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 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.

Exploring the lived experiences of women with children during COVID-19: Maternal stress and coping mechanisms.

This paper presents the results of a qualitative study of mothers' lived experiences during the COVID-19 lockdown in the United States. An analysis of open-ended interviews with 44 mothers who had children ages zero-to-five identified two main themes: (1) increased stress among mothers; and (2) resilience through the use of coping mechanisms. The findings indicate that the COVID-19 pandemic has led to higher stress among mothers due to issues of work-family life balance, family and children's needs, decision-making about getting sick, concerns for children's development, and lack of clarity from government officials. Mothers described using a variety of problem-focused and emotion-focused methods to cope with this stress. The lived experiences of mothers during the pandemic highlights the need for innovations in childcare modalities, paid leave policies to relieve stress, and strengthening whole family processes and resilience through the use of coping mechanisms.