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Opinion

Lessons from the Zika epidemic: Institutional links for research on care, disability and public policies

Published on 4 June 2019

Image of Isabele Villwock Bachtold
Isabele Villwock Bachtold

External Consultant

For the last few years, IDS has been gathering evidence on the social, economic and political dimensions of epidemics in different contexts worldwide, seeking to improve the way social science is used to improve response planning and preparedness. IDS researchers have recently been collaborating with the Centre for Cultures of Reproduction, Technology and Health (CORTH) and Brazilian institutions explore how the Zika virus in Brazil feeds into the broader dynamics that shape the emergence of an epidemic and the policy responses to health crises. The project, supported by a Newton Fund Institutional Links grant, aimed to understand the social and emotional impact on families affected by the Zika virus, as well as the reorganisation of public services to meet their needs.

In February, researchers from the partner institutions gathered at IDS during a week to present their key project findings and discuss future collaborations. An open seminar from the Health and Nutrition Cluster, ‘Zika virus, access to care and the state in Brazil’ introduced some of the complex and emerging debates related to the epidemic such as the intersectoral integration of health and other public services as well as the gender dynamics of care. The researchers involved also shared project findings and key messages in a series of videos (below).

Despite the reduction of infection cases in 2016, the outbreak of the Zika epidemic left a legacy of complex challenges for the caretakers of children with the congenital syndrome of the virus, demanding rapid action from both the state and scientific researchers. The epidemic has reinforced historical gender inequalities, as poor mothers from rural areas and the suburbs bear the social burden of the disease.

While the vertical transmission of the virus raised discussions on reproductive rights, the consequences on child development and increased care demands need to be framed within the wider political economy of unpaid care and gender inequalities.

In addition, the epidemic required a state response that went beyond health treatments, epidemiological surveillance and strategies to fight the Aedes mosquitoes spreading the disease. The response was set in the context of an economic and political crisis and was subject to the influence of multiple actors, interests and narratives at the national, state and municipal level.

But the response also failed to take into account the intersecting inequalities that allowed the epidemic to spread in the first place, such as inadequate access to health and sanitation, poor living conditions, precarious urban development, a historical failure on the part of public policy to fight the Aedes mosquitoes and a lack of reproductive rights.

Care, therapeutic itineraries, motherhood and political identities

Since the outbreak of the epidemic, anthropologists from the Federal University of Pernambuco (UFPE) and University of Brasília (UnB) have been conducting ethnographic research in the city of Recife with the mothers and caretakers of children affected by the Zika congenital syndrome.

Through an in-depth, contextual, sensitive and long-term research process, researchers have been visiting the families in their homes and following them in their routine interactions with the multiple interfaces of the state and science.

The multiple research efforts focused on understanding the dilemmas and challenges related to care practices experienced by these women, the strategies and paths they adopted to access to public services and the cultural and emotional aspects of the epidemic, among other aspects. In addition, it explores the mothers and their collectives as political actors in their daily struggle for rights and adequate treatment.

To encourage the mothers to tell their stories and to provide a channel for them to lobby the state, the project delivered an audiovisual training course to enable them to create videos documenting the challenges they face. The mothers led the participatory process of creating the videos, from conception to post-production and editing.

Public policies and services

The Brazilian state response to the Zika virus epidemic was at the centre of the investigation conducted by researchers from IDS, the Federal University of Pernambuco (UFPE), the Oswaldo Cruz Foundation (Fiocruz) and the Federal University of Rio de Janeiro State (UFF). The groups analysed their policymaking processes and implementation of services targeted at the affected population at the federal, state and local levels.

Research was undertaken Recife, Rio de Janeiro and Campina Grande through interviews with mid-level bureaucrats and frontline workers from the health, social assistance and education sectors. The teams intended to map the actors that built a policy response to the epidemics, their strategies, networks and the formal and informal procedures to assist the affected population.

Some common topics permeated the different research efforts, such as innovation and implementation strategies; cross-sectoral coordination and cooperation; bureaucratic activism and agency roles; disabilities, inclusion and the priority to access services; and the dilemmas between universalisation and targeting measures.

Our project’s study of the state response to the Zika virus points to the need to open up governance approaches that embrace the complexity, fluidity and multiplicity of actors, discourses, knowledge and interests in epidemics.

But almost four years after the outbreak, many uncertainties linger and are affecting the future of the affected families. There is still no scientific consensus on the effects of the virus and the consequences for infected children’s development are still unknown. As well as this, any immunisation processes and policies already in place are increasingly under threat due to political crisis, budget cuts and the reduction of the Brazilian welfare state.

When new cases of the syndrome dropped considerably in 2017, the end of the Zika epidemic was officially declared. However, isolating the epidemic within such a specific time frame disregards the long-term socioeconomic, health and emotional impacts of the disease.

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