It is hard to estimate the exact reach of the program, but an online community of practice established in 2014 to support the rollout of GTKCP has 412 members across 72 countries who share knowledge and experiences. 14 GTKCP is a 10-session parent-support program held in the community that aims to improve parents’ knowledge and skills in caring for their child and improve the quality of life of parents and children with developmental disabilities. 13 One such program, Getting to Know Cerebral Palsy (GTKCP), was developed by the London School of Hygiene & Tropical Medicine (LSHTM) after a childhood disability survey showed that caregivers of children with cerebral palsy in Bangladesh had very little access to information or support regarding the best way to care for their child and that available services were extremely limited. 7Īlthough CZS and cerebral palsy are separate conditions, because they have similarities, programs designed for caregivers of children with cerebral palsy could provide a strong foundation to adapt a program for the Zika context in Brazil.
As of March 2020, Brazil had 3,559 confirmed cases of CZS with an additional 2,871 cases under investigation (total 6,430 cases). 6 Brazil was the most affected country in the outbreak. Microcephaly is likely to be the tip of the iceberg in terms of affected children, as more mild or moderate impairments stemming from in utero Zika infection appear to be far more frequent. Evidence is emerging that Zika also causes an array of other cognitive and physical impairments that may not be immediately apparent at birth. 5 This syndrome includes microcephaly as the most pronounced and documented symptom, which is linked with severe and multiple impairments. 1, 2 Zika has now been proven to cause developmental impairments in children 3, 4 collectively known as congenital Zika syndrome (CZS). There had previously been no severe health consequences associated with the virus, despite Zika having been known since the 1940s. The Zika outbreak of 2015–2016 in South America caught the international health community unaware.