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?
Summary
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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