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An Acquired Brain Injury (ABI) at any age is a traumatic event. Having such an injury during the formative years of childhood and adolescence however, represents a particular challenge for both the young person themselves and their families/carers.

For many years it was assumed that younger people did better after an acquired brain injury. This idea came from the ability of younger brains to compensate for damage through re-organisational processes.

While there is some evidence to support the greater capacity of the brain for repair following brain injury in children, there is increasing evidence to suggest that is an over simplistic notion (Chapman & McKinnon, 2000; Dennis, 2000).

Essentially, when a child or adolescent has a brain injury, the insult is superimposed on a developing brain where basic skills such as reading and social skills may not have been laid down. Some of the resulting difficulties, known as “sleeper effects” only emerge as the child matures and fails to reach developmental milestones in line with their peers. It has been hypothesised that children with certain injuries may “grow into” the deficits acquired as a result of the trauma (Chapman & McKinnon, 2000).

Children with so called “mild” ABI often have no physical deficits but can present with a myriad of problems such as poor attention and concentration, problems with processing information and impulsive behaviour. Indeed many of these children remain undiagnosed having been discharged from acute hospitals or are later misdiagnosed with ADHD and other such conditions.

A significant number of people in our prisons have a history of mild or moderate brain injury in childhood and early intervention may have helped to prevent such an outcome.

.A long-term perspective is required when assessing the impact of ABI on children. Transition from primary to secondary school for example, when the young person is confronted with new challenges and increasingly more complex tasks is often a crisis point. The implications in terms of service provision are that there needs to be specialist multi-disciplinary assessment services available at key developmental stages. The content and focus of any rehabilitation programme must be tailored in accordance with the child’s needs and abilities at a given point in time.

The issues for parents and siblings also change as different practical and behavioural challenges are presented to the family.

Acquired Brain Injury as a Family Affair

A child’s injury or illness occurs within the context of a family and is a “family affair” (Lezak, 1989). Research has identified that the family environment both affects and is affected by the occurrence of an ABI.

Many families experience high levels of stress, financial difficulties, relationship breakdown and social isolation and these problems have been shown to increase over time. (Kinsella, et al., 1999; Osberg, Kahn, Rowe, Lash & Kahn, 1997; Taylor, et al., 1995; Wade, Taylor, 1998).

Discharge from the Rehabilitation Hospital is only the beginning of a long and isolated journey for young people with ABI and their families and carers. The lack of community services such as in-home rehabilitation, personal assistants, respite care, counselling support and case management exacerbate the stresses on families and carers. Many BRI members describe feeling “abandoned” by the health and social services. They speak of having had to become therapists, case managers, drivers, educators and advocates as well as parents. The stress of having to constantly fight for their child’s needs takes an enormous toll.

The recently introduced needs assessments system does not come with any guarantee of services and many are reluctant to put their children through yet another procedure without hope of a positive outcome. This is particularly difficult when parents are aware that proper intervention can lead their children to more productive and independent lives.

Parents of children with ABI are urgently seeking the necessary support services to adequately care for their child as well as other family members:

1. Assessment and treatment by a specialist neurological/neurosurgical team at time of injury and a follow-up “red flag” system for children with mild ABI who later develop problems.

2. Referral and admission to a specialist rehabilitation service as appropriate

3. Review assessment and treatment during key stages of the child’s and family’s life cycle

4. Good links between educational and health services staff including school visits and training of school staff

5. Community teams trained in ABI who can provide a range of services such as physiotherapy, Speech and Language Therapy, case management in-home supports and family counselling and who can link with the specialist centre

6. Respite services – both in-home and out of home

Access to vocational, residential and assisted living facilities if and when families need to access these options.

Training of Educators, Health service professional, employers, policy makers as well as the general public to raise awareness of ABI in general and paediatric ABI in particular is crucial.

Brain Injury is now a chronic care condition. More adults and children are surviving brain injury with increasing disabilities and there urgently needs to be planning for their future needs. More of our young people are being admitted to hospitals with ABI related to alcohol and drug abuse. This has been the experience internationally:

Medical advances – lead to a rise in the number of people with disabilities and increased life

expectancy (Harris et al,1971)

As a society becomes more technologically and socially complex, so the number of people with

impairments increases as does the degree of severity of impairments (Albrecht, 1992)

BRI is dedicated to raising awareness of ABI and to being a voice for all those affected by this complex condition. What families of children with ABI want is to care for their child in their own home wherever possible despite the toll on family life. The do however want the necessary back-up supports to do so while being mindful of the needs of siblings and other family members.

The young people themselves want to have friendships, relationships, education, a place to live when they should be leaving home, a job, and a future: they want to live as full a life as possible with the opportunity to reach their maximum potential.