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Abstract
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.
- health policies and all other topics
- control strategies
- health services research
- prevention strategies
- public health
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Footnotes
Handling editor Seye Abimbola
Contributors All authors contributed critically and equally to the conceptualisation, drafting and editing of the paper.
Funding The Social and Economic Impact of Zika study was supported by the Wellcome Trust & the UK’s Department for International Development (205377/Z/16/Z to LCR, https://wellcome.ac.uk/); the European Union’s Horizon 2020 research and innovation programme (https://ec.europa.eu/programmes/horizon2020/) under ZikaPLAN grant agreement number 734584, https://zikaplan.tghn.org/).
Disclaimer The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Not required.
Ethics approval Ethical approval for the full study was received from London School of Hygiene and Tropical Medicine and the Fiocruz ethics committee (CAAE 60682516.2.1001.5269).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement No additional data are available.
Author note The authors were all critically important to the conduct of this research. The authorship order was randomised to achieve a lack of hierarchy.