Behaviours caregivers use to determine pain in non‐verbal, cognitively impaired individuals

To create a checklist of behaviours that caregivers could use to determine pain in non‐verbal individuals with mental retardationa, primary caregivers were recruited by the Division of Neurology and interviewed using a semistructured interview. Caregivers of 20 individuals were asked to recall two instances of short, sharp pain and two of longer‐lasting pain and describe the individual's behaviour. Transcribed interviews were reviewed by two of the authors and sets of non‐overlapping items were developed. Average age of the 20 individuals was 14.5 years (range 6 to 29 years) and language level averaged 10 months as scored by the MacArthur Communicative Development Inventory. All had mental retardation and 18 had epilepsy and spastic quadriplegia or hemiparesis. Thirty‐one behaviours were extracted from the interviews. The specific behaviours were often different from one child to another but the classes of behaviours (Vocal, Eating/Sleeping, Social/Personality, Facial expression of pain, Activity, Body and limbs, and Physiological) were common to almost all children. Reliability of using the checklist on interviews was very good (kappa=0.77). The checklist has excellent content validity and will be useful for caregivers of cognitively‐impaired, non‐verbal individuals to report on pain behaviours. Further research is needed to additionally assess its validity and sensitivity.