Healthcare for children with congenital Zika syndrome: analysis of access to social rights

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.

High-Risk Areas for Congenital Zika Syndrome in Rio de Janeiro: Spatial Cluster Detection

“…Usually, these areas have a higher population density and place families in vulnerable situations, without support to meet all the needs of a syndromic child [79][80][81][82]. Studies conducted in other Brazilian cities corroborate these results [70,83].…”

“…They portray children with congenital anomalies capable of causing a high level of dependence, a condition that demands comprehensive and specialized attention with broad assistance and social support [5,7,8,90,91]. However, access to healthcare for children with CZS is difficult due to the social vulnerability observed in these families and barriers to accessing the healthcare network; insufficient and fragmented assistance; a lack of communication between the various specialized services and the different levels of care; and a lack of a health system referral and counter-referral network [11,70,74,79,80,82,92,93]. Furthermore, it is difficult to access health units due to distance, generating greater costs and time expenditure, especially in places with greater social vulnerability [11,70,74,79,80,82,92].…”

“…In Brazil, the healthcare system is universal and free of charge. However, there are reports of barriers in accessing medical supplies such as anticonvulsants, diapers, and nutritional formulas, resulting in increased costs for families [70]. Additionally, studies point out weaknesses in prenatal care follow-up due to insufficient coverage and limited access to diagnostic support networks.…”

Food healthiness judgements among Brazilian and German lay adults

“…However, moderation is also recognised to be important, as previously suggested among German participants: ‘healthy is what tastes good, in moderation’ (Yarar & Orth, 2018). Furthermore, only Brazilians mentioned Culinary/cooking methods as reasons to list a food as healthy which suggests an additional touch of traditionality for this group (da Silva Oliveira et al, 2022; da Silva Oliveira & da Silva Santos, 2020). Lastly, Weight Control, Weight Gain and Low Calories seemed to be reasons slightly more relevant to German participants, supporting one of the lay theories among Germans: ‘healthy is everything that makes me slim and pretty’ (Yarar & Orth, 2018).…”