Stress and Resilience of Families With Children with Intellectual and Developmental Disabilities During the COVID-19 Pandemic: A Mixed-Methods Study

Abstract

Parental stress increased during the COVID-19 pandemic. Families with children with an intellectual or developmental disability (IDD) and extensive support needs—such as complex communication needs—experienced additional challenges, including service loss and difficulties accessing virtual learning. The purpose of this study was to understand the experiences of parents ( N = 37) with children with IDD and complex communication needs related to parental stress and family resilience. Qualitative interview and quantitative survey data were collected within a convergent parallel mixed-methods design, with interviews occurring three times across the 2020–2021 school year. The two sets of data were analyzed separately and then integrated using back-and-forth exchanges and a joint display. Findings indicated that families showed resilience through family adaptation and cohesion—creating rhythms and routines that fostered togetherness—and by growing in advocacy and empowerment related to their child’s learning. But, many parents worried that they were not able to do enough for their child. Social support predicted lowered parental stress and stronger family resilience; yet, perceived social support varied widely across families—particularly support from teachers and service providers. This study provides important insight into family experiences during a unique time with the COVID-19 pandemic while pointing to important ways to strengthen family resilience long into a postpandemic future.