“Ouch!”—Selecting pain vocabulary for kids who use AAC

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A couple years back, we reviewed this study that developed a list of pain vocabulary for kids who use AAC. Quick refresher on their rationale—all kids have and need to express pain, but for kids who use AAC, this can be challenging since we often don’t know what they want to say when in pain. So the authors asked children, parents, teachers, and adult AAC users how they would respond in painful situations, and compiled a response list. Makes sense, right?  This list should be widely used!  Well, not so fast. There were some caveats, including that the list was drawn only from participants in South Africa.

Well for those of you not in South Africa, do I have good news for you! The same authors took that vocabulary list, and combined it with 16 other studies of children’s pain expressions. The studies included direct quotes from 2,683 children who spoke six different languages, and came from eight different countries.

They took the pain words and phrases, divided them into descriptive themes and categories (e.g., indicates location of pain, or requests treatment), broke them down into single words, and separated these words into core (“you”), pain-related fringe (“medicine”), and other fringe (“movie”).

The end-result? The review lists 60 pain-related words that children use most often to talk about their pain (see paper Appendix), as well as some useful categories of words that we might not initially consider when selecting vocabulary (e.g., “employing fake bravery”).

 So, now can we feel confident using this list with kids on our caseload?  I’d say so, but of course with some awareness of its limitations. It is a great starting point, but as the authors point out—when selecting vocabulary for each individual child, we must consider his/her individual context/needs. Also, the review only included typically-developing children, so we can’t ignore that we may be missing out on some vocabulary unique to kids with disabilities, and specifically those who use AAC.

 

Johnson, E., Boshoff, K., & Bornman, J. (2018). Scoping review of children's pain vocabulary: Implications for augmentative and alternative communication. Canadian Journal of Speech-Language Pathology and Audiology, 42, 55–68.