caregivers found to be “surprising”, which reflect both positive and negative experiences. (B) Responses to “How important have the following reasons been for staying in ENDIA?” (C) Commonly reported “likes” from the Child Survey. (D) Commonly reported “dislikes” from the Child Survey.
Figure 4
Figure 4
(A) Reasons provided by caregivers for thoughts of leaving ENDIA. (B) Caregiver satisfaction with the study protocol. (C) Caregiver satisfaction with the RPP. (D) Impact on the caregiver of the protocol changes implemented during COVID-19 restrictions.
See this image and copyright information in PMC

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