Challenging behaviour and cerebral palsy
Updated April 2008
What is challenging behaviour?
The term challenging behaviour has been used to describe ‘difficult' or ‘problematic' behaviour, the frequency and intensity of these behaviours can vary greatly with each individual.
Emerson (1995) defines challenging behaviour as "culturally abnormal behaviour(s) of such intensity, frequency or duration that the physical safety of the person or others is likely to be put in jeopardy, or behaviour which is likely to limit the use of, or result in the person being denied access to ordinary community facilities".
Challenging behaviour can also be learned behaviour - if behaviour produces a pleasant or desired outcome, it is more likely to happen again.
It can be used to refer to behaviours which do not have serious consequences but are disruptive, stressful or upsetting.
Challenging behaviour is not exclusive to people with a learning disability or neurological impairment but is usually used in this context.
Types of challenging behaviour
There are four main categories of challenging behaviour and actions can range from moderate to severe.
- Self-injurious behaviour includes head-banging, scratching, pulling, eye poking, picking, grinding teeth, eating non-foodstuffs.
- Aggressive behaviour toward others includes biting and scratching, hitting, pinching, grabbing, hair pulling, throwing objects, verbal abuse, screaming, spitting.
- Stereotyped behaviour including repetitive movements, rocking, repetitive speech and repetitive manipulation of objects.
- Non-person directed behaviour includes damage to property, hyperactivity, stealing, inappropriate sexualised behaviour, destruction of clothing, incontinence, temper tantrums, lack of awareness of danger, withdrawal.
What is the link between cerebral palsy and challenging behaviour?
A number of people with cerebral palsy also have a learning disability. Many will also have a severe cognitive impairment, which means they cannot reason well or understand their environment fully. Challenging behaviour most frequently happens within this group, especially where someone cannot communicate effectively. Challenging behaviour can, however, occur across the whole range of intelligence and can be severe in people with mild or no intellectual impairment.
Risk factors
Three significant indicators for challenging behaviour in cerebral palsy can be identified. These are:
- damage to the nervous system
- learning disability
- epilepsy (especially if poorly controlled)
Additional factors are:
- age (reaching a peak between age 15 - 34 with a reduction in challenging behaviour in the mid-thirties)
- gender (men exhibit more challenging behaviour than women)
- multiple impairments
- communication difficulties
Reasons for challenging behaviour
Challenging behaviour can stem from biological causes. For instance, Lesch-Nyhan syndrome is linked to self-injurious behaviour.
Stereotyped behaviour (such as rocking) may be the means by which a person maintains the level of stimulation or arousal they want.
Challenging behaviour is not the same as psychiatric disturbance. A mental health problem may exist and this should be explored by appropriate professionals; communication difficulties can have significant impact on diagnosis.
Challenging behaviour may be a means of communication. The need for food, drink or comfort may be the reason for the behaviour. In cases like this, it may be possible to teach more socially acceptable ways of communicating a need.
Challenging behaviour can be a sign of abuse, distress, anger, frustration, discomfort or pain. Withdrawal of co-operation (such as at mealtimes) may be the only means available to a highly physically dependent person of showing emotions.
Challenging behaviour can be a response to the environment. This could include under- or over-stimulation, poor physical environment (e.g. extremes in temperature or noise levels), inconsistencies in staff including staffing levels, awareness, approach and training.
Other facts about challenging behaviour
The most common aims of challenging behaviour are:
- Self-stimulation
- Gaining the attention of others
- Avoidance
In most people who have severe learning disability, these behaviours are not premeditated and are not designed purposely to upset.
Some people will show only one form of challenging behaviour whereas in others, 'clusters' of behaviours are evident. For instance, aggression, tantrums and destructiveness may occur together.
Research with children has shown that challenging behaviour can be reduced by teaching basic verbal or non-verbal communication that achieves an appropriate response.
Challenging behaviour can mask a person's true ability.
The behaviour can be a response to a person's environment or to the manner and approach of an individual carer; inconsistent styles can confuse thus impact on behaviour.
Caffeine and other food additives can trigger adverse mood effects and moderating intake can be considered.
Depression and cerebral palsy
Sometimes changes of mood can be related to depression in a person who has cerebral palsy. Depression is twice as common in women, with men being more likely to show anti-social behaviour. In some cases of depression, a review of the person's lifestyle can be helpful but for others, anti-depressant drugs or counselling may be necessary. If you or someone you care for is feeling depressed, it is important to consult the GP to discuss options.
Management of challenging behaviour in cerebral palsy
All health issues should first be explored and eliminated as a cause of the behaviour. A 'functional analysis' may then be carried out by appropriate professionals; they will analyse all aspects of the individual including the person's ability, condition, the environment and behaviours displayed. Therefore it is not only the behaviour which is assessed but all factors which may contribute towards it.
It is important to make realistic demands of the individual based upon a thorough assessment of cognitive ability (the intellectual level of the person), physical ability, personality, coping styles and individual needs.
Strategies for assessing challenging behaviour
1. Establish the nature of the behaviour:
- Is it really a problem?
- Is it an established behaviour?
- Is it a new behaviour?
2. Determine the facts:
- Is the information received about the behaviour reliable?
- Are there differences in carer perceptions of the problem behaviour?
- Does the behaviour only occur with certain carers?
3. Describe the behaviour:
- Nature, frequency, extent of the behaviour
- Is there a pattern or does it occur at certain times of the day?
- Under what circumstances does the behaviour occur?
4. Determine the outcomes of the behaviour:
- Escape from or avoidance of a threatening event?
- Rewards such as attention, food or drink?
- Interaction with others?
- Self-stimulation?
5. Examine the individual's history:
- Is there a history of the same behaviour?
- What were the previous interventions?
- Were the previous interventions successful?
- Were there unknown trigger factors?
- Under what circumstances did the behaviour occur?
6. Examine the medical history:
- Has there been a new diagnosis/illness?
- Has the medication been reduced or increased?
- Has the frequency of epilepsy increased?
- Is the medication used inappropriately?
- Has new medication been prescribed?
7. Determine changes to the environment:
- Has there been a change of carer or key worker?
- Has there been a change in daily routine?
- Has there been a change in activities?
- Has there been a change in the peer group?
- Has there been a change in frequency of family visits?
- Is a close family member ill/in hospital?
- Is there a lack of stimulation?
- Is there over-stimulation?
- Is fatigue present?
- Has there been any loss or bereavement?
- Is there pain or discomfort?
- What is the carer's attitude towards the individual?
- Has there been a change in noise level?
- Are there too many people around for the client to cope with?
Post-assessment response to challenging behaviour
Intervention strategies should be based upon the following:
- Ensuring the individual feels valued and listened to
- Making sure that where communication disorders exist, the individual has a method of communicating effectively
- Giving the individual other ways of communicating a need
- Reducing, where necessary, expectations of the individual and of care staff
- Determining triggers in the environment, e.g. noise or attitudes and beliefs in carers that might provoke or maintain challenging behaviour
- Helping the individual and their carers to recognise distress
- Developing the individual's coping strategies for dealing with problems
- Anticipating potential problems and intervening where appropriate e.g. by providing additional support, redirection to another activity or reducing noise level
- Training and support for care staff in prevention and management of problems
- Care staff sharing knowledge and expertise
- Provision of a variety of activities and materials that are appropriate and meaningful
- Ensuring appropriate levels of support
- Ensuring that all involved with an individual provide a consistent approach.
Summary
Challenging behaviour is often seen in people with cerebral palsy. Primarily moderate forms of challenging behaviour are most common; however behaviours can vary greatly with all degrees of ability.
It is reasonable to expect that with comprehensive assessment, appropriate levels of stimulation, communication techniques, carer support and consistency, encouragement and teaching of new coping skills, this type of behaviour can be managed effectively. It is important to set realistic goals for the individual and aim to increase the person's quality of life and minimise the impact of the behaviours displayed.
References
E Emerson (1995) Challenging Behaviour: Analysis and Intervention in People with Learning Disabilities. Cambridge University Press. Cambridge. ISBN 052140665X.
Further information
Challenging Behaviour Foundation
Tel: 01634 838739
Email: info@thecbf.org.uk
Website: http://www.challengingbehaviour.org.uk/
Information and support to parents, carers and professionals.
Mencap
Learning Disability Helpline
Tel: 0808 808 1111
Textphone: 0808 808 8181
Email: helpline@mencap.org.uk
Website: http://www.mencap.org.uk/
National organisation exclusively concerned with people with learning disabilities and their families. Range of services and support.
British Institute of Learning Disabilities (BILD)
Tel: 01562 723010
Email: enquiries@bild.org.uk
BILD produces a number of publications on challenging behaviour.
This document is for information purposes only.
For more information about cerebral palsy and Scope services
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