Rehabilitation at home after an acquired brain injury
This section talks about what rehabilitation is, and explains the different therapies you might come across.One of the definitions of ‘rehabilitate’ in The Oxford English Dictionary is: “to restore someone back to health through training and therapy”.1 Although this is a good place to start, it’s rarely quite this simple with acquired brain injury. Recovery may go on for many years, and many children are affected by their brain injury for the rest of their lives.2 The sheer complexity of the brain means the process of restoring a child back to health after an acquired brain injury can take time and patience.3 The aim of rehabilitation is to give children the very best chance at making improvements through different therapies or treatments. It aims to give children and young people as much independence as possible4, and to work on skills they may be struggling with.5 It may be an uncertain time for parents, but in all the uncertainty there is also great possibility. The experts may not be able to guarantee the level of recovery, but neither can they rule out the dramatic improvements many families have witnessed.6
You have to spend a lot of time encouraging. Sometimes, I even did some of the movements and things in physiotherapy with him. When he’d seen me do it, I think it helped him follow on."Parent's experienceIf a child has returned home, they may well have experienced some form of therapy already.your child has returned home, or you are planning a return home, you may well have experienced some form of therapy already. Perhaps there were rehabilitation services at the hospital, such as physiotherapy. A child may be returning home from a specialist rehabilitation centre, where they’ve had various therapies. The child's familyYou may be in the process of looking into community services. A specialist from a charitable organisation or your local authority may provide therapy. While we wouldn’t presume to speak for every service in detail, there are some broad aims that are common to rehabilitation:
- Getting back some of the everyday skills lost after the injury (and in many cases learning new ways of doing them ).
- Supporting children in doing these everyday tasks through strategies4.
- Equipping a child for getting back out into their community.5
- Allowing a child to live as independently as possible.4
- Improving emotional wellbeing.7
- Enabling a child to accept who they are after their injury.8
As well as physical tiredness, a child’s ability to concentrate for any length of time may be affected by a brain injury. This is often called ‘cognitive fatigue’ – a tiredness of the mind and of the senses.11 Children might complain about not being able to focus. They may be irritable, and these are things that may have an effect on their rehabilitation.12 It’s natural for parents to want to ‘make the most’ of their child’s rehabilitation and get as much time with therapists as possible. But it’s important to remember that frequent breaks and time for a child to prepare themselves for their next session is extremely valuable. Having a brain injury is a little like having a smaller fuel tank in a car. It isn’t that a child can’t get where they want to, it’s only that they need to make more stops for petrol on the way.13 As well as these more structured therapies, rehabilitation might also take the form of social or work-related activities.
TherapyThe different forms of therapy and their aims for your child are rich and varied. At its most basic, a therapy is a discipline, a group of techniques designed to help your child improve in a particular aspect of their lives. Many of us have an idea about what physiotherapy entails, but perhaps something like play therapy is new to you. Some children will have a programme that focuses only on the kinds of therapy it has been decided they need. Others might have a more varied range of therapies. If your child is at a specialist centre they may have many different therapies – what’s called a “multidisciplinary approach”.14
All of these approaches can help bring about real improvements to a child’s independence and wellbeing.
Nevertheless, it’s important to be realistic about what can be achieved and the hard work it takes on the part of the child, family and therapists.15
You might like to explore the different kinds of therapy in the guide that follows here.
What are its aims?:Although it starts with the movement of the body, physiotherapy aims to improve children’s wellbeing, comfort, and a sense of their own independence. Crucially, physiotherapy can also be fun, as children take part in exercises, games and activities to help them fulfil their potential.
What does it involve?:As well as moving the muscles to encourage greater movement and flexibility, it may take the form of specific exercise, or managing posture. Each child’s targets in physiotherapy will be very different.
Give me an example:Hydrotherapy. In being supported by water in a pool, children are better able to move and exercise.
Who does it?:Physiotherapists qualifying today will usually have a degree in the subject. Before they qualify, they will need to have done a particular number of practical hours to demonstrate their competence. They will usually be a member of a professional body like the Chartered Society of Physiotherapists. Like lots of healthcare professionals, some will have a speciality in working with children.
Occupational therapy (or OT)18
What are its aims?:To allow children to better perform everyday activities, some of which they may have lost the ability to do because of their injury.19 Crucially, occupational therapy is about giving children greater independence in their lives. “Occupation” means any activity a person undertakes, enjoys and values. More importantly, everything we do – our daily occupations – help to define our identity and role. If an individual is unable to do what is important to them, their health and wellbeing may suffer.
What does it involve?:Children with an acquired brain injury might struggle with the ‘sequencing’ of a task – the right order in which to do practical, everyday things.20 Occupational therapists (or OTs), working with the child, develop ways of helping them structure tasks like cleaning their teeth or getting ready for school. It’s about building on the child’s ‘life skills’ and these therapists talk about enhancing someone’s ‘participation’ in the world around them. For young people, occupational therapists might make job skills the focus.
Give me an example:An OT might set out the exact steps for something like getting dressed. They will work on the sensory skills needed to pick clothes. They may then look at the movements and organisational skill in getting the clothes in the right order. After this, they may look at the co-ordination and balance involved in getting dressed. Read a blog about getting a child dressed after an ABI here.
Who does it?:Occupational therapists train in their subject up to degree level. Some will have completed postgraduate diplomas or master’s degrees in the subject.
Speech and language therapy (or SLT)18
What are its aims?:To help children in the way they communicate after an acquired brain injury. It could be that the child has difficulty with certain speech sounds, finding the right words, or saying things which are socially appropriate.21, 22 Children might also have difficulties understanding the language they hear, or keeping up with what people are saying to them. Speech and language therapists also help children with eating and drinking after brain injury as the muscles that control swallowing may have been affected.
What does it involve?:Therapists carry out thorough assessments to establish just what a child’s needs are. For some children, it may be a case of practising the formation of words. For children with more profound speech difficulties, a therapist may help them find other ways of expressing themselves, perhaps through signs or even electronic devices.
Give me an example:A child may practise oral skills to help with speech, or play word games to help with word finding. All therapy tasks will bear in mind that children need to use their skills to communicate in the real world.
Who does it?:Therapists qualifying today are required by law to have a degree or equivalent in speech therapy. They then receive a certificate. As with many of the other therapists here, some will specialise in working with children.
What are its aims?:Most children find it difficult to talk through their problems and concerns in the same way an adult would. And speech and language difficulties might make this yet more difficult.21, 22 Play therapy gives children a private, confidential space to work through anything that’s troubling them. Play is important to all children in that it’s a big part of their emotional development. Ultimately, the aim of play therapy is to reduce children’s anxieties and strengthen their resilience. Play therapy may also be useful for siblings.24
What does it involve?:Children have access to all kinds of toys, arts and crafts and play materials. They may act out something that’s bothering them, they might draw something that’s on their mind, or they may simply make the most of the opportunity to express themselves through play.
Give me an example:One 12-year-old boy put it best when he was asked by another child what play therapy is. “My play therapist helps me feel better and helps me to cope with how hard it is to be away from home.”
Who does it?:Play therapists have had extensive training in child development, and will have completed a postgraduate course in play therapy.
What are its aims?:We’re only just beginning to understand the enormous potential of music as a form of therapy. Music can be a powerful form of self-expression for children, but it also gives them a chance to interact with others.
What does it involve?:By improvising music and taking turns to make noise on instruments (or even singing), children build on their ability to interact. It’s less about developing musical ability and more about helping children take turns in conversation and make choices.22 Music therapy is often used with children who have language difficulties after an injury.25
Give me an example:One boy with a profound learning disability and significant hearing loss following his injury worked with his music therapist on a resonance board (a wooden platform). Through this he could feel the resonance throughout his body when the guitar was played. He developed his social interaction skills by vocalising in turn with the therapist and turning to reach for the guitar, which was interpreted as a request for ‘more’ during a pause.
Who does it?:Music therapists are accomplished musicians first. They will normally hold a qualification in music before they go on to train as therapists.
What are its aims?:These professionals can be a key ally to families in difficult times. Their principal role is to make sure everyone in a family is ticking over and that they’re getting the help and services they need.
What does it involve?:Social workers may co-ordinate discharge planning, refer children to services in the community and answer questions about any issues that come up. A social worker might help steer a family towards appropriate services in the community after discharge from hospital.
Give me an example:A social worker might advise a family on what benefits they are entitled to.
Who does it?:Since 2003, all social workers need to have a degree in social work. This qualification includes 200 days of on-the-job assessment.
What are it aims?:The aims of clinical psychology are wide-ranging. These professionals may give children emotional support as they go through stressful medical procedures. They might help children with emotional difficulties or give advice about how children can talk about their condition with friends and family.
What does it involve?:Despite its scientific name, the primary role of a clinical psychologist is to talk things over with children. They will have clinically-designed ways of assessing children.
The sessions are sometimes confidential and children will set goals and aims with their psychologist.
Give me an example:A clinical psychologist might work with children, carrying out assessments through interviews and observation.
Who does it?:Clinical psychologists are qualified up to PhD level. Most psychologists who talk with children will specialise in this area.
What are its aims?:Neuropsychologists work specifically with people who have brain injuries or other difficulties with their nervous system. As well as knowing about mental health difficulties, neurospsychologists understand the relationship these difficulties have with the biological processes that go on in the brain.
What does it involve?Neuropsychologists often work in acute settings – when an illness or injury needs the most attention. They also work in rehabilitation, providing post-acute assessment.
Give me an example:A neuropsychologist might offer specialised training and support for a child with acquired brain injury.
Who does it?:Neuropsychology is a post-qualification discipline. They first need to be Chartered Psychologists within the field of clinical or educational psychology.
Educational psychologist (or EP)
What are its aims?:This branch of psychology looks at the way children learn and their individual strengths and difficulties. As with all children, the broad aim for those with ABI is to support those who may be experiencing problems in their education.28 This involves working with teachers and families to help them understand the difficulties a child may experience.
What does it involve?:Educational psychologists (sometimes called EPs) support school staff in addressing children’s learning and behaviour difficulties. They may carry out an assessment of a child’s educational needs and make recommendations. This assessment may include working with other key people in the child’s life. There may be more assessments over time as a child’s needs change. For children with more complex needs, the EP is part of the team that advises the local authority about the ‘statutory assessment’ process.
Give me an example:Polly had an acquired brain injury following a road traffic accident and went to a specialist centre on a three-month rehabilitation programme. The EP supported the family through the planning and discharge process for her return to school. The EP liaised with the school and the local authority, offering advice on Polly’s changed needs.
Who does it?:Educational psychologists will have completed a degree in psychology and have experience of working with children and young people before moving on to a doctorate-level degree specialising in educational psychology. Many are employed by local authorities as part of a children’s services department.
What are its aims?:A child’s brain injury affects their whole family.30 Family Therapy provides a safe and supportive space for individuals, couples and family groups to think about their situation. It enables family members to express and explore the difficulties they face. Bringing people and ideas together in this way can improve communication, allow better understanding as well as aid the rehabilitation process.
What does it involve?:Family therapists sometimes work with whole families, sometimes on a one-to-one basis, and almost everything in between. They might help by talking things through. They may also suggest strategies and ways of dealing with any difficulties.
Give me an example:Parents might want to discuss the ways their roles have changed. They may want to discuss their feelings about the future.
Who does it?:Family therapists will have a degree before they go on to a postgraduate course (usually lasting four years).
Most of the therapists above will be registered with the Health Professions Council. This is an independent body that holds professionals to a set of standards. Visit its site here.
Family and friends31Although you may not have the medical know-how of all the people mentioned above, a supportive family is a crucial piece of the rehabilitation puzzle.32 Families have a unique role in rehabilitation.
They know how the child was before their injury,and they’ve been there at every stage of a child’s care. Perhaps most importantly, families will have their child’s interests at heart in a way that only they can. They offer emotional support and can have an enormous impact on a child’s progress.33 The British Society of Rehabilitation Medicine describes family members as a ‘crucial asset’ in the healing process.31 The family has a special rapport with their child and can provide valuable insight into their character. You might even find the professionals consulting you about some things. Some parents like to become involved in setting goals and targets for their children. They may have practical knowledge about how to make therapy more meaningful or appealing to their child. And, on an everyday level, having parents sit in on therapy and teaching sessions may help calm any anxieties their child has.9 Siblings may also like to sit in on sessions. This may help them understand what their brother or sister is experiencing.34 Parents may well pick up skills and strategies they can take home.9
Some children may require medication following an acquired brain injury. It is commonly used to treat effects of brain injury like:
- Seizures and epilepsy
- Difficulties with concentration
- Difficulties with muscles
- Difficulties with mood – depression and anxiety