Fragmented care: the response of the Persons with Disabilities Care Network to children with Congenital Zika Syndrome

Abstract

The aim of this study was to analyze the organization and structure that the Persons with Disabilities Care Network (RCPD) offers children with Congenital Zika Syndrome (CZS) in the Salvador Health Region (BA). We conducted a qualitative study to investigate the experiences of the children’s caregivers based on therapeutic itineraries and the perceptions of RCPD managers and professionals. Despite general agreement between the interviewees, only the caregivers highlighted problems. There are no health care regulation defined among the RCPD services, meaning that caregivers had to browse the system aimlessly to search for care. The fragmentation of care revealed by the findings prevents the provision of continuous care coordinated between the different health services, resulting in ad hoc care interventions. CZS highlights the limitations of the RCPD, demonstrating the incongruence between practice and national policy.

Congenital Zika Syndrome; Persons with disabilities; Health services; Health care