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

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.

Hope and trust in times of Zika: the views of caregivers and healthcare workers at the forefront of the epidemic in Brazil

“…While adequate access to health care is an important issue in Brazil, particularly for families affected by CZS ( Albuquerque et al , 2019 ), this article contributes to this discussion of the importance of a trust-based healthcare system for cooperation between healthcare workers and caregivers. Health systems are inherently relational, and many of its challenges lie in its behavioural and relationship dynamics ( Gilson, 2003 ).…”

How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF

“…This has been highlighted in other studies. 35 Furthermore, lack of access to services (mainly due to distance, cost and lack of availability) was a massive issue for families of children with CZS. 36 From our study, it is clear that services for support and rehabilitation in a single location would minimise problems of low attendance and/or avoidance of services.…”

The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016

“…We also observed that problems of caregivers were compounded by difficulties seeking care and lack of coordination of services, as well as gaps in the knowledge of healthcare providers. 25 We demonstrated that there are high costs incurred, both on the side of the affected families and the healthcare system, which had potentially large financial impacts (paper in submission). This information is critical to improving services to better support the affected children and their families, and prior to our study was assumed but not documented systematically.…”