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Behavioural problems in children with developmental disabilities 

Challenging behaviour and developmental disabilities

Challenging behaviour is a common feature of developmental disabilities in childhood and adolescence. Although behaviour problems also occur in typically developing children, and are often absent in many children with developmental disabilities, behaviour problems are three to four times more common in children with developmental disabilities in comparison to those without. Furthermore, behaviour problems in children with disabilities are more severe and persistent, and appear to contribute to higher levels of parental stress and lower levels of wellbeing in comparison to parents with non-disabled children.2,3,4 Research has also shown that challenging behaviour has a number of negative consequences for children, including rejection from peers,5 poor academic outcomes,6 and increases in the risk of children becoming recurrent juvenile offenders.7

How challenging behaviours are caused and maintained

Children with developmental disabilities often have communication difficulties, and so may display challenging behaviour as a way of communicating their needs and wishes.8 However, not all children with disabilities display challenging behaviour. Therefore, a variety of other factors (some directly and some indirectly related to the disability itself ) are likely to contribute to the development of challenging behaviours. A variety of these factors have been identified in children with and without developmental disabilities, such as living in disadvantaged areas, coercive or poor parenting interactions (such as harsh, rigid, or inconsistent discipline practices),9 family processes, such as marital conflict and parental psychopathology (particularly maternal depression and high levels of parenting stress),10 and poor expectations of the child.11 Although it appears unclear whether challenging behaviour causes these factors, or whether these factors cause challenging behaviour, it is likely that both feed each other in a cycle. For example, evidence suggests that parental stress,12 and parental behaviours reinforce the child’s challenging behaviours,13 and inadvertently maintain them (as illustrated in the diagram below).

The importance of early intervention

The growing prevalence of challenging behaviours, together with their negative impact, highlights the need for support for parents of children withsuch behaviour problems. From decades of research, it has become apparent that interventions should ideally begin early in a child’s life (preferably  before the age of 4 years).14 As this is a critical period for optimal learning,15 treatment at this stage could prevent or lessen the risk factors (highlighted above) associated with challenging behaviours before they begin to strongly influence a child’s behaviour. In the long-term, this approach has the potential to prevent untreated challenging behaviours, becoming entrenched,16 less manageable behaviour disorders.17

The behavioural approach to challenging behaviour

The behavioural approach is based on the assumption that behaviour, including challenging behaviour, is learned from the child’s environment and is maintained as a consequence of reinforcing responses. Children learn to behave in particular ways because those behaviours have been rewarded (or reinforced) in the past, increasing the likelihood that the particular behaviour will be repeated in the future. This process is known as operant conditioning.18 For example, a child who screams in a public place and who is then given a sweet to quieten down is likely to repeat such behaviour, since s/he was rewarded the first time. Eventually, these behaviours become over learned and automatic. Furthermore, the Social Learning Theory highlights the fact that children also learn by observing and imitating the behaviour of those around them.19 The strength of this approach is its principle that if behaviours are learned, then they can be unlearned. This knowledge has been used to develop a number of interventions and programmes with a growing evidence-base, demonstrating that behavioural techniques can successfully lead to reductions in challenging behaviour and an increase in appropriate behaviour,20 including in children with developmental disabilities.21 Children with disabilities such as autism learn much less easily from the environment. Behavioural interventions set up the environment and teach skills to enable children to learn more easily.

The importance of parent and carer involvement

The literature reviewed so far has identified the important and influential role of family factors and parenting in children’s development. Indeed, social learning models emphasise the bidirectional and reciprocal nature of parent-child interactions surrounding challenging behaviours.22 As a result, parental involvement is considered to be a very important element in behavioural-based early interventions. Parents have the vital role of enabling their child to generalise appropriate behaviours and skills by reinforcing them within a variety of different settings and situations.

Behavioural-based parent training programmes

The powerful influences of both behavioural principles derived from social learning theory and the parental figure, have led to the development of behavioural-based parent training programmes. This paper has reviewed the most well-known programmes, which attempt to provide parents with the knowledge and skills to support their child’s development and behaviour within a variety of settings. These methods aim to reduce, manage, and/or prevent challenging behaviour, increase appropriate behaviour, increase positive parent-child interactions and communication, increase parental coping skills and reduce parental stress. Although there are slight variations in the approaches of each programme, most encourage the use of behaviour diaries to record the child’s behaviour patterns, to recognise the function of the challenging behaviours, to identify any potential triggers, and to monitor the child’s progress. Doing so then makes it easier to use the behavioural strategies based on operant conditioning to change the behaviour.18 Contemporary behavioural interventions no longer use punitive punishment strategies to address inappropriate behaviours. Indeed, many children with autism do not necessarily understand the connection between their behaviour and the punishment given.23 Challenging behaviours are instead perceived as errors that should go  unattended to by the parent. Those behaviours become non-functional to the child as a result.

Each parent training programme targets different types of developmental disabilities:

 Autistic spectrum disorders

 Applied Behavioural Analysis (ABA)24

The EarlyBird programme25

Functional Communication Training (FCT)

 Severe learning disabilities  The Star Approach
 Conduct disorders The Incredible Years programme 26

Triple P-Positive Parenting programme 27

Developmental disabilitiesconduct disorder programmes adapted).

Parent Training (IYPT-DD)28

Stepping Stones Triple P (SSTP).29

Examining the research

Studies investigating the efficacy of these behavioural parent training programmes have generally shown positive outcomes for both parents and for child behaviour, and have shown good generalisation effects across settings and behaviours (ABA30,24,31; EarlyBird32,33; Incredible Years34,35,28; Triple P36,37,38). However, the conclusions from many of these studies are often limited by  a number of methodological problems. Future research should use larger samples of participants, use control or comparison groups, and use direct observation methods, in addition to parent self-report measures if they are to be produce reliable results. Longer follow-up data (more than six months) should be also obtained in order to establish whether the positive effects of the programmes can be maintained in the long-term. The need for rigorous studies following evidence-based recommendations is imperative in order to help parents and professionals to decide which approach will be more effective at meeting the child’s needs.39 Nevertheless, even whilst taking the limitations into account, there is already a considerable amount of evidence to support the proposition that teaching parents positive parenting and consistent behavioural skills results in significant improvements in the majority of children with challenging behaviour.40,41

Remaining unmet needs for families and recommendations for the future

Although many important factors have been identified and many helpful parent training programmes have been developed and successfully implemented, a number of the needs of many families with developmentally disabled children remain unmet:

1. Poor service provision

Most families do not receive evidence-based behavioural interventions. Indeed, research exploring access to intervention has found that 55% of adults and children with intellectual disabilities and behaviour disorders were only receiving informal interventions (i.e. poorly recorded and typically not evaluated) and when formal interventions were in place, 60% only included the use of behaviour controlling drugs.42

2. Difficulties accessing parent training programmes

Some families are excluded from parent training programmes because;

• They do not meet the specific inclusion criteria for a particular programme (e.g. because their child is too old, because the programme does not address the child’s specific disability, or because the behavioural problems or developmental disabilities are either too severe or not severe enough). For example, the EarlyBird programme only includes children under 5 years with a diagnosis of autistic spectrum disorder. However, some children do not even receive a diagnosis of autism until they are past this age.43 Although there is a wealth of evidence to support the advantages of implementing interventions at an early age, this focus should not equate to a lack of support for older children and adolescents, regardless of whether their behaviour problems have become entrenched. With regard to specific diagnosis, there also appears to be a lack of intensive parent training programmes specifically for children with learning disabilities and challenging behaviour.

• Parent training programmes can be very long and intensive and can, therefore, be very expensive, meaning that most families cannot afford the costs of the programme. Indeed, ABA programmes can range from £8,000 - £25,000 a year.44 In some cases, local education authorities are able to fund part, or all of a programme.

• Many families who seek the programmes are often placed on long waiting lists, due to limited resources. With regard to the EarlyBird programme, waiting for enough families in an area for a programme to run (six families per programme) has often led to long waiting times, which has sometimes meant that children were then too old for the parents to be eligible to attend.33 Condensed versions of the programme which would not require the usual six families in order for the programme to start have been recommended in order to increase access. Providing weekend and evening courses and child care would make it easier for some families who have work or family commitments, to attend.

• Some families may be geographically disadvantaged from support services or parent training programmes and, therefore, may be less likely to refer themselves for help. The recommended condensed versions of the programmes could also be run in more rural areas.

3. Behavioural-based interventions under-emphasise emotions

Behavioural approaches tend to place little or no emphasis on emotional problems, despite research suggesting that emotional problems are more prevalent in people with developmental disabilities than in the general population.45 Indeed, children with developmental disabilities may be more likely to express their emotional problems externally through challenging behaviour.46 This suggests that addressing the overt behaviour problems may not necessarily address the underlying distress. Perhaps future interventions could also attempt to address any emotional aspects of behaviour problems, which may be more prevalent or apparent in older children and adolescents.

4. Some parent training programmes under-emphasise parental stress and psychological factors

Despite the fact that the literature has identified that parental stress contributes to the child’s challenging behaviour itself, many of the parent programmes tend to over-emphasise the aim of reducing the frequency of challenging behaviours,47 with considerably less importance placed on reducing parental stress and increasing parental wellbeing.48 Although the reduction in challenging behaviour is likely to reduce parental stress,  there has been somewhat less focus on directly targeting parental stress e.g. by increasing parents’ coping skills to manage the stresses of having a developmentally disabled child. This seems particularly important considering the research has highlighted the fact that parents of developmentally disabled children experience significantly more stress.

Some parenting programmes have additional components designed to specifically address parental risk factors, including stress, depression, anger problems and marital discord, by promoseems particularly important considering the research has highlighted the fact that parents ting effective coping and communication strategies.31 One study added an ‘enhanced’ training component to a parent programme with the aim of increasing parent coping skills.38 However, there was only partial evidence that the enhanced component was superior to the standard component for improving parental coping, competence and satisfaction. Other studies have shown that parental stress levels,33 and depression,28 actually increase for some parents whilst participating in parent training programmes. This conflicts with other evidence which has shown that strengthening parents’ resources to cope with the demands of raising a child with a disability promotes positive caregiver interaction and enhances positive parental perceptions of child functioning.49 The researchers who found the negative impact on parental wellbeing,33,28 suggest that some of the requirements of the intensive programmes, such as the need to make child care arrangements and the weekly ongoing discussions surrounding their children’s behavioural difficulties, may increase parental awareness of their child’s and family’s situation, increasing stress and depressive symptoms in some mothers. Perhaps then, the additional support needed to address parental stress and depression may be more successful in a context which  is separate to that of the parent training programme, where there would be less focus on the child’s challenging behaviour.

Other studies have revealed that challenging behaviours of developmentally disabled children contribute to significantly high levels of hopelessness,50 and significantly lower levels of optimism 51 among parents. Considering both hope and optimism contribute to parental wellbeing and perceived coping ability, parent training programmes could aim to enhance these cognitive styles by focusing on parents’ belief systems, perhaps through using principles drawn from Cognitive Behaviour Therapy (CBT). Indeed, researchers have recognised that the significant role of psychological factors in the adjustment to the child’s disability and family coping with challenging behaviour are often dismissed.52 As  a result, a ‘psychosocial model of disability-related child behaviour problems’ has been produced,52 which takes both social and psychological factors into account. This approach could be an area of further research and could form the theoretical basis of parent training programmes.

 5. Families with complex difficulties who need additional support

 Some families, particularly families with complex difficulties and those who do not seek help for their child’s challenging behaviours or conduct problems, are more likely to either fail to accept or to attend the training programmes they are offered.53,54 Some parent training programmes such as the Incredible Years programme and the Triple P programme can be successfully used with disadvantaged, complex, or high risk families who either do not engage in, or drop out of other programmes. However, even for families who do engage, the parent training programmes will not necessarily work for every family.

Indeed, research has discovered that if mothers were highly critical (> 10 critical statements) at the post-treatment assessment, their children showed an 80% likelihood of having clinically significant problems at school at the 2-year follow-up.55 Thus, although parenting training does produce reductions in critical parenting styles, it seems that for some families this is not always enough to reduce negative parenting behaviours. As a result of this finding, the researchers suggest that negative parenting may need to be brought below a critical threshold within the intervention in order to reduce the risk of continued conduct problems. Parents who, at post-treatment, are still at risk on this indicator could receive further preventive intervention to lessen the risk of their child’s continuing conduct problems.

 Conclusion

Although much of the research investigating the efficacy of the parent training programmes reviewed in this paper is still in its infancy, the research conducted so far has clearly demonstrated that these programmes can contribute to the reduction of challenging behaviours in children, both with and without developmental disabilities. After taking the above unmet needs into consideration, it is clear that many improvements need to be made with regard to increasing access to the evidence-based, behavioural-based parent training programmes, and incorporating important components, both within and alongside the programmes to ensure that families’ needs are met and to further increase the efficacy of these programmes.

The Triple P-Positive Parenting programme sets a promising example, as it appears to have the potential to meet many of the currently unmet needs identified within this paper. The flexibility of Triple P’s delivery options make it a cost-effective programme, offering only as much contact and assistance as parents need. Its multi-level approach means each programme is tailored to suit each family’s needs, the severity of the child’s problem behaviours, and their impact on family functioning. It also applies to a broad age range; from birth to adolescence. The Triple P programme has been well-received by many different socio- economic and cultural groups, and does not require a high level of literacy, as the materials are designed for the reading level of an average 11-year-old. Where literacy is a major difficulty, the programme uses DVD’s and behaviour rehearsal so that it can be delivered without reading material. Furthermore, the programme has been successful for complex families (parents with stress, depression, marital problems, or with disadvantaged backgrounds). It offers support to children with behavioural problems or emotional problems, with or without disabilities. The programme can also be delivered in a variety of formats, including face-to-face, group, telephone-assisted or self-directed programmes, enabling parents who have busy lifestyles or who live in remote areas to participate.

However, limited resources mean it may be an impossible task to provide intensive behavioural parent training programmes to all parents of children with developmental disabilities and challenging behaviour. Furthermore, some families may not be able to commit to a long intensive behavioural intervention. This implies that a significant amount of families in need will go without support for their child’s challenging behaviour. This highlights the need for information and practical advice for managing challenging behaviour to be as widely available as possible. Indeed, as part of the multi-level approach of the Triple P programme, Levels 1 and 2 provide all interested parents with access to useful information about parenting, and advice for specific parenting concerns.

These resources (reading materials and DVDs, with practical step-by-step instructions, advice, examples of implementation along with a variety of useful contacts) could be made widely accessible within communities, for families in need of advice. Indeed, parents generally receive little preparation beyond the experience of having been parented themselves, and support is usually only offered or accessible when behaviour problems have already become difficult to manage. Perhaps this information could be disseminated to parents from mainstream services and charities, as a form of self-help package to target hard to reach families (for example, disadvantaged families who are less likely to actively seek help for the children’s behaviour problems).

Indeed, the use of internet and media interventions has the potential to increase any programme’s potential reach, extending to hard to access groups. These materials could also enable parents on waiting lists for parent training programmes to increase their knowledge of the behavioural strategies and to practice the skills to help prepare them for the programme (potentially enhancing the positive outcomes gained from the programmes). Evidence shows that the positive outcomes from the programmes are not always maintained once the specialist input is withdrawn. Therefore, ongoing family support groups or refresher sessions after the programmes could assist parents to maintain the progress they have made.56

Wherever possible, parents of children with disabilities should be able to access parenting advice and support through mainstream services, as well as through specialised services for their child’s behaviour problems.29

This information is not meant to replace the advice of any physician or qualified health professional. The information provided by Cerebra is for information purposes only and is not a substitute for medical advice or treatment for any medical condition. You should promptly seek professional medical assistance if you have concerns regarding any health issue.

 

Page last updated: 24/04/2013 11:01 
 
 
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