Future research which is needed in occupational therapy and brain injury

The concept of occupation can give a whole framework from which it is possible to do successful work in the field of brain injury and occupational therapy. Where the origin of dysfunction is identified as being occupation, it seems that occupation can also be used as a way out of the predicament. This insight is not in any way specific to brain injury and I have made the point here that neurology is only one among many things which needs to be taken into account when the focus is on the occupation. In writing about this particular young man I hope that it will be possible to see a shared human predicament, rather than a series of exotic problems caused by a severe head injury. I would strongly advocate that the debate about compensation for brain injury should take place within the context of the longterm outcomes for those people who are most affected by it, and not only from the point of view of the neurological prognosis or outcomes which are framed within a rehabilitation paradigm. The kind of information needed is not currently widely available. Within the individual communities of people who are affected by brain injury there are people who do know what has happened. Unfortunately these people tend to be swamped by the immediacy of the needs which they are responding to, they do not have the time to put together the larger picture. In the light of this information I wonder whether there might be some more justification for the kind of work which I have done with Barry. The answer to the question of where resources are best used in this new community of people, who largely exist because of improved neurosurgical techniques, is largely an ethical one.

I have touched on some of the ways in which it is possible to talk about occupation, but I am aware that this has been a very superficial skirmish in an area whose size I only became aware of as my work progressed. There is a huge amount of work to be done in explaining occupation in ways which make it available to the person trying to work in this way. It needs to be articulated because part of the problem has been caused by its invisibility to those concerned with the needs of the people who suffer in exactly the ways that I have described for Barry. My first recommendation would be to continue to explore ways of researching this kind of work. I do not think that this research will follow conventional lines, but it will need the work of artists and poets to really talk about occupation. There needs to be such a solid base of this work that no one is tempted to explain what they are doing in a bio/psycho/social framework, if this is not appropriate.

I have assumed the existence of someone called an occupation practitioner, because that described what I was doing in the course of my work and I know of others who are doing similar work which has never been acknowledged with any kind of title. Often these people are called carers, they might be volunteers, advocates, friends, mothers, or they may also be therapists. Whatever the title, the work has rarely been articulated coherently in a way which would allow one to pass it one to others or to begin to make a case for funding. This does not mean that the work has not been done. One of the things which really made my work possible was the fact that the family was in control of the funding. The kind of accountability that this gave is critical. I do not believe that this is an area where clinicians can work with their clients in a clinical setting for a few hours a week. If the family had control of the funding they would employ people who were really accountable to the person affected. I would therefore strongly recommend a model where funding was controlled by family rather than by clinicians.

One of the reasons that I have taken the trouble to articulate these stunning glimpses of the obvious is that I am involved in education. The process of education involves a different kind of understanding than that which is needed in occupation. There has to be some way of providing the experiences which enable the student to participate to such an extent that they too ‘know how to go on’ and, since this is an education system, I also have to know that they know. Providing education about occupation has involved me in an ongoing process of research, of which this thesis is a part. An immediate outcome of this work for me has been that, within the fieldwork paper that I coordinate, I have been able to put together a framework for teaching the students and an assessment which gives some assurance that they really have learned the things that I am trying to teach.

I think that the time has come for this way of working and if this is the case we need to provide education and support in ways which are adequate to the situation. This thesis makes some tentative steps towards articulating a framework which is one of the things which is necessary in the process of enabling it to happen.

Next page: Conclusion

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Abstract
Introduction
Methods and Ethics

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Brain damage stories-
Stories intro
Story 1 - The accident
Story 2 - The OT arrives
Story 3 - The CD rack
Story 4 - The troll
Story 5 - The door
Story 6 - At work
Story 7 - The letterbox
Story 8 - Employment

Occupation in Literature -
Literature intro
Occupation
Alienation
Being "well occupied"
The practitioner / OT
The person with brain injury

Discussion -
The need for occupation
Becoming well occupied
Facilitation
Ethical concerns
Occupation and neurology
Future research
Conclusion

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