The response to and impact of the Ebola epidemic: towards an agenda for interdisciplinary research

The 2013-16 Ebola virus disease (EVD) epidemic in West Africa was the largest in history and resulted in a huge public health burden and significant social and economic impact in those countries most affected. Its size, duration and geographical spread presents important opportunities for research than might help national and global health and social care systems to better prepare for and respond to future outbreaks. This paper examines research needs and research priorities from the perspective of those who directly experienced the EVD epidemic in Guinea.

Methods: The paper reports the findings from a research scoping exercise conducted in Guinea in 2017. This exercise explored the need for health and social care research, and identified research gaps, from the perspectives of different groups. Interviews were carried out with key stakeholders such as representatives of the Ministry of Health, NGOs, academic and health service researchers and members of research ethics committees (N=15); health practitioners (N=12) and community representatives (N=11). Discussion groups were conducted with male and female EVD survivors (N=24) from two distinct communities.

Results: This research scoping exercise identified seven key questions for further research. An important research priority that emerged during this study was the need to carry out a comprehensive analysis of the wider social, economic and political impact of the epidemic on the country, communities and survivors. The social and cultural dynamics of the epidemic and the local, national and international response to it need to be better understood. Many survivors and their relatives continue to experience stigma and social isolation and have a number of complex unmet needs. It is important to understand what sort of support they need, and how that might best be provided. A better understanding of the virus and the long-term health and social implications for survivors and non-infected survivors is also needed.

Conclusion: This study identified a need and priority for interdisciplinary research focusing on the long-term socio-cultural, economic and health impact of the EVD epidemic. Experiences of survivors and other non-infected members of the community still need to be explored but in this broader context.