OBJECTIVE: To develop an observational measure, based on caregiver reports, to assess chronic pain in children with significant cognitive impairment who are unable to communicate verbally. The issue of whether these children share a core set of cues to express pain was investigated. METHODS: Specific pain cues were elicited during detailed interviews with 29 female caregivers of noncommunicating children. Pain cues were categorized by a two-stage Delphi process and cues indicating severe and definite pain identified. RESULTS: Six cues from five different categories were used by 90% of caregivers to identify definite or severe pain in their child. CONCLUSIONS: Although the specific expression of pain may be very individual, there is a shared set of core pain cues. The relationship between these cues and evidence of pain and distress is discussed.
OBJECTIVE: To develop an observational measure, based on caregiver reports, to assess chronic pain in children with significant cognitive impairment who are unable to communicate verbally. The issue of whether these children share a core set of cues to express pain was investigated. METHODS: Specific pain cues were elicited during detailed interviews with 29 female caregivers of noncommunicating children. Pain cues were categorized by a two-stage Delphi process and cues indicating severe and definite pain identified. RESULTS: Six cues from five different categories were used by 90% of caregivers to identify definite or severe pain in their child. CONCLUSIONS: Although the specific expression of pain may be very individual, there is a shared set of core pain cues. The relationship between these cues and evidence of pain and distress is discussed.