RESUMEN
Abstract The objective of this study was to describe if the victims of the Zika have access to essential public policies to guarantee social rights. Methods: We used a cross-sectional study of a historical cohort of children with congenital Zika syndrome (CZS) in a reference hospital. CZS diagnosis was based on the Ministry of Health protocol. The variables analyzed were sociodemographic and social rights of children. Results: Of the 161 children seen from April 2016 to July 2018, 42 were diagnosed with CZS. Of these, 37 children participated in the study and 75.7% of them had severe neurological disorders. Anticonvulsants were used by 73% of the children, with 81% paid by families. The families were also responsible for purchasing nutritional formulas and diapers in, respectively, 79% and 100% of cases, and 89% of the children had access to rehabilitation therapy, although 70% of them faced several barriers to do it. Of the 24 working mothers, 83% did not return to the labor market after the birth of their children. Conclusions: The results showed that the families were at an intersection between the integral activity of caring for a child with severe disabilities and inefficient and omissive public authorities, a disincentive and discouraging context that made them give up in seeking their rights.
Resumo Este estudo teve como objetivo analisar se as vítimas da epidemia da Zika têm acesso às políticas públicas essenciais à garantia dos direitos sociais. Métodos: Estudo transversal de uma coorte histórica de crianças com síndrome da Zika congênita (SZC) em um hospital de referência. Utilizou-se o protocolo do Ministério da Saúde para o diagnóstico de SZC. As variáveis analisadas foram características sociodemográficas e direitos sociais das crianças. Resultados: Das 161 crianças avaliadas de abril/2016 a julho/2018, 42 apresentavam SZC. Destas, 37 participaram do estudo, 75,7% com grave comprometimento neurológico. Anticonvulsivantes eram utilizados em 73% dos casos, 81% custeados pelas famílias. As famílias ainda custeavam fórmulas nutricionais (79%) e fraldas (100%). A terapia de reabilitação era realizada por 89% das crianças, embora 70% enfrentassem diversas barreiras para tal. Das 24 mães que trabalhavam, 83% não retornaram ao mercado de trabalho após o nascimento dos filhos. Conclusões: As famílias estavam situadas na interseção entre a atividade integral de cuidado de um filho com deficiências graves e a ineficiência e omissão do poder público, um contexto de desincentivo e desalento que, vencendo-as pelo cansaço, fazia com que muitas acabassem desistindo de tentar buscar seus direitos.
RESUMEN
The objective of this study was to describe if the victims of the Zika have access to essential public policies to guarantee social rights. METHODS: We used a cross-sectional study of a historical cohort of children with congenital Zika syndrome (CZS) in a reference hospital. CZS diagnosis was based on the Ministry of Health protocol. The variables analyzed were sociodemographic and social rights of children. RESULTS: Of the 161 children seen from April 2016 to July 2018, 42 were diagnosed with CZS. Of these, 37 children participated in the study and 75.7% of them had severe neurological disorders. Anticonvulsants were used by 73% of the children, with 81% paid by families. The families were also responsible for purchasing nutritional formulas and diapers in, respectively, 79% and 100% of cases, and 89% of the children had access to rehabilitation therapy, although 70% of them faced several barriers to do it. Of the 24 working mothers, 83% did not return to the labor market after the birth of their children. CONCLUSIONS: The results showed that the families were at an intersection between the integral activity of caring for a child with severe disabilities and inefficient and omissive public authorities, a disincentive and discouraging context that made them give up in seeking their rights.
