Abstract
BackgroundInternationally, 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.MethodsA 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 discussionSix 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.ConclusionsThe 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.
Highlights
Few clinical trials have involved Deaf people who use a signed language and none have involved BSL (British Sign Language) users
Deaf culture is rarely passed inter-generationally with many young Deaf people forming their Deaf cultural identity as young adults through peers and Deaf community involvement [9]. It was more usual for deaf children to attend specialist deaf schools, often residentially, where sign language and Deaf culture were absorbed at an early age, even in those which were spokenlanguage educational environments
In respect of our study, we have shown that the identity of Deaf people who might be dominant BSL users but who contextually engage in everyday acts of translation and decoding of the majority language, does impact on comprehension of the unfamiliar
Summary
Few clinical trials have involved Deaf people who use a signed language and none have involved BSL (British Sign Language) users. Barriers to conceptual understanding of trial participation and sources of misunderstanding relevant to the Deaf community are undocumented Signed languages such as BSL (British Sign Language) are naturally occurring, grammatically complete languages [1]. Deaf culture is rarely passed inter-generationally with many young Deaf people forming their Deaf cultural identity as young adults through peers and Deaf community involvement [9] In previous generations, it was more usual for deaf children to attend specialist deaf schools, often residentially, where sign language and Deaf culture were absorbed at an early age, even in those which were spokenlanguage educational environments
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