Eina! Ouch! Eish! Professionals’ perceptions of how children with cerebral palsy communicate about pain in South African school settings : implications for the use of AAC

Abstract

Most children with severe cerebral palsy experience daily pain that affects their school performance. School professionals need to assess pain in these children, who may also have communication difficulties, in order to pay attention to the pain and support the children's continued participation in school. In this study, South African school professionals' perceptions of how they observed pain in children with cerebral palsy, how they questioned them about it and how the children communicated their pain back to them were investigated. Thirty-eight school professionals participated in five focus groups. Their statements were categorized using qualitative content analysis. From the results it became clear that professionals observed children's pain communication through their bodily expressions, behavioral changes, and verbal and non-verbal messages. Augmentative and alternative communication (AAC) methods were rarely used. The necessity of considering pain-related vocabulary in a multilingual South African context, and of advocating for the use of AAC strategies to enable children with cerebral palsy to communicate their pain was highlighted in this study.