Carrying Uncertainty: The Lived Experiences of Women Prentally Exposed to the Zika Virus

Kelly McBroom

The Zika virus is an emerging infection which reached the mainland United States in 2016 and was of particular concern to pregnant women. Prenatal exposure to the Zika virus is associated with a significant risk of neurological impairment for infants. Prior research on pregnancies impacted by fetal compromise point to the moral and ethical complexities faced by parents, and the lack of clinician expertise in dealing with the emotional impact of this situation. While worldwide prevalence has decreased, the Zika virus serves as a cautionary proxy, revealing the deep structural, political and economic challenges of an effective public health response. A Heideggarian hermeneutic approach was used to reveal and interpret the experiences of ten women prenatally exposed to the Zika virus in the mainland United States and Puerto Rico. Three patterns emerged from this analysis: Managing Uncertainty, Interpreting Zika as a “Post-Colonial” Disease, and Promoting “Just in Case.” Common themes between groups included Seeking Safety and Control, Navigating Broken Systems, Advocating for Care and an expressed need for shared decision making, described as Partnering with the Mother. While there were shared aspects, significant differences were noted due to the colonial history of the island. Puerto Rican narratives revealed the themes Surviving a Campaign of Fear, and Interpreting Zika as a Conspiracy. Mainland women described Negotiating Diagnostic Uncertainty, and Practicing Hypervigilance. Strikingly absent in the transcripts were formalized process management systems, consistent risk communication, or standardization of care for pregnant women exposed to the Zika virus. Divergent experiences in these two settings point to the importance of recognizing the crucial role of race, culture, politics, history and intersectionality in the crafting of public health messages. It is also vital to recognize the role of maternal agency in health care decision making. In the future, policies and clinical care must focus on care optimization, and coordination across systems. These findings are paradigmatic and likely transferable to other emergent diseases with reproductive health implications.

Carrying Uncertainty: The Lived Experiences of Women Prentally Exposed to the Zika Virus

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