"Our children are the forgotten children": lived experiences of COVID-19 asymptomatic testing in young people with special educational needs and disabilities and those who care for them.
4 affiliations
- 1Behavioural Science and Insights Unit, UK Health Security Agency, Suite 3B, 3rd Floor, Cunard Building, Water Street, Liverpool, L3 1DS, UK.
- 2Behavioural Science and Insights Unit, UK Health Security Agency, Leeds, UK.
- 3Behavioural Science and Insights Unit, UK Health Security Agency, Salisbury, UK.
- 4Behavioural Science and Insights Unit, UK Health Security Agency, Suite 3B, 3rd Floor, Cunard Building, Water Street, Liverpool, L3 1DS, UK. [email protected].
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. Regular testing was an important part of the public health response to reduce infections, however many people with SEND were unable to access COVID-19 testing. Our aim was to understand SEND experiences of and barriers to COVID-19 testing.Method
We conducted focus groups with young people with SEND and those who care for them to explore their experiences of COVID-19 testing. Thematic analysis was used to identify challenges encountered and how they were navigated.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. Participants expressed feeling their opportunity to engage in testing was restricted through a misunderstanding of how their physical and communication needs may differ from the wider population.Conclusions
Our findings highlight how a misunderstanding of SEND needs and negative impacts of attempts to engage in testing despite considerable barriers, left SEND communities feeling forgotten during the pandemic. We propose the following recommendations: 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.
Related
- Illuminating the voices of forgotten youth: A photovoice analysis of the mental health experiences of Muslim siblings of children with disabilities
- Beyond Participation, Towards Meaningful Inclusion: An Experience-Sensitive Approach to Inquiry with Children and Young People with Special Educational Needs and Disabilities (SEND)
- Intersectional Barriers to and Facilitators of Educational Inclusion for Persons With Disabilities in Low‐ and Middle‐Income Countries: A Systematic Literature Review
- Are intellectual and developmental disabilities and mental illnesses associated with poorer educational outcomes? Evidence from India’s National Sample Survey
- “I just tell them to do it privately”: parents’ experiences managing sexual behaviours in adolescents with intellectual disabilities
BibTeX
@article{harragan2026children,
title = {{"Our children are the forgotten children": lived experiences of COVID-19 asymptomatic testing in young people with special educational needs and disabilities and those who care for them.}},
author = {Aimee Harragan and Lisa Thorpe and Holly Carter and Richard Amlôt and Charlotte Robin},
journal = {BMC public health},
year = {2026},
month = jul,
doi = {10.1186/s12889-026-28743-w},
url = {https://europepmc.org/article/MED/42919205},
note = {CC BY},
}
RIS
TY - JOUR
TI - "Our children are the forgotten children": lived experiences of COVID-19 asymptomatic testing in young people with special educational needs and disabilities and those who care for them.
AU - Aimee Harragan
AU - Lisa Thorpe
AU - Holly Carter
AU - Richard Amlôt
AU - Charlotte Robin
PY - 2026
DA - 2026/07/01
JO - BMC public health
DO - 10.1186/s12889-026-28743-w
UR - https://europepmc.org/article/MED/42919205
AB - 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. Regular testing was an important part of the public health response to reduce infections, however many people with SEND were unable to access COVID-19 testing. Our aim was to understand SEND experiences of and barriers to COVID-19 testing.Method We conducted focus groups with young people with SEND and those who care for them to explore their experiences of COVID-19 testing. Thematic analysis was used to identify challenges encountered and how they were navigated.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. Participants expressed feeling their opportunity to engage in testing was restricted through a misunderstanding of how their physical and communication needs may differ from the wider population.Conclusions Our findings highlight how a misunderstanding of SEND needs and negative impacts of attempts to engage in testing despite considerable barriers, left SEND communities feeling forgotten during the pandemic. We propose the following recommendations: 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.
SN - 1471-2458
ER -