Congenital zika syndrome: analysis of parent support networks

Abstract

Objective: To understand the role of support networks in the care of children affected by Congenital Zika Syndrome. Methods: This is a qualitative study, conducted at a State Reference Center on Neurodevelopment, in northeastern Brazil, between April 2017 and February 2018. Parents of children with microcephaly treated at the site participated. 18 semi-structured interviews were conducted, three with father and mother and 15 only with mothers, totaling 21 participants. The sample was defined by the saturation criterion and content analysis was used in the thematic modality. Results: The results are presented from the categories of analysis "informal network" and "formal network". The informal support network, especially grandparents, exercised important emotional and financial support to parents. Virtual social networks stood out as a space for sharing information and experiences. Regarding the formal support network, the families established stronger bonds with specialized care professionals who offered technical support and care to parents and children. Primary care, on the other, played the role of referral to specialized care. Different degrees of resolution were reported by the municipalities, in terms of programs, the performance of managers and professionals. Conclusion: Formal and formal networks acted in a complementary way in the treatment and support of children with Congenital Zika Syndrome. The insertion in different indirect networks allowed social support to face the impact caused by the disease. Despite the ministry of health's investment in primary care, fragility was identified in this level of care.