Looking for the hidden population of children with an acquired brain injury
Categories: Research using linked data, Blogs, ADR UK Research Fellows, ADR England, Office for National Statistics, Children & young people, Health & wellbeing, Inequality & social inclusion
18 February 2025
Dr Hope Kent, an ADR UK Research Fellow using the Education and Child Health Insights from Linked Data (ECHILD) dataset, describes the challenges of identifying and supporting children with an acquired brain injury in the UK.
Acquired brain injury is a leading cause of death and disability for children globally. However, it is often described as a ‘silent epidemic’ because it is a relatively poorly understood condition. This is, in part, because we have so little data about children with an acquired brain injury in the UK.
What is an acquired brain injury?
An acquired brain injury is any injury to the brain which happens any time after birth. This might be due to infection (like meningitis), oxygen deprivation, stroke, brain tumours, or a traumatic injury. Traumatic brain injuries are blows to the head which cause the brain to move around in the skull. They might be caused by a road traffic accident, a sporting accident, or violence, for example.
What are the consequences of acquired brain injuries?
When the brain is injured, the resulting impairments can vary - from mild concussion symptoms which resolve within hours or days, to profound disability.
They can sometimes lead to physical impairments in combination with other difficulties, but sometimes exists as a ‘hidden disability’ where a child may have difficulties across areas like:
- Cognition: learning, memory, attention, and reasoning
- Emotional functioning: regulating and expressing emotions, understanding the emotions of others, and restraining emotional reactions
- Communication: speech, language, and communication
- Fatigue: physical and/or mental exhaustion and lack of energy, which is not associated with amount of sleep.
When someone first experiences an illness or injury that might lead to an acquired brain injury, it is often an acute medical situation treated in hospital. However, as the ‘right to rehab’ campaign describes, it can be a ‘postcode lottery’ as to who gets ongoing support. This means that children who acquire a brain injury may return to school with complex long-term symptoms, which are poorly understood by education professionals.
How many children have an acquired brain injury in the UK?
In short, it is very difficult to know. There is very limited prevalence data in the UK, and the data that does exist often relates only to traumatic injuries, rather than the whole umbrella of acquired brain injury.
So – we need more data. This is one of the aims of my project.
What happens to children with acquired brain injuries in schools?
Children with the symptoms described above face significant challenges when trying to navigate mainstream school classrooms. They may be required to concentrate for long periods of time, engage with learning content that may not match their current abilities, navigate complex relationships with peers and teachers, and regulate their behaviour in a way deemed appropriate for the classroom. If children are unable to meet these demands, this can lead to outcomes like school exclusion.
However, we have very little knowledge about what happens to children with a brain injury in schools in the UK. Brain injury is not a SEN (special educational needs) category, which means we do not have any data about how many children are receiving additional support for an acquired brain injury. In America, acquired brain injury is a SEN category, so there is more data available – which suggests that just 18% of children who have lasting disability from a brain injury are receiving any special educational support.
What are the aims of this project?
My project uses the ECHILD dataset, which links health and education data for children in England. This is a really exciting dataset, which allows me to look at outcomes for children with brain injuries in schools for the first time.
This data will enable me to understand how many children in the UK are likely to have a brain injury, and how many children get identified for SEN support when they return to school. I will then look at journeys through education, to highlight what additional support might be needed for children with this hidden disability.
Project partners
This project has been developed in partnership with the UK Acquired Brain Injury Forum, and their National Acquired Brain Injury in Learning and Education Syndicate.
