It strikes me that there can never be enough principles to guide us. However, I have never found anything that satisfied what I understand about brain injury. I have put together two sets of principles here. The first is from the perspective of the person with brain injury, the second is from a rehabilitation professional’s perspective. This is just a beginning. Have you anything to add?
Principles of living with brain injury from the perspective of someone with a brain injury
- You will be alienated. Don’t let anyone lay memory principles on you…..those memory conclusions just contribute to the alienation.
- You will have to receive energy from others for the rest of your life. You need to set up a situation where people are going to be responsive to you. You make them morally obliged to you. . You do this by taking responsibility for giving out energy, which you will then get back.
- You have no future with brain injury.
- You will never belong. You are on your own. You need to learn to handle isolation. You never receive the reassurance of being a member because that is a memory thing. You cannot think of two things at once, of belonging and being here.
- Go with the flow – because if you don’t go with the flow you get mood swings and all the classic things that go with it. It is about accepting that you are buggered then you learn how to handle the new brain states. At first you are angry, frustrated and in a state. It is only when you have learned to live with a new brain state….you come to terms with.
(from a conversation with William Fairbank)
Principles of brain injury from a rehabilitation perspective
1.The clinican must begin with patient’s subjective or phenomenological experience to reduce their frustrations and confusion in order to engage them in the rehabilitation process.
2. The Patient’s symptom picture is a mixture of premorbid cognitive and personality characteristics as well as neuropsychological changes directly associated with brain pathology.
3.Rehabilitation focuses on both remedation and the social situation.
4.Rehabilitation helps patients’ observe their behaviour and thereby teaches them about the direct and indirect effects of brain injury. This may help patients avoid destructive choices and better manage their catastrophic reactions.
5.Failure to study the intimate interaction of cognition and personality leads to an inadequate understanding of the issues
6.Little is known about how to retrain a brain dysfunctional patient cognitively, because the nature of higher cerebral functions is not fully understood. General guidelines for cognitive remediation, however, can be specified
7.Psychotherapeutic interventions are often an important part of rehabilitation because they help patient and families deal with their personal losses.
8. Working with brain dysfunctional patients produces affect reactions in both the patient’s family and the rehabilitation staff. Appropriate management of these reactions facilitates the rehabilitation and adaptive process.
9.Each rehabilitation program is a dynamic entity. It is either in a state of development or decline. Ongoing scientific investigation helps the team learn from their successes and failures and is needed to maintain a dynamic, creative rehabilitation effort.
10.Failure to identity which patients can and cannot be helped by different rehabilitation approaches creates a lack of credibility of the field.
11. Disturbances in self-awareness after brain injury is often poorly understood and mis- managed.
12. Competent patient management and planning innovative rehab programs depend on understanding mechanisms of recovery and deterioration of direct and indirect symptoms after brain injury.
13. The rehab of patients with higher cerebral deficits requires both scientific and phenomenological approaches. Both are necessary to maximise recovery and adaptation to the effects of brain injury.
Adapted from, Prigatano, G. P. (1999). Principles of neuropsychological rehabilitation. New York, Oxford University Press.