Understanding distress in people with severe communication difficulties: developing and assessing the Disability...

Area of Science:

• Intellectual Disabilities
• Palliative Care
• Communication Science

Background:

• Effective communication with individuals with profound communication challenges relies on carers recognizing diverse verbal cues.
• Carers often lack confidence in identifying distress, despite intuitive skills.
• Existing pain assessment tools lack evidence for specific signs, prompting the development of a broader distress tool.

Purpose of the Study:

• To develop and assess the Disability Distress Assessment Tool (DisDAT) for documenting distress and contentment in individuals with profound communication difficulties.
• To provide carers with a tool to validate their observations of patient distress.

Main Methods:

• The DisDAT was piloted with 16 carers and 8 patients.
• Quantitative and qualitative methods were employed with 56 carers and 25 patients in routine clinical settings.
• Semi-structured interviews and direct observations were used to explore and validate distress cues.

Main Results:

• Distress was understood broadly, not limited to physical pain, with no specific cues identified for particular causes.
• Each patient exhibited a distinct pattern of distress cues, often as a change from their baseline behavior.
• Carers found DisDAT simple, useful, and valuable for patient advocacy.

Conclusions:

• Distress is a clinically useful construct for care, distinct from pain, which lacks specific indicators.
• The DisDAT effectively captures patients' distress communication as perceived by various carers.
• The tool supports carers' intuitive assessments and provides evidence for patient needs.