Assessing the feasibility for Juntos: a support programme for caregivers of children with congenital Zika syndrome in Brazil during the 2015-16 Zika epidemic

Introduction: When the Zika virus emerged in Brazil in 2015, what also emerged was the previously unknown realisation that the virus causes microcephaly and other congenital abnormalities. Congenital Zika syndrome (CZS) affected thousands of children who may have lifelong impairments and disabilities. This DrPH project describes the development, piloting, and feasibility testing of a support programme for caregivers of children with CZS that took place between April 2017 and August 2018. Seven papers have been published in peer-reviewed literature with respect to the intervention and four are included in the main body of this research paper thesis: a study protocol paper; a needs analysis; an intervention description; and the final feasibility analysis. Introductory and discussion sections also elaborate on the work undertaken. Methods: The needs analysis included a literature review, analysis of emerging evidence and a scoping visit. It identified important gaps for caregivers such as peer-to-peer support, mental health needs and education. Juntos, a ten-session programme led by two-co-facilitators was developed based on two pre-existing programmes for children with Cerebral Palsy – a neurodevelopmental disability that often has a similar presentation to CZS. Juntos was initially tested in two groups in Rio de Janeiro and Salvador, then adjusted based on feedback and piloted in four additional groups in the same cities. The feasibility analysis was undertaken using a public health framework based on qualitative and quantitative data. Results: Juntos was successfully developed and piloted for 48 families. The feasibility analysis showed positive outcomes particularly in relation to acceptability, demand, and implementation. Some limited efficacy was also shown such as self-reported improvements in caregiver quality of life. Conclusion: Despite positive initial piloting of Juntos there are many more implications to be considered if it is to be scaled up and considered a success, including policy, programme, and research actions.