The Speeches of the Families Taking Care of Children with Special Healthcare Needs: The Tricks and Tracks Ways of the Reference and Counter-Reference System

Children needing continuous and high-complexity care, have been named by scientific literature as children with special healthcare needs (crianças com necessidades especiais de saúde - CRIANES). By definition, CRIANES are dependent of health services to assure continuity of home care since they have lifestyle and functional limitations. It also includes those children with complex clinical care, with chronic and disabling diseases, prematurity and those who are dependent on technology. The aims of this study are to identify the paths the families of those children have to go through; to describe the implications in the field of assistance; and to discuss their experiences to include CRIANES in the formal health system network. The research has been submitted to and approved by the Ethics Committee of EEAN/HESFA, as ruled by resolution 196/96 of Health National Counsel. It is a descriptive study of qualitative nature and has been conducted to produce and to analyze data according Fairclough analytical model. The participants were selected after previous interviews summing up to 22 health caretakers who have been split into four subgroups in order to develop the dynamics of creativity and sensitivity named in Portuguese Mapa Falante. We have analyzed 20 medical records of children attended at a federal public hospital rehabilitation service located in the city of Rio de Janeiro, Brazil. The analyses of the speeches have shown that the ways of access to children protection fundamental rights have been marked by adversities and conflicts. In our modeling we have seen a social matrix with a transversal stress of institutional power, of gender, economic and familial. In the (mis) leads of CRIANES’ inclusion in those health cares it came up a (un)common geography in the caretakers’ trajectories. The experiences and lives of CRIANES’ families have indicated accessibility difficulties to health services and to social benefits.