| Background |
In
the late 1990’s a combined learning disability and palliative
care team at Northgate Hospital in Northumberland, UK, began to
explore the issue of identifying distress in people with severe communication
difficulties. They made three observations: |
| • |
Lay
and professional carers were skilful at identifying distress, but
had little confidence in that skill. |
| • |
This
lack of certainty in what carers were observing made it difficult
for them to advocate for the person with the communication difficulty
when faced with a challenge to their observation. |
| • |
A
number of pain score tools existed for people with cognitive impairment
despite the absence of any evidence in the literature that pain produced
any specific signs or behaviours. |
| The
team gradually realised that what was needed was the development of
a process that |
| 1) |
Identified
distress, rather than pain |
| 2) |
Documented
signs and behaviours when a person was content and when they were
distressed |
| 3) |
Helped
to put the distress into context by providing a checklist that suggested
possible causes of distress |
The
team piloted an early version of DisDAT in 2001 and in 2003 completed
a validation study under the auspices of Northumbria University which
was published in 2006 (see references). These studies found that:
- distress signs and behaviours are not specific to the cause
- each person has their own ‘vocabulary’ of distress signs
and behaviours
- teams pick up more signs and behaviours than any one individual
- DisDAT documents distress accurately and carers find it easy to
use |
| |
| |
| |
| |
| |