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Severe brain injury referral for occupational therapy

This web site arose from a particular situation which I found myself in a few years ago. I had been working as an Occupational Therapist and had just arrived in my first teaching position, specialising in neurorehabilitation on one hand, and involved with research and teaching on papers which were completely devoted to occupation. This latter aspect I refer to as the ‘occupation knowledge stream’ and the work which has been done to develop these papers has strongly influenced the thoughts which I put down here.

As I prepared materials to teach final year under graduates about neurorehabilitation I became increasingly dismayed by the treatment models available to Occupational Therapists. All of our knowledge base seemed to be borrowed from other professions and I had a memorable conversation with a neuropsychologist at this time who said ‘Occupational Therapists really need to find their own area of expertise’. I was extremely frustrated to find myself teaching what seemed to be a watered down version of aspects of physiotherapy and neuropsychology to my students and I was not surprised with feedback from new graduates which suggested that they were very lacking in confidence when working in this area.

I was particularly concerned about the lack of focus on skills that would be useful several years after the initial head injury. What do you do with and for someone who is no longer at the acute stage of head injury? It was a question which was at the heart of my practice as an Occupational Therapist because of the people that I had met along the way. I had experience in working with people for whom I seemed to have solved some problems only to find that the whole question of ‘what now?’ was the most pressing and the most intractable one of all.

For instance, there was Peter. I was working on the west coast of Scotland when I got a routine referral for a phone cord extension. It was fairly far down on my list of priorities and when I met him I was surprised to find a man with severe cognitive, motor and behaviour problems which had resulted from a severe brain injury number of years before. At the stage that I met him he had absolutely no support in the community. On the contrary he was extremely vulnerable to attack and at the time I met him, he lived in fear in a first floor flat, with no means of getting down the stairs. I worked long and hard to get him re-housed, and succeeded in doing so. However, I had no answers for what he should do now that he had a new house, and he went rapidly down hill. He had nothing to do and was completely isolated. His death, which came after just two years, was etched in my memory. I met many more such people in the course of my practice, and always with the same feeling of not knowing exactly what I could offer. In each case I could excuse myself by saying that it was the pressure of workload, and maybe if I had more time I could offer something. But what?


This was the background to the referral which I got for Barry. He was a young man of 20 at this time and the neuropsychologist's report gives some idea of the severity of his head injury.

January 1993 : Mr Williams was admitted to Rathnew Hospital in a deeply unconscious state after a motorcycle accident in 27 December 1991. At admission his Glasgow Coma score was 5/15 and a CT head scan showed brain swelling and diffuse brain injury with numerous small haemorrhages in the right hemisphere and in the left occipital lobe. He remained unconscious until about the 20th January. …On 12th February 1992 he uttered his first words. A CT scan in February 1992 showed mild cortical atrophy and this picture has been present in subsequent scans. He received a very severe closed head injury as indicated by the duration of coma and his period of post-traumatic amnesia which was estimated by clinical staff as up to 3 months. By May Mr Williams was independent in self cares and was discharged home with continuation of physio-, speech-, and occupational therapy regimes continuing in Rathnew.

It appears that spontaneous recovery of neurological, cognitive and psychosocial functions is complete. Mr Williams has a range of residual disabilities that make it very doubtful that he will compete for open employment.

Occupational therapy assessment of severe brain injry

It was unusual to get a referral to a teaching department, and it suggested immediately that this young man and his severe brain injury did not fit anywhere else in the system. This was indeed the case. Here was a young man who had been offered everything that the system could offer by way of rehabilitation, yet he still had a predicament of not knowing what to do. I was engaged to assess him for a specially tailored art course at the Polytechnic. The course had already been well designed by the Principal of the college, but I was being asked to translate the outcomes of the course into remedial terms. I went up to meet him at the Polytechnic and was surprised to meet a lovely young man, with a delightful sense of humour, who seemed a bit bemused but was not at all what I might have expected considering what I knew about the severity of this injury. His neuropsychologist penned this picture of his social presentation:

January 1994: Mr Williams presents as a tidily, casually dressed unimpaired looking young man, with long hair and a small goatee beard. He smokes roll your own cigarettes and appears to have become addicted to nicotine, self administered in this form. The content of his discussion is usually circumstantial and he is verbally fluent in one to one conversation, provided he does not have to deal with questions requiring more than a brief and obvious answer. Searching questions normally generate an extensive delay in his responding. The usual content of his conversation is informal and self referential involving reports of his current enjoyable activities. Impairments in his social functioning are not readily apparent when he is conversing in this mode but these become obvious under more demanding conditions.

Rehabilitation by the occupational therapist in severe brain injury

As I began to engage in the process of assessment I quickly realised that funding would only be allocated on the basis of rehabilitation goals. The underlying premise was that rehabilitation would only be funded if it was likely to result in clear improvement in cognitive or social skills for Barry. I was uneasy about this, but wrote the occupational therapy report which I was qualified to write. This was not an ordinary case of severe brain injury because Barry was supported by an intelligent and well-resourced family who examined every word that was written about him in the light of the reality that they were experiencing. I soon found that my report was in the middle of a controversy between the insurance corporation and the family about whether or not Barry was capable of improvement.

It was my introduction to a dilemma which I have become very familiar with as time has gone by. To explain it to my students I ask them to envisage it as a ‘T’ diagram. The vertical axis represents ‘rehabilitation’ and its focus is the problem or particular deficit caused by the brain injury. It aims to change the person by focusing on the problem. It is the work that is done with head injured clients in the first couple of years post injury to teach them to walk and talk, dress and go shopping. It includes all the work that we do in helping to improve concentration and memory, and also the work that we do in altering the environment so that they can have access to it. It has remedial and ergonomic strands within and it draws heavily on bio/psycho/social academic disciplines to provide a theory base for its practice. We identify ourselves as ‘therapists’ when we are in this mode and measurement is a significant part of what we do. The significance of the vertical axis is that it brings people to the point where they are ready to begin to engage in activity.

The horizontal axis of the ‘T’, on the other hand, represents the ongoing involvement that people have in everyday life. The emphasis here is not on changing people, or in identifying their deficits, but in helping them to engage in doing things. The focus is on the activity, while the problems are simply factors to be taken into account. This shift from a focus on the individual to a focus on the activity is effectively a shift in paradigm. The kinds of things done on this horizontal axis cannot meaningfully be described in terms of a bio/psycho/social framework, but needs to be described in everyday language. The practitioner here ‘gives people things to do’ and they are usually very clear that they are not ‘therapists’. They are more likely to see themselves as facilitators or practitioners and what they do is not aimed at ‘curing’ anyone, but at meeting an everyday need to do things. Measurement is not a meaningful part of this approach and it needs to be described in terms of going for a picnic or making a beautiful print. Achievement and engagement must be described within the terms of the activity itself. You recognise the need for this approach when someone is alienated or bored and has no resources to find their way out of the predicament. There are many reasons for falling into this state, and head injury is one of them.

The horizontal and the vertical. All the work that I had been employed to do as an occupational therapist seemed to belong to the vertical axis. Certainly the materials that I was using to teach rehabilitation to the final year occupational therapy students belonged firmly to the vertical axis. I became more relaxed as I realised that I could focus on this axis and the horizontal axis would be dealt with appropriately in the ‘occupation knowledge stream’. I no longer felt so obsessed with providing an answer to the predicament of the long term effects of brain injury in the short period of time when I was teaching final year students. It was a completely different kind of question and the response to it was being taught in a completely different kind of way. As I became more involved in this aspect I became increasingly fascinated by the kind of literature which was being used to explain and describe the horizontal axis.

The literature used for this thesis is therefore drawn from those works that can tell me about the kinds of things that people do. It supposes that those with brain injury have more in common with the rest of us than not, and this commonality is particularly explored in relationship to work. It will be obvious therefore that the literature will not draw on work about brain injury specifically, since this highlights a ‘difference’ which is not helpful when the aim is to bring about full participation. This is not for one moment to suggest that the brain injury is disregarded as insignificant. Anyone who works with brain injury knows that this is impossible.

Funding for severe brain injury rehabilitation

The world of funding for rehabiliation for severe brain injury, back in 1995 when I started this work, existed only on the vertical axis of the ‘T’, the possibility of a horizontal axis seemed to be something that only family members and those living with the effects of brain injury could easily identify. My first contact with Barry highlighted the issue for me. I was caught in a predicament of making a case for funding, without challenging the basis for that funding. However Barry’s mother, Margaret, and his advocate, Carla, did know what his needs were. His family knew because they were living with him, and Carla because she had already gone through all this with her sister, who had a severe brain injury a few years previously. The battle was over Barry’s need for support was fought in a series of meetings and letters one of which I quote from here.

"Brain injury rehabilitation is primarily about providing a system of individualised support and intervention which ameliorates and compensates for the persons deficits or losses which developing and enhancing the persons remaining abilities and strengths. Brain injury rehabilitation has nothing to do with the restoration or fixing of injured brain. This type of rehabilitation is focused on adjustment, acceptance of painful limitations through the positive use of systems of personal support, training and environmental enhancement The corporation continues to persist in its belief that Barry is capable of some level of independence - perverts the flexible and discretionary ‘Complex Personal Injury’ process by imposing ‘Training for Independent Living’ timeframes - refusing to acknowledge Barry’s need for assistance, care and support by retitling his assistants as coaches to meet the requirements of performance, facile criteria / goals and implied reduction in need and therefore cost." (Carla Simmons 1998 letter to the insurance corporation).

They fought very hard and won the case to get ongoing funding which was controlled by the family. This meant that they were no longer tied to meaningless round of ‘rehabilitation’ goals in order to maintain the flow of funding. It put them in the position of being able to employ a coordinator, which they believed was a key part of the package for Barry, and was the position in which I was employed at the beginning of 1998.

Prognosis following severe brain injury

Barry at this point was still deeply unhappy, alienated and unmotivated. He felt as though his brain was completely blank and that he was a spectator in a life which was pointless. He was at some considerable risk of suicide, if he had been able to formulate and carry out a plan, which he was not. There was nobody who really knew what to do with him beyond taking him on a round of leisure activities which left him in the very same place. Any vision which was projected for his life seemed to always trail off in sadness and despair. There was never a young man who had so many people care for him, with so little idea of what to do for him. The prognosis did not look good for him and this is what his neuropsychologist said at the time I first met Barry in 1995.

It seems unlikely that Mr Williams will have the motivation necessary to sustain him through the challenges of further vocational achievement or the tedium of a manual process orientated occupation, even if his impaired energy levels, excessive proneness to fatigue and almost complete lack of stamina allowed him the opportunity to fill such a vocational role. The motivational threshold for activities must be very low unless these are in the realm of attractive recreational pursuits. The focus should be on increasing his capacity to live independently so that he no longer requires close supervision and frequent prompting.

Occupational therapy perspectives on severe brain injury

The result of all the assessments and the fight which was put up by the family , was that Barry was granted 24-hour care from the middle of 1997 and I was employed as a coordinator at the beginning of 1998. Although I was not sure of what exactly I was going to do, I was convinced that this was the opportunity to create a really good programme, and to engage in the best possible practice in occupational therapy, which I had always wanted. This thesis is therefore an attempt to describe how Barry began to find his way in life and what I did to enable that process. I started off as a facilitator and gradually came to the point where I was able to coordinate the process in a meaningful way, because of my participation in it. In doing so I realised the importance of allowing my thinking to be shaped by his occupational needs, rather than the myriad of problems which he so patently has. I came to recognise the commitment that is needed to make this approach work in practice, and to respect and listen to the family whose commitment has not been a matter of choice.

Working with someone with a brain injury is always complex, even if the stories which I tell make it sound simple. There were a large number of factors which I needed to take into account in my work, in order to ensure that the full ambience of the activity could be experienced by Barry. These include an understanding of the information included in the numerous reports written about him, an understanding of the processes involved in funding which had been obtained and a working knowledge of all aspects of the system which had been put in place to support him. In a sense there this work is written especially for those who already have some understanding of the real impact of brain injury, who can read the stories with that underlying understanding of what has been taken into account to make them come about.

It will become clear that although I am trained as an occupational therapist that my target audience is not specifically made up of other occupational therapists, although it may include them. This leads me to make a note of the reasons why I have not decided to include this within an occupational therapy discourse. I believe that the dominant paradigm in occupational therapy is therapy and I was therefore unable to build from what I encountered within the professional body of literature, since I am using an occupation frame of reference. It would take a far larger piece of work than this one to trace the history of the way that occupation has been dealt with in the profession and to cover all the current debate which is going on about it, both within the profession and in the field of occupational science. I must ask the reader to have patience with my decision not to include types of analysis which I did not find useful in my work.

Although I am not able to outline the whole history of occupation within the profession, there were particular tools which I used along the way, which I had cause to discard and it is possible to give my reasons for this. I wrote my first report about the protagonist based on the Model of Human Occupation (Kielhofner 1985), which is a generic model used by occupational therapists. This guided me in focussing on his problems as they impinged on his ‘volition’ and ‘habituation’ subsystems and it gave a framework for the report. However, the model does not aim to provide specific approaches for intervention, except to suggest that there should be a focus maintained on occupation. There have been occasional case studies where this model is used with clients who have cognitive and perceptual problems (DePoy and Burke 1992), but they did not maintain the focus on occupation which I was looking for.

Within the Model of Human Occupation, the Assessment of Motor Skills (Fisher 1992) can be used to provide information on the client’s performance of particular functional tasks. The Assessment of Motor Skills (AMPS) was my assessment of choice when initially looking at any client at this time and it remains a extremely useful assessment in my mind. What I particularly appreciate about it is the acuteness it brings to bear in the observation of very small everyday tasks. I found that this elucidated the motor and cognitive problems which were referred to in the reports of the other therapists. The intervention suggested by Fisher (1997) is essentially adaptive, by which is meant the “provision of adapted equipment, the teaching of alternative or compensatory techniques, or the modification of physical or social environments”. Essentially it gave some guidance about the particular places where the client was likely to need support. The provision of this support was an essential first step in what I was to try to do, but it was just the first step. In this sense the AMPS and the adaptive approach which is espouses remains on the vertical axis of the ‘T’ diagram which I have outlined above.

The Cognitive Disabilities Model (Allen 1985) also belongs to an adaptive framework, where the focus is on environmental modification and strengthening of residual abilities. It was developed originally with clients who experienced mental health problems, but it is also used occasionally by therapists in the assessment and treatment of clients with brain injury. I used the Claudia Allen Routine Task Inventory with my ‘client’ at the point when he was moving into the community and I found it helpful as a guide to suggest how much support he would need there. I include part of this report (Appendix 1) and even at this distance I am gratified to find that much of what I said was a relatively accurate report of what level of support his carers would have to put in to make him safe in his own house. I particularly liked this approach because of its acceptance of the deficits that were part of a brain injury. The intervention gives suggestions of how to support the client at the cognitive level at which they are functioning and this again is a very important first step in the approach which I was attempting to use. Probably of all the models that I have considered the Claudia Allen had the most to offer in terms of giving some concrete ideas for intervention. However, it still did not take me beyond the first step.

The use of a client centred approach, and in particular, the Canadian Occupational Performance Measure (Law et al 1994) is often used as way of prioritising a problem list when planning intervention. This is administered as an interview and has 10 point scoring scales for importance, performance and satisfaction. The client can of course in be considered in the widest possible sense, and the family may also be used to assist in negotiating priorities. I used the the Canadian Occupational Performance Measure (COPM) at an early stage in my assessment and it gave a useful demonstration of the lack of insight which the client had in regard to his problems. It also gave me some more understanding of how some particular problems were affecting the family, but I remained convinced that the approach that I was going to use was not going to be problem based and I did not pursue this approach.

The occupational therapist working in the field of brain injury will point out many other remedial and adaptive approaches to intervention which have been developed specifically for this area and which I seem to have ignored: the Quadrophonic Approach (Abreu 1998); the Dynamic Interaction Approach (Toglia 1989); the Retraining Approach (Averbuch and Katz 1992); the Neurofunctional Approach (Giles and Wilson 1992); the Group Work Model (Sohlberg and Mateer 1989). In response, I can only say that I have considered most of these approaches at one stage or another and that my understanding of brain injury has been informed by the work of these therapists. My understanding of brain injury has also been informed by the work of occupational therapists: Arnadottir (1996), Unsworth (1999), Grieve (1993) and neuropsychologists: Lezak (1995), Luria (1973), among others. I provide this litany to indicate to the reader that I do understand something of the complexity of brain injury. The fact that I do not focus on the neuropsychological facts of the brain injury at all times, does not mean that I am not aware of these facts. However, I have to reiterate that the work which I have done does not fall under any of these frameworks and I believed that to draw on them directly would confuse the overall thesis.

This thesis has been written at the end of the first two years of what I now envisage as work which does not necessarily have an end point that I can recognise right now. If I am writing it for anyone in particular, it is for the person that I was two years ago desperately wishing that there was some ‘expert’ out there who could tell me what to do. At that time it seemed that my position was unique in my country in terms of the published literature, and that it also seemed to be unique in actual fact. There did not seem to be any other professionals appointed in the kind of position in which I was in. Time has gone by and I know now that I am not alone in doing this kind of work. It is done constantly by families and carers, and increasingly by therapists who are trying to find an alternative to the rehabilitation models that are available. As an educator I am aiming this work particularly at my stage two students, who are sent out on placement with the expectation that they will use this framework. As a practitioner I am aiming it at other practitioners who are trying to work this way. As someone who has been touched by the reality of brain injury, I aim it at the family and advocates of those people with brain injury who are trying to find their way forward. As a community member, I am aiming it at the funders, who are ultimately responsible to me and the rest of the community, to help them find ways to use the money we give them wisely.


Research questions for a thesis about severe brain injury

The work which I describe myself doing has always been there, it is not a new need that has suddenly appeared from nowhere. To the funders and therapists it has largely been invisible. However, the fact that it is being articulated now suggests that it is a need which is no longer invisible. Generally, when there has been satisfactory outcomes for the person with brain injury it is because of their family and so I have to assume that what I am describing here would normally be done in some way by the community of the person affected. This may be the ideal, but it is not always possible. It is certainly not a specifically occupational therapy role, and this opens up several questions which are worth exploring. The research questions which I hope to have answered by the end of this work are:

1. How do you know how to go on?

- As a client with an occupational predicament

- As a practitioner with an occupational focus.

2. Who is the occupation practitioner?

3. Who is the occupation client?

And what do they do?

4. Will an investigation of occupation be more helpful than an investigation of neurology for this case?


This work started because I accepted a referral to work with a young man with a severe brain injury, who had been granted a 24 hour care package. He had come to the end of the rehabilitation process and nobody knew what to do with him, least of all himself. I recognised this as a real predicament and I felt that, because of a combination of circumstances, I had the resources to meet the particular need which was being expressed. The work of this thesis is to find some way of explaining what I did.

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