How many times have you been in an IEP meeting with the parent of a minimally-verbal child, who says, “I just want him to be able to tell me when he’s hurting…”? And you want to cry, because—goodness sakes—every kid needs to be able to tell someone when they're hurting!
The authors of this study help tackle this very issue. They recruited nearly 200 participants (children, parents, teachers, and adult AAC users) to respond to hypothetical situations designed to elicit pain responses (e.g. having a medical procedure, or running into a thorn bush). The authors took the resultant language, compiled a list of the most frequently-occurring pain-related words and phrases, then divided these into descriptive categories and subcategories to analyze target types (e.g. vocabulary to describe pain, to direct others’ actions, to describe pain location, etc.). The result is a list of core and fringe vocabulary most likely needed for a young AAC user to communicate pain.
Now—before you head straight for the list—note that it was compiled from participants in South Africa. The study was done in English, but cultural differences make it impossible to simply take the list and apply it to your caseload if you're not working in South Africa. For example, an American child says “band-aid”, whereas the list calls it a “plaster”. And there are non-English words in there, too, such as “Eina” (the Afrikaans word for ‘ouch’).
Nonetheless, the cultural differences do not entirely limit the utility for readers from other English-speaking countries. First, this study provides a strategy for collecting data in order to inform AAC programming. Their data confirmed that children and adults use different words to describe pain. Thus, it’s not appropriate for an SLP to rely upon input only from adults when programming devices. Second, you’ll find the categories and subcategories quite useful for ensuring that you’re considering all types of communication inherent to these situations.
Readers may be wondering why these types of words aren’t already in more devices. The authors predict it may be because, “... activities that were unlikely to result in painful experiences" were used to collect data for programming these devices. And—suddenly—you imagine other communication scenarios, too, that may be missing from your students' devices.
See: Johnson, E., Bornman, J., & Tönsing K.M. (2016) An exploration of pain-related vocabulary: implications for AAC use in children. Augmentative and Alternative Communication. Advance online publication: doi: 10.1080/07434618.2016.1233998