Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Strengthening the processes for informed consent translation to enhance communication – an update on our project progress

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:

  • Pragmatic literature review,
  • Review of practices of translating consent forms at KEMRI Wellcome Trust Research Programme (KWTRP),
  • Exploring views on the translations process and challenges encountered including difficult terminologies,
  • Developing a provisional translation guidebook and glossary of challenging terms and phrases that are commonly used; to be discussed in a workshop with different stakeholders.

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!  

Views: 313

Comment by Dina Rippon on January 16, 2018 at 14:51

Dear Betty and Salim, congratulations on all the hard work you've done on this project so far! It's very interesting to hear the kinds of words that teams found difficult to translate (and the sheer number of these terms!). Do you already have ideas on how you would enhance the current translation process to make it more efficient? Your flow-chart is very interesting - do you think you might need to add more layers to the process? Or take some layers away? It's a fascinating issue, and I really look forward to hearing more about your findings. Please also keep us updated on your workshop - there is bound to be a lot of interest among the MOPs on the outcome of your workshop. Would you consider inviting to the workshop external people (i.e. from other MOPs) who are interested to see how you implement your findings? 

Comment by Betty Matsezi Kalama on January 17, 2018 at 5:56

Thanks Dinnah for your comment and support in this project. This is indeed an interesting project and has actually steered interest from many people since translation affects everyone within the programme. We are very excited to be drivers of this!

The challenging terms are just but a sample of the difficult terminologies we have encountered since we only looked a few of the protocols. More will be unearthed as we develop the translation guideline and glossary of terminologies. 

The phase we are in at the moment; "exploring researchers' as well as translators' views on the process and the challenges encountered" is meant to help us gather views on what an efficient process looks like, which will later be discussed and agreed on in the workshop. Besides, we intend to present this part of work to some of our local audience like the 'Social Science Perspective, (SSP) seminar' which we believe will give us more feedback on how to move forward.

The workshop is indeed a major step in this project and we hope for the best. We will keep you posted on the outcome. On inviting MOPs to the workshop, we will deliberate on it and communicate as soon as possible.


Comment by Michael Parker on January 17, 2018 at 10:42

Dear Betty and Salim, This is a really great report. Thank you so much for taking the time to do this. It is such an important project. I'm looking forward to hearing more about it. It would be great if you were able to give us a presentation on the project at the summer school!

Comment by Betty Matsezi Kalama on January 17, 2018 at 11:00

Dear Mike,

Thank you for the feedback.

We aim to complete this work by May 2018. We will therefore be able to present the full report based on the outcome of all the 4 phases in 2018 summer school. Before then, we will endeavor to share any updates on the progress

Comment by Sassy Molyneux on January 18, 2018 at 19:31

Thanks for this update.  Translations are so far from straightforward!!  We are also finding this for our vulnerability study translations of transcriptions.  So this is an important area for consent forms and also for a lot of our social science studies.  Do share any good papers on best practice/top tips, and looking forward to the outputs from your next phases.

Comment by Fanny Kapakasa on January 22, 2018 at 7:04

Congratulations Betty and Salim! I can see we are doing a similar project.

Malawi Liverpool Wellcome has developed the first edition of a Medical and Health Dictionary with English-Chichewa translations. The dictionary is designed to enable use of standard and culturally accepted vocabulary in translations of research materials, data and related information, from Chichewa to English and vice versa, in order to support effective and ethical research and public engagement in communities. The terms were collected from the Consent forms and Information sheets for different studies and from stakeholders from basic science, clinical medicine, public health, social science and public engagement programmes.  This is an on going project hence  feedback, alternative meanings and new terms will be in cooperated.

Comment by Betty Matsezi Kalama on January 22, 2018 at 8:14

Woow! We are very happy to hear this Fanny. Being something new for us, we hope to learn a lot from your experience. We will definitely link up with you for guidance. Thank you so much for sharing.

Add a Comment

You need to be a member of e-MOPs to add comments!

Join e-MOPs

© 2022   Created by Dina Rippon.   Powered by

Badges  |  Report an Issue  |  Terms of Service