Some key messages about specialist brain injury rehabilitation emerge from understanding the brain injury, impairments and impacts for each person.
These key messages have implications for brain injury specialist rehabilitation, in particular the principles on which it is based, the core activities that are undertaken and the pathways and settings that are relevant.
- Each person’s brain injury is unique. Due to the nature of the injury to the brain, each person’s injuries are unique.
- Each person’s mix of impairments are unique. Each person’s brain injury is unique, therefore each person’s mix of impairments is unique.
- Each person’s impairments cross multiple domains. The brain injury produces acute, complex and functionally significant abnormality across multiple domains of cerebral function, including cognitive impairment, behavioural and personality change, neurological impairment, etc.
- The impairments impact on the person’s ability to work on rehabilitation. The impairments often include impacts on the person’s ability to work on rehabilitation.
- The consequences of brain injury extend beyond the purely clinical and have profound implications for relationships, ability to work, participation in society and overall quality of life. There are profound unique impacts on people’s lives, and the lives of their family and friends, as well as their ability to live in the community. The rehabilitation journey includes working with these impacts.
- Prior life experience (or lack of), interests and skills have an impact on rehabilitation. The unique life experience, interests and skill sets have profound implications on rehabilitation, as functioning prior to injury is often used to set targets for rehabilitation goals and future participation.
- The brain injury specialist rehabilitation pathway is from the injury to living in the community. Brain injury specialist rehabilitation goes from acute rehabilitation to social rehabilitation, e.g. school participation, sporting or leisure groups.
- The impacts of brain injury on children are different from the impacts on adults. The differences are due to the developmental stages a child’s brain moves through from childhood to adulthood; the different life stages a child moves through, such as from preschool to school, primary to secondary school, etc.; and finally the transition from children’s services to adult services for some children.
- Working with children is different to working with adults. This is because the decision making is made by parents and carers and because family-centred care is critically important in providing healthcare to children with serious medical conditions.
- Many people with a brain injury have challenging behaviours at some time during rehabilitation.30,31 Challenging behaviours for community-dwelling adults with severe TBI were widespread, having an overall prevalence rate of 54%. The most common challenging behaviours are inappropriate social behaviour, verbal aggression and adynamia (lack of motivation). Many people with severe brain injury display more than one type of challenging behaviour.
- People aged 15-34 incur most TBI and in the most severe forms. This can have long-term, lifelong social participation consequences. It is especially important to do maximise rehabilitation so as to maximise the benefits for lifelong social participation.
- The services involved in brain injury specialist rehabilitation include health and hospital services and community services. Specialist brain injury rehabilitation blends the person’s rehabilitation pathway, available services and funding for services with the services crossing health and community services.
- Specialist brain injury rehabilitation works with multiple sources of funding. Because the rehabilitation pathway goes from hospital to the community there are multiple sources of funds for rehabilitation including health funding, NDIS, worker’s compensation insurance, other insurance.
- There are multiple sets of principles to be taken into account in brain injury specialist rehabilitation, for example:
- rehabilitation principles, e.g. Principles to Support Rehabilitation Care
- disability standards and principles, e.g. National Disability Standards
- NSW Health values and principles
- family-centred care principles (for working with children)
- working with families and carer principles (for working with adults)
- transition principles for adolescents transitioning to decision making.
Examples in relation to principles
- While person centred care is a principle in all good practice healthcare and community services, in specialist brain injury rehabilitation it is especially important as it is carrying the added significance that the injury, impairments and impacts are unique to the person, therefore their rehabilitation pathway will also be unique.
- Due to the nature of the injury, impairments and impacts, families are recognised as important members of the rehabilitation team and can influence rehabilitation and community outcomes when providing emotional, practical and social support. So the principles for brain injury specialist rehabilitation include engaging families and carers.
Example in relation to core activities
- Case management is a core activity for many clients because of the individual nature of each person’s rehabilitation process and the complexity of weaving this together with services and funding while engaging with the family and carers and dealing with all of the unique individual, family and social impacts.
Example in relation to settings
- Settings not only include hospitals and other health services but also include transitional living accommodation and community settings, not just living at home but also when the person is out and about in the community.
Examples in relation to pathways
- People with brain injury may require additional specialist rehabilitation as their circumstances change, as they make life transitions and so on. So pathways must include not only points of entry to specialist rehabilitation, but also points of return to specialist rehabilitation, without having to start at the beginning of the rehabilitation pathway process.
- Due to the nature of the injury, impairments and impacts, people with brain injury will need services and supports provided concurrently at key points in the continuum of recovery, rehabilitation, adjustment and living with newly acquired disabilities.