An in-depth study conducted in the US and submitted to the American Congress outlines many issues hindering the delivery of rehab to brain injured young people.
While carried out by US-focused organisations – the Centers for Disease Control and Prevention in collaboration with the National Institutes for Health – it offers insights for child brain injury treatment globally.
The extensive paper, The Management of Traumatic Brain Injury (TBI) in Children: Opportunities for Action, suggests a lack of knowledge, infrastructure and consistency in services is at the heart of problems in getting young people the long-term treatment they require.
Annually, TBIs in children (aged 14 and under) in the US cause around 640,000 A&E visits, 18,000 hospitalisations and 1,500 deaths.
The leading causes of these incidents are unintentional falls and being struck by or against an object, whereas for those 15-24 years of age, the leading causes were motor vehicle crashes and falls.
Sports and recreational activities accounted for an estimated 325,000 A&E visits among children and teens.
Against such numbers, the report warns: “There is frequently an incomplete understanding about the effects of TBI beyond the initial injury among parents, healthcare professionals and educators.
This often creates barriers to optimising outcomes for children across their lifespan, including the achievement of high school graduation employment, and engagement in a healthy lifestyle.
“It is widely recognised that children with brain injury are under-identified for health and educational services and under-served by existing support, placing them at risk for poor health and educational outcomes.
“Understanding the gaps in care and developing approaches for optimal assessment, access to services and service delivery is critical to ensuring that children with TBI have the best possible treatment and outcomes.”
One of these gaps is a “substantial variation” in acute injury care for children. “Not only are there inconsistences in TBI assessment, but also in the comprehensiveness of discharge recommendations for all severity levels of TBI,” the report says.
Other gaps include:
• A lack of monitoring of children with a TBI over a prolonged period of time a er their injury
• Poor awareness of the implications of brain injury and possible pathways among parents
• Difficult access to schools-based support services
• Following concussions, a dearth in ‘return to play’ guidelines for activities beyond organised sports
• A drop-o in access to care following the transition from adolescence to adulthood
• Limited “TBI recognition” training for professionals involved in the care and support of young people
• A lack of hard evidence and research on long-term outcomes for children with TBI
Although the report focuses largely on the US, its findings mirror many of the challenges faced in the UK, says Katy James, head of the Children’s Trust’s brain injury community service.
“Our experience of supporting children in the community is that all too often the full impact of a child’s brain injury is not recognised and in many cases the injury is forgotten about as the child gets older.
“Children and young people with acquired brain injury often experience ‘hidden disability’ – cognitive, communication and emotional difficulties that are not immediately apparent or are not understood by care givers or educators.
“We also know from experience that these difficulties can become more of a problem as children face the challenge of moving into adolescence and towards adulthood.
“And yet we find that support services in the UK are limited and often there is a lack of collaboration between health, education and social care. Provision can be haphazard and influenced by postcode, the nature of the injury and parental ability to have a voice for their child. Young people moving from children to adult services often hit a ‘black hole’.
“While recent developments from regional networks and awareness-raising activity is promising, there remains no national framework and we are still a long way off from a cohesive and equitable UK model of provision for children with acquired brain injury. More needs to be done to build the evidence base and research the long-term impact of ABI in order to shape services.”