This chapter provides some conceptual and practical resources for two main groups of practitioners working with people who have acquired brain injury (ABI):
1 Cognitive therapists who would not consider themselves specialists in the area of neuropsychology or rehabilitation
2 Rehabilitation professionals who wish to improve their application of cognitive therapy, especially behavioural experiments, to this group of patients
Behavioural experiments are particularly appropriate for these patients, whose ability to engage with both the theory underpinning cognitive therapy and the intellectual demands of the therapy sessions themselves, is limited by neuropsychological impairment (Hibbard et al. 1990; Whitehouse 1994; Kinney 2001). Moreover, it is not necessary to be an expert in the field of neuropsychology to apply cognitive therapy techniques, including behavioural experiments, to the benefit of people with ABI.
This chapter focuses on the specific issues of ABI (a subgroup within the more general class of organic brain pathology). The key characteristics of ABI are:
◆ A sudden-onset cerebral event in adulthood in the context of previously normal brain function
◆ Psychological, and often physical, impairment of varying type and degree
◆ A non-progressive course
◆ An initial relatively rapid recovery followed by a slower phase, with full recovery of past function very rarely achieved
(p. 332) The most common causes of ABI are closed head injury (due to road traffic accidents, assaults, or falls); stroke; subarachnoid haemorrhage; cerebral hypoxia (secondary to prolonged cardiac arrest, near drowning, hypoglycaemia, carbon monoxide poisoning); cerebral infections (meningitis, encephalitis), and tumours. Brain injury can thus affect anyone, at any age.
Doing psychological work with people who have organic brain injury or disease is often seen as a highly specialist field, which entails sophisticated knowledge of neuropsychology, and is dominated by psychometric assessment. Indeed, the presence of organic brain pathology is still sometimes given as a reason for not applying psychological treatment approaches, including cognitive therapy. One, usually unstated, reason for this may be the assumption that if psychological symptoms are ‘caused’ by brain pathology rather than by psychological mechanisms, then the treatment approach must primarily address the brain pathology, and a psychological approach may be both irrelevant and ineffectual.
In fact, the situation is at once more simple and more complex than this. Psychological processes (e.g. grief) remain highly important even in the context of abnormal brain function, and deserve to be addressed directly in their own right. However, it is also true that some of the specific neuropsychological impairments resulting from brain injury (e.g. memory problems and concrete thinking) can present specific challenges to the delivery of cognitive therapy, and these need to be addressed thoughtfully and creatively. So, while the situation of people with organic brain pathology is more complex than that of people without organic brain pathology, and formulating problems may make special demands of the therapist, the basic cognitive model (Beck 1976) and techniques are no different from those applied to any other group.
The main psychological issues facing people with ABI are essentially threat, loss, and restriction in multiple life domains, and a reduced psychological capacity to cope with these because the central cognitive processor has itself been affected.
Brain injury can have a direct effect on physical appearance, sensorimotor skills, higher cognition, emotional experience and control, and communication ability. These effects combine to underpin behavioural changes (e.g. forgetfulness, unsteady and clumsy walking pattern, increased emotionalism, and loss of independence in personal care). These in turn can result in dramatic changes to roles and relationships (e.g. reduced employability or marital and family breakdown). The person with ABI is often struggling with a very difficult psychosocial situation but is not able to bring previous coping strategies (p. 333) (such as physical activity, spending time alone, reflection, problem solving, talking to others) into play because these coping strategies have themselves been compromised by the brain injury.
Any psychological therapeutic approach to the problems of people with brain injury must, therefore, take into account:
◆ Premorbid core beliefs, underlying assumptions, aspirations, and preferred coping style (which may have been highly functional and may still be assets)
◆ The circumstances of the injury, which may in itself have been psychologically traumatic
◆ Current psychosocial situation
◆ Current physical and psychological impairments and disabilities
◆ Current appraisals
The levels of psychological distress in people with brain injury (and their families) are high (Gainotti 1993), although identifying formal psychiatric disorder in this population is fraught with methodological problems (see, for example, House 1992). The degree of distress expressed may not appear excessive in view of the person’s circumstances. It may be based on accurate appraisal. For instance, there may be risk of further brain injury from recurrent strokes or hydrocephalus or epilepsy, which makes going out or engaging in physically demanding activities or choosing to live alone, genuinely risky; or poor balance may make mixing in crowded situations likely to result in a fall; or there may be a good deal of real social rejection related to attitudes to disabled people; or the person may have lost, overnight, the chance of realizing cherished career ambitions, financial security, and key relationships.
This, at first sight, presents a difficulty to the cognitive therapist who is used to challenging the patient’s ‘catastrophic’ interpretations of, for instance, ambiguous bodily sensations or the social behaviour of others. A cognitive approach is nevertheless still applicable in these situations, but some inventiveness is required. The focus of intervention is less on testing out the situation itself than reflecting on the relative costs and benefits of the strategies the patient is using to manage it, such as persistent avoidance or defensive aggression (see the experiments that follow for further details of this approach).
Having noted that the situation of people with brain injury is often dire, and that their reactions are often understandable, it is also important to point out that they can make errors in appraising their situation and respond in ways that appear excessive or inappropriate. This may occur for all the reasons that are familiar to the mental health practitioner. However, faulty appraisal may also occur because of specific cognitive deficits. For instance, a man with a memory problem may have the cognition, ‘My girlfriend hasn’t been to visit me—she must have dumped me’, purely because he does not (p. 334) recall the visits she actually made; or a woman with visual perceptual problems may start to avoid car travel because she thinks, ‘It’s not safe to travel with my husband—he’s a bad driver’, based on her distorted experience of speed and the proximity of other vehicles.
Key cognitive constructs
ABI constitutes a major change to a past fundamental schema—the old or normal self (McGrath and Adams 1999). Thus, a lot of the concerns of the brain-injured person relate to a basic longing to return to this state, to re-establish a sense of personal identity. Personal identity is a highly complex notion, varying between individuals. Yet it is possible to identify common themes, relating to its maintenance or re-establishment, that preoccupy people with ABI. The first is a desire to be healthy again and to avoid relapse—to be rid of, or at least to be able to control, symptoms (see Experiments 16.1 and 16.2). A second theme is the desire to return to previous levels of function—the ability to carry out meaningful tasks (see Experiments 16.3–16.5). A third is the desire to be acceptable to other people and to manage relationships (see Experiments 16.6 and 16.7). These latter two themes relate to the desire to be ‘normal’ as perceived by self and others.
People with ABI respond to difficulties with symptoms, level of function, or social relationships in a number of characteristic ways. Some deny the extent of their problems in these areas. This may itself arise from a specific type of organically based cognitive deficit—anosognosia (Prigatano and Schacter 1991) (see Experiment 16.4), or it may be a purely psychological response (see Experiment 16.5). Others openly express enormous fear at the prospect of not being ‘normal’, and this means that dysfunctional approach behaviour (running before they can walk, taking on tasks that are beyond them) is at least as common as dysfunctional avoidance behaviour (see Experiment 16.1). These people need to be protected from demoralizing failure experiences, and instructed to slow down and reduce their expectations. This sets the tone of many behavioural experiments. Others have given up hope of being ‘normal’, and present with more depressive concerns, often focusing on issues of low self-esteem and impoverished personal identity (see Experiment 16.6).
Whether working at the level of automatic thoughts, underlying assumptions, or core beliefs, a key task of the therapist should be actively to present the patient with the possibility that life is worth living in the context of lost cognitive and physical function. This may challenge strongly held core beliefs and values (Prigatano 1991), and makes existential demands of the therapist as well as the patient.
(p. 335) Behavioural experiments
◆ Beliefs about symptoms
◆ Beliefs about functional abilities
◆ Beliefs about social situations
Beliefs about symptoms
Experiment 16.1: how to manage symptoms
Problem Brian, a 49-year-old computer programmer with an army background, had a subarachnoid haemorrhage while out jogging. He made a good physical recovery over several months, but remained prone to cognitive fatigue. He returned to part-time work, but became distressed as he found himself less and less able to cope with work demands. In the past he had coped with adversity by pushing himself and trying harder. This fitted in well with the army culture and had usually resulted in him successfully overcoming setbacks. However, in his present circumstances it led to a vicious cycle in which he became more fatigued and frustrated. The therapist advised him to pace his activity and take small breaks during the working day, but he was unconvinced that this would be effective and described the strategy as ‘throwing in the towel’.
Target cognitions More effort equals more success. No pain, no gain. If I don’t keep pushing myself then I’m a defeatist. Double the problem, double the effort.
Alternative perspective Success doesn’t necessarily mean doing everything I did before the brain haemorrhage. I do have some limitations now, and trying harder can make things worse.
(p. 336) Prediction I will get more effective work done if I use my strategy of trying harder. I will get less effective work done if I try taking small breaks as advised.
Operationalizing the prediction Measure the actual time spent on task and amount of effective work under two conditions (see details of experiment).
Preparation for the experiment Didactic education about the cognitive effects of brain injury and socratic dialogue about acceptance of his limitations had little direct effect. However, it was sufficient to lead him to agree to conduct the behavioural experiment.
Experiment Though highly sceptical, Brian measured the amount of time spent effectively on tasks for two weeks under each of two conditions. The first used his preferred strategy of just trying harder until he was so tired that he had to stop work for a very long rest or go home. The second involved him taking a 10-minute break every hour whether he felt like it or not.
Results The records indicated that the second strategy was associated with significantly more effective work.
Reflection Brian reflected that he had begun to see winning in terms of ‘being maximally effective’, rather than about putting in maximum active effort; disciplining himself to rest could be seen as a type of effort in itself. ‘I can only do my best and that may involve doing things differently from before.’
Tips This approach can be used with patients who have to manage fatigue arising from a variety of causes including multiple sclerosis, anxiety or depression, and chronic fatigue syndrome.
Experiment 16.2: origin of symptoms
Problem Daniel was recovering from a severe head injury, which had left him with some problems with memory and concrete thinking and marked problems with speed of information processing. He had returned to live at home with his wife and two small children. He went back to work on reduced duties from Monday to Thursday, and was at home with the children on Fridays. He started to develop severe headaches and feelings of depersonalization and derealization, which got worse as the week progressed.
Target cognitions The headaches are caused by a late complication of the brain injury, perhaps a bleed inside the brain. The periods of depersonalization are post-traumatic epileptic seizures.
Alternative perspective (suggested by therapist) My cognitive stamina is reduced. When there are too many cognitive and physical demands, my brain (p. 337) becomes tired. The headaches and other symptoms may be a signal that I am asking too much of myself at this stage in my recovery.
Prediction If the target belief is true then reducing the cognitive demands made on me should make no difference. If the alternative belief is true, then it will lead to a reduction in my symptoms.
Operationalizing the prediction The weekly routine, including work pattern, was changed to include more cognitive rest.
Preparation for the experiment Close liaison with the medical team was important to establish that a direct physical cause for the symptoms was less likely than the target belief.
Experiment With the agreement of his employers, Daniel worked Monday, Tuesday, Thursday, and Friday. This built in a mid-week break from work so that he could spend time alone on a day that the children were out at nursery.
Results There was an almost immediate cessation of all symptoms.
Reflection Daniel expressed relief that the symptoms did not seem to be due to life-threatening complications of brain injury. He reflected on the unexpectedly close relationship between cognitive deficits and physical symptoms, and described an increased sense of control over his own life and health. On the other hand, the more leisurely weekly timetable was a source of some frustration, as he did not see this level of activity as congruent with his view of himself.
Further work Daniel and his wife were able to use the principles from this experiment to monitor the course of recovery, and to pace the resumption of activities, using the return of these symptoms as an indication of situations in which he was functioning at his current limits.
Tips This approach can also be used with symptoms of irritability, anxiety, and panic, where brain injured patients may fear that they are ‘going mad’ or undergoing permanent ‘personality change’. Often such symptoms are responses to situational demands in the context of cognitive impairment.
Beliefs about functional abilities
Experiment 16.3: overpessimistic beliefs
Problem John had a stroke, which left him with a paralysed left arm and weak left leg. The sensation on the left side of his body was generally reduced, so that he could not feel the ground under his left foot. His balance was poor. He was learning to walk again with a physiotherapist. Even though he was desperately keen to be able to walk independently, he became very frightened in the (p. 338) physiotherapy sessions, and avoided any exercises that required him to bear weight on his left side.
Target cognitions My balance is very poor, and my brain has been damaged and is vulnerable. I am likely to fall over. If I fall I will tip over onto my head and be unable to protect it. My brain, which is already fragile, will be hurt further. Once I have fallen I won’t be able to move, so I will be lying there injured and helpless on the ground. (Core belief: any hope of recovery and getting back to normal will be dashed.)
Alternative perspective My balance, though not normal, is improving. Although my left foot and leg are no longer able to feel the floor, I am safer than I feel. My likelihood of falling is low, though not zero. Having had a stroke does not make your brain more vulnerable to the effects of impact. Falling is not likely to damage my head. I can control how I fall and protect myself. I can get up if I fall. Taking risks is part of the process of getting better. If I don’t take risks, I will ensure my physical safety but I will not make the progress that is so important to me.
Predictions If the target beliefs are true then (a) I will regularly fall in physiotherapy sessions when I practise walking, (b) it will not be possible for me to learn to fall ‘safely’ and to get up from the ground, and (c) I would hear or find out about cases of people whose heads have been damaged by falling after stroke.
Operationalizing the predictions Observational data were collected from physiotherapy sessions. John was given information about the actual vulnerability of the brain. Controlled falling was incorporated into the physiotherapy programme.
Preparation for the experiment The therapist endorsed those aspects of John’s perceptions that were accurate. His experience needed to be validated before the dysfunctional components were challenged, particularly because the difference between the situations of John and the fit, able-bodied therapist was considerable. It was acknowledged that he was indeed more vulnerable, weaker, with poorer balance than before the injury. With John’s permission, the physiotherapist was made aware of the degree of fear involved. She was then able to approach the experiment not merely as a motor skill training exercise, but with full understanding of its psychological implications.
Experiment John recorded in a diary the occasions on which he actually fell, or felt that he was going to fall in physiotherapy. Information was given to him via medical textbooks and Stroke Association literature. John was encouraged to question his consultant neurologist about the risk to his head. He was also encouraged to discuss his fear of falling with other patients who were more (p. 339) advanced in physiotherapy, and who could provide an incentive and role model for him. Getting up from the floor, and then controlled falling was practised. Initially, the cognitive therapist modelled the technique with the physiotherapist.
Results John found that the probability of falling in physiotherapy was zero, and that he could steady himself and avoid falling more successfully than he had thought. He was reassured by the explicit discussion of the actual effects of the stroke on his brain, and met other stroke survivors who had experienced falls with no long-term ill effects (that is, his health beliefs were modified). He noted an improvement in his competence through the achievement of increasingly ambitious physiotherapy goals. He learned to fall in a controlled way and to get up from the floor.
Reflection John talked in terms of gaining a relationship of trust with his physiotherapist, which enabled him to attempt risky activities, and beginning to know and to trust his own body again, while understanding its limitations. He described feeling stronger and less vulnerable, so that the degree of perceived risk was reduced.
Further work Similar experiments to do with safe walking, falling, and getting up can be attempted, in a graduated way, in other environments such as the ward, the patient’s home, and on the street. In some ways this is part of normal physical rehabilitation—the rehabilitation programme can be turned into a series of behavioural experiments aimed at increasing confidence, the pace determined by the degree of anxiety involved.
Tips Falls and injury cannot be eliminated; anyway, this is not desirable. The aim is not for patients to see life as risk-free, but to tolerate a certain amount of increased risk in their lives. When a fall or physical setback occurs, this can be used as the focus of therapy. Patient and therapist can examine whether the consequences were as catastrophic as might have been predicted, or whether the fall was worth experiencing because it happened during an otherwise pleasurable activity such as shopping for clothes in town.
Experiment 16.4: overoptimistic beliefs related to poor insight
Problem Jason, who had a small landscape gardening business, sustained a severe head injury, which included focal damage to the frontal lobes. He had marked cognitive problems, but only partial awareness of these, despite clear feedback to the contrary given by family, friends, and clinicians. Within two months of the injury he was expressing a determination to return to work as soon as possible. He could not be persuaded that significant cognitive impairment did exist, and that his return to work at this point was not likely to be successful, which might put his business at risk.
(p. 340) Target cognitions I’m OK; I don’t have any problems with thinking. I have recovered. I’m completely back to normal. I’m totally ready to return to work.
Alternative perspective (a) (generated by Jason) I may still have some problems; (b) (generated by therapist) being unaware of problems may be a problem in itself.
Predictions If I am right about my recovery, I will have no problems in carrying out some work tasks under supervision. If I am really not ready to go back to work, I will have problems in carrying out these tasks.
Operationalizing the predictions Jason and his boss on a work simulation rehabilitation project agreed on criteria for successful task performance.
Preparation for the experiment Preparation involved ensuring that the work simulation was realistic and meaningful to Jason. This included having a ‘boss’ who could give realistic feedback, using video recording as necessary.
Experiment Jason joined a work party of patients with ABI who were doing light horticultural work at a local National Trust park. His ‘boss’ was the head groundsman.
Results Jason coped well with the light horticultural work, so his prediction was partly confirmed. However, when it was his turn to make the tea for the 15 people involved, he was unable to plan, initiate, and remember enough of the task to complete it. His colleagues were consequently unable to have their tea break.
Reflection Jason was able to see very clearly that he had failed at a significant component of the work simulation. He reflected, ‘If I can’t organize a tea break, I certainly can’t manage my business at this time’ and ‘I now realize I’ve got some problems’. His more realistic appraisal of the situation paved the way for a much slower, graduated, and ultimately successful return to work.
Further work The therapist needed to support Jason emotionally as the effects of task failure were demoralizing (see ‘Distinctive difficulties’ section).
Tips It is important to stress that the results of this sort of experiment apply to the present time only. The process of recovery from severe head injury takes at least two years, and just because return to work is not possible at one point in this process does not mean that it will not be possible at a later time. Both realism and hope need to be encouraged.
Experiment 16.5: overoptimistic beliefs related to denial
Problem Nicola sustained a severe head injury in a car accident in the summer term of her second year at university. She did not sit her second year (p. 341) examinations, primarily because she was in hospital for treatment of the significant orthopaedic injuries also sustained in the accident. She returned home, made an excellent physical recovery, and was coping well with normal family life during the long vacation. Both she and her family felt that she was ready to resume her studies in the autumn, and she was desperately keen to put the accident behind her. Their plan was for her to sit her second year examinations on her return, and then to complete her final year as normal. However, her neurologist was more cautious, and referred her for a neuropsychological assessment.
Target cognitions I’ve got some minor problems with reduced concentration and fatigue, but these won’t interfere significantly with my studies. The doctors are being overly pessimistic about my brain injury—look at my physical recovery; it was quicker than they expected. I know myself better than anyone else does.
Alternative perspective (generated by therapist) Even though I’ve made a good physical recovery, my cognitive problems may still be significant. It’s normal for the brain to recover more slowly than the rest of the body. Most people with severe head injury take some time to get back to studying. Even though my brain is coping well with everyday life, it may not be ready yet to cope with the heavy demands of studying.
Predictions I will be able to complete psychological tests with no problems and achieve satisfactory scores.
Preparation for the experiment The general procedure and the nature of the tests involved in a neuropsychological assessment were carefully explained to Nicola.
Experiment A neuropsychological assessment, lasting about 120 minutes and involving cognitively demanding tests, was carried out. While the scores obtained on the tests were important, the procedure also functioned as an exploratory behavioural experiment in which Nicola could test the limits of her own cognitive capacities for the first time since her accident.
Results Nicola performed well on the tests for the first 30 to 40 minutes, but was so fatigued after that time that she felt unable to complete the assessment, even when an additional break was offered.
Reflection While initially demoralized, Nicola was able to reflect, ‘I knew in the back of my mind that I was kidding myself’, ‘I need to plan around the possibility that I may not finish my degree next year’, ‘Maybe the doctors were right about this part of my problems after all, and their advice may be sensible’. These changed cognitions paved the way for Nicola to plan a third year of light studies with support from her personal tutor. She completed two modules (p. 342) over the year, and successfully passed her second year examinations. She extended her time at university by one year and completed her degree.
Tips Neuropsychological assessments, and assessments by other rehabilitation professionals, can be set up as behavioural experiments, with predictions about outcome, and discussion of implications prior to and after the assessment. This can greatly enhance their utility for patients.
Beliefs about social situations
Experiment 16.6: social presentation
Problem Dave sustained a severe head injury three years previously in a cycling accident. In addition to problems with memory and concentration, he had reduced initiation and decreased ability to approach people and start conversations. He also had a left-sided weakness, mainly affecting his arm, with his hand held in a ‘fist-like’ position with the arm rigidly across his body. His gait pattern was clumsy and rigid. He described frustration, embarrassment, and lowered self-esteem. He found social situations particularly difficult. Recently, while in a crowded local pub, Dave had ‘hooked’ a woman’s handbag on to his left arm when trying to get to the bar. The woman had become upset and called him a thief. Her boyfriend was verbally abusive and threatened violence. Since then Dave refused to visit the pub and started to avoid other situations, such as city-centre shops, where there were crowds of people.
Target cognitions My left arm is likely to hook up other bags in future, and there will be more arguments and embarrassment. Because of this incident, and because of my disabilities, people now think I’m a hard man, a thief, and a weirdo. They will see me as looking for trouble and steer clear of me.
Alternative perspective The incident with the woman’s handbag was probably a fluke, just an unfortunate one-off. It has never happened before and is unlikely to happen again. I think the woman backed into me, so she may have been partly responsible. The event was probably not widely discussed in the pub because arguments do happen from time to time when it is crowded. The regulars know I have had a head injury, and if I take time to explain my situation they will be interested and supportive.
Predictions When I enter the pub I will not attract undue attention or trouble, and it will in fact be difficult for me to hook people’s bags on to my arm.
Operationalizing the prediction Visit pubs and other busy places and deliberately stand close to people when attempting to pass through crowds. Engage strangers in conversation rather than avoid them.
(p. 343) Preparation for the experiment Dave participated in extensive role play prior to the first experiment. There was discussion and rehearsal of the appropriate level of self-disclosure, and techniques for initiating conversations. There were also some more supportive sessions focusing on issues of body image and identity. Since Dave’s difficulties with initiation were primarily due to damage to the frontal lobes, and not purely due to anxiety, this remained a significant problem which required continuing management.
Experiments Dave went to his local pub on two quiet afternoons and attempted to engage someone in a conversation that involved him talking about himself. He returned there on two busy evenings and made an effort to hook bags as he passed close to people.
Results Dave was able to strike up a conversation on two occasions, and found that the listeners were interested in his situation. He had not been able to hook up any handbags, and had not been aware of attracting undue attention from customers, even when he had bumped into someone, having lost his balance.
Reflection Dave reported surprise and pleasure at the interested reactions of strangers and felt this experience had given him confidence to explain himself in the future. He expressed relief that he had not had a repeat of the handbag situation, especially as he had been almost 100% certain that it was likely to recur. He concluded that the woman involved must have had a good deal of responsibility for the situation. He felt it unlikely that he would be faced with a similar situation again.
Further work Dave was able to use this experimental approach to other avoided social situations, including shopping, attending college, and dealing with his solicitors. In all these situations he had worried about what other people thought of him.
Tips This approach can also be used with individuals with other disabling physical conditions (e.g. tremor, which may be perceived by others as a sign of alcoholism).
Experiment 16.7: using self-advocacy
Problem Fred sustained a severe head injury in a motorbike crash. He had no major physical problems. However, his memory was poor, his speech was slow and rather flat, and his speed of processing information was slow. He came from a violent background, and since the injury had significant problems with angry outbursts. Despite this, he was doing well, and obtained a work placement in a large retail store, where his job was to take receipts from customers and give (p. 344) them the item they had purchased which would be delivered to him on a conveyer belt. He had no control over the rate at which customers arrived at his counter. There was no clear queue. Quite often customers complained because goods took longer than expected to arrive. When things got pressurized he would lose his temper, and there were incidents in which he shouted and swore at customers or other staff. His support worker suggested that he explain his condition to these people so that they would make less demands of him.
Target cognitions I know my problems with temper outbursts are because my head injury has made me slow at processing stuff, but if I tell people about it, it can only make things worse. They’ll think I’m a spastic (that’s what I used to think about disabled people before this happened to me).
Alternative perspective People can be quite understanding if they are given a reason for something. If I tell them what my problem is, I will be managing the situation, it won’t be managing me.
Predictions If the target belief is true, then when I tell people what my problem is they will be abusive towards me. If the alternative belief is true, then they will be sympathetic and allow me to handle the situation my way.
Operationalizing the predictions Fred agreed a form of words that he would say when too many demands were being made of him at work: ‘I’ve had a head injury, my short-term memory has been affected, and I can only do one thing at a time. Please be patient and I will deal with you when I have finished with this customer.’
Experiment Fred used this strategy in the work situation. His support worker spent some time observing him and recording what happened, to aid Fred’s memory of events.
Results When Fred used this technique, customers agreed to wait their turn. No customer was verbally abusive towards him, and staff gave him some space. There were no more incidents in which he lost his temper.
Reflection Fred was surprised that the technique had worked so well and described an increased sense of self-respect in the work setting. On the other hand, he said that he deeply resented being in a situation in which he had to use such techniques. He did not feel that he could use a technique like this with his friends or partner; its usefulness was confined to interactions with strangers.
Tips Self-advocacy is reported here as a means of reducing angry outbursts, but it is not primarily an anger management technique. It is an important skill for people with disabilities, especially those with communication or cognitive problems. Feeling confident in using the technique requires behavioural (p. 345) experiments that are aimed at challenging the belief that others will respond unhelpfully to people who draw attention to their disability. Unfortunately, negative attitudes to people with disability remain fairly widespread in society. The experiments may first need to be carried out in a protected or artificial environment. The less friendly, real world calls for experiments that allow for rejecting or abusive responses to the disabled person.
Working with people who have a medical condition
There may be risks associated with some behavioural experiments with certain patients (e.g. inducing a seizure or further stroke, or adversely affecting motor function). Close contact with the patient’s general practitioner and, if relevant, medical consultant and physiotherapist should ensure the construction of appropriate experiments. In general, significant medical risks are rare.
Working with people who have cognitive impairment
Where possible, the patient’s cognitive problems should be identified by means of an assessment carried out by a clinical neuropsychologist. It is also essential to interview the patient and a relative or friend to gain information about everyday cognitive function.
Behavioural experiments may need to be relatively less demanding to take into account reduced cognitive stamina (almost ubiquitous in any condition affecting the brain) and physical limitations. Patients with memory problems whose reading ability is intact can be greatly helped by the use of diaries, written records of the rationale of the treatment approach, and flashcards to use in situ, reminding them of cognitive techniques. Their rate of learning will be slow, so more experiments and more therapy sessions may be needed to achieve an effect comparable to that of a person with normal memory function.
Patients with damage to the frontal lobes can often have difficulties in executive function. This can show itself as rigid and concrete thinking styles and as difficulty initiating thought and action. The style of cognitive therapy here needs to be highly directive, especially in generating alternative perspectives on problems, as these patients can get stuck in particular ways of thinking and acting. They also benefit from forced choice rather than open-ended questioning because of their problems in generating thoughts and ideas from scratch.
In general, cognitive problems are at their worst during times of emotional arousal and distress. This may affect the degree of arousal that therapist and patient are prepared to tolerate in a behavioural experiment.
(p. 346) Formulation: a wide range of factors which may contribute to a problem
It is important to be aware of the danger of misattributing behaviour to emotional factors when it is due to cognitive impairment and vice versa. For instance, a person may show rigid adherence to a particularly negative view because of depressed mood, executive impairment, or a combination of both; another may have problems with irritable and aggressive behaviour because of anger at her situation or because of cognitive overload, or both; another person may deny any problems in his abilities or relationships because of psychological denial or an organically based lack of awareness, or both; another may struggle to complete homework tasks due to memory impairment or motivational factors, or both. Teasing these issues out can be very difficult (see Prigatano 1999), but it is an enormous help for the therapist at least to be aware of the issues, and potential alternative formulations of the problem.
It is important not to fall into the trap of attributing all problems to the brain injury. Some may have predated the injury; some may have happened anyway. A fairly common scenario is for a mother with ABI to attribute the deterioration in her relationship with a teenage daughter to her own inadequacy and acquired disability, idealizing the early childhood relationship from a time when she was able-bodied. Normalizing the changes that occur in parent–child relationships over time can be immensely helpful in this type of situation.
Recognizing emotional behaviour
It is important to be alert to signals of emotion in these patients. Some people are highly expressive, but others can appear ‘flat’ and subdued because of their disability, unable to use body language, facial expression, or tone of voice to convey emotion. They may be highly aroused and distressed, but this may only become evident on careful questioning.
On the other hand, excessive or exaggerated emotional reactions, such as weeping or anger outbursts can also occur. These may be mediated through a general loss of emotional control arising directly from the brain injury. Such excessive reactions are rarely meaningless and may reflect genuine concerns of the patient (McGrath 2000), but they need to be recognized for what they are, and managed as part of a general cognitive therapeutic approach.
Experiments in which the results are potentially distressing
Where insight difficulties or denial of disability are present, the nature of the cognitions to be tested is the opposite to that most commonly encountered in adult mental health work. The overly positive beliefs of some brain-injured (p. 347) patients may be just as maladaptive as the overly negative beliefs of the adult mental health patient. They may result in short term positive mood but longer term distress due to excessive failure experiences for which the patient is unprepared. Experiments which challenge positive, perhaps defensive, cognitions may consequently require more sensitive handling and careful follow-up, as they often lead to a reduction in positive mood.
Experiments that ‘don’t work’
The degree of certainty of the outcome of behavioural experiments in this group is often significantly reduced. An experiment may be as much for the benefit of the therapist as it is for the patient. It may, for example, test both the patient’s potential lack of insight and consequent overestimation of his fitness, or the potential underestimation of fitness by the therapist due to the limitation in ecological validity of psychometric assessment instruments.
Sometimes the results of a behavioural experiment seem clearly to contradict the target cognition and support an alternative belief, yet patients will persist in holding on to their original belief because they claim that the experiment was not a good test of the belief in question. This commonly occurs when the issue is the patient’s overestimation of level of function. For instance, failing to complete a simulated work task in the time allocated is attributed to the task being a poor simulation of the real work environment rather than to changed ability levels. Conversely, patients who are convinced that they have become so disabled that their lives are no longer worthwhile may dismiss the positive outcome of a behavioural experiment as trivial when compared with their previous level of social and occupational function. Such a patient might move from, ‘I’m so disabled that I can’t even put my own socks on’ to, ‘So—I did an experiment and found I could put my own socks on—big deal!’
It is vital to get clear agreement that the experiment is a reasonable test of the belief before carrying it out. However, patients may change their mind later, claiming that they only realized that the experiment was flawed after they had begun to participate. It is possible to ask patients to construct a better experiment. They may respond by setting unrealistically stringent conditions, so that it is easy for them to rationalize evidence that challenges their beliefs by saying that the experiment did not meet their original conditions.
The problem here is not with the experiments themselves but with patients’ approach to them, welcoming the experimental method exclusively as a means of confirming their existing world view, and not a means of modifying it. This indicates that this world view, or the view of self, is at once highly cherished and deeply threatened. Behavioural experiments on their own will not address (p. 348) the core issues for these patients, who may benefit from a schema-focused approach to their psychological therapy and a multidisciplinary approach to their rehabilitation in general (McGrath and Adams 1999).
Other relevant chapters
The following chapters are likely to contain material that is helpful in working with people with ABI: Chapter 6 on generalized anxiety disorder; Chapter 7 on social anxiety; Chapter 9 on post-traumatic stress disorder; Chapter 10 on depression; Chapter 15 on physical health problems; and Chapter 20 on low self-esteem.
Tales from the Front Line
Not a fertile idea
Sean, a 20-year-old medical student, had partially recovered from his first psychotic episode. All those involved in his care became concerned when Sean became increasingly unwilling to take his anti-psychotic medication. On further discussion it became clear that Sean had grown convinced that the medication would threaten his fertility, a concern not easily dispelled by numerous educational chats with staff. Upon discovering that Sean owned (and knew how to use) a microscope, the team psychologist asked Sean, “What do you think might be happening to your sperm?” “Dead”, came the unequivocal reply. “Is there any way of checking that?”, enquired the psychologist. “Sure thing”, said Sean, looking sheepish.
A few days later as the psychologist arrived for a team meeting she was greeted by groans and dirty looks. Unaccustomed to such a reception she sought to discover the source of the team’s malcontent. Team members replied in unison, “You put the idea in his head, now you make him stop”.
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Khan—Bourne, N. and Brown, R.G. (2003). Cognitive behaviour therapy for the treatment of depression in individuals with brain injury. Neuropsychological Rehabilitation, 13, 89–107.Find this resource:
McGrath, J. and Adams, L. (1999). Patient-centred goal planning: a systemic psychological therapy? Topics in Stroke Rehabilitation, 6, 43–50.Find this resource:
Prigatano, G.P. (1999). Principles of neuropsychological rehabilitation. Oxford University Press, New York.Find this resource:
Williams, H.W., Evans, J.J. and Fleminger, S. (2003). Neurorehabilitation and cognitive-behaviour therapy of anxiety disorders after brain injury. Neuropsychological Rehabilitation, 13, 133–48. (p. 349) (p. 350) Find this resource:
* Behavioural experiment 16.6 was contributed by Audrey Daisley.