title: Behaviours caregivers use to determine pain in non-verbal, cognitively impaired individuals.
abstract: To create a checklist of behaviours that caregivers could use to determine pain in non-verbal individuals with mental retardation, 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.
authors.affiliation: Department of Psychology, Dalhousie University, Halifax, Nova Scotia, Canada.
authors.forename: P J
authors.initials: PJ
authors.lastname: McGrath
authors.forename: C
authors.initials: C
authors.lastname: Rosmus
authors.forename: C
authors.initials: C
authors.lastname: Canfield
authors.forename: M A
authors.initials: MA
authors.lastname: Campbell
authors.forename: A
authors.initials: A
authors.lastname: Hennigar
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D004827:Epilepsy / Q000150:complications; D005149:Facial Expression; D005260:Female; D006801:Humans; D008607:Intellectual Disability / Q000150:complications; D008297:Male; D009633:Nonverbal Communication; D010146:Pain / Q000150:complications / Q000175:diagnosis* / Q000523:psychology*; D015203:Reproducibility of Results