Pain assessment in people with profound intellectual and multiple disabilities; a pilot study into the use of the Pain Behaviour Checklist in everyday practice.
The Pain Behaviour Checklist works for kids with PIMD but misses adult pain—adults show 'tense face' and 'groaning' more, so adjust your observation criteria.
01Research in Context
What this study did
The team tested the Pain Behaviour Checklist (PBC) with 20 people who have profound intellectual and multiple disabilities.
Half were children and half were adults.
Caregivers filled out the checklist during normal days and during known painful events like ear infections or dental work.
What they found
The checklist worked well for kids. It caught pain reliably and matched what doctors saw.
For adults, the checklist missed a lot. Adults showed pain with 'tense face' and 'groaning' more than kids, but these signs were not on the original list.
So the tool needs different items for different ages.
How this fits with other research
Chou et al. (2007) built DisDAT, another carer tool for distress in nonverbal clients. Like Estes et al. (2011), they found no single sign fits everyone. Both studies say you must tailor cues to the person.
Spanoudis et al. (2011) asked parents about pain coping, not pain signs. They found older mental age brings more coping styles. This may explain why Annette's adult checklist failed: adults may hide pain in ways the child-focused list cannot see.
Lyons (2005) created the Life Satisfaction Matrix for the same population. All three papers agree: standard tools need local tweaking for profound disability.
Why it matters
If you serve clients with PIMD, do not use one pain list for all ages. Add 'tense face' and 'groaning' for adults. Test your own short list with caregivers for one week and keep only the items that match medical findings.
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02At a glance
03Original abstract
Because of their physical and general health problems, people with a combination of profound intellectual and severe or profound motor disabilities (PIMD) are at risk of pain-related medical conditions. They are fully dependent on support professionals for the detection and accurate interpretation of nonverbal pain behaviour. These professionals can use a recently developed instrument, the Pain Behaviour Checklist (PBC), to assess pain in post-operative situations for children with PIMD. It is not yet known whether this instrument can also be used to identify pain in both children and adults in daily care situations. The aim of this pilot study was therefore threefold: to establish (1) whether the PBC can be used to identify pain in day-to-day situations in people with PIMD, (2) which behaviours are most frequently identified as indices of pain behaviour, and (3) whether there is a difference in pain-related behaviour between children and adults. In total, 32 people with PIMD participated in the study (16 children with a mean age of 10.4 years and 16 adults with a mean age of 46.7 years). Each participant was videotaped twice during a planned care moment in which we assumed that pain was prevalent. During each observation, pain was scored by the direct support professional using the Visual Analogue Scale (VAS) and by two trained independent observers using the PBC. The reliability (both intrarater and interrater) of the PBC was analysed by calculating Spearman's rho. Validity was analysed by correlating the PBC with the VAS scores; Phi was calculated for both children and adults. Finally, positive scores on each separate item of the PBC were analysed in adults and children in order to discover possible differences between pain behaviour in each group. The interrater reliability of the PBC is .63 (p<.05) and the intrarater reliability was .88 (p<.05). Phi, as a measure of the agreement on pain/no pain between the VAS and the PBC, is .75 (p<.05) in children and .28 (p<.05) in adults. Adults were more likely to exhibit the pain-related behaviours of 'tense face', 'deeper naso-labial furrow' and 'moaning and groaning', whereas children made more 'penetrating sounds of restlessness'. Based on this pilot study, we conclude that the PCB's reliability when used in daily practice with people with PIMD is satisfactory. However, although the validity is good for children, it appears insufficient for adults. It seems that children display different pain-related behaviours than adults. More research is needed into the proper assessment of pain in people with PIMD, especially adults, by health care professionals in daily practice. We also need a better understanding of the extent to which the knowledge and experience of care professionals play a role in detecting (chronic) pain behaviour in both children and adults and of how people with PIMD cope with pain.
Research in developmental disabilities, 2011 · doi:10.1016/j.ridd.2011.02.020