Social and economic impacts of congenital Zika syndrome in Brazil: Study protocol and rationale for a mixed-methods study

Abstract

Global concern broke out in late 2015 as thousands of children in Brazil were born with microcephaly, which was quickly linked to congenital infection with Zika virus (ZIKV). ZIKV is now known to cause a wider spectrum of severe adverse outcomes—congenital Zika syndrome (CZS)—and also milder impairments. This study aimed to explore the social and economic impacts of CZS in Brazil. Data was collected through mixed methods across two settings: Recife City and Jaboatão dos Guararapes in Pernambuco State (the epicentre of the epidemic), and the city of Rio de Janeiro (where reports of ZIKV infection and CZS were less frequent). Data was collected May 2017-January 2018. Ethical standards were adhered to throughout the research. In-depth qualitative interviews were conducted with: mothers and other carers of children with CZS (approximately 30 per setting), pregnant women (10-12 per setting), men and women of child-bearing age (16-20 per setting), and health professionals (10-12 per setting). Thematic analysis was undertaken independently by researchers from at least two research settings, and these were shared for feedback. A case-control study was undertaken to quantitatively explore social and economic differences between caregivers of a child with CZS (cases) and caregivers with an unaffected child (controls). We aimed to recruit 100 cases and 100 controls per setting, from existing studies. The primary caregiver, usually the mother, was interviewed using a structured questionnaire to collect information on: depression, anxiety, stress, social support, family quality of life, health care and social service use, and costs incurred by families. Multivariable logistic regression analyses were used to compare outcomes for cases and controls. Costs incurred as a result of CZS were estimated from the perspective of the health system, families and society. Modelling was undertaken to estimate the total economic burden of CZS from those three perspectives.

Development and assessment of the feasibility of a Zika family support programme: a study protocol

“…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. The sister study is a mixed methods evaluation of the social and economic impacts of CZS that took place concurrently 25 and data fed into the content of the Family Support Programme.…”

“…A mixed-methods approach was adopted to identify the needs for a family support intervention. This approach included reviewing emerging and associated literature, an in-country needs assessment with qualitative investigations, and incorporation of findings from the sister study 25 .…”

The promise and pitfalls of social science research in an emergency: lessons from studying the Zika epidemic in Brazil, 2015–2016

“…Publications have been submitted to and published in peer-reviewed international journals. 19 24 25 27 Dissemination events were held in Brazil and in the UK. In Recife, a 1-day workshop was held, including researchers, healthcare professionals, Ministry of Health personnel and mothers of affected children.…”

“…From our perspective, the information collected in the Social and Economic Impact of Zika study was valuable, providing detailed insight into the programmatic needs of mothers and their affected children, such as for economic and social support, mental health services and better coordination of health services. 19 24 25 27 Of course, we were not the only social scientists working within the Zika epidemic. Notably, Debora Diniz and team conducted excellent research probing the rights and realities of women affected by Zika in Brazil, [30][31][32][33][34] but there are too few other examples.…”

“…The specific focus is the Social and Economic Impact of Zika Study. 19 Our aim in that study was to describe the social and economic impacts of CZS in Brazil, considering families of children with CZS, health professionals, pregnant women and people of childbearing age. Our overall ambition therefore was to use social science approaches to identify the impacts and unmet needs as a result of the epidemic, and consequently to plan and advocate for better services to fill these gaps.…”