The Voices on Zika Study: Reproductive Autonomy and Shared Decision Making in the Time of Zika [3S]

Abstract

INTRODUCTION: The purpose of our study was to explore the relationship between reproductive autonomy and shared decision making in women exposed to Zika virus during pregnancy. METHODS: We used a participatory action approach to conduct an exploratory qualitative study of English and Spanish- speaking women who were offered serum or ultrasound screening due to Zika exposure during pregnancy or immediately postpartum. We performed qualitative interviews in the patient's native language based on the Reproductive Autonomy scale and the Three Talk Model for shared decision making. Two coders used modified grounded theory to analyze transcribed interviews by hand. RESULTS: We interviewed 18 patients, at an inner city safety net hospital from May to December 2017. Most participants were Spanish speaking (72%), Hispanic (77%), and reported unplanned pregnancies (61%). Participant narratives demonstrated reproductive autonomy in pregnancy decision-making with community-based decision support, fatalism around pregnancy continuation, and very limited engagement around decisions regarding Zika virus testing. Hierarchy in provider dynamics, perceived stigma around emigration and travel, and language barriers impacted participant engagement in shared decision making-including choice, options, and decision talk. Narratives demonstrated limited participant perception of personal and fetal risk, and limited knowledge around Zika virus screening and treatment, which was inadequately addressed during counseling discussions. CONCLUSION: Participants demonstrated autonomy in reproductive decision-making that did not extend to decisions related to perinatal Zika testing. Shared decision making tools that address provider-patient relationship and stigma, in addition to clinical content may improve shared decision making and patient engagement in the management of complex pregnancies in vulnerable populations.