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

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dc.contributor.authorLee, Vivian
dc.contributor.authorAlbaum, Carly
dc.contributor.authorModica, Paula Tablon
dc.contributor.authorAhmad, Farah
dc.contributor.authorGorter, Jan Willem
dc.contributor.authorKhanlou, Nazilla
dc.contributor.authorMcMorris, Carly
dc.contributor.authorLai, Jonathan
dc.contributor.authorHarrison, Cindy
dc.contributor.authorHedley, Teresa
dc.contributor.authorJohnston, Pari
dc.contributor.authorPutterman, Connie
dc.contributor.authorSpoelstra, Margaret
dc.contributor.authorWeiss, Jonathan A
dc.date.accessioned2024-10-04T18:03:34Z
dc.date.available2024-10-04T18:03:34Z
dc.date.issued2021-09-30
dc.description.abstractCaregivers 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.
dc.description.sponsorshipYork University Research Chair in Autism and Neurodevelopmental Disability Mental Health; McMaster University Scotiabank Chair in Child Health Research (Dr. Gorter); Canadian Institutes of Health Research Rapid Knowledge Synthesis Grant
dc.format.mediumPrint-Electronic
dc.identifier.issn1939-3792
dc.identifier.issn1939-3806
dc.identifier.urihttps://doi.org/10.1002/aur.2616
dc.identifier.urihttps://hdl.handle.net/10315/42349
dc.language.isoen
dc.publisherWiley
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 Internationalen
dc.rights.publisherCC BY-NC-ND
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/
dc.subjectBiomedical and clinical sciences
dc.subjectApplied and developmental psychology
dc.subjectClinical and health psychology
dc.subjectNeurosciences
dc.subjectPsychology
dc.subjectCaregiving research
dc.subjectClinical research
dc.subjectMental health
dc.subjectPediatric
dc.subjectBehavioral and social science
dc.subjectBasic behavioral and social science
dc.subjectBrain disorders
dc.subjectInfectious diseases
dc.subjectIndividual care needs
dc.subjectMental health
dc.subjectGood health and well being
dc.subjectAdolescent
dc.subjectAutism spectrum disorder
dc.subjectAutistic disorder
dc.subjectCOVID-19
dc.subjectCaregivers
dc.subjectChild
dc.subjectCommunicable disease control
dc.subjectHumans
dc.subjectPandemics
dc.subjectSARS-CoV-2
dc.subject.meshAdolescent
dc.subject.meshAutism Spectrum Disorder
dc.subject.meshAutistic Disorder
dc.subject.meshCOVID-19
dc.subject.meshCaregivers
dc.subject.meshChild
dc.subject.meshCommunicable Disease Control
dc.subject.meshHumans
dc.subject.meshMental Health
dc.subject.meshPandemics
dc.subject.meshSARS-CoV-2
dc.subject.meshHumans
dc.subject.meshMental Health
dc.subject.meshAutistic Disorder
dc.subject.meshCommunicable Disease Control
dc.subject.meshAdolescent
dc.subject.meshChild
dc.subject.meshCaregivers
dc.subject.meshPandemics
dc.subject.meshAutism Spectrum Disorder
dc.subject.meshCOVID-19
dc.subject.meshSARS-CoV-2
dc.subject.meshAdolescent
dc.subject.meshAutism Spectrum Disorder
dc.subject.meshAutistic Disorder
dc.subject.meshCOVID-19
dc.subject.meshCaregivers
dc.subject.meshChild
dc.subject.meshCommunicable Disease Control
dc.subject.meshHumans
dc.subject.meshMental Health
dc.subject.meshPandemics
dc.subject.meshSARS-CoV-2
dc.symplectic.issue12
dc.symplectic.journalAutism Research
dc.symplectic.pagination2477-2494
dc.symplectic.subtypeJournal article
dc.symplectic.volume14
dc.titleThe impact of COVID‐19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review
dc.typeArticle

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