GOLD Learning Speakers

What does emerging science on neurobiology and epigenetics tell us about decision making in pregnancy, labour and birth? Does birth place matter? Should caesarean reduction be the goal? How long is labour? How long is human gestation? How accurate is an ultrasound date? What happens when clients want care that does not align with community standard? How do our messages about evidence and risk affect quality and safety? What do women say? What do providers believe? This session will explore new patient-centered outcomes from research on quality, safety, risk and responsibility. Together we will review and discuss emerging tools and strategies to facilitate conversations about the best available evidence and respectful maternity care.

New global standards highlight the critical impact of patient-provider communication, emotional support, and respectful care (RMC) on quality and safety for mothers and newborns. Yet, very little is known about how people experience maternity care in high and middle resource countries; and validated indicators of RMC are scarce. Researchers have proposed that institutional racism and lack of access to autonomy and respect, and physiologic birth options, contribute to adverse outcomes. Community members in Canada and the US worked with clinicians, NGO leaders, and researchers to design a study on quality of maternity care as experienced by pregnant persons from communities that experience higher rates of adverse outcomes due to race (African American, Indigenous, and Latina), immigrant or refugee status, or social barriers (homelessness, incarceration, substance use). Together they developed and administered a cross-sectional online survey and convened focus groups to explore novel topics including: women’s experiences of agency in decision-making, non-consented care, access to supportive services, and systemic respect or discrimination over the course of care. Through these large community-based participatory research projects, we validated three new quality measures, the Mother’s Autonomy in Decision Making (MADM) scale and the Mothers on Respect (MORi) index, and the Pregnant Persons Experience of Mistreatment by Providers (PPEMP) Index, and adapted a fourth, the Perceptions of Racism scale. Using these as indicators, and adjusting for differences in socio-demographics, risk profile, type of provider, and place of birth, our multi-stakeholder team has completed descriptive, psychometric, regression, and mixed-effects analysis of data from over 5000 women in the US and Canada. In this session we will explore how these reports of the lived experience of care can help us to understand how to address equitable access to the highest quality of care across all communities.