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My Son Can’t Socially Distance or Wear a Mask: How Families of Preschool Children with Severe Developmental Delays and Challenging Behavior Experienced the COVID-19 Pandemic

Lookup NU author(s): Helen Spencer, Dr Aditya SharmaORCiD



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


© 2021 Taylor & Francis.Background: Families of children with developmental delays (DD) prior to the COVID-19 pandemic experienced inequalities in accessing health and social care services. Measures put in place to combat the spread of the coronavirus have potentially exacerbated existing inequalities and have led to additional pressures for these families. Methods: We carried out a cross-sectional online survey of parents of young children with moderate to severe DD and challenging behaviors living in England, UK. We asked about the impact the pandemic has had on their family well-being, receipt of support, and post COVID-19 concerns. Results: Eighty-eight parents who are participants in an ongoing clinical trial (EPICC-ID) reported a broad range of challenges they faced during the pandemic: lack of information specific to children with DD; difficulties following social distancing and isolation rules; disruption or pause of health and social care services; deterioration in parental mental health and regression of the child’s skills. Future access to services, negative long-term impact of school closures, parental unemployment were the parents’ main post-COVID-19 concerns. Conclusions: Families of children with significant developmental delays fear lasting impact of the pandemic on their own psychological and material wellbeing and on their child’s health. These families require urgent help to meet major health and social care needs and should be prioritized within an overall children’s mental health strategy. The article includes a commentary from parents with lived experience.

Publication metadata

Author(s): Paulauskaite L, Farris O, Spencer H, Absoud A, Absoud M, Ambler G, Barnes J, Hunter R, Kyriakopoulos M, Paliokosta E, Panca M, Royston R, Sharma A, Slonims V, Sutcliffe A, Thomas M

Publication type: Article

Publication status: Published

Journal: Journal of Mental Health Research in Intellectual Disabilities

Year: 2021

Volume: 14

Issue: 2

Pages: 225-236

Online publication date: 19/01/2021

Acceptance date: 02/04/2016

Date deposited: 02/02/2021

ISSN (print): 1931-5864

ISSN (electronic): 1931-5872

Publisher: Taylor & Francis


DOI: 10.1080/19315864.2021.1874578


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