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

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.

How congenital Zika virus impacted my child’s functioning and disability: a Brazilian qualitative study guided by the ICF

“…35 Furthermore, lack of access to services (mainly due to distance, cost and lack of availability) was a massive issue for families of children with CZS. 36 From our study, it is clear that services for support and rehabilitation in a single location would minimise problems of low attendance and/or avoidance of services. Lack of attendance interferes hugely with enabling good outcomes when using focused, contextbased and evidence-based rehabilitation.…”

“…Over time the focus will shift to supporting inclusion, independent living and to continuing to maintain health and function. 36 There were a number of limitations in our study which must be taken into account. The sample was extracted from three Brazilian cities, from public or not-for profit rehabilitation centres.…”

Juntos: A Support Program for Families Impacted by Congenital Zika Syndrome in Brazil

“…The needs analysis that we undertook at the beginning of the project 8 as well as more recent literature 27 , 28 has highlighted overlaps and similarities between cerebral palsy and CZS. We suggest that children with CZS and their caregivers may benefit by integrating and linking with services and programs for children with other neurodevelopmental disabilities.…”

Mothers as facilitators for a parent group intervention for children with Congenital Zika Syndrome: Qualitative findings from a feasibility study in Brazil

“…A scoping visit by the research team to Salvador, Bahia, prior to piloting the intervention, demonstrated that the majority of support that was provided to families was medically orientated and that informal support networks that were established varied in focus and structure [39]. For example, some groups focussed on advocacy and promoting children's rights, while many mothers reported being part of WhatsApp groups with other caregivers, which provided some social and emotional support on an ad hoc basis.…”