Linguistic and Cultural Challenges in Communication and Translation in US-Sponsored HIV Prevention Research in Emerging Economies.

Donna Hanrahan,Robert Klitzman,Jennifer Teitcher,Mark Barnes,Patrina Sexton,Alex John London,James Purpura,Jeremy Sugarman,Katrina Hui,Mark Aronoff

doi:10.1371/journal.pone.0133394

Abstract

Linguistic and cultural differences can impede comprehension among potential research participants during the informed consent process, but how researchers and IRBs respond to these challenges in practice is unclear. We conducted in-depth interviews with 15 researchers, research ethics committee (REC) chairs and members from 8 different countries with emerging economies, involved in HIV-related research sponsored by HIV Prevention Trials Network (HPTN), regarding the ethical and regulatory challenges they face in this regard. In the interviews, problems with translating study materials often arose as major concerns. Four sets of challenges were identified concerning linguistic and cultural translations of informed consent documents and other study materials, related to the: (1) context, (2) process, (3) content and (4) translation of these documents. Host country contextual issues included low literacy rates, education (e.g., documents may need to be written below 5th grade reading level), and experiences with research, and different views of written documentation. Certain terms and concepts may not exist in other languages, or have additional connotations that back translations do not always reveal. Challenges arise because of not only the content of word-for-word, literal translation, but the linguistic form of the language, such as tone (e.g., appropriate forms of politeness vs. legalese, seen as harsh), syntax, manner of questions posed, and the concept of the consent); and the contexts of use affect meaning. Problems also emerged in bilateral communications – US IRBs may misunderstand local practices, or communicate insufficiently the reasons for their decisions to foreign RECs. In sum, these data highlight several challenges that have received little, if any, attention in past literature on translation of informed consent and study materials, and have crucial implications for improving practice, education, research and policy, suggesting several strategies, including needs for broader open-source multilingual lexicons, and more awareness of the complexities involved.

Highlights

The appropriate translation of informed consent and other research-related documents, which accounts for linguistic and cultural variations, is critical to providing informed consent for research
[1] Despite the risk for miscommunication, there is no standard method of translating clinical trial documents [2,3], though clinical researchers often use the Brislin method of forward and back translation that is performed until a satisfactory translation is achieved [4]
All 15 respondents cited challenges stemming from language or cultural concerns surrounding the informed consent process

Summary

Introduction

The appropriate translation of informed consent and other research-related documents, which accounts for linguistic and cultural variations, is critical to providing informed consent for research. Potential study participants cannot reasonably consent to research if they do not understand relevant details of the study and its implications for themselves. Many questions remain concerning the effectiveness of this approach, such as whether study participants fully understand consent forms, study purposes and procedures. While consent form readability and comprehension has been found to be suboptimal in the US [3,4,5,6] additional questions arise regarding US sponsored research conducted abroad in nonOrganisation for Economic Co-operation and Development (OECD) nations [5]–whether and to what degree comprehension is reduced when many participants do not speak and/or read English well, or not at all, and how researchers, IRBs, and others might best address such potential issues

Methods

Results

Conclusion