Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
Trials
Published in: Trials 1/2016

Open Access 01-12-2016 | Research

A qualitative exploration of trial-related terminology in a study involving Deaf British Sign Language users

Authors: Alys Young, Rosemary Oram, Claire Dodds, Catherine Nassimi-Green, Rachel Belk, Katherine Rogers, Linda Davies, Karina Lovell

Published in: Trials | Issue 1/2016

Login to get access

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.
Footnotes
1
Capitalisation of words is an accepted convention to imply that the signed utterance is being referred to.
 
2
Fingerspelling refers to specific and conventionalised hand movements standing for the English alphabet, A, B, C, etc. that can be combined to spell out, letter by letter, the English word or name being referred to.
 
Literature
1.
Sutton-Spence R, Woll B. The linguistics of British Sign Language: an introduction. Cambridge: Cambridge University Press; 1999.CrossRef
2.
Ladd P. Understanding deaf culture. In: Search of deafhood. Clevedon: Multilingual Matters Ltd; 2003.
3.
Lane H. When the mind hears: a history of the deaf. New York: Random House; 1984.
4.
Lane H, Hoffmeister B, Bahan B. A journey into the deaf world. Washington DC: Dawn Sign Press; 1996.
5.
6.
7.
8.
Mitchell RE, Karchmer MA. Chasing the mythical ten percent: parental hearing status of deaf and hard of hearing students in the United States. Sign Lang Stud. 2004;4:231–44.CrossRef
9.
10.
Young, A., Ferguson-Coleman, E., Keady, J. (2016). Understanding dementia: effective information access from the Deaf community's perspecitve. Health and Social Care in the Community, 24 (1), 39-47. doi 10.​1111/​hsc12181.
11.
12.
Woodward J. How you gonna get to heaven if you can’t talk with Jesus: the educational establishment vs. the Deaf community. 34th Annual Meeting of the Society for Applied Anthropology. Royal Tropical Institute, Amsterdam, The Netherlands, 1975.
13.
Barnett S, Klein JD, Pollard RQ, Samar V, Schlehofer D, Starr M, et al. Community participatory research with deaf sign language users to identify health inequities. Am J Public Health. 2011. doi:10.​2105/​AJPH.​2011.​300247.
14.
15.
16.
17.
18.
Young A, Temple B. Approaches to social research: the case of Deaf studies. New York: Oxford University Press; 2014.CrossRef
19.
20.
Elbourne P. Meaning: a slim guide to semantics. Oxford: Oxford University Press; 2011.
21.
Kiefer F. Linguistic, conceptual and encyclopedic knowledge: some implications for lexicography. In: Magay T, Zigány J, editors. Proceedings of the 3rd EURALEX International Congress. Budapest: Akadémiai Kiadó; 1988. p. 1–10.
22.
Featherstone K, Donovan JL. Random allocation or allocation at random? Patients’ perspectives of participation in a randomised controlled trial. Br Med J. 1998;317:1177–80. 31.CrossRef
23.
Featherstone K, Donovan JL. Why don’t they just tell me straight, why allocate it?’ The struggle to make sense of participating in a randomised controlled trial. Soc Sci Med. 2002;55:709–19.CrossRefPubMed
24.
Stead M, Eadie D, Gordon D, Angus K. ‘Hello, hello – it’s English I speak!’: a qualitative exploration of patients’ understanding of the science of clinical trials. J Med Ethics. 2005. doi:10.​1136/​jme.​2004.​011064.
25.
Ndebele P, Wassenaar D, Masiye F, Munalula-Nkandu E. Trial participants’ understanding of randomization, double-blinding, and placebo use in low literacy populations: findings from a study conducted within a microbicide trial in Malawi. J Empir Res Hum Res Ethics. 2014. doi:10.​1177/​1556264614540592​.PubMedCentral
26.
27.
28.
Young A, Ferguson-Coleman E, Keady J. Understanding dementia: effective information access from the Deaf community’s perspective. Health Soc Care Community. 2014. doi:10.​1111/​hsc.​12181.
29.
30.
Pollard RQ. Psychopathology. In: Marschark M, Clark D, editors. Psychological perspectives on deafness, vol. 2. Mahwah: Lawrence Erlbaum; 1998. p. 171–97.
31.
Emmorey K. Language, cognition, and the brain: insights from sign language research. Mahwah: Lawrence Erlbaum Associates; 2002.
32.
33.
34.
35.
36.
Giorgi A. Phenomenological psychology. In: Smith JA, Harré R, Van Langenhove L, editors. Rethinking psychology. London: Sage; 1995. p. 24–42.
37.
Cohen MZ, Kahn DL, et al. Hermeneutic phenomenological research: a practical guide for nurse researchers. London: Sage; 2000.
38.
39.
40.
41.
Stokoe WC. Syntactic dimensionality: language in four dimensions. Presented at the New York Academy of Sciences. 1979
42.
Young AM, Carr G, Hunt R, McCracken W, Skipp A, Tattersall H. Informed choice and deaf children – underpinning concepts and enduring concerns. J Deaf Stud Deaf Educ. 2006. doi:10.​1093/​deafed/​enj041.PubMed
43.
Wells M, Williams B, Treweek S, Coyle J, Taylor J. Intervention description is not enough: evidence from an in-depth multiple case study on the untold role and impact of context in randomised controlled trials of seven complex interventions. Trials. 2013. doi:10.​1186/​1745-6215-13-95.
44.
Bisol CA, Sperb TM, Moreno-Black G. Focus groups with deaf and hearing youths in Brazil: improving a questionnaire on sexual behavior and HIV/AIDS. Qual Health Res. 2008. doi:10.​1177/​104973230730786.
45.
46.
Marschark M, Hauser PC. Cognitive underpinning of learning by deaf and hard-of- hearing students: differences, diversity and directions. In: Marschark M, Hauser PC, editors. Deaf cognition: foundations and outcomes. New York: Oxford University Press; 2008. p. 3–23.CrossRef
47.
Graybill P, Aggas J, Dean RK, Demers S, Finnigan EG, Pollard RQ. A community participatory approach to adapting survey items for Deaf individuals and American Sign Language. Field Methods. 2010. doi:10.​1177/​1525822X10379201​.
Metadata
Title
A qualitative exploration of trial-related terminology in a study involving Deaf British Sign Language users
Authors
Alys Young
Rosemary Oram
Claire Dodds
Catherine Nassimi-Green
Rachel Belk
Katherine Rogers
Linda Davies
Karina Lovell
Publication date
01-12-2016
Publisher
BioMed Central
Published in
Trials / Issue 1/2016
Electronic ISSN: 1745-6215
DOI
https://doi.org/10.1186/s13063-016-1349-6

Other articles of this Issue 1/2016

Trials 1/2016 Go to the issue

Update

A phase III, multi-centre, double-masked randomised controlled trial of adjunctive intraocular and peri-ocular steroid (triamcinolone acetonide) versus standard treatment in eyes undergoing vitreoretinal surgery for open globe trauma (ASCOT): statistical analysis plan

Study protocol

The Cedar Project WelTel mHealth intervention for HIV prevention in young Indigenous people who use illicit drugs: study protocol for a randomized controlled trial

Study protocol

Dipeptidyl peptidase-4 inhibition and narrow-band ultraviolet-B light in psoriasis (DINUP): study protocol for a randomised controlled trial

Research

Characterisation of trials where marketing purposes have been influential in study design: a descriptive study

Study protocol

Comparative effectiveness of antihypertensive treatment for older children with primary hypertension: study protocol for a series of n-of-1 randomized trials

Study protocol

Tonic and burst spinal cord stimulation waveforms for the treatment of chronic, intractable pain: study protocol for a randomized controlled trial