Key messages

The nature of ABI has implications on how to work with people with ABI.

There are three sets of key messages.

These are explored in detail in Module 2. Working with people with ABI (opens in new window):

A. Unique individuals building independence
B. Working through emotions and relationships
C. Working with services

There are also:

D. Principles & Standards
E. Practice tools

 

 

A. Unique individuals building independence

People with an acquired brain injury can grow in their skills for independence in the short and long term (except where the ABI is caused by a degenerative disease). The rate of development can be slow and so not noticed. People can give up too soon.

Most people getting a traumatic brain injury and many others with ABI are young - they have a lot of life ahead of them and plenty of time to develop. People with ABI may need support to manage independent skills for life when they can't maintain a skill on their own.

a) Uniqueness of the individual

All people are unique individuals. Yet the most important message for people working with people with ABI is: people with ABI are unique individuals. The specific effects of ABI on an individual depend on, for example, the severity of the ABI, the location of the brain damage, the length of time since brain injury, the extent a person has been able to integrate back into the community and the support available to the person.

b) Injury- effect - behaviour - strategies

People with an ABI have a brain injury. The injury has an effect on the working of the brain. The working of their brain affects their behaviour. People working with people with an ABI have to manage behaviours. The effects of the injury are unique to the person.

c) For many people with ABI - being the proxy for the frontal lobe

People who have damage to the frontal lobe of the brain often have difficulty with planning, coordinating, getting started, sticking to the task, finishing the task and so on.

One of the consequences of this is that people who have frontal lobe damage need someone to be the proxy for their frontal lobe. They need someone to help them with planning and coordinating, making important decisions. Often this is a family member's role. Sometimes it is the case manager's role.

d) Change happens in the day to day

Change happens in the day to day. If a person without an ABI goes to see a psychologist a lot of progress can be made in the interview. The person generates their own plans for integrating therapy in day to day life.

If a person with an ABI goes to see a psychologist, and they have for example problems with planning, coordinating, memory then they will need additional support for these impairments in order to make progress. The support will be to provide day to day strategies, processes and systems - e.g. putting memory aids in place to enable a person with ABI to integrate the therapy into their everyday life.

e) A life span view

Individuals have a life before the ABI.
They have a life after the ABI.
Rehabilitation is part of their life after the ABI.

See each individual with an ABI within the context of their life span, the time before their injury and the time after they get their injury.

f) Person centred goal directed

Person centred

In a person centred approach the person with the ABI

Is an equal partner in planning, developing and accessing services to appropriately  their needs.

A person centred approach aims to:

• Be client focused,
• Promote independence and autonomy,
• Provide choice and control and
• Be based on a philosophy of collaboration and teamwork.
• It takes into account your needs and views and builds relationships with your family members.

Goal directed

Goals are what the person with the ABI wants to achieve.
Goals belong to ther person with the ABI, not to workers, clinicians or service providers. 

Rehabilitation programs exist so that therperson with the ABI can achieve your goals.  Rehabilitation goals typically focus on improvement.

Perople with ABI have life goals after rehabilitation – including maintain goals and prevent deterioration.

 

B. Working through emotions and relationships

g) The person with the ABI - the effects of the injury and dealing with the effects of the injury

A person with an acquired brain injury has had a life before the injury. Unless they are very young when they had the injury they will remember the life they had.

The acquired brain injury may have affected their thinking skills, communication/language, physical/sensory and emotional/behavioural/personality. In addition to experiencing these changes the person with the ABI has to respond to and come to terms with their new life situation. They also have to deal with their family members and friends coming to terms with the changes in them. As with any major life change loss, grief and rediscovery are part of the process.

h) Family members

Family members have also to be able to deal with: the changes in the family member because of the ABI; the responses to the family member in coming to terms with the ABI; their own coming to terms with all of this, and the impact of the change on the family.

Family members have a key role in helping the person with the ABI recover. Loss, grief and rediscovery are part of the process.

i) Grief and loss

People with an ABI had a life before the ABI.

Family members of a person with an ABI had a life with the person before the ABI.

Loss and grief is part of working through the impact of having an ABI.

Grief is how we respond when we experience loss. Grief is a normal, natural and inevitable response to loss and it can affect every part of our lives.

Grief can seem like a roller-coaster ride with ups and downs, or it may feel like we are being battered about like a little boat in a storm. Sometimes it can seem overwhelming and frightening. Grief allows us to gradually adjust to our loss and find a way of going on with our life.

Everyone experiences grief in their own way. There is no 'correct' way to grieve, and no way to 'fix it'.

Everyone working with people with ABI needs to understand grief and loss and how to work with people experiencing grief and loss.

j) Support Workers

Building relationships and looking after oneself (including self-understanding about handling own stress, what pushes your buttons).

A key to working with a person with an ABI is building a relationship with them. Working with people with acquired brain injury can be difficult.

• It can be hard to get to know them.
• It can take time to get to know them.
• Behaviours can be difficult to deal with.
• They can be different from other people you have worked with.

Workers need self-understanding about handling their own stress and what pushes their buttons.

k) Managers and team leaders

Managers of workers working with people with ABI need to understand a key to working with a person with an ABI is building a relationship with them. Working with people with acquired brain injury can be difficult.

The difficulties create stress for workers and the stress needs to be managed so it doesn't lead to disillusionment.

l) Case managers

Case managers also need to know a key to working with a person with an ABI is building a relationship with them. Working with people with acquired brain injury can be difficult.

Case managers also have to work with the person with the ABI and their family members in the grief process.

Case managers also have to change how they do case management to make it appropriate to working with people with ABI. They are also often involved in other services changing their work practices in order to provide a better service for people with ABI.

Changing one's own work practices and processes and practices of one's own and other organisations can be challenging.

Case managers need self-understanding about handling their own stress and what pushes their buttons.

m) Professional boundaries

Professional boundaries exist so that workers always act in the interests of the clients

Professional boundaries exist so that workers always act in the interests of the clients and not for other reasons, e.g. personal gain, to feel needed, to make friends, etc.

Professional boundaries are based on ethical principles.

Professional boundaries exist to allow for safe connections between people in situations where one person is working in the interests of their clients.

Crossing professional boundaries always causes harm.  However the harm is not always evident to all parties.

Maintaining professional boundaries is essential for getting the best possible attendant care. 

 

C. Working with services

n) Pathways

Service pathways vary from one person with ABI to another. To understand an individuals' service pathway it is useful to understand:

a) The person's injury and their personal journey of recovery and rehabilitation
b) Typical service pathways
c) Typical funding pathways for rehabilitation and support services

Unique individuals mean that service pathways are unique. At the same time staff need to be aware of typical service pathways; local barriers to pathways and strategies for dealing with pathway barriers.

o) Part of a team - who's who - including accessing specialist assessments

Working with a person with an acquired brain injury often means being part of a team. It is important to understand everyone's role. There can be different teams at different stages in the process: acute care staff and family and friends; rehabilitation team; community living team.

p) Working with the services network

The services network of people with ABI is imperfect. There are some great parts. There are good parts. There are missing parts. The primary drivers for working with the services network are:

• What are the person with ABI's goals?
• What does the person with ABI want in order to achieve their goals?

The approach is: Do what it takes - to meet the goals of the person with the ABI
The priorities for services are:

• Generalist services where possible
• Disability services where necessary
• Specialist ABI services where necessary.