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Congenital Zika Syndrome-Assessing the Need for a Family Support Programme in Brazil

Antony Duttine1, Tracey Smythe1, Míriam Ribiero Calheiro de Sá2

  • 1International Centre for Evidence on Disability, Department of Clinical Research, Faculty of Infectious and Tropical Diseases, London School of Hygiene & Tropical Medicine, London WC1E 7HT, UK.

International Journal of Environmental Research and Public Health
|May 23, 2020
PubMed

Insights

A family support program is needed for children with Congenital Zika Syndrome (CZS) in Brazil. Adapting existing programs like Getting to Know Cerebral Palsy could address unmet needs for these families.

Area of Science:

  • Public Health
  • Pediatrics
  • Global Health

Background:

  • The Zika virus outbreak in Brazil led to Congenital Zika Syndrome (CZS), causing developmental impairments.
  • Families of children with CZS face significant challenges in mental health, healthcare access, and quality of life.
  • Existing support for CZS families is often medically focused, lacking structured community-based programs.

Purpose of the Study:

  • To determine the need for a family support program for CZS in Brazil.
  • To assess the adaptability of the Getting to Know Cerebral Palsy (GTKCP) program for CZS families.
  • To identify gaps in current support systems for families affected by CZS.

Main Methods:

  • Systematic literature review on the needs of families with CZS or cerebral palsy (CP) in low- and middle-income countries.
  • Review of the Social and Economic Impact of Zika study findings.
  • Scoping visits to three facilities in Brazil serving children with CZS to evaluate GTKCP adaptability.

Main Results:

  • Caregiver challenges in mental health, healthcare access, and quality of life are consistent between CZS and CP populations.
  • Current support is primarily medical, with informal networks lacking structure.
  • Caregivers and practitioners expressed strong interest in structured, community-based support programs.

Conclusions:

  • A structured family support program is relevant and needed for families of children with CZS in Brazil.
  • Adapting the GTKCP program shows potential to fill a critical gap in the Zika response.
  • Community-based interventions are essential to improve the well-being of families affected by CZS.

Keywords:
BrazilZikacerebral palsycommunity programmecongenital zika syndromefamily support

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