The impact of COVID‐19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review

Caregivers and families of autistic people have experienced stress and increase in demands due to the COVID-19 pandemic that may have long-term negative consequences for both their own and their children's mental health. A scoping review was conducted to identify pandemic related demands experienced by caregivers and families of autistic children and youth. The review also consolidated information on coping strategies and parenting-related guidelines that have emerged to help parents meet these demands. Search strategies were approved by a research librarian and were conducted in peer-reviewed and gray literature databases between May 2020 and February 2021. Additional resources were solicited through author networks and social media. All articles were published between December 2019 and February 2021. Article summaries were charted, and a thematic analysis was conducted with confirmation of findings with our knowledge users. Twenty-three published articles and 14 pieces of gray literature were included in the review. The majority of articles characterized and highlighted the increase in demands on caregivers of autistic children and youth during the pandemic globally. Both quantitative and qualitative studies suggest that parents have experienced an increase in stress and mental health-related symptoms during lockdown measures. Findings suggest that families are employing coping strategies, but there no evidence-based supports were identified. The review highlighted the potential long-term impact of prolonged exposure to increasing demands on the mental health and wellbeing of caregivers and families of autistic people, and pointed to a need for the rapid development and evaluation of flexible and timely support programs.

Lay Summary: Caregivers and families of autistic children and youth have faced increased demands due to pandemic-related lockdown measures. We reviewed the literature to outline sources of stress, links to their influence on caregiver mental health, and if support programs have emerged to help them. Our findings suggest a number of demands have increased caregivers' risk to mental health challenges, and their potential impact on family wellbeing. Ongoing development of evidence-based supports of all families of autistic children and youth are needed.