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.

Women's reluctance for pregnancy: Experiences and perceptions of Zika virus in Medellin, Colombia

“…We found that the participants were reliant on either their partners and family or on healthcare services overall. Thus, individual quality of life and family dynamics are impacted in many ways; for instance, previous research highlighted several challenges families of children with CZS may face, such as complex medical care and economic burden, uncertainty for children about the unfolding consequences of CZS, limited professional knowledge, and potential social isolation and stigma . Male involvement and their role in SRH are essential to consider for the care of children affected by Zika virus, especially in patriarchal societies.…”

Congenital Zika Virus Syndrome: Knowledge and How to Communicate the Diagnosis

“…normal course of pregnancy or would be associated with the disease. 7 Constant media discourse, curiosity in social support, and fear of having a child with CZVS have led women to experience different feelings about the epidemic. 16 Thus, the Internet and the social networks have become allies of most families to try to find out what they can about the consequences of the syndrome.…”

“…A study conducted with 13 children with CZVS without microcephaly at birth showed that all had consistent brain abnormalities coinciding with the syndrome. 7 The birth of a child is a moment that involves changes and bio-psychosocial adaptations for all family members, especially for the mother. The diagnosis of fetal malformation, regardless of the period, is very striking, bringing the experience of mourning the loss of the idealized baby, permeated by feelings of difficult understanding and expression.…”

“…The cumulative impact of factors such as limited professional knowledge, uncertainties about the consequences of the syndrome, treatment alternatives, as well as family financial and care challenges may include high levels of stress, anxiety and depression, as well as anger and tiredness, which may interfere directly with emotional well-being, with an implication in hope, optimism, physical health and quality of life. 7 From the problems presented, having CZVS as a new disease, which requires more knowledge and information about both the Zika virus and its complications, the following questions were asked: "How did pregnant mothers with Zika virus become aware of the diagnosis of Congenital Zika Virus Syndrome in their child? ; and "How was the diagnosis communicated?…”

How do mothers feel? Life with children with congenital Zika syndrome

“…Families of children living with CZS face demands for specialized care, as well as a lifelong responsibility for care . For mothers, an accumulated burden of factors influences daily care of children with significant disabilities.…”