"Putting one foot in front of the other": parental resilience during the COVID-19 pandemic

Abstract

Introduction: During the COVID-19 pandemic, parents of disabled children faced a variety of challenges stemming from loss of services, medical concerns, caregiving stress, and changes to support systems. The purpose of this study was to explore the experiences of parents of children with Smith-Lemli-Opitz syndrome (SLOS), a genetic developmental disorder, during the COVID-19 pandemic, focusing on what factors impacted their ability to develop or maintain resilience. Methods: Eight mothers of children with Smith-Lemli-Opitz syndrome participated in this study. The participants filled out an online questionnaire and participated in an online interview. Those interviews were analyzed through thematic analysis. Results: Five major themes were identified: 1) Experiences with SLOS, 2) COVID-19 impacts, 3) Support and Services, 4) Parental and Caregiving Strain, and 5) Resilience. Conclusion: All of the mothers demonstrated resilience throughout the pandemic and throughout their experience parenting a child with SLOS. The findings from this study contribute to an understanding of what factors serve as protective factors for parents of children with developmental disabilities and provide insight into the experiences and needs of these women during the COVID-19 pandemic. ☐ Keywords: disability, COVID-19, resilience, adaptation