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.
Highlights
Since the peak of the Zika epidemic in 2015–2016, the number of new cases of Zika infection and of confirmed Congenital Zika Syndrome (CZS) has gradually declined across the Americas [1], the virus is considered endemic to the region [2]
What are the needs of families of children with CZS in Brazil, and are they being met by the existing support services?; Would a family support programme be potentially useful in the post-Zika context in Brazil?; Are the similarities between cerebral palsy (CP) and CZS sufficient to suggest that GTCKP/Early Intervention Programme (EIP) could be used as a basis for a Brazil family support intervention?
Seven eligible papers were identified that assessed the needs of children with CZS [21,22,23,24,25,26,27], and 31 eligible papers focussed on the needs of children with CP [18]
Summary
Since the peak of the Zika epidemic in 2015–2016, the number of new cases of Zika infection and of confirmed Congenital Zika Syndrome (CZS) has gradually declined across the Americas [1], the virus is considered endemic to the region [2]. Brazil was the most heavily impacted country, accounting for 47.9% of total cases between 2016 and the end of 2019 [3]. The Ministry of Health in Brazil reports that since 2015, there have been 3474 confirmed and 743 probable cases of CZS with a further 2659 cases under investigation [4]. There are likely to be many more cases that have not been designated as caused by Zika, given the emerging evidence of more mild and later onset impairments and the lack of a reliable retrospective test for Zika. Res. Public Health 2020, 17, 3559; doi:10.3390/ijerph17103559 www.mdpi.com/journal/ijerph
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