The reported expression of pain and distress by people with an intellectual disability

Aims and objectives. To explore the assumption that people with ID are unable to communicate effectively about pain by examining the extent to which they were reported as using language and behaviour that was readily understandable to others to communicate pain as distinct from distress. Background. The healthcare needs of people with an intellectual disability (ID) are frequently overlooked or dealt with inappropriately. One proposed reason is the difficulty that such individuals have in communicating about their pain. Design. A postal questionnaire‐based mixed method design was used. Methods. Data from carer reports (n = 29) of the ways people with ID supported expressed pain and distress were categorised and analysed using descriptive statistics and thematic content analysis. Results. Nineteen of the 22 people who used verbal communication were reported to express pain using words that would be understandable to someone else, often accompanied by behavioural indications of the location of the pain. The language and behaviour that were reported as being used to express distress was more idiosyncratic, and there was little overlap between this and the ways in which pain was expressed. Conclusion. The results provide some challenges to the view that people with ID are necessarily unable to communicate effectively about their pain and support the view that pain and distress can be conceptually distinguished and differentially communicated by some people with ID. Relevance to clinical practice. The results suggest that many people with ID can be active participants in describing their experience of pain and that nurses should attempt to obtain this information directly from the individual during the diagnostic process. Nurses should be mindful of the distinction between pain and distress and should not respond to signs of distress in this group as being indicative of pain, without carrying out further assessment.