Voices on Zika: Reproductive Autonomy and Shared Decision-Making During an Evolving Epidemic.

INTRODUCTION: We aimed to understand the degree to which pregnant individuals exposed to emerging infections, such as Zika, are engaged by providers in shared decision-making and explore potential barriers to inform strategies to improve care for those most at risk for inequities. Studies have demonstrated that Latinx and Black people are less likely to engage in shared decision-making and are less engaged by providers. Limited research explores factors impacting shared decision-making in prenatal care and in the setting of recent epidemics.

METHODS: We conducted an exploratory qualitative study of individuals eligible for prenatal screening owing to Zika exposure during pregnancy. Given an established connection between autonomy and shared decision-making, we used the Reproductive Autonomy Scale and the Three Talk Model for shared decision-making to inform our semistructured interview guide. Interviews were conducted in Spanish or English. and participants were recruited from a federally qualified health center and a tertiary care obstetric clinic until thematic saturation was achieved. Interviews were recorded, translated, and transcribed and two coders used modified grounded theory to generate themes.

RESULTS: We interviewed 18 participants from May to December 2017. Participant narratives demonstrated reproductive autonomy in pregnancy decision-making, with decision support from families, fatalism in pregnancy planning, and limited engagement by providers around decisions and implications of Zika virus testing. Hierarchy in provider dynamics, perceived stigma around emigration and travel, and language barriers impacted participant engagement in shared decision-making.

CONCLUSIONS: Participants demonstrated personal autonomy in reproductive decision-making, but demonstrated limited engagement in shared decision-making with regard to prenatal Zika testing. Provider promotion of shared decision-making using culturally centered decision tools to elicit underlying beliefs and deepen context for option, choice, and decision talk is critical in prenatal counseling to support equitable outcomes during evolving pandemics.