The article focuses on the experience of family and social frailty of children with congenital Zika virus syndrome (CZVS) and discusses the changes in support networks, in the sense of both their capacities and shortcomings. This qualitative study adopted a clinical-psychosociological approach. The study analyzed family narratives in 32 group meetings conducted in an outpatient setting in a referral research institute for CZVS care in the State of Rio de Janeiro, Brazil. The article presents part of the results from a larger study focused on understanding the psychosocial effects of illness and its impact on parenting and care of children with CZVS. The article concludes by discussing how parents’ experience expresses complex processes that reveal family and social movements of support and recognition, but also, in the opposite sense, the lack of backup for mothers and fathers who struggle for recognition, social inclusion, and their children´s right to health and education.
Keywords:
Zika Virus; Family Relations; Disabled Persons; Social Vulnerability