Project information 

Pain, discomfort and challenging behaviour in children with intellectual disability

Funded by Cerebra from 2008 – 2011

Cerebra logoBackground

Recent research has shown that individuals with intellectual disability (ID) have a lower pain threshold compared to individuals without ID (Defrin, Pick, Peretza & Carmeli, 2004). The proportion of individuals experiencing health problems often associated with pain is higher in people with ID compared to the general population (Jansen, Krol, Groothoff, & Post, 2004; van Schrojenstein, Lantman-De Valk, Henny; Metsemakers, Job; Haveman et al., 2000; van Schrojenstein Lantman-de Valk,, Linehan, Kerr & Noonan-Walsh 2007). As pain is a personal and subjective experience it is often identified though self report. This dependence on self report as the ‘gold standard’ for identifying pain is problematic when concerning individuals with ID as these individuals are often unable to verbally communicate the pain that they are experiencing. This means that pain is difficult to recognise and diagnose in this population. Recent research has focussed on the development of valid and reliable pain assessment tools that can be used to overcome this problem.

The Non-Communicating Child Pain Checklist (NCCPC) (Breau, McGrath, Camfield, & Finley, 2002) is perhaps one of the most frequently used measures. This is an informant based measure that asks respondents to rate the frequency of observable behaviours that are associated with pain. For example, the observer rates negative vocalisations and facial expressions, levels of social behaviour and activity, body movements and physiological factors such as sleep and eating patterns. A similar but less comprehensive measure is the Face, Legs Activity, Cry & Consolability (FLACC) (Malviya, Voepel-Lewis, Burke, Merkel, & Tait, 2006), which also uses observations of behavioural indicators of pain in order to identify pain.

Not only is it important to identify pain and discomfort so that appropriate medical treatment can be provided but it is also important to alleviate pain because of its association with challenging behaviour in people with ID (Carr & Owen-DeSchryver, 2007). The presence of pain and discomfort has been shown to increase the frequency and severity of self-injurious behaviour (Breau et al., 2003; O’Reilly 1997), aggression and irritability (Horvath et al., 1999). Treating painful health conditions can also reduce the frequency of challenging behaviour (Horvarth & Perman, 2002).


The aims of the project were to (i) assess the social and internal functions of challenging behaviour in a group of non-verbal children with ID, (ii) describe the differences in the presentation of behavioural indicators of pain between individuals with environmentally functional challenging behaviour and individuals with challenging behaviour that is internally influenced and (iii) assess the inter-rater reliability and concurrent reliability of the NCCPC and the FLACC.


Parents and teachers completed the NCCPC and FLACC pain assessment measures and a range of questionnaires assessing behaviours associated with pain such as mood and activity levels. The Vineland Adaptive Behaviours Scale was used to get a measure of ability for all participants. Over the phone interviews were also completed to provide a description of the participants’ challenging behaviour. Some participants were included in a day of assessments which involved the researcher conducting a set of functional analogues and several FLACC observations.

40 children with ID aged 5-15 years were included in the study, 30 of whom were visited for a day in order to conduct functional analogue assessments.

Progress to date

Data collection is now complete for this project. The researcher visited 30 children in order to complete functional analogue assessments and collected questionnaire and interview data from a further 10 families. We are currently analysing the information and plan to write up the findings within the next year.

Contact details

Kate Eden
Email: kee854@bham.ac.uk