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Juntos: A Support Program for Families Impacted by Congenital Zika Syndrome in Brazil
Antony Duttine1, Tracey Smythe2, Miriam Ribeiro Calheiros de Sa3
1International Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, United Kingdom. antony.duttine@lshtm.ac.uk.
Insights
A new family support program, Juntos, was developed and piloted for caregivers of children with congenital Zika syndrome (CZS) in Brazil. This program offers psychosocial support and practical information, showing promise for community health services.
Area of Science:
- Public Health
- Pediatrics
- Global Health
Background:
- The 2015-2016 Zika virus epidemic in Brazil led to over 3,000 births with congenital Zika syndrome (CZS).
- Children with CZS face complex health challenges, and their families often lack adequate support services.
Purpose of the Study:
- To adapt and pilot a family support program for caregivers of children diagnosed with congenital Zika syndrome in Brazil.
- To evaluate the feasibility and acceptability of the adapted program through pilot testing.
Main Methods:
- An existing program for cerebral palsy caregivers was modified through expert consultation for the Zika context.
- The adapted program, Juntos, was pilot-tested with 48 families across 6 groups in Brazil.
- Fast-track learning, incorporating real-time feedback, was used to refine the intervention during the pilot phase.
Main Results:
- The Juntos program, a 10-session facilitated group intervention, was co-facilitated by parents and health professionals.
- Pilot groups in Rio de Janeiro and Salvador received positive feedback regarding program acceptability and demand.
- The program effectively provided practical care information and psychosocial support, fostering family support networks.
Conclusions:
- The Juntos program demonstrates potential as a valuable community health and social support resource in South America for families affected by Zika.
- The program's adaptable framework can be applied to support families of children with other neurodevelopmental disabilities, reducing isolation.
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.
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