The Lived Experience and Legacy of Pragmatics for Deaf and Hard of Hearing Children

Alys Young, Amy Szarkowski, Emma Ferguson-Coleman, Darlene Freeman, Candace Lindow-Davies, Ron Davies, Karen Hopkins, Ian Noon, Katherine Rogers, Jane Russell, Leeanne Seaver, Kathy Vesey

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Abstract

In this article, we discuss deaf and hard of hearing (DHH) children’s pragmatic difficulties and strengths from within the lived experiences of 5 hearing parents of DHH children and 5 DHH adults (one of whom is also a parent of a deaf child). We define lived experience as both a specific form of knowledge (first-hand stories from everyday life) and a unique way of knowing (reflecting and telling from insider perspectives). The parents and DHH adults involved coauthored the article alongside 2 experienced researcher-practitioners. Key themes include what pragmatic challenges feel like for a DHH person, why they arise, how they might result in longer-term consequences (such as implications for well-being) that can continue into adulthood, what might be pragmatic strengths in this population, and what might be done to ameliorate pragmatic difficulties. We end the article with reflections on the significance of individual parents and DHH adults in the coproduction and execution of research on this topic and make suggestions for future directions of inquiry.

Abbreviation:
DHH — deaf and hard of hearing
As the parent and deaf and/or hard of hearing (DHH) coauthors of this article reflected, pragmatics is not a topic that is commonly discussed in their networks. The parent authors rarely, if ever, encountered the topic in discussions with professionals when raising their children. In sign language communities, the DHH authors reflected that the lack of familiarity with the term means there is yet to be an agreed-on sign for it. Yet the parent and DHH coauthors of this article have lived the additional struggles faced by DHH children in gaining age-appropriate pragmatic development, even if they could not have articulated it in those terms at the time. That lived experience has a vital contribution to make as we work toward better understanding how best to support age-appropriate pragmatic skills development for DHH children. Parents and DHH adults bring to this goal a particular form of knowledge (first-hand stories from everyday life) and a unique way of knowing (reflecting and telling from insider perspectives). Deep understanding of the importance of the role of pragmatics as it relates to DHH children would be incomplete without their perspectives. We present that contribution here, in line with the increasing focus on what is termed patient engagement or patient-orientated research in North America and patient and public involvement and engagement in the United Kingdom.
Original languageEnglish
Pages (from-to)S304-S309
JournalPediatrics
Volume146
Issue numberSupplement 3
DOIs
Publication statusPublished - 2 Nov 2020

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