“Our children are the forgotten children”: Experiences of COVID-19 asymptomatic testing in young people with Special Educational Needs and Disabilities and those who care for them

Author:

Harragan Aimee1,Thorpe Lisa1,Amlôt Richard1,Carter Holly1,Robin Charlotte1

Affiliation:

1. Health Security Agency

Abstract

Abstract

Background The impact of the COVID-19 pandemic was felt disproportionately by people with Special Educational Needs and Disabilities (SEND), with a substantially higher mortality rate compared with the general population.Method Using focus groups and thematic analysis with young people with Special Educational Needs and Disabilities (SEND) this study highlights the negative experiences of COVID-19 asymptomatic testing for this community.Results Participants reported a systemic misunderstanding of SEND needs underpinned experiences of disempowerment, being overlooked, and feeling that needs had been unmet during the pandemic. This sits in contrast with the considerable expertise that parents and families exhibit in understanding the needs of their children with SEND. We propose the following recommendations based on insights gathered from those with lived experience: harnessing these insights in future public health response measures, using robust behavioural and social science approaches; acknowledgment of participant expertise of experience through co-produced public health guidance, crucially reflecting the diversity of SEND; development of more inclusive guidance to testing practice which supports equitable access for those with SEND and guides face-to-face practitioners in providing this support.Conclusions Our findings have implications which highlight the importance of embracing behavioural and social science in understanding the needs of SEND communities and public health policy development to ensure equity.

Publisher

Springer Science and Business Media LLC

Reference52 articles.

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2. Lunt C. (2021) Then There Was Silence: The Impact of the Pandemic on Disabled Children, Young People and their Families. Disabled Children’s Partnership. https://disabledchildrenspartnership.org.uk/wp-content/uploads/2021/10/Then-There-Was-Silence-Full-Policy-Report-10-September-2021.pdf

3. The Impact of COVID–19 on Anxiety and Worries for Families of Individuals with Special Education Needs and Disabilities in the UK;Sideropoulos V;J Autism Dev Disord,2022

4. Public Health England. (2020) Press Release: People with learning disabilities had higher death rate from COVID-19. https://www.gov.uk/government/news/people-with-learning-disabilities-had-higher-death-rate-from-covid-19 Accessed 12th November 2020.

5. O’Hagan B, Kingdom S. (2020) Experiences of children with special educational needs and disabilities and their families in the United Kingdom during the coronavirus pandemic. Tizard Learning Disability Review. Vol. 25 no. 4 2020, pp. 229–235. 10.1108/tldr-09-2020-0025

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