An evaluation of how parents of people with Down syndrome perceive pain in their children

Objective: To evaluate caregiver's ability to perceive pain in their children with Down syndrome. Method: Data were gathered from parents of children with Down syndrome in French and English samples in Quebec and Ontario respectively, using the Oral assessment-in-Down-syndrome (OADS) questionnaire, the non-communicating-children's-pain-checklist (NCCPC) and additional questions related to the last pain. Results: Parents who reported difficulty perceiving pain also observed more behaviours of pain compared to those reporting no difficulty. Age of children was a determinant in the level of difficulty that parents had perceiving pain, with decreasing difficulty from 68% to 31% as age increased. Severe pain, long duration ofpain and pain associated with serious diseases were related with higher number ofbehaviours chosen. Conclusion: The association ofpain perception and number ofbehavioUfs manifested may indicate that the NCCPC is useful to determine the level of difficulty that parents have perceiving pain in their children with Down syndrome