The mosquito-borne Zika virus has left hundreds of Brazilian families grappling with a new reality: Caring for disabled infants and toddlers.
Natalie Williams, assistant professor of child, youth and family studies, is joining Brazilian researchers to explore how to support caregivers whose children have been affected by congenital Zika virus syndrome, a neurological condition associated with cognitive and physical disabilities.
“When babies are born with major disabilities, families are often unprepared for the impact it will have on the entire family and how the family functions,” Williams said. “It can be very stressful, and sometimes families don’t have the resources to cope effectively. This is especially true for low income families, who have been disproportionately affected by the Zika outbreak.”
Williams is collaborating with Pompéia Villachan-Lyra, professor at Brazil’s Federal Rural University of Pernambuco, and Nebraska’s Christine Marvin, professor of special education and communication disorders, and Cody Hollist, associate professor of child, youth and family studies, to identify strengths and key stressors for Brazilian families and early childhood educators affected by the Zika outbreak.
The team is first surveying 100 caregivers with infants and toddlers whose disabilities are related to the Zika virus. They are then identifying a high-risk group—caregivers with symptoms of anxiety or depression—and conducting interviews to learn about caregivers’ daily routines involving their child.
The team is also mapping family and community systems to better understand what is available as a source of support and how it’s being used. This information, together with caregiver interviews, will help the research team develop targeted programs to support families.
“Our goal is to pinpoint specific areas for intervention, and we wanted to use an organic approach that was driven by the experiences of those affected by congenital Zika virus syndrome,” Williams said. “I think we have an opportunity to really have an impact on these families and improve their quality of life and their children’s quality of life.”
Williams is also considering how her team’s research could support early intervention programs in the United States, where she says caregiver support can be overlooked while trying to meet the needs of an ill or disabled child.
Ultimately, Williams wants to develop a low-cost program that positively impacts caregivers and document its effects on patients: Do they have higher levels of functioning? More advanced developmental outcomes? Are they doing better in school or receiving fewer services?
“I’m really excited for the next steps so we can get to the intervention development and implementation phase,” Williams said. “We are really hoping this is a first step in a long relationship with our colleagues in Brazil. It is about the project but also about the partnership.”
Williams’ research is part of the University of Nebraska-Lincoln/Brazil Early Childhood Initiative. Launched May 2016 in São Paulo, Brazil, the initiative aims to foster international collaboration around priority areas in early childhood.