According to the Foundation for People with Learning Disabilities “between 5-15% of people with Learning Disabilities show behaviours which present a significant challenge for those caring for them” and this increases for people with severe or profound and multiple learning disabilities (in this paper referred to as profound intellectual and multiple disabilities (PIMD).

Using Emerson’s definition of challenging behaviour this means that upwards of 75,000 (5% of 1.5 million, NHS figures) people in the UK endanger themselves or others or don’t experience ordinary community facilities.

Are the effects of challenging behaviour being taken seriously enough by carers and are people who exhibit challenging behaviour being supported in a planned and consistent way?

This paper from the Netherlands looks at whether challenging behaviour is addressed formally in day to day practice through analysis of individualised comprehensive service plans (IPs). The authors state that in the Netherlands IPs are mandatory and are the only document used to formulate support for individuals.

Methods

The authors selected a sample, from an existing database, of 25% of adults and children found to have the “most severe” challenging behaviour. The behaviour was scored using a Dutch version of the Behaviour Problem Inventory (BPI-01; Rojahn et al., 2001). After gaining consent, from parents/legal representatives, this gave them 30 participants in the study, 20 male and 10 female. The seven children and 23 adults were aged between 2 and 65 and they were from 6 care facilities across the Netherlands.

The authors then systematically analysed the individual’s IPs to see if the challenging behaviours that had been scored on the BPI were mentioned and, if they were mentioned, whether there was information about frequency, setting and consequence. They then looked further to see if interventions or methods of support were in place and whether goals had been formulated. One person did all the analysis of the IPs to ensure consistency.

Results

The study found that only just over half of the challenging behaviours identified by the BPI were described in the IPs.

They found that there was a significant association (using chi-square test) between severity of the behaviour and whether there was a description in the IP (behaviour that was perceived as more severe was more likely to be described) and also between type of challenging behaviour and description.

Stereotypical behaviour that was marked using the BPI was consistently underrepresented in the IPs, for example about 40% of stereotypical behaviour was described compared with around 60% of self-injurious and aggressive/destructive behaviour.

The approach taken to respond to the challenging behaviour was described for about 53% of the behaviours overall but this dropped to 6% for stereotypical behaviour.

Goals to reduce or understand more about the challenging behaviour were found to be missing in a large proportion of the IPs, they were present for

• Self-injurious behaviour 20%,
• Stereotypical behaviour 4.4%,
• Aggressive/destructive behaviour 11.6%.

Conclusions

The authors put forward several possible reasons why challenging behaviour was not sufficiently described and addressed in the IPs.

These were:

• staff not judging the behaviour as serious enough to write about
• plans being seen as a paper exercise and so not being used to plan approaches to challenging behaviour
• staff seeing the challenging behaviour as part of what the person does and so not seeing the need to address it
• lack of knowledge about challenging behaviour and its consequences.

Strengths and limitations

The authors themselves point out that the sample that they used was not a random sample and was a quite small sample. They felt that although this was a limitation it might be expected that the clients with the challenging behaviour judged as most severe would be the ones most likely to have challenging behaviour described in their IPs, hence expanding the survey to those judged to have less challenging behaviour could produce even more negative results.

The authors chose to study IPs for people across a very large age range, this may have had an effect on the results as the identification and marking of challenging behaviour shown by young children would be difficult and so maybe not done as reliably as for adults.

In the introduction to the paper the authors stated that in order “To gain a better understanding how daily practice responds to challenging behavior, we constructed a study to determine
which measures are actually taken in daily practice to prevent or diminish challenging behavior in children and adults with PIMD.”

There is a possibility that challenging behaviour was being addressed well in the care settings but not documented well. Or was being documented in a less formal document, which may have been in an easier format for staff.

There was no indication from the paper that the researchers had visited any of the care facilities to make any direct observations and to see if this was the case and so it could be argued that they have not actually determined what measures are being taken in daily practice, as they set out to do.

Summary

There was a fairly clear reduction in the amount of description found relating to stereotypical behaviour. This could indicate that lots of staff do not regard this sort of behaviour as challenging, possibly as it does not affect staff as much as other behaviours.

However, this could also because they do not see the effect on the person. For example, a staff member might regularly take a client with PMLD who is a wheelchair user to a variety of normal places in the community and so not judge their stereotypical behaviour to limit their opportunities.

Staff may not realise that the client is not really “present” or experiencing the places they go to because they are so absorbed by their stereotypical behaviour.

It would be hard to replicate this research in the UK as there is not a clear equivalent document to the IPs in the Netherlands. People have Needs Assessments, Independence Plans, Behaviour Support Plans, Person Centred Plans etc., none of which seem to be as comprehensive a document as the ones described in this study.

There is also no uniform format to these documents countrywide or agreement about what should be in plans, different local authorities and private care companies use different formats so it would be difficult to know which documents to focus on. IPs also seem to be across people’s whole life span.

Most people would agree that it is important to have descriptions of challenging behaviour, support measures and plans written down formally to ensure consistency of approach; this study shows that services in the Netherlands, despite their system of single mandatory plans for people, still have a long way to go to achieve this.

Staff would seem to need more guidance and training on challenging behaviour and the positive effects of a formal, detailed written approach.

Given the less clear system for plans we have in the UK the situation here could be even worse.

Links

Poppes P., Van der Putten A.A.J. & Vlaskamp C. (2014). Addressing Challenging Behavior in People With Profound Intellectual and Multiple Disabilities: Analyzing the Effects of Daily Practice. Journal of Policy and Practice in Intellectual Disabilities 11 No.2, 128–136 [abstract]

References

Emerson E. (2001). Challenging behaviour: Analysis and intervention in people with learning difficulties. Cambridge, UK: University Press.

Foundation for people with learning disabilities Information pages

NHS What is Learning Disability? 

Rojahn J., Matson J. L., Lott D., Esbensen A. J. & Smalls, Y. (2001). The Behavior Problems Inventory: An instrument for the assessment of self-injury, stereotyped behavior, and aggression/destruction in individuals with developmental disabilities. Journal of Autism and Developmental Disorders 31, 577–588