The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil 2015–2016

摘要

Social science generates evidence necessary to control epidemics. It can help to craft appropriate public health responses, develop solutions to the epidemic impacts and improve understanding of why the epidemic occurred. Yet, there are practical constraints in undertaking this international research in a way that produces quality, ethical and appropriate data, and that values all voices and experiences, especially those of local researchers and research participants. In this paper, we reflected on the experience of undertaking social science research during the 2015/2016 Zika epidemic in Brazil. This experience was considered from the perspective of this paper’s authors: three Brazilian academics, two UK academics and two mothers of children affected by congenital Zika syndrome. This group came together through the conduct of the Social and Economic Impact of Zika study, a mixed-methods social science study. The key findings highlight practical issues in the achievement of three goals: the conduct of high-quality social science in emergencies and efforts towards the decolonisation of global health in terms of levelling the power between Brazilian and UK researchers and optimising the role of patients within research. From our perspective, the information collected through social science was valuable, providing detailed insight into the programmatic needs of mothers and their affected children (eg, economic and social support and mental health services). Social science was considered a low priority within the Zika epidemic despite its potential importance. There were logistical challenges in conducting social science research, foremost of which are the difficulties in developing a trusting and balanced power relationship between the UK and Brazilian researchers in a short time frame. When these issues were overcome, each partner brought unique qualities, making the research stronger. The mothers of affected children expressed dissatisfaction with research, as they were involved in many studies which were not coordinated, and from which they did not see a benefit. In conclusion, the importance of social science in epidemics must continue to be promoted by funders. Funders can also set in place mechanisms to help equalise the power dynamics between foreign and local researchers, researchers and participants, both to promote justice and to create best quality data.