The end of unfinished health emergencies and the Congenital Zika Syndrome

Abstract

Understanding health problems as always unfinished, this article examines consequences of the declaration of the end of a health emergency on the practice of different and interconnected care networks. As part of the “Action Ethnography on Care…” research project, this is a qualitative case study of three documents produced after the announcement of the end of the Congenital Zika Virus Syndrome epidemic. It shows the contexts of narrative production involving researchers, managers/ public service workers, mothers and families of the ill, and mothers’ associations and their different perspectives about what care is. Analyses of a presentation for researchers and of a working paper for the Applied Economics Research Institute (IPEA) question the technical narrative celebrating the end of the emergency based on knowledge and health service without taking into account the relational, affective and political care (of mothers, families and associations), leaving the latter invisible. It describes the process of elaboration of a motion by the Zika Pandemic Forum, listing and systematizing action proposals produced in an explicit dialogue among participants in different care networks to approach unfinished post-emergency questions. It suggests that similar practices of dialogue between networks can promote greater inclusion and sensitivity to care that contribute to reducing suffering and defending the rights of people who continue to live daily with a syndrome or disease whose consequences persist.

Keywords:
Zika congenital syndrome; End of health emergencies; Narratives of success and suffering; Care networks