CIHR funding supports York research on mental health of caregivers, families of autistic people during COVID-19

Vivian Lee, a postdoctoral fellow and her supervisor, Professor Jonathan Weiss, in Department of Psychology, along with their colleagues were awarded the competitive Canadian Institute for Health Research (CIHR) Knowledge Synthesis Grant: COVID-19 Rapid Research Funding Opportunity in Mental Health and Substance Abuse – 2020 for the project "Impact of COVID-19 on the Mental Health and Well-being of Caregivers and Families of Autistic people."

Jonathan Weiss

Dr. Vivian Lee

Vivian Lee

The project included working with Canadian researchers, clinicians and knowledge users to create a report that summarized the current understanding of mental health needs of caregivers of autistic children and youth during COVID-19, and to identify programs that have emerged to support family well-being. They received the award in May 2020, and the initial report was submitted to CIHR on June 22. CIHR will make the report available online, and the report will be updated until Nov. 22.

The report highlights the unique experience of caregivers and families of autistic children and youth and the considerable stress they have endured as a result of the COVID-19 social distancing measures (i.e. loss of jobs and income, increase in behaviours, abrupt changes in familiar routines, etc.). The report also finds there are currently no evidence-based supports and programs to address arising mental health concerns in caregivers and families. This is important because poor caregiver mental health can negatively impact family functioning and well-being, says Lee.

“I was thrilled to receive the award to explore this important topic alongside my supervisor Dr. Weiss and a strong group of autism advocates, caregivers and researchers from across Canada,” said Lee. “In reviewing the literature, we found ample evidence of the increase in demands placed on caregivers and families of autistic people because of COVID-19, and these demands are likely to impact their overall mental health and well-being. At the same time, we found little evidence that their mental health needs were being addressed. This is a crucial next step to consider in their care.”

Recommendations from the report emphasized the opportunities for researchers, clinicians, advocates, and key decision-makers to come together and identify ways to best support the wellbeing of caregivers and families moving forward.

“There is an ongoing need to monitor changes in family wellbeing as policies and procedures related to COVID-19 evolve, and to respond in a timely manner to support not only child, but also family functioning,” said Weiss.

Caregivers and families of autistic children and youth are constantly balancing the demands of caring for the autistic person, with their own needs and that of their family, said Lee, which often leads to a balancing act that can have a serious impact on their overall well-being, especially within the context of COVID-19.

“I think the mental health needs of caregivers and families should be a priority, and there are ample opportunities now for researchers and clinicians to address these emerging concerns,” said Lee.

The report was created in collaboration with colleagues, including York University Professors Nazilla Khanlou and Farah Ahmad, and others across Canada.

The funding was awarded to only 45 researchers across Canada (out of 162 applications). The findings highlight the pressing need to consider and address the mental health needs of caregivers and families of autistic people during COVID-19.

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