Impact of COVID-19 Pandemic on Caregivers of Children with Neurodevelopmental Disabilities: A Qualitative Study

Abstract

Background/Aim: It is well known that caregivers of children with neurodevelopmental disabilities (NDD) face challenges. These challenges increased further due to the coronavirus disease 2019 (COVID-19) pandemic and the related restrictions. There was very little data from India on these challenges. This study was done with the primary aim to gain insights about the challenges faced by parents of children with NDD through their personal stories. Methods: Participants were recruited using purposive sampling method and semi-structured interviews were conducted through a telephone or in person. Data saturation was achieved by the sixth participant and 2 more interviews were performed for further confirmation. Interviews were transcribed, and a 7-step Colaizzi’s phenomenological method was used to identify different themes. Results: The impact of COVID-19 on caregivers of children with NDD can be summarized into 4 broad themes. First, there were challenges related to “therapy” which included closure of day-care centers and schools, inaccessibility to professionals, and disruption in home-based learning. Second, there were “child” related challenges which included inappropriate behaviors. Third, there were “family” challenges which included misunderstandings between parents and difficulties in adhering to family routines. Lastly, there were “personal” challenges related to physical and psychological health. Conclusion: The personal stories of caregivers of children with NDD highlight the pressing need to provide appropriate support and formulate holistic models to enhance well-being of caregivers during difficult periods.