Juntos: A Support Program for Families Impacted by Congenital Zika Syndrome in Brazil

Antony Duttine; Tracey Smythe; Miriam Ribeiro Calheiros de Sa; Silvia Ferrite; Maria Elisabeth Moreira; Hannah Kuper

doi:10.9745/GHSP-D-20-00018

Key Messages

A community-based family group program for caregivers of children with congenital Zika syndrome (CZS) was developed based on an existing program for families of children with cerebral palsy and pilot tested in Brazil.
Program managers developing group initiatives should consider fast-track learning approaches to adjust their intervention to make it more useful to participants.
Clinicians and managers of Zika initiatives should consider that caregivers of children with CZS will likely benefit from the ability to engage and exchange with caregivers of children with other neurodevelopmental disabilities.
Program managers delivering community interventions targeting caregivers should consider engaging expert mothers as group cofacilitators.
Integrating emotional support activities into groups that address child development is important, and adds value.

ABSTRACT

Background:

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.

Program Development and Piloting:

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.

Program Description:

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.

Conclusions:

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.

Received: December 23, 2019.
Accepted: November 4, 2020.
Published: December 23, 2020.

This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly cited. To view a copy of the license, visit http://creativecommons.org/licenses/by/4.0/. When linking to this article, please use the following permanent link: https://doi.org/10.9745/GHSP-D-20-00018

View Full Text