ArticleGlobal health, science and practice2020
Juntos: A Support Program for Families Impacted by Congenital Zika Syndrome in Brazil.
Article in Global health, science and practice, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed, 19 citations in OpenAlex.
- Feasibility of implementing a community-based participatory group programme to improve access to healthcare for people with disabilities in Luuka district, Uganda: a mixed-methods pilot study.BMJ public health · 2026Article
- Adapting a Participatory Group Programme for Caregivers of Children with Complex Neurodisability from Low-, Middle-Income Countries to a High-Income Setting: Moving from "Baby Ubuntu" to "Encompass".International journal of environmental research and public health · 2025Article
- A coadapted community-based participatory group programme for parents/carers of children with complex neurodisability (Encompass-2): a pilot and feasibility study protocol.Pilot and feasibility studies · 2025Article
- [Ways of acting out the congenital Zika virus syndrome among families in Bahia State, Brazil].Cadernos de saude publica · 2025Article
- Supporting caregivers of children living with disability in a humanitarian context: realist-informed evaluation of the 'BMJ global health · 2024Article
- Do children with disabilities have the same opportunities to play as children without disabilities? Evidence from the multiple indicator cluster surveys in 38 low and middle-income countries.EClinicalMedicine · 2024Article
- Nutritional care for children with feeding difficulties and disabilities: A scoping review.PLOS global public health · 2023Article
- Communication, inclusion and psychological wellbeing among deaf and hard of hearing children: A qualitative study in the Gaza Strip.PLOS global public health · 2023Article
- Participatory Visual Methods with caregivers of children with Congenital Zika Syndrome in Colombia: A case study.Wellcome open research · 2022Article
- Assessment of the feasibility of Juntos: A support programme for families of children affected by Congenital Zika Syndrome.Wellcome open research · 2022Article
- The feasibility of establishing parent support groups for children with congenital Zika syndrome and their families: a mixed-methods study.Wellcome open research · 2021Article
- Learning From Neighbors.Global health, science and practice · 2020Article
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Authors and funding
6 authors at 3 institutions in 3 countries.
Funding
Abstract
backgroundThe 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.
conclusionsThe 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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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.