Abstract
Pain is often unrecognised and untreated in people with ID. In the absence of self-report, the use of structured behavioural pain assessment tools is best practice for identifying pain in this group. The aim of this research was to explore the utility of the Abbey Pain Scale and The Distress and Discomfort Assessment Tool (DisDAT) for use by residential support workers and family members of adults with severe or profound ID who live in group home settings. Participants were 17 residential support workers and six family members and provided information about 23 adults with severe or profound ID. Participants completed one of the two tools every 2 weeks for 3 months and indicated whether they thought the individual was content, distressed or experiencing pain. In total, 131 completed tools were returned (80 Abbey Pain Scales and 51 DisDATs). The results indicated that higher total pain scores on the Abbey Pain Scale appear to correspond to a report of pain or distress. A range of behaviours from the Abbey Pain Scale were reported to be present when the individuals with ID were reported to be in pain, such as vocalisations and facial expressions, but these and other behaviours were also observed when the individual was reported to be distressed. Similarly, using the DisDAT, there were behaviours that were present when individuals were reported to be experiencing pain which, for the most part, were also reported when individuals were reported to be distressed. Although neither of the tools appeared to distinguish between pain and distress, it is evident that both tools have utility in the assessment of distress. This is a promising finding as it may be that the tools can be used to signal that an individual with severe or profound ID is distressed and that pain is a factor to be considered.