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

Antony Duttine, Tracey Smythe, Míriam Ribiero Calheiro de Sá, Silvia Ferrite, Maria Zuurmond, Maria Elisabeth Moreira, Anna Collins, Kate Milner and Hannah Kuper
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Antony Duttine: International 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
Tracey Smythe: International 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
Míriam Ribiero Calheiro de Sá: Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira, Rio de Janeiro 22250-020, Brazil
Silvia Ferrite: Department of Speech and Hearing Sciences, Institute of Health Sciences, Federal University of Bahia, Salvador 40110-902, Brazil
Maria Zuurmond: International 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
Maria Elisabeth Moreira: Instituto Nacional de Saúde da Mulher, da Criança e do Adolescente Fernandes Figueira, Rio de Janeiro 22250-020, Brazil
Anna Collins: International 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
Kate Milner: Murdoch Children’s Research Institute and Department of Paediatrics, University of Melbourne, Parkville, Victoria 3052, Australia
Hannah Kuper: International 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

IJERPH, 2020, vol. 17, issue 10, 1-14

Abstract: The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.

Keywords: congenital zika syndrome; Zika; family support; Brazil; cerebral palsy; community programme (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2020
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