The Likely Impact of Congenital Zika Syndrome on Families: Considerations for Family Supports and Services

Abstract

Congenital Zika virus infection has obvious implications for infants, and considerable research has addressed the nature and consequences of congenital Zika syndrome (CZS). Children with classic CZS meet the criteria for "children with medical complexity," and ongoing research is required to understand the range of needs and optimal treatment options. Far less attention has been given to the consequences of CZS for families, which are both immediate and lifelong. Although families of children with CZS have much in common with families of other children with disabilities, at least 4 features of CZS have special family implications: (1) the severity of the impact on children with obvious abnormalities at birth, coupled with the anticipation of a lifetime of caregiving and economic burdens; (2) uncertainty about the unfolding consequences, both for obviously affected children and for exposed children with no symptoms at birth; (3) a lack of specialized professional knowledge about the course of the disease or treatment options; and (4) social isolation, a lack of social or community supports, and potential stigma. Supporting families will require a family-centered approach to services, extensive care coordination, access to evolving new information, ongoing surveillance, formal and informal supports, and individualized child and family services.