Abstract
The Zika virus outbreak in Brazil in 2015 affected thousands of people. Zika is now known to cause congenital malformations leading to impairments and developmental delays in affected children, including Congenital Zika Syndrome (CZS). Children with CZS have complex care needs. Caregivers require significant levels of support to meet these needs, and there are large gaps in healthcare services. This study aims to develop, pilot and assess the feasibility and scalability of a community-based Family Support Programme for caregivers of children with CZS. The programme is adapted from the Getting to Know Cerebral Palsy (GTKCP) programme for the context of CZS in Brazil. GTKCP is a 10-session programme held with 6-10 caregivers in the local community. It includes practical, educational, peer-support and psychosocial aspects, which aim to improve confidence and capacity to care for a child with CP, and quality of life and empowerment of caregivers. The research project contains four components: Ascertaining need for the caregiver programme: a mixed-methods approach that included two literature reviews, interviews with key stakeholders in country, and incorporation of findings from the Social and Economic Impact of Zika study.Adapting GTKCP for the context of CZS and Brazil: undertaken with guidance from technical experts.Pilot testing the intervention: deliver the 10-session programme to one group of caregivers of children with CZS in Rio de Janeiro and another in Greater Salvador.Update the manual through fast-track learning from participant and facilitator feedback. Assessing the feasibility of the intervention for scale up: deliver the updated programme to two groups each in Rio de Janeiro and Greater Salvador, and evaluate the acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy, through questionnaires, direct observation, semi-structured interviews and cost calculation. The project has ethics approval in both the UK and Brazil.
Highlights
Introduction several outbreaks of the Zika virus have occurred across the world since it was first identified in the 1950s, it was not until the sudden increase in numbers of cases were recorded in Brazil in 2015 that Zika started to garner significant international attention[1]
Some 6 months after the first Brazilian cases, a spike in cases of microcephaly was noted and caused Brazil and the international health community to question whether there was a link between Zika and birth anomalies[2]
The approximately 3000 cases of microcephaly with confirmed Zika infection may dramatically underestimate the true scale of the condition in Brazil
Summary
Protocol Overview of study design and setting The Family Support Programme is the implementation arm of two research initiatives undertaken by the International Centre for Evidence in Disability at the London School of Hygiene & Tropical Medicine. Findings from the Social and Economic Impact of Zika study[25], funded by the Wellcome Trust, were incorporated into the needs analysis This included data from semi-structured interviews[27] with families of children with CZS to ascertain their needs and the impact of CZS on their lives, assessing need for psychological, social, financial and other supports. Four sources of data were collected to give an overall valuation of the programme and provide the appropriate information for the assessment into the feasibility These include collecting data from participants of the programme, facilitators and other key stakeholders: Participant data Pre- and post-programme semi-structured questionnaires[29] were completed by all participants in the programme before the first session and after the final session of each group. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript
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