Abstract
The 2015-2016 Zika virus outbreak in Brazil was unprecedented and resulted in the birth of more than 3,000 children with congenital Zika syndrome (CZS). These children experience multiple complex health conditions and have limited services to support them and their family's needs. An existing family support program for children with cerebral palsy (Getting to Know Cerebral Palsy) was adapted to the Zika context in Brazil through expert consultation. The program was pilot tested at 2 sites among 6 groups of caregivers (total of 48 families) from August 2017 to June 2018. Group observation and focus group discussions with facilitators and participants at the end of each session informed fast-track learning, which was used to tailor the program for future groups. Fast-track learning-adjusting the intervention in real time based on gathered feedback-was found to be a helpful process to inform and hone the program from its initial concept. The intervention, Juntos, is a facilitated participatory group program for caregivers of children who have CZS. The group sessions are cofacilitated by a parent of a child who has CZS and an allied health professional. The group meets for 10 sessions that last 4 hours. Each session includes an icebreaker, activities, and group discussions. Content covers practical information on caring for a child with a developmental disability including that caused by Zika. Psychosocial support forms an important component, and families are guided from the first week to define and develop their own communities of support. Six pilot groups were successfully run in Rio de Janeiro and Greater Salvador, Bahia. The groups gave positive feedback on acceptability and demand. The program has the potential to be an important tool for community health and social support services in South America in response to Zika. The program can also be applied to children with neurodevelopmental disabilities other than those caused by the Zika virus, which could be important in ensuring families of children with CZS are less isolated.
Highlights
BACKGROUNDThe Zika outbreak of 2015–2016 in South America caught the international health community unaware
Program Development for Families Impacted by Congenital Zika Syndrome www.ghspjournal.org proven to cause developmental impairments in children[3,4] collectively known as congenital Zika syndrome (CZS).[5]
We found that providing some services for specialized health children with complex multiple impairments at and rehabilitative the community level could be crucial to address services, informal the unmet needs experienced by families of chil- support groups, dren with CZS in Brazil and may be more afford- and formalized able than centralized services
Summary
The Zika outbreak of 2015–2016 in South America caught the international health community unaware. We found that providing some services for specialized health children with complex multiple impairments at and rehabilitative the community level could be crucial to address services, informal the unmet needs experienced by families of chil- support groups, dren with CZS in Brazil and may be more afford- and formalized able than centralized services Families of children with CZS, those children with more severe impairments, did not have enough access to specialized health and rehabilitative services and informal support groups, and formalized support for caregivers was limited. There was some Because CZS and concern raised by clinicians that children with cerebral palsy mild to moderate impairments stemming from have similarities, Zika infection were less likely to attend rehabilita- programs tion and that these caregivers were an important group to be targeted.
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