Mental health of parents of children with autism spectrum disorder during COVID-19 pandemic: A systematic review

Abstract

BACKGROUND Children diagnosed with autism spectrum disorder (ASD) may have great difficulties when their routines change, and this may affect the psychological well-being of their parents. For this reason, it is important to examine studies that address the mental health of parents in order to adapt to the coronavirus disease 2019 (COVID-19) pandemic. AIM To determine the mental health status of parents with children diagnosed with ASD in the COVID-19 pandemic. METHODS The study, which is a systematic review, was conducted between December 15, 2020 and December 30, 2020 by scanning articles in English. The Scopus, Science Direct, PubMed, Cochrane, Web of Science, and Google Scholar databases were used for scanning. The keywords COVID-19 AND (“autism” OR “autistic” OR “autism spectrum disorder”) AND parent AND (“mental health” OR “anxiety” OR “stress”) were used in the search process. The inclusion criteria in the study were findings regarding the mental health of parents with children diagnosed with ASD in the COVID-19 pandemic, addressing their anxiety and stress situations, being a research article, and accessing the full text of the article. RESULTS In the study, a total of 6389 articles were reached, and the full texts of 173 articles were evaluated for eligibility. After the articles excluded by the full-text search were eliminated, 12 studies involving 7105 parents were included in the analysis. The findings obtained from the articles containing data on mental health in the COVID-19 pandemic of parents with children with autism spectrum disorder were discussed in three groups. These were findings on the experiences of parents with children with ASD in the COVID-19 pandemic regarding the areas where parents with children with ASD need support in the COVID-19 pandemic and methods of coping with the COVID-19 pandemic for parents with children with ASD. In the systematic review, it was determined that the anxiety and stress of the parents increased, they needed more support compared to the pre-pandemic period, and they had difficulty coping. CONCLUSION In this systematic review, it was concluded that the COVID-19 pandemic negatively affected the mental health of the parents of children with ASD.

Effects of the Early Phase of COVID-19 on the Autistic Community in Sweden: A Qualitative Multi-Informant Study Linking to ICF

“…Additionally, many parents struggled to take on the new pedagogical role as an educator for their child. Aligning with findings in international studies [26,31] some parents reported they were not equipped with the pedagogical skills to teach their child at home. Yalmaz et al [31] found that parents feel helpless with not enough time to adopt new routines following prevention measures and felt lonely and tired in the new role of educator at home.…”

“…Aligning with findings in international studies [26,31] some parents reported they were not equipped with the pedagogical skills to teach their child at home. Yalmaz et al [31] found that parents feel helpless with not enough time to adopt new routines following prevention measures and felt lonely and tired in the new role of educator at home. In addition, the support system provided insufficient help coping with the sudden challenges and some parents reported having to quit their jobs to care for their children.…”

“…Comparative, population-based survey data show greater psychological distress (including symptoms of anxiety, loneliness, and hyperarousal) in parents of children with in comparison to parents of children without autism during the pandemic [30]. Summarizing outcome studies, Yalmaz et al [31] describe that parents' mental health is related to the child's ability to adapt to changing routines, dealing with social distancing and enhanced hygiene practices, and serious behavioral disruptive behaviors but also economic difficulties.…”

The effects of the COVID-19 pandemic on the well-being of children with autism spectrum disorder: Parents’ perspectives

“…Parents were conditioned to care for their children on their own while juggling multiple responsibilities for which they had not been trained. The unique struggles of parents of children with ASD are echoed in similar studies that report family tensions (36), lacking a resourceful state (37), and increased stressors during the pandemic (38). Parents often need extra support from other people, particularly professionals who can aid and counsel when raising a child with a developmental impairment.…”

ASDesign: A User-Centered Method for the Design of Assistive Technology That Helps Children with Autism Spectrum Disorders Be More Independent in Their Daily Routines

“…COVID-19 and lockdown have caused serious difficulties for children with ASD and their families. The limitations of physical space and the transformation of their daily routine (including the disruption of diet and sleep, as well as the interruption of teaching, therapies, and sessions in special centers) are generating a very significant mental and emotional impact [2,[11][12][13]. Although several of these services have been offered online, experts argue that they are less effective than those received in person [14].…”