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PROGRAM CASE STUDY
Open Access

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 and Hannah Kuper
Global Health: Science and Practice December 2020, 8(4):846-857; https://doi.org/10.9745/GHSP-D-20-00018
Antony Duttine
aInternational Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, United Kingdom.
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  • For correspondence: antony.duttine@lshtm.ac.uk
Tracey Smythe
aInternational Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, United Kingdom.
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Miriam Ribeiro Calheiros de Sa
bInstituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira, Fiocruz, Rio de Janeiro, Brazil.
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Silvia Ferrite
cDepartment of Speech and Hearing Sciences, Federal University of Bahia, Salvador, Brazil.
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Maria Elisabeth Moreira
bInstituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira, Fiocruz, Rio de Janeiro, Brazil.
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Hannah Kuper
aInternational Centre for Evidence in Disability, London School of Hygiene & Tropical Medicine, London, United Kingdom.
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Figures & Tables

Figures

  • Tables
  • FIGURE 1.
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    FIGURE 1.

    Timeline of Juntos Program Development for Caregivers of Children with Congenital Zika Syndrome, Brazil

  • FIGURE 2.
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    FIGURE 2.

    Theory of Change for the Juntos Program for Caregivers of Children with Congenital Zika Syndrome, Brazil

  • Figure3
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    The Juntos logo, which facilitators, psychologists, and site coordinators created to complement the program name’s meaning.

Tables

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    TABLE 1.

    Finalized Module Topics Included in Juntos, A Community-Support Group for Caregivers of Children with Congenital Zika Syndrome in Brazil

    ModuleTopics
    1. Introduction
    • About the program

    • Information about Zika and Congenital Zika Syndrome

    • How to find information

    • Personal stories

    2. Our child
    • Introducing your close family and friends

    • Development milestones for young children

    • Determining your child’s progress

    • Managing irritability and crying

    3. Positioning and moving
    • How to position children who need assistance

    • How to assist children to learn to move

    4. Eating and drinking
    • Feeding challenges

    • Practical skills to address challenges for your child

    5. Communication
    • Importance of communication

    • Practical advice to help your child communicate

    6. Play and early stimulation
    • Importance of play for children to develop and learn

    • Early stimulation

    • Making simple toys

    • Inclusion of play in the family and broader community

    7. Everyday activities
    • How to use everyday activities to help your child develop

    • Managing seizures

    8. Uniting our voices
    • Understand the context of disability rights

    • Education

    • Communicating with your health team

    • Advocating

    9. Our community
    • Who is in your community?

    • Common barriers to inclusion

    • Addressing negative attitudes and exclusion

    • Social activity

    10. Next steps
    • Summing up

    • Planning next steps for yourself and the group

    • View popup
    TABLE 2.

    Example of Content From Facilitated Group Session 4 on Eating and Drinking from Juntos, A Community-Support Group for Caregivers of Children With Congenital Zika Syndrome in Brazil

    ExampleDiscussionAim
    Icebreaker
    In pairs: One person tries to give the other a drink of water in different positions (e.g., head leaning back, turned to one side, or flopping forwards)
    How easy or difficult is it to swallow in each position? How does it feel to be fed?To understand a range of issues that your child may experience with eating and drinking
    Discussion
    As a large group to share experiences
    What is a nutritious or “balanced” diet?To know what a balanced diet is and how to maximize your child’s nutritional intake and prevent malnutrition
    Activity
    Show a banana and a biscuit and other common food
    Discuss—Are the items hard or soft? Can they be made into a smooth puree? How?To learn ways to feed your child safely
    • View popup
    TABLE 3.

    Example of Content From Facilitated Group Session 6 on Play and Early Stimulation from Juntos, A Community-Support Group for Caregivers of Children With Congenital Zika Syndrome in Brazil

    ExampleDiscussionAim
    Icebreaker
    In groups of 3: each group is given one inexpensive everyday item (e.g., cup, piece of cloth, container, ball) and everyone uses their imagination to transform the object into something else and acts it out
    What is play?To understand how our imagination works with play and how children have an even greater imagination than adults
    Discussion
    As a large group to share experiences
    What have you found play helps your child to do?
    Does your child need to play?
    To know that play gives children an opportunity to explore, learn about their environment and to use and develop their senses
    Activity
    Toy making, such as making bells and rings with ribbons
    Discuss—How can you involve short periods of play in your daily activities? How can you involve other members of your family in playing with your child?To learn ways for play to be fun, and to see how fun can motivate children to move and learn and how other family members can be included
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Global Health: Science and Practice: 8 (4)
Global Health: Science and Practice
Vol. 8, No. 4
December 23, 2020
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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
Global Health: Science and Practice Dec 2020, 8 (4) 846-857; DOI: 10.9745/GHSP-D-20-00018

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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
Global Health: Science and Practice Dec 2020, 8 (4) 846-857; DOI: 10.9745/GHSP-D-20-00018
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    • ABSTRACT
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