The Impact of COVID‑19 on the Mental Health and Well-being of Caregivers and Families Living with Autism

Weiss, Jonathan A | $34,068

Ontario York University 2020 CIHR Operating Grant

Caregivers and families (i.e. siblings) with children and adolescents with autism often experience demanding stressors and distress associated with providing care to the family member with autism. We aim to better understand what has been documented regarding the impact of the COVID‑19 pandemic on caregiver and family functioning and identify the supportive programs that have emerged as a result. Before COVID-19, the literature has shown that caregivers of people with autism experience more stressors, more mental health problems and distress, and lower family quality of life, compared to the general population. As a result of the state of emergency due to COVID-19, these stressors and mental health outcomes have likely increased. Distancing requirements have halted many of the programs that caregivers rely on for respite and support (e.g. interventions, day programs, schools, adapted recreation and leisure, etc.). This means caregivers have little or no assistance outside of the family to care for their child with autism. It is essential to recognize the service needs of families, and share the evidence-based best practices that have emerged to support caregivers of children with autism who are faced with these pandemic-related demands. Using a comprehensive family coping model (called the Family Adjustment and Accommodation Resource Model) as a framework, the proposed rapid knowledge synthesis review will outline how families balance the many demands they experience with the services and resources that support their capabilities, and how they make meaning of this process as a means of coping. Moving forward, addressing the mental health of caregivers is an essential part of supporting the wellness of children. By quickly finding and sharing what works to support the mental health of caregivers and families during COVID-19, we can stop and reverse the increasing tide of mental health problems and distress that is emerging in the Canadian autism community.

With funding from the Government of Canada

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