Review Article Experiences of caregivers of children with autism during the COVID-19 pandemic: A scoping review

Jade Berson, Skye N. Adams

About the author(s) Jade Berson, Department of Speech Pathology and Audiology, School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa
Skye N. Adams, Department of Speech Pathology and Audiology, School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa

Abstract

Background: The coronavirus disease 2019 (COVID-19) outbreak has had a profoundly negative impact on people all over the world, particularly those with disabilities such as autism. However, there are gaps in research understanding the impact of COVID-19 on this population and the support required.

Aim: To explore the evidence available on the impact of the COVID-19 pandemic on caregivers of children with autism.

Method: A scoping review methodology using the Arksey and O’Malley framework was employed. Five electronic databases from March 2020 to December 2022 were reviewed. Two thousand two hundred and six articles were retrieved with primary search terms: caregivers (population), autism (diagnosis) and COVID-19 (context). Following the screening of titles, abstracts and articles, 36 articles were included in the final review. Thematic and content qualitative analysis was completed.

Results: Preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) guided the reporting of the findings. Three main themes were identified: (1) caregiver’s mental health and wellbeing, (2) response to remote health care and support and (3) caregiver resilience.

Conclusion: The pandemic affected children with autism and their families regarding changes in routine, difficulties with support and emotional states. However, little research has been conducted on the impact in upper-middle-income countries such as South Africa.

Contribution: The findings from this review carry practical implications that extend beyond the pandemic, such as political instability or natural disasters that may present similar stressors for children with autism and their families.

 

Keywords

autism; COVID-19; experiences; scoping review; service provision

Sustainable Development Goal

Goal 3: Good health and well-being

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