Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Featured Project: Strengthening the Processes for Informed Consent Translation to Enhance Communication

Betty Kalama and Salim Mwalukore are 2016 Bursary Fellows

Biosketch:  Betty Kalama has been working with the KEMRI-Wellcome Trust Research Progamme (KWTRP) in Kilifi, Kenya as a Community Liaison Officer in the Community Liaison Group since 2010. She is also the secretary to the Communication and Consent Committee (CCC) in KWTRP. This committee is charged with the mandate of reviewing protocols for communication and community engagement aspects. She holds a Master of Arts Degree in Project Planning and Management and Bachelor of Arts degree in Sociology and Economics. Her role includes supporting coordination and implementation of Community Engagement activities which aim at enhancing the mutual relationship between the programme and the community. She also coordinates the translation of all Information and Consent Forms for KWTRP as well as participating in review of protocols under CCC.

Biosketch:  Salim Mwalukore holds a Bachelor of Science degree (BSc. Biological) and currently undertaking a Master of Arts Degree in Project Planning and Management. He has been working with the KEMRI-Wellcome Trust Research Progamme in Kilifi, Kenya since 2008 with the Community Liaison Group, as the Community Liaison Manger. He manages a team that coordinates community engagement activities for research studies across the programme in Kilifi. Community Engagement comprises of a set of activities that the group undertakes at the centre and within the Kilifi Health and Demographic Surveillance System (KHDSS) area in collaboration with the KHDSS area residents to enhance mutual understanding between the research centre and the communities that participate in research and also as a demonstration of respect to the community that participates in research. He coordinates study specific community engagement during study implementation. Salim sits in Protocol development meetings for planned studies to advice on community engagement for proposed new studies. He also sits in communication and consent committee that looks at how consenting process is communicated before studies are initiated. In addition he also sometimes supports research activities in the Department Public Health Research (DPHR) at the KEMRI-Wellcome Trust research programme, in Kilifi, Kenya. His interests revolve around research ethics and community engagement.

Project Title: Strengthening the processes for informed consent translation to enhance communication

Obtaining informed consent is dependent on understanding the proposed research. This understanding, in turn, is strongly influenced by the language used in the information sheet. Use of simplified language in Informed Consent Forms (ICFs) can contribute to improved comprehension of core aspects of the research. This process however, depends on the quality of translation of ICFs. Translating ICFs for medical research is time consuming, and sometimes difficult to standardise within different research contexts, and for different types of research.

This project aims at strengthening the processes of translating research terminologies used in ICFs for medical research in Kilifi Kenya. This may lead to high quality translation of ICFs, improved consent administration, and ultimately contribute to ethical conduct of health research at KEMRI Wellcome Trust Research Programme (KWTRP).

We propose to do this through reviewing the process of translation of ICFs at KWTRP by seeking the views of scientists, interface staff, translation experts and the community, and seeking agreement on the appropriate translation to local languages for common challenging/technical terms and phrases used in ICFs.
Key outcomes for this project would be a description of the translation processes and experiences at KWTRP, and the development of a translation guidebook with a glossary for challenging/technical terms and phrases used in ICFs.

Comment by serebe abay on April 21, 2016 at 13:45

That's great job Salim.

Although informed consent is a corner stone in biomedical research involving human participant, efforts done to improve informed consent quality is not satisfactory compared to the advancement in biomedical research. Studies showed that language barrier is one of  the factors which affect informed consent understanding. Translating alone is not adequate to address participants' misconception on ICF.  Tailoring to context and using local terminologies is paramount importance in developing countries with multiple ethnicity and various socio-cultural believes. Therefore, guideline and glossary development could help researchers to fix problems confront during informed consent information translation process.

But I would like to know:  is the study nation wide? or is the number of local languages in Kenya limited?

When you come to my country, Ethiopia, over eighty different languages, different cultural believes, Urban and Rural, different educational and socio-economic status. in such situation, it is difficult to develop a glossary which can be used throughout. What is your opinion on such challenges relating to your project?

Comment by Michael Parker on April 22, 2016 at 9:50

This is a great project Betty and Salim. I'm looking forward to seeing you both and hearing more about it at the summer school. All the very best with it.

Comment by Farirai on May 14, 2016 at 15:01

Great project indeed Betty and Salim. Just yesterday,  i was arguing with colleagues on the best translation for the word "research" in one of our native languages - Shona. The three of us came with three different words and we did not agree. I can imagine the amount of work that you have ahead of you in coming up with a guidebook especially when you have multiple languages and dialects. I think we should try a similar project in Zimbabwe learning from your experience. Best wishes!!!

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