Behavioural difficulties

Behavioural difficulties are often the problem that prompts a referral. Work by Brown et al (1981) indicated that children with severe head injury (severe defined as post-traumatic amnesia (PTA) of more than 7 days' duration) were three times more likely to present with novel psychiatric disturbance compared with premorbid functioning, but new problems did not arise in mildly injured children (PTA for less than 7 days) and an orthopaedic control group. On the other hand, children with mild head injury were more likely to have had premorbid emotional and behavioural problems than the group with severe head injury and control group. Similar findings in the USA by Max et al (1998a) have also shown that psychiatric problems are more likely to emerge after severe than after mild head injury. The most common problems include the following.

1. • Impulsive behaviour leading to accidents, untidy work, etc. can result in an increased supervisory role for parents and concerns that they have to be constantly vigilant.

2. • Poor attention and concentration, which may be mistaken for attention-seeking behaviour, can be a persistent.

3. • Increased irritability, anger and temper tantrums may occur. Children may be described as having a very short fuse. Max et al (1998a) found that oppositional defiant disorder symptomology in the first year post-injury is often linked to social class and pre-injury problems and family functioning, but may be associated with severity of injury 2 years after the event.

4. • Disinhibited behaviour may be shown, which can be verbal, physical and, very occasionally, sexual. Brown et al (1981) found that children with severe head injuries (but not the mild injury or control groups) developed a disinhibited state. Of all presenting problems, disinhibition may be considered that most specifically related to traumatic brain injury, although Brown et al found only a modest positive dose–response relationship. Of all the behavioural problems, it is disinhibition that often causes most concern to families and teachers alike.

5. • Lethargy and inertia is common. Not all children present with the positive signs described above: some become difficult to interest in anything and seem to have lost all ‘get up and go’, sitting around all day, having been active and full of energy in the past.

With the possible exception of disinhibition, none of these difficulties is exclusively the domain of acquired brain injury. However, even if problems were present prior to the injury, and there is evidence that children with head injuries, for instance, are a self-selecting group, it is the change in the frequency, duration and intensity of the problems that is striking and that may bring about a referral.

Emotional problems

Emotional problems should not be overlooked, although they can be masked by difficult behaviour, and a referral may be made for a number of reasons, among them the following.

1. • Depression may arise from the perceived and real losses that have resulted from injury (e.g. loss of academic status and future career aspirations; loss of status in the family – perhaps a younger sibling is now more able and more competent; loss of friendships; and difficulty in making new friends, resulting in loneliness). In addition, acquired physical impairments, even if relatively minor, can have a major impact on a child's self-worth and can also, for example, lead to exclusion from teams or playground activities because physcial skills have deteriorated. Scarring may appear stigmatising and even minor disfigurement can be a major problem for self-image (Reference Kish and LansdownKish & Lansdown, 2000). Loss of fertility resulting from treatment (e.g. after intensive radiotherapy for leukaemia or brain tumours) may also be an issue.

2. • Children who have suffered life-threatening illness may fear the recurrence of the illness and subsequent death.

3. • Anxiety may be less obvious, but is often related to loss of skills and to children feeling that they are less able to cope with school or life in general, against a background where they are expected to catch up and keep up with their school work and live up to parental and school expectations.

4. • Post-traumatic stress disorder (PTSD) needs to be considered, even if there is a report of a short loss of consciousness. Failure to have a continuous memory of events does not exclude the development of PTSD (Reference McMillanMcMillan, 1996). Memory of the approaching vehicle in a road traffic accident, being cut out of a vehicle by the emergency services or seeing other people who have been injured or killed may be present.

5. • Grief is perhaps less common, but where an accident involves significant others, the resulting death of a parent, sibling or friend may cause a sense of acute loss, changed home circumstances and feelings of survivor guilt.

Cognitive problems

Cognitive problems may include any or all of the following.

1. • Reduced speed of processing of visual and verbal information, longer thinking time and slower motor or verbal responses are common. Children are usually slower than they were before an injury, particularly after severe injury (Reference Bawden, Knights and WinogrenBawden et al, 1985). This can have an enormous impact on daily living skills, safety, particularly in complex, noisy and fast-moving environments, social relationships and educational achievement.

2. • Poor attention and concentration and high distractability are among the most common complaints of parents and teachers, with concerns about their impact on learning and safety (Reference Dennis, Wilkinson, Koski, Broman and MichelDennis et al, 1995).

3. • Visuo-perceptual and spatial problems may present as untidy work or a decline in writing and drawing ability, or there may be major problems acquiring these skills; there may also be impaired constructional skills, or poor skills in sports and gymnastics.

4. • Memory and learning problems may occur, particularly in the ability to learn and retain new information, to integrate this into the existing knowledge base and to generalise what has been learnt to new situations (Reference Levin, Ewing-Cobbs, Eisenberg, Broman and MichelLevin et al, 1995).

5. • Higher-level language difficulties are not always obvious, but children may find processing complex and abstract ideas, making inferences or understanding ambiguity a problem (Reference Chapman, Broman and MichelChapman, 1995).

6. • Problems with executive skills are not uncommon, including goal-setting, systematic planning and initiating, organising and executing plans to reach the desired goal. There may be difficulties in evaluating the viability of goals and monitoring progress and goal attainment (see Dennis, 1991).

Presentation of any of these difficulties may not be immediately obvious, as parents and schools often observe underachievement and a failure to make progress post-injury. Referral may not occur immediately after an injury. Indeed, it can take time for the effects of these problems to become apparent. It may be 2 or 3 years after the injury before serious concerns arise. If the child is young at injury (under the age of 3 or 4 years), problems may be more global than specific. In addition, as the brain is still developing during the first two decades, some problems directly related to the injury may not surface until those areas of the brain that have been damaged are fully mature (e.g. the frontal lobes).

Physical impairments

Physical impairments arising from acquired brain injury have been mentioned in passing in the above sections but need to be considered separately within a thorough assessment. Although many children suffering from acquired brain injury do not have these difficulties, epilepsy, subtle visual problems, field defects, hearing loss, tremor, weakness, sensory loss, loss of bladder control and increased tiredness can occur (Reference Hall, Jones and MiddletonHall et al, 1990). Where they are present, they have a significant impact on children's psychological, social and academic functioning, as well as on how they feel about themselves. An emotional response and difficult behaviour arising from these losses or problems may be most usefully seen as a normal reaction to new circumstances rather than as a psychopathological problem.

Interaction of impairments

It should be clear from what has been described that problems following acquired brain injury are rarely discrete. Pre-existing difficulties and the injury variables will also need to be considered in understanding the presenting problems. Cognitive, behavioural, emotional and physical problems arising directly and indirectly from acquired brain injury frequently interact in a complex way. That a number of these problems may have been present prior to injury should not in itself automatically lead to the erroneous conclusion that the effect of the injury has been minimal, as premorbid difficulties can be exacerbated (Reference Donders and StromDonders & Strom, 1997). Again, it is the reported change that is critical, and many problems that were present but manageable before the injury can become a major source of concern.

Case study

During the period that followed the injury, there were major changes in the family's home life. G's father had been cycling with him when the accident occurred, and, although there was negligence by the driver, his mother had blamed her husband for not taking sufficient care of G. G had been born some time after the other children and was a particularly precious child in whom his parents had high hopes of academic success. Because of the need for constant supervision in the early days after the injury, G's mother gave up work, which added to her anger about what had happened, created some financial difficulties and resulted in general anxiety and increased grief. Because of the resultant tensions at home, both the middle children moved out earlier than had been anticipated, thus reducing the amount of support their mother received in keeping an eye on G.

Because of reasonable progress and containment in primary school, when G's parents arranged his secondary school transfer, they decided they would put the past behind them and did not inform his new school of his injury. However, in secondary school G had to cope with the need for much greater independence in organising himself, a fast-moving school environment, where he had to get from one classroom to another – sometimes on different sites – and an expectation that the majority of children would finally be attaining reasonable GCSE grades. G's behaviour in the classroom, which had been tolerated in primary school, was now reprimanded. His old friends fell away from him and he found it difficult to make new ones. Consequently, he began failing in school, frequently being told off and becoming isolated. Because his mother continued to be concerned about him, she restricted his independence compared with other children in his class and this caused anger at home, where she was seen as unreasonable. Her old concerns and anger had not been dealt with and were exacerbated by the ongoing litigation against the driver of the car, which was a constant reminder of the accident. G's father rarely spoke of the accident, although he continued to have vivid memories of his son lying under the car. His wife found his silence about the accident difficult to cope with.

This hypothetical case, based on the cases of many children seen over the years, is certainly not uncommon. It illustrates that in dealing with a child presenting with conduct problems, or what might be classified as oppositional defiant disorder, following an accident, the direct sequelae of the brain damage interact with pre-existing child, family and school variables.

Explanation and information

Many parents do not fully understand the mechanisms of brain injury nor how it directly affects behaviour, even after a period of good recovery. There may be false beliefs, for example, that if only there were more therapy, etc. their child would make a full recovery. Consequently, accessible and realistic information about the injury can be helpful (Reference Waaland, Burns and CockrellWaaland et al, 1993) and this may need to be revisited at different times. Children themselves may also need to be given an explanation at an appropriate developmental level, as they are often ignorant of the variety of issues surrounding the effect of their brain injury (Reference JacobsJacobs, 1993).

In addition, discussing the dynamics of the injury's effects on family functioning and how the accident may have indirectly affected other members of the family, for example, difficult siblings, is a useful start in planning interventions, not just for the child, but for other family members.

Finally, many families will need assistance and information on how to get help for their child, particularly in establishing appropriate education, which is often a long-term source of anxiety and stress.

Adaptation

Clear explanation and information may enable schools, families and children to be realistic about present and future expectations. If there is a belief that more therapy and extra tuition will lead to full recovery, children can be put under considerable stress by being expected to work to catch up, making them more tired, irritable and, finally, defiant or depressed, as shown in the following case vignette.

Children may present with many problems, but those with conduct or attention-deficit disorder may particularly benefit from adaptations to the school curriculum if part of the aetiology of their difficulties results in an inability to cope with the amount and complexity of work. Similarly, even relatively small physical adaptations to equipment at home and the provision and simplification of worksheets at school, for instance, can reduce failure and frustration.

Cognitive and behavioural strategies

Individual treatment

Self-help groups

It is important to put children and families in touch with national and local support groups. For example, the Children's Brain Injury Trust, Headway and the Meningitis Trust support families and individuals who have suffered brain injury and they have written useful, accessible information across a wide range of relevant issues.

Coordinating rehabilitation

Where there are multiple problems leading to the involvement of a number of different health and education staff working with one family, it is important that service delivery is coordinated. Depending on the major issues, any one of a number of senior clinicians from different disciplines may be the most appropriate person to act as coordinator for a particular child. As children make progress, it is possible that there is a change of coordinator depending on the issues that are important at the time.