Impact of the COVID-19 pandemic on children and adolescents with autism spectrum disorder and their families: A mixed-methods study protocol

Linda Dekker*, Linde Hooijman, Anneke Louwerse, Kirsten Visser, Dennis Bastiaansen, Leontine Ten Hoopen, Pieter De Nijs, Gwen Dieleman, Wietske Ester, Susan Van Rijen, Femke Truijens, Ruth Van Der Hallen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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BACKGROUND: The COVID-19 pandemic is a challenge for everyone, particularly for children and adolescents with autism spectrum disorder (ASD). ASD is a developmental disorder characterised by limitations in social communication, repetitive behavioural patterns, and limited interests, and activities. It is expected that many families with children with ASD will experience more problems due to the COVID-19 pandemic and the related public health restrictions. At the same time, some may experience improved functioning, due to fewer expectations and social demands.

METHODS/DESIGN: In a mixed-method study to identify the impact of the COVID-19 pandemic, parents of children with ASD (ages 4-21) who were in care pre-COVID-19 at one of three large mental healthcare institutions in the region of Rotterdam participated (68 for T0, 57 for T1). The aims are (1) to investigate the impact of the COVID-19 pandemic on overall functioning and autistic symptoms of the child/adolescent with ASD, as well as parental and family functioning (QUANT-QUAL), in both the short term and longer term, and (2) to investigate risk and protective factors (in light of resilience) (QUANT-qual) and (3) to investigate care and informational needs (QUAL-quant). Pre-COVID-19 baseline data will be retrieved from clinical records. Participants will fill out two surveys (one during a COVID-19 peak-January-May 2021-and one thereafter). Survey participants were invited to participate in interviews (n=27). Surveys include measures thar were included pre-COVID-19 (ie, overall functioning and autism symptoms) as well as specific measures to identify family functioning and COVID-19 impact. The semistructured interviews focus on child, parent and family functioning and care-and informational needs.

ETHICS AND DISSEMINATION: The Medical Ethics Committee of the Erasmus MC has approved the study. Findings will be available to families of children with ASD, their care providers, the funders, autism societies, the government and other researchers.

Original languageEnglish
Article numbere049336
JournalBMJ Open
Issue number1
Publication statusPublished - 25 Jan 2022

Bibliographical note

This research is supported by a grant from ZonMw, the Netherlands Organisation for Health Research and Development, within the program 'COVID-19 Focus area 2. Care and prevention, Theme 2: Care and prevention for vulnerable citizens' (project number: 10430022010007).

© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

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