Family and friends of individuals with a traumatic brain injury (TBI) report behavioural changes such as aggression and disinhibition to be the most difficult consequences to cope with following injury. Psychologists working in rehabilitation are increasingly called upon to provide behaviour interventions that will minimise difficult behaviours in clients with a TBI. However, it is often people other than the clients themselves reporting the concerns. Problems with reduced self-awareness secondary to cognitive impairment contribute to this picture, but cannot be assumed to be the sole contributory factor. The psychologist must therefore decide when it is reasonably ethical to intervene in response to the concerns of others and how to provide effective interventions given this dilemma.
Common behaviour changes causing distress
Behaviours including verbal aggression, physical aggression, reduced initiation of daily activities (adynamia), sexual disinhibition, social disinhibition, repetitive thoughts or actions (perseveration), absconding and wandering are often demonstrated by survivors of TBI. These behaviours frequently lead to difficulties in family reintegration and the experience of stress, anxiety and depression among family members (Verhaeghe, Defloor & Grypdonck, 2005).
Whilst behavioural changes can also be distressing for the client, the injury itself commonly results in a lack of awareness and concern about behavioural difficulties (Port, Willmott & Charlton, 2002). Disruption to frontal executive processes like self-monitoring and problem solving are thought to explain impairments in behavioural awareness. Interestingly poor self-awareness has also been shown to be an important risk factor for behavioural disturbance (Bach & David, 2006). It is therefore not surprising that concerns and appeals for help predominantly come from family and friends, as well are direct care workers, rather than clients themselves.
Behaviour interventions for clients with TBI
Psychologists working in rehabilitation roles are commonly asked to provide behaviour interventions for clients with TBI. Positive behaviour interventions are favoured, as these provide individuals with a better chance of succeeding in their social contexts (Ylvisaker, Turkstra & Coelho, 2005). This approach places less importance on the manipulation of consequences and extinction practices, and emphasises the use of natural and logical rewards for successful behaviour.
| COMMON POSITIVE BEHAVIOUR INTERVENTIONS |
- Psychoeducation and training for family and care workers
- Structure and routine, e.g.,a regular weekly timetable of meaningful activities
- Orientation strategies, e.g., whiteboards, calendars, diaries
- Identification and modification of behavioural triggers
- Redirection and distraction
- Modifying communication and interaction patterns
- Positive reinforcement of alternative behaviours
- Relaxation, anger management and impulse control skills training
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Deciding when to intervene
Psychologists are therefore often faced with the ethical dilemma of whether to intervene in a client’s life without their explicit agreement. This raises important ethical considerations given that we know behaviour interventions are not risk free; they can be demoralising to clients with TBI even when limited to environmental change (Willer & Corrigan, 1993).
One guiding principal often found to be useful involves reflecting on whether behaviours are causing concern because of what the client did, such as the action of punching someone, or because of how others felt in response to their behaviour, such as the feeling of embarrassment or disgust when a client masturbates in public. Ethical decision making seems more clear-cut when behaviours are dangerous or at least when there are foreseeable risks to safety. When behaviours are difficult for others to cope with however, the concern is really about ‘where’ and ‘when’ the behaviour is occurring, which makes ethical decision making more complicated. A good rule of thumb in this instance is to provide interventions in only those contexts where not doing so would lead to a breakdown in relationships that are meaningful or supportive for the client (Sense Scotland Practice Development Department, 2003).
Decisions about ethical practice tend to not be so straightforward when concerns about dangerous behaviour relate to the client’s safety alone, such as in the case of a client going out alone despite their high risk of falls. This is because interventions in this situation are at risk of becoming paternalistic, for example restricting the client’s access to the community to minimise falls, and do not promote choice or freedom. The trade-off for safety may be despair and, in turn, deterioration in other behaviours such as aggression. Ethical dilemmas such as this are unlikely to be completely resolvable and a commitment to giving these issues due consideration on a client-by-client basis is most advisable (McGrath, 2007).
| CASE STUDIES EXPLORING ETHICAL DECISION MAKING |
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June is a 61-year-old woman who sustained a severe TBI eight months ago and lives in a nursing home. Nursing staff report that June pinches and scratches them when they are assisting her with transfers. June does not remember this happening.
Possible response
June’s behaviour is of concern because it is dangerous to others and it would be unethical to put others at risk by not intervening. Potential behaviour interventions need not be paternalistic and could include getting staff to provide explanation and reassurance around care tasks or to minimise any associated pain. This is more likely to promote choice and freedom.
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Kelvin is a 52-year-old man who lives in supported accommodation following a severe TBI ten years ago. Staff are concerned about him watching pornography on his computer as he does not turn it off when they come into his bedroom. Kelvin does not understand what all the bother is about.
Possible response
Kelvin’s behaviour appears to be a concern because of the negative reaction it has incited in nursing staff within the context of his bedroom. The behaviour is not dangerous and, since it is occurring in the privacy of Kelvin’s bedroom and staff do not need to enter his bedroom or look at his computer screen to continue providing him with support, attempts to change this behaviour would not be the most ethical response.
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Ray is 22 years old and has lived with his parents since sustaining a moderate TBI last year. Ray is visited by carers daily because he needs help with showering. Most of his carers have resigned due to Ray masturbating when they are assisting with showering. No-one has talked to Ray about this.
Possible response
Ray’s behaviour appears to be a concern because his carers find it offensive. The fact that Ray masturbates is not an issue in itself, however his masturbation in the shower in the presence of carers is getting in the way of establishing and maintaining good relationships with his carers who are essential to help him with activities of daily living. Positive behaviour interventions focused on changing this behaviour within the context of showering, such as providing Ray with time alone if safe to do so, are likely to be ethically reasonable.
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Strategies for increasing client participation in behaviour interventions
“Clients are not expected to accept they are wrong to think or behave as they do, but rather to consider that there may be more useful alternatives.” (Manchester & Wood, 2001, p. 163)
Engaging clients with a TBI in behaviour interventions is the ideal; however this can be difficult when the client denies having problems with behaviour (due to impaired self-awareness).
There are a number of different strategies or techniques that psychologists can try that may increase client participation; four of these are presented below.
- Focus on unmet needs – Psychologists may need to engage clients in working toward improvements in quality of life rather than specific behaviours. From this perspective, behaviours of concern are viewed as expressions of unmet need to obtain something positive or avoid something negative (e.g., June scratching staff to express her need to avoid pain or anxiety in the case example). Therefore behaviour interventions focused on meeting the client’s needs are more likely to promote client participation (e.g., offering June analgesia, asking her the best way to touch or transfer her, providing her with explanations and reassurance).
- Change talk – Clients with some capacity for behaviour change (i.e., adequate learning, self-monitoring, abstract or flexible thinking) may need to be engaged through applicable motivational interviewing techniques, e.g., “I know that being respected by others is important to you. How does your yelling and swearing at them help you meet that goal?”, or “I know you would really like to get out of this place one day. Will staying in bed all day help you with this?” An emphasis on choice and control, shifting focus (avoiding arguing) and a menu of options for change are other motivational strategies that can work well with clients with a TBI (Manchester, 2010).
- Goal setting – Most human behaviour is goal-directed. Asking clients what it is they most want to achieve, whether realistic or not, can be a useful way of developing awareness and motivation around alternative behaviours that can help them to achieve their goals. For example, a client wanting to return to work may need to shower in the mornings and work on having positive social interactions with others. Goals are broken down into individual sequenced steps, reviewed regularly and ticked off as completed (Ylvisaker & Feeney, 1998).
- Identity mapping – Identity is often damaged by the effects of TBI on a client’s abilities and life roles. Assisting clients to construct an organised image of an admired individual (e.g. a sporting hero, actor, relative) can facilitate meaningful behaviour change in clients with even severe TBI (Ylviasker & Feeney, 2008; McPherson, Kayes & Weatherall, 2009). This can be achieved through mapping: a) important facts about the individual’s identity; b) what is admired about their appearance; c) achievements of the admired individual; d) the admired individual’s goals that are admired by the client; e) how the client would feel achieving the goals; and f) steps required for the client to achieve the admired goals.
The principal author can be contacted at [email protected]