- Disabilities & the Disabled
Self Management Skills in People With Acquired Brain Injury (ABI)
Self Management Skills in People With Acquired Brain Injury (ABI)
The principle of self-management theory applied to helping people with acquired brain injury (ABI) revolve around a holistic approach developing knowledge, skills and habits.
It is a 'Recovery' model emphasising the importance of people taking control and being active in overcoming the effects of their condition.
It is also a 'Self-Efficacy' Theory centering around not only the power to succeed in doing things but the belief in that power.
It is about the perceptions of a person, their confidence, self-esteem and will to succeed in certain situations.
Increasing the knowledge of problems and issues relating to the condition includes primarily an understanding of the effects of ABI and the challenges it will bring. People need to be made aware of the chances of recovery, partial or full, and be prepared to handle the symptoms and practical difficulties associated with recovery from the injury. By enhancing knowledge we reduce uncertainty by making something unknown into something known. Problems can be identified and understood as they are more tangible to the individual.
The development of skills ranges from the mundane to the complex whether they be new skills to be learned or old skills to be relearned. Practical tasks may need to be revisited as memory problems and physical disabilities can make them more difficult. People may even have to learn how to speak again after a period of aphasia in the more immediate post-injury period.
Habits are important in establishing a routine and a structure to daily life, especially since many people can suffer from non-organic psychological problems as a result of a physical brain injury. Depression can occur when people reflect on the loss of powers and abilities and look forward with little sense of hope or optimism. Stress and anxiety born out of a lack of self-confidence or self-esteem can be common, especially if the person feels more vulnerable and at risk of harm.
Therefore self-management teaches that ordinary daily routines can be beneficial in reinforcing a sense of self-esteem and self-worth. Taking pride in appearance, maintaining good personal hygiene and establishing a healthy lifestyle by eating well, exercising and avoiding abuse of alcohol or recreational drugs. Engaging with people to prevent social withdrawal and isolation, whether this be with family and friends or accessing social services which offers the opportunity to meet other people with the same problems.
Within the self-management approach as applied to ABI there are 5 areas identified as advantageous in recovery and development;
1. Symptom Education
2. Adaptive Strategies
3. Cognitive Re-Framing
4. Functional Problem Solving
A knowledge of the effects of an Acquired Brain Injury can help in reducing anxiety and fear as people better understand the root of the problems that they face.
Memory loss is the most pervasive difficulty that people face as the aftermath of a brain injury results in memory deficits in almost everyone to whatever degree.
People can also discover that they have lost the use of one or more of their senses depending on the location of the injury on the brain.
Visual and hearing problems can occur most notably but taste, touch and smell can also be affected. People may notice that they become more easily fatigued even when they have not been particularly active.
Personality changes can occur since an ABI can lead to someone becoming hyperactive, more impulsive, more aggressive and overall more disinhibited in their speech and behaviour. Damage to the intellectual areas of the brain can cause a lack of control over decision making and behaviour leading to actions which may appear inappropriate or irrational in social situations.
It is therefore of the utmost importance that people suffering from the effects of an ABI do not perceive themselves as abnormal in any way. Their seemingly strange outward behaviour should be seen as a direct consequence of the brain injury and not obviously motivated by themselves.
When a person understands and accepts this fact then this can help maintain their sense of self-identity as the person does not feel that they have lost their true selves. They realise they have not become someone different or someone strange but instead are able to divorce themselves from the injury as if it was a separate entity acting against their genuine wishes.
Social interaction can be a huge challenge to someone with ABI as they attempt to re-orientate themselves within society and around people. It takes education and understanding for others to comprehend the difficulties suffered by the person. For it is not only the person that has to adjust but society also.
ABI is described as an ‘Invisible’ disability because quite often it is not apparent or detectable by people.
Therefore, without this knowledge, they will not always make allowances for someone.
But when some symptoms are indeed visible they can also be misinterpreted by others.
This may result in negative attitudes against the person or wrongful attributions concerning their behaviour.
Brain injury can result in speech problems and an obvious difficulty in processing simple information. This can lead to others mistaking this for a learning disability in someone who actually has highly developed cognitive abilities.
"Whenever this happens, people treat me as if I'm inferior. They speak to me like I'm a child - or worse still talk over me to whoever I'm with as they think I can't understand. This makes me feel hideously embarrassed and hits my self confidence hard".
It is not surprising and entirely understandable that people with ABI can often feel frustration, anger and humiliation in these social encounters. In fact if someone speaks with a slow, slurred speech they can even be falsely perceived as being intoxicated. Therefore assertiveness training can prove beneficial to help people speak out when they feel they are being patronised or experiencing discrimination.
Without doubt the life-changing experience of suffering an ABI necessitates the need for adaptation both in the practical sense as well as the psychological. Compensatory strategies and specialised equipment can utilise the strengths of a person and enhance a feeling of independence.
People may be wheel-chair bound for the rest of their lives or perhaps require a walking stick to support themselves. Others may benefit from using memory aids to enhance recall or lite-writers and picture boards to help with language difficulties. If they are able to accept their weaknesses and are receptive to using whatever aids they need then this can help foster a positive outlook.
This includes being positive about accepting aid from others whether that be family, friends or professionals whilst not perceiving oneself as a helpless invalid, dependent on the care and succour of the able-bodied.
"Being around others in similar and often worse situations stopped me from feeling sorry for myself and taught me how to socially interact with others again."
This philosophical attitude, a non-defeatist determination and accepting limitations but building on strengths can enable someone to be optimistic about their life and their place in society.
An acceptance of disability comes to most people who have suffered an acquired brain injury.
When this acceptance eventually occurs can vary enormously between people as understandably many will refuse to recognise that things will never be the same again.
It is a massive challenge to overcome and it would be a natural reaction for people to become angry, bitter and consumed by self-pity.
Therefore a lot of help may be required by others to help someone come to terms with the devastating effects that an ABI can have on someone’s life.
At the professional level Cognitive Behavioural Therapy (CBT) by a Consultant Psychologist can help someone break down any negative schemas they may have about themselves. It can challenge assumptions, beliefs and perceptions by facilitating another way of thinking about oneself, about other people and about life.
"In my opinion, brain injury survivors are highly suggestible, especially from a family member or loved one. If you consistently tell them that they will recover and constantly tell them how well they are doing, then I think they will do much better than if a family member is negative."
By this process the person is encouraged to listen and learn from others but also more importantly to learn by themselves and from within themselves. Gathering strength from inner resources guided by professionals and supported by ‘significant others’ can help someone recover and thrive beyond the ABI.
Again, engendering a philosophical attitude can help rationalise the outlook as people try to ‘move on’ and put the past behind them. Perhaps reasoning that there are others much worse off and therefore being grateful for small mercies and the capabilities that they have.
Aside from the cognitive problems of beliefs and attitudes, there can also be damage to the executive functions of the brain which can result in difficulties in processing complex information. These ‘higher’ processes such as reasoning, conceptual understanding and inferential thinking are important elements in problem solving.
If a person with ABI has memory difficulties or attention deficits they may be unable to retain the necessary information to complete a task. Furthermore if information processing is disrupted or slowed by brain damage then they may not be able to make the associations and logical conclusions that are required in problem-solving situations.
"If you don't remember the multiplication tables, those simple math problems of the past are now big problems. If you don't remember how to cook, well... that has it's own problems, too."
New ways of learning may have to be incorporated as adaptive strategies are employed to compensate for limitations on previously straightforward tasks and natural abilities. However, throughout the process of teaching someone the benefits of self-management it is important to emphasise the strengths of a person, their abilities, talents and successes.
This can help to encourage positive thinking through the problems and challenges that lie in someone’s path to recovery.
Professional support from an Occupational Therapist can be very effective in helping someone adapt to new ways of approaching problems.
Engagement is emphasised strongly, particularly for those who are unemployed.
Engaging in activities by continuing a hobby or interest, by taking up new interests in order to have a focus and to provide a reason for getting up in the morning.
By meeting challenges, thinking through and completing tasks people with ABI can gather a great deal of self-belief and confidence in their problem-solving abilities.
Aligned with the need for structure and routines as well as a positive outlook the importance of setting goals is highlighted. Whether these be short-term or long-term targets, modest or ambitious, they can provide a focus and a motivating force to bring a sense of purpose to life.
Returning to employment can be fraught with difficulties and may even be impossible for many who have suffered very severe injuries. New careers and opportunities may have to be sought leading to the necessity for re-training and perhaps a personal re-evaluation of capabilities.
Of course, goals should be realistic and achievable with an acceptance and preparedness for setbacks allied to an honest appraisal of progress. Nevertheless people can dream and can follow those dreams if they ask themselves what is it that they want out of life and where do they want to be at some indeterminate point in the future.
"We all have a choice about how we live our lives. I intend to live mine to the full and I hope others with brain injury will do the same"