11 Exploring the Impact of COVID-19 on Families of Children with Developmental Disabilities: A Community-Based Formative Study

Abstract

Primary Subject areaDevelopmental PaediatricsBackgroundThe COVID-19 pandemic has impacted every facet of society but has been particularly disastrous for families of children with developmental disabilities (DD) living on the margins. The unprecedented repercussions of COVID-19, including quarantine, social distancing, and service restrictions, continue to disproportionately impact these families. This is a pattern observed in previous humanitarian crises, where there has been a lack of response for children with DD. There is an urgent need to understand the experiences of families of children with DD in order to develop a community-driven model of service provision.ObjectivesThis study aims to identify the experienced impact of COVID-19 on families of children with DD who have significant needs and social barriers.Design/MethodsThis was a community-based participatory study using a formative research framework in accordance with COREQ guidelines. In-depth interviews (IDIs) were conducted with caregivers and care providers of children with DD. Data were recorded, transcribed, and coded using deductive and inductive coding methods by three independent coders. A peer debriefing strategy was used to verify the coding approach and interpretation of findings in accordance with the RATS (relevancy, appropriateness, transparency, and soundness) guidelines for qualitative research. Perceived parental stress and social support were explored using the Perceived Stress Scale (PSS-10) and Multidimensional Scale of Perceived Social Support (MSPSS).ResultsA total of 25 IDIs were conducted. Of the 15 caregivers interviewed, five were new to Canada. Results suggested both newcomer and non-newcomer families of children with DD are in crisis, reporting high stress and low social support, with increased difficulties navigating and accessing therapies and programs, including those offered virtually. Participants reported behavioural regressions and increased anxiety among their children with DD, as well as caregiver mental health challenges. Providers reported having to change their service delivery model in accordance with public health recommendations, but caregivers said that they were not included in these decisions.ConclusionFamilies of children with DD face extraordinary barriers to care, which may be further compounded by the COVID-19 pandemic. Our study demonstrates the value of community-informed design, particularly in the setting of the COVID-19 pandemic. To deliver truly patient-centred services during the pandemic, there is an urgent need for responsive programming that is built with patients, for patients.