Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
Informed consent has been described as one of the foundational pillars of ethical research, and arguably one of the most researched area in ethics. Understandably, we had many questions during planning of this project, key of which was what new contribution will our project add to the vast ‘consent literature’? Surprisingly, we also knew, from our own experiences of being in translation of consent information, that there is very little guidance available, particularly when such translation involves multiple languages, and research terminologies are ever evolving. We knew we had our work cut-out for us; we (Betty and Salim, the Principle Investigators of this project) are community engagement implementers and not primarily researchers; but we are keen to learn research skills. With guidance from our social scientists in the Department, we designed a 4-phased research, with an overall research question as ‘How can the processes for informed consent translation be strengthened to enhance communication’? We started the project in May 2016, and designed the project to have 4 phases including:
We have currently completed 2 out of the 4 phases and intend to complete the project by May 2018.
In the 1st phase, we focused on literature review, and shared that experience in our earlier blog. We have also completed phase 2, which was mainly desk review of the practices at KWTRP of translating consent forms. Currently, we are analysing data collected through focus groups discussions (FGDs) and in-depth interviews (IDIs), where we have explored researchers’ as well as translators’ views on the translation process and challenges encountered, including difficult terminologies. This phase has been particularly exciting to us, as we are beginning to see views that have potential for really improving our translation work at KWTRP. For example, from the FGDs and IDIs we have unearthed some 180+ terminologies that teams find challenging to translate! Some of these are: Acute, Oxygen, Platelets, Folate, Password, just to mention a few. By challenging we mean, words that may not have existing terms in the local languages of Swahili and Giriama. We have also learned that research teams in the Programme really appreciate how our Community Liaison Group has standardized translation work! This is very exciting for us! We however want to use the findings from this project to enhance the current translation process,(see diagram which shows the current translation process) and make it even more efficient, while keeping in line with ethical principles of research in human subjects. Eventually this research will help us develop a glossary and translation guidebook which will support different teams within our research institution, to translate information and consent sheets
What are our next steps?
After analysis of our data, we will make a provisional glossary of research term and their translations/, phrases are used to describe these. We will then present this in a workshop to selected teams from KWTRP, who have a role to play in translation, or have expressed an interesting in developing their translation skills. We think this will be a very interesting workshop and are looking forward to holding it. We are definitely looking forward to sharing about this work in our next blog.
Our aim is to complete this project early 2018, and are looking forward to sharing our final report and findings with you all!
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