Access to healthcare for children with Congenital Zika Syndrome in Brazil: perspectives of mothers and health professionals

Abstract

Abstract The Congenital Zika Syndrome (CZS) epidemic took place in Brazil between 2015 and 2017 and led to the emergence of at least 3194 children born with CZS. We explored access to healthcare services and activities in the Unified Health Service (Sistema Único de Saúde: SUS) from the perspective of mothers of children with CZS and professionals in the Public Healthcare Network. We carried out a qualitative, exploratory study, using semi-structured interviews, in two Brazilian states—Pernambuco, which was the epicentre of the epidemic in Brazil, and Rio de Janeiro, where the epidemic was less intense. The mothers and health professionals reported that healthcare provision was insufficient and fragmented and there were problems with follow-up care. There was a lack of co-ordination and an absence of communication between the various specialized services and between different levels of the health system. We also noted a public–private mixture in access to healthcare services, resulting from a segmented system and related to inequality of access. High reported household expenditure is an expression of the phenomenon of underfunding of the public system. The challenges that mothers and health professionals reported exposes contradictions in the health system which, although universal, does not guarantee equitable and comprehensive care. Other gaps were revealed through the outbreak. The epidemic provided visibility regarding difficulties of access for other children with disabilities determined by other causes. It also made explicit the gender inequalities that had an impact on the lives of mothers and other female caregivers, as well as an absence of the provision of care for these groups. In the face of an epidemic, the Brazilian State reproduced old fashioned forms of action—activities related to the transmitting mosquito and to prevention with an emphasis on the individual and no action related to social determinants.