An exploration of pain-related vocabulary: implications for AAC use with children

Abstract

Children with significant communication difficulties who experience pain need appropriate means to communicate their pain in order to receive appropriate treatment. Augmentative and alternative communication (AAC) strategies could be used to enable children to self-report pain. The aim of this research study was to identify the common vocabulary children with typical development use to describe physical pain experiences and develop and socially validate an appropriate pain-related vocabulary list for children who use or could benefit from using AAC. A sequential, exploratory, mixed-method design was employed. This paper focuses on the quantitative phase. A set of scenarios was developed to gather pain-related vocabulary appropriate for children aged 6;0–7;11 (years;months) and children aged 8;0–9;11, from 74 children, 61 parents, and 56 teachers. Some 629 pain-related words or phrases were suggested and then classified into seven categories. A composite list of the 84 most frequently occurring pain-related vocabulary items was compiled and socially validated by three adults who used AAC. They emphasized the need to individualize vocabulary and provided suggestions for vocabulary organization for display on any type of AAC system. Despite similarities in the categories of words offered by the various respondent groups, the differences underscore the importance of more than one perspective (particularly that of children and adults) in generating a comprehensive vocabulary list.

Keywords:

• Augmentative and alternative communication
• AAC system
• AAC category
• AAC word lists
• pain communication
• pain-related vocabulary
• significant communication difficulties

Acknowledgements

This study was conducted as part of a doctoral dissertation by the first author.

We would like to thank the principals of the schools and hospital managers who consented that this study may be conducted at their sites. We would also like to thank the participants in the four participant groups who generously gave their time.

Disclosure statement

The authors report no conflict of interest. The authors alone are responsible for the content and writing of the paper.

Funding

The financial assistance of the National Research Foundation (NRF) 10.13039/501100001321 [86447] and the Margaret McNamara Memorial Fund (MMMF) towards this research project is hereby acknowledged. Opinions expressed are attributable to the authors and do not necessarily reflect the official viewpoint of either the MMMF or the NRF.

Notes

¹Picture Communication Symbols is a product of Mayer-Johnson, a Tobii Dynavox Company. www.mayer-Johnson.com