Unprecedented Times call for Unexpected Measures: Exploring Caregiver Experiences of Stress and Support During COVID-19

• In Event: COVID-19 and parental well-being

Abstract

As a global pandemic, COVID-19 has carried a host of challenges that have profoundly affected caregivers of young children (Coyne et al., 2020). Further, prolonged pandemic exposure has been particularly challenging for caregivers with neurodiverse children who require structure and critical developmental services (Yesil et al., 2022). Due to the often-complex needs of neurodiverse children, caregivers have historically experienced barriers in accessing services due to long waitlists and the inability to reach key personnel in complex service systems (Aishworiya & Kang, 2020). These barriers were heightened during the pandemic by temporary restrictions of non-critical medical care and remote or hybrid models of schooling (Lee et al., 2021). As one of the sole advocates of their children, caregivers of neurodiverse children were and continued to be faced with novel barriers and often little to no direction in terms of how to address them.

To date, the limited amount of published COVID-19- related research has primarily focused on neurotypical children. Thus, we know little about the experiences of stress and support had by caregivers of neurodiverse children during pandemic and how those meaningfully contributed to children’s social emotional development. The current study sought to examine their unique experiences of stress and support across ecological contexts (i.e., home, school, and community) during a time of overwhelming adversity, for caregivers of neurotypical and neurodiverse children.

Caregivers (N= 110; data collection will be completed by October 2022) of children between 4 and 8 years of age were recruited from the community, social media, and directly from clinics in Boston Children’s Hospital Division of Developmental Medicine. Of the total sample, 25 were caregivers of neurotypical children; remaining caregivers had neurodiverse children with Down Syndrome ( n=51), ADHD ( n=16), and Autism ( n=17). Caregivers completed an online questionnaire that gathered data on demographics, caregiver stress (PSI; Abidin, 1990), support (MSPSS; Zimet, 1998) engagement within school and community contexts, children’s social emotional behaviors (SDQ; Goodman, 1997), and COVID-19 challenges that are unique to caregivers of young children (EPII; Grasso et al., 2020). Using structural equation modeling (SEM), a theoretical model (see Figure 1) will be estimated and analyzed in R (Version 3.4.3; R Core Team, 2017).

Preliminary results demonstrate that, for for all caregivers, caregiver stress was positively related to children’s socioemotional problems, r=.63, p<.001, and negatively related to children’s prosocial behaviors, r=-.67, p<.001. For caregivers of neurodiverse children, however, caregiver distress was negatively associated with perceived family support, r=-.26, p<.05.

Preliminary findings illustrate that caregiver stress has important implications for all caregivers and children, though differences exist in the experiences of caregivers with neurodiverse children. Examining the model will elucidate important differences for each group. Relations will be discussed with model fit statistics and connected with implications for addressing the needs of all caregivers during periods adversity, especially those with neurodiverse children. Findings will not only inform systems of support for these adults but is also critical to the ways in which child development is supported during trying times.

Authors

• Nicole O'Dea, Clark University
  Presenting Author

• Ana Kamille Marcelo, Clark University