Pain in children with Down syndrome: assessment and intervention by parents

The aims of this study were: 1) to describe how parents assess pain in their child with Down syndrome; and 2) to examine the relationship between pain assessment and decisions by parents to intervene to relieve pain in the child. Twelve parents of school-age children with Down syndrome (ages 6-12 years) were interviewed. Data analysis followed Spradley's Developmental Research Sequence (1979). This included domain analysis, taxonomic analysis, componential analysis, and theme development. Four themes emerged from the data analysis. Theme 1: Being sensitive to verbal and behavioral attributes of pain in the child. Parents reported that they assessed pain in their child with Down syndrome through the child's use of words to express pain, pointing or showing pain location, crying, changes in usual activities, and seeking closeness to the parent. Theme 2: Recognizing emotional and social responses to pain. Parents reported that emotional responses (e.g., anger, fear, frustration, acting out) were part of the pain expressions of their child with Down syndrome. Theme 3: Identifying differences in pain expressions between child and siblings. Parents used strategies to assess pain based on their beliefs that the child was less verbal, slower to complain, and less bothered by pain than siblings. Strategies included questioning the child to elicit self-reporting of pain and observing the child's behaviors. Theme 4: Making decisions to intervene. Parents reported that actions to relieve pain in their child with Down syndrome included more psychologic measures than physical measures, but otherwise no differences were noted in the actions taken for the child and the child's siblings.