“I found out about Zika virus after she was born.” Women’s experiences of risk communication during the Zika virus epidemic in Brazil, Colombia, and Puerto Rico

Introduction Providing accurate, evidence-based information to women with Zika infection during pregnancy was problematic because of the high degree of uncertainty in the diagnosis of the infection and the associated risk. The 2015-17 Zika virus epidemic overwhelmingly affected women in countries with limited access to safe abortion. Understanding women’s perspectives on risk communication during pregnancy in the context of an emerging pathogen can help inform risk communication in response to future outbreaks that affect fetal or child development. Methods We conducted a cross-sectional qualitative interview study with 73 women from 7 locations in Brazil, Colombia, and Puerto Rico to understand women’s experiences of ZIKV test and outcome-related communication during the ZIKV pandemic. We used thematic analysis to analyze the in-depth interviews. Findings Participants in Brazil and Colombia reported that the healthcare system’s lack of preparation and organization in communicating ZIKV test results and associated adverse outcomes led to their feeling abandoned and alone in confronting the challenges of a ZIKV-affected pregnancy. In contrast, participants in Puerto Rico reported that the regular testing schedules and clear, well-planned communication between the care team and between providers and pregnant women helped them to feel they could prepare for a ZIKV-affected pregnancy. Conclusion Communication of the risk associated with an emerging pathogen suspected to affect pregnancy and developmental outcomes is a fraught issue. Public health authorities and healthcare providers should work together in the interpandemic period to understand families’ preferences for risk communication during pregnancy in the presence of uncertainty and develop a community-informed plan for risk communication. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This work was supported by a DFID/Wellcome Trust grant to the UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP), Department of Sexual and Reproductive Health and Research [grant number 216002/Z/19/Z]. This research also received support from the Instituto Nacional de Salud, INFOVIDA and Centro de Atención y Diagnóstico de Enfermedades Infecciosas in Colombia. In Puerto Rico, this research received additional support from the Hispanic Alliance for Clinical and Translational Research supported by the National Institute of General Medical Sciences (NIGMS) National Institutes of Health (grant number U54GM133807). In Germany, this research received additional support from the ReCoDID Project, which is funded by the EU Horizon 2020 Research and Innovation Programme (grant agreement 825746) and the CIHR Institute of Genetics (grant agreement 01886-000) grants to LM. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Not Applicable The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The study protocol and forms were reviewed and approved by the Ethics Review Committee (ERC) or Institutional Review Board (IRB) of each site involved in this project before initiating data collection. These included the WHO ERC, FIOCRUZ, the Emory University IRB, the Comité Institucional de ética en Investigación Biomédica (CEIB) of the Centro de Atención y Diagnóstico de Enfermedades Infecciosas-CDI, and the BRANY IRB, contracted by the Universidad Carlos Albizu. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Not Applicable I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Not Applicable I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Not Applicable De-identified transcripts of the qualitative interviews can be made available upon request.