Project Report: “Nothing about us without us”: How families affected by Zika are claiming back control

When Brazilian clinicians first noticed an unusually high number of babies born with microcephaly being brought to them in 2015, few would have predicted the little-known Zika virus could be to blame. Three years since the public health emergency was announced by the WHO, we now know a great deal more about how the Zika virus infects people, especially pregnant women; how it can damage cells that would have gone on to become neurons in the foetus, causing a host of congenital disorders, microcephaly being just one. These impacts are grouped together as Congenital Zika Syndrome (CZS). We also know something about why certain communities in Brazil may have been so badly affected, while others saw very few cases. It is clear that socioeconomic factors played a major role in the transmission of Zika virus.

During the height of the outbreak, mosquitoes - the vectors that transmit the disease to humans - were the main target of public health campaigns across Latin America. For public health campaigners, the message was clear: Avoid mosquitos, avoid Zika. However Gustavo Matta, a social science researcher at FioCruz, a research institute based in Brazil, feels that not enough attention was paid to the sexual transmission of Zika virus, and that this meant that the outbreak continued for longer than it might have. João Nunes, professor of political science at the University of York, points to the socioeconomic factors that contributed to the spread of Zika in certain regions: a lack of good sanitation and running water may have meant more standing water, where mosquitoes breed; poor housing may mean less protection from bites. And importantly for those concerned with community engagement: both argue that the response of many Western research groups was problematic. Processes of consent were undermined as CZS-affected families used in many studies - were given forms to sign which were written in English, not Portuguese. Also, these gave little or no  information about why they were being asked to be involved in the study, what the outcomes of the research were or how it would benefit them. This lack of effective basic engagement led many families to become resistant to participating in research, and to be distrustful of science in general.

Despite this failure, some of the voices of women and the children who continue to face the brunt of this disease are finding their channels of expression. Although Zika has been out of the international news for a long time, its impacts are still felt across Latin America. Hannah Kuper, head of the Disability Research Group at the London School of Hygiene and Tropical Medicine highlights that it is one of few epidemics where the major impact is not death, but disability. This means that interrupting the transmission of the virus was just the first step; support for the babies born with CZS and their families represented a whole new challenge. Germana Soares gave birth to her son Guilherme during the earliest signs of the Zika epidemic. He was born with microcephaly. Since his birth, she has formed a group with other mothers, called União de Mães de Anjos, the ‘United Mothers of Angels’ (UMA). They campaign for children and families’ access to their legal rights and the day-to-day support they require. For Germana and other mothers in similar situations, such as Vanessa Aguiar, a representative from the campaign group Anjos de Minas (‘our angels’), Zika has been an issue of gender rights too; in all too many cases, mothers are left alone to care for their disabled children as well as to provide financially for their families. It is important to recognise that these social movements, and opportunities to hear or engage with these, are part of the engagement spectrum.

Germana, Vanessa, João, Gustavo and Hannah all attended the ‘Afterlives of Zika’ conference at York University in 2018. In the videos below, each discusses their experience of the Zika epidemic, as mothers of affected children, researchers in Brazil and researchers in the UK. They touch on issues such as how to ensure effective engagement of disease-affected families in research; how to move from ‘involvement’ to ‘co-production’ of research; the difficulties faced by CZS-affected families; and the lessons that can be learned from this outbreak.

Watch the videos below for longer discussions from Hannah, Gustavo and Joao on their work in this area.

Follow the links below to watch roundtable discussions from the Afterlives of Zika event in York, featuring policy and research experts, and community leaders and groups.

Afterlives of Zika: The role of Civil Society - roundtable discussion 

Afterlives of Zika: The challenges for policymakers and scientists - roundtable discussion