Strengthening ethics in Ebola research: a toolbox developed with and for limited literacy adults in Ebola-affected countries
More details
Hide details
Western University, Canada
Publication date: 2023-04-27
Popul. Med. 2023;5(Supplement):A658
Introduction: Clinical research in West Africa routinely enrolls adults with a low level of literacy, and with no previous research experience. Such research expanded substantially in Ebola-affected countries, following the 2013-2016 Ebola outbreak (Sierra Leone, Liberia, Guinea). The purpose of this study was to develop for and with potential participants with low levels of education, means and tools to support their informed consent (or refusal) to engage in clinical research. Methodology: The study involved intersectoral, multi-country collaboration, notably with Ebola survivor associations and National Research Ethics Committees, to plan, develop and pilot an open access toolkit to support ethical clinical research in public health emergencies.  A pilot test of the toolbox was done in Guinea using local languages (Sussu and Dioula).  Results: Participatory design of the toolbox Resultsed in more audio-visual materials than initially intended, and successful piloting of the toolbox in collaboration with the Ebola Survivors Association of Guinea (May 2021). Pilot workshop participants, including women and men, and individuals aged 18 to over 70 years of age, appreciated having the opportunity to reflect collectively on benefits and risks of participating in EVD research. The use of recognizably African cultural dynamics and values in visually engaging video and poster tools was effective in instigating animated Discussion and building trust in research, but requires a facilitator guide to support effective us.   Conclusions: This toolbox will be important to disseminate among health researchers, anthropologists, members of Associations of Ebola survivors and communicators, researchers, ethics board members, civil society leaders who wish to support potential participants to better understand, discuss, prepare for, and manage their participation in clinical research projects with a particular focus on EVD-affected countries. Skilled facilitation of workshops using the tools as a point of departure for discussions is recommended.
Journals System - logo
Scroll to top