Journal of intellectual disability research : JIDR
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J Intellect Disabil Res · Apr 2007
Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT).
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. ⋯ 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.