Caregivers' beliefs regarding pain in children with cognitive impairment: Relation between pain sensation and reaction increases with severity of impairment

Objectives: To determine whether caregivers of children with cognitive impairment (CI) have systematic beliefs regarding the pain of this special group of children and whether these beliefs are related to their general attitudes towards people with mental challenges, or their experience with, or knowledge about, children with CI. Participants: Sixty-five caregivers (52 parents and 13 health care providers) of children with significant CI. Measures: Caregivers completed the Mental Retardation Attitude Inventory-Revised and provided information regarding their previous experience and learning about children with CI. They also completed the Pain Opinion Questionnaire, indicating the percentage of children with mild, moderate, or severe/profound CI that they believe experience 5 facets of pain less than, the same as, or more than children without CI: sensation, emotional reaction, behavioral reaction, communication, and frequency. Results: Caregivers believed children's pain Sensation becomes greater, relative to children without CI, as severity of CI increases and that pain reaction is most consistent with pain sensation for children with severe CI. They also believed children with mild CI may over-react to pain. Caregivers' beliefs regarding pain were not influenced by their general attitudes about people with mental challenges or by their experience with children with CI, but those with more learning regarding children with CI believed that they experience pain less than children without CI. Conclusions: Caregivers have a priori beliefs regarding pain in children with CI that vary with level of cognitive impairment and pain facet. These beliefs could impact children's care.