RESUMO
BACKGROUND: Meaningful communication with people with profound communication difficulties depends on the ability of carers to recognize and translate many different verbal cues. Carers appear to be intuitively skilled at identifying distress cues, but have little confidence in their observations. To help in this process, a number of pain tools have been developed, but this sits uncomfortably with the lack of evidence that pain has any specific signs or behaviours. A palliative care team working with people with intellectual disabilities developed the Disability Distress Assessment Tool (DisDAT) to document a wide range of signs and behaviours of distress and when an individual is content. METHOD: The tool was piloted with 16 carers and 8 patients. It was then assessed using quantitative and qualitative methods, employing 56 carers in routine clinical situations with 25 patients, most with severe communication difficulties. Carers of 10 patients participated in semi-structured interviews exploring the signs and behaviours demonstrated by patients when distressed and when content. These same 10 patients were observed for distress cues during different activities. RESULTS: It became clear that distress did not have a common meaning among carers, but there was a clear understanding that distress did not just cover physical pain. The range of distress cues was wide, with no evidence that any cues were specific to particular causes. Although some distress cues were common between patients, each patient had a distinct pattern of distress cues. In addition, different carers identified a different range of distress cues, while the length of the relationship did not influence the number of cues identified. Most distress cues were a change from the norm, but some patients demonstrated distress as an absence of content cues. Carers found the DisDAT simple to use and useful, and several felt that DisDAT would have helped advocate for the patients in previous conflicts with clinical teams. CONCLUSIONS: There was no evidence that pain has any specific signs or behaviours. The preliminary and assessment phases showed that distress was a useful clinical construct in providing care. The DisDAT reflected patients' distress communication identified by a range of carers, and provided carers with evidence for their intuitive observations of distress.