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A qualitative exploration of trial-related terminology in a study involving Deaf British Sign Language users
Young, Alys Dodds, Claire Nassimi-Green, Catherine Belk, Rachel Rogers, Katherine Davies, Linda Lovell, Karina
Young, Alys
Dodds, Claire
Nassimi-Green, Catherine
Belk, Rachel
Rogers, Katherine
Davies, Linda
Lovell, Karina
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2016-04-27
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Abstract
Background: Internationally, few clinical trials have involved Deaf people who use a signed language and none have involved BSL (British Sign Language) users. Appropriate terminology in BSL for key concepts in clinical trials that are relevant to recruitment and participant information materials, to support informed consent, do not exist. Barriers to conceptual understanding of trial participation and sources of misunderstanding relevant to the Deaf community are undocumented. Methods: A qualitative, community participatory exploration of trial terminology including conceptual understanding of 'randomisation', 'trial', 'informed choice' and 'consent' was facilitated in BSL involving 19 participants in five focus groups. Data were video-recorded and analysed in source language (BSL) using a phenomenological approach. Results and discussion: Six necessary conditions for developing trial information to support comprehension were identified. These included: developing appropriate expressions and terminology from a community basis, rather than testing out previously derived translations from a different language; paying attention to language-specific features which support best means of expression (in the case of BSL expectations of specificity, verb directionality, handshape); bilingual influences on comprehension; deliberate orientation of information to avoid misunderstanding not just to promote accessibility; sensitivity to barriers to discussion about intelligibility of information that are cultural and social in origin, rather than linguistic; the importance of using contemporary language-in-use, rather than jargon-free or plain language, to support meaningful understanding. Conclusions: The study reinforces the ethical imperative to ensure trial participants who are Deaf are provided with optimum resources to understand the implications of participation and to make an informed choice. Results are relevant to the development of trial information in other signed languages as well as in spoken/written languages when participants' language use is different from the dominant language of the country.
Citation
Young, A., Oram, R., Dodds, C. et al. A qualitative exploration of trial-related terminology in a study involving Deaf British Sign Language users. Trials 17, 219 (2016). https://doi.org/10.1186/s13063-016-1349-6
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27121282 (pubmed)
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Journal article
Language
en
Description
© 2016 The Authors. Published by SpringerNature. This is an open access article available under a Creative Commons licence.
The published version can be accessed at the following link on the publisher’s website: https://doi.org/10.1186/s13063-016-1349-6
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1745-6215
EISSN
1745-6215
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The research was funded by the National Institute for Health Research, Health Services Research and Development Grant number: 12/136/79.
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Licence for published version: Creative Commons Attribution 4.0 International