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

doi:10.1136/bmjopen-2021-049336

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 journal › Article › Academic › peer-review

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Abstract

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 language	English
Article number	e049336
Journal	BMJ Open
Volume	12
Issue number	1
DOIs	https://doi.org/10.1136/bmjopen-2021-049336
Publication status	Published - 25 Jan 2022

Bibliographical note

Funding:
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.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1136/bmjopen-2021-049336Licence: CC BY

e049336.fullFinal published version, 513 KBLicence: CC BY

Cite this

Dekker, L., Hooijman, L., Louwerse, A., Visser, K., Bastiaansen, D., Ten Hoopen, L., De Nijs, P., Dieleman, G., Ester, W., Van Rijen, S., Truijens, F., & Van Der Hallen, R. (2022). Impact of the COVID-19 pandemic on children and adolescents with autism spectrum disorder and their families: A mixed-methods study protocol. BMJ Open, 12(1), Article e049336. https://doi.org/10.1136/bmjopen-2021-049336

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abstract = "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.",

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

note = "Funding: 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). {\textcopyright} 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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Dekker, L , Hooijman, L , Louwerse, A, Visser, K, Bastiaansen, D, Ten Hoopen, L , De Nijs, P , Dieleman, G, Ester, W, Van Rijen, S , Truijens, F & Van Der Hallen, R 2022, 'Impact of the COVID-19 pandemic on children and adolescents with autism spectrum disorder and their families: A mixed-methods study protocol', BMJ Open, vol. 12, no. 1, e049336. https://doi.org/10.1136/bmjopen-2021-049336

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T2 - A mixed-methods study protocol

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AU - Hooijman, Linde

AU - Louwerse, Anneke

AU - Visser, Kirsten

AU - Bastiaansen, Dennis

AU - Ten Hoopen, Leontine

AU - De Nijs, Pieter

AU - Dieleman, Gwen

AU - Ester, Wietske

AU - Van Rijen, Susan

AU - Truijens, Femke

AU - Van Der Hallen, Ruth

N1 - Funding: 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.

PY - 2022/1/25

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N2 - 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.

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

Abstract

Bibliographical note

UN SDGs

Access to Document

Other files and links

Fingerprint

Parent-reported impact of COVID-19 on children and adolescents with ASD.

Care and informational needs of parents of children with ASD during the COVID-19 pandemic.

The impact of COVID-19 on children and adolescents with autism spectrum disorder and their families

Impact van COVID-19 op gezinnen met kinderen met ASS: De impact op ouders & blik op de toekomst. [Webinar]

Cite this

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

Abstract

Bibliographical note

UN SDGs

Access to Document

Other files and links

Fingerprint

Research output

Parent-reported impact of COVID-19 on children and adolescents with ASD.

Activities

Care and informational needs of parents of children with ASD during the COVID-19 pandemic.

The impact of COVID-19 on children and adolescents with autism spectrum disorder and their families

Press/Media

Impact van COVID-19 op gezinnen met kinderen met ASS: De impact op ouders & blik op de toekomst. [Webinar]

Cite this