"Black Women Should Not Die Giving Life": The lived experiences of Black women diagnosed with severe maternal morbidity in the United States.

Objective: We sought to understand the lived experiences of Black women diagnosed with severe maternal morbidity (SMM) in communities with high maternal mortality to inform practices that reduce obstetric racism and improve patient outcomes.

Methods: From August 2022 through December 2022, we conducted a phenomenological, qualitative study among Black women who experienced SMM. Participants were recruited via social media and met inclusion criteria if they self-identified as Black cisgender women, were 18-40 years old, had SMM diagnosed, and lived within zip codes in the United States that have the top-five highest maternal mortality rates. Family members participated on behalf of women who were deceased but otherwise met all other criteria. We conducted in-depth interviews (IDIs), and transcripts were analyzed using inductive and deductive methods to explore birth story experiences.

Results: Overall, 12 participants completed IDIs; 10 were women who experienced SMM and 2 were mothers of women who died due to SMM. The mean age for women who experienced SMM was 31 years (range 26-36 years) at the time of the IDI or death. Most participants had graduate-level education, and the average annual household income was 123,750 USD. Women were especially interested in study participation because of their high-income status as they did not fit the stereotypical profile of Black women who experience racial discrimination. The average time since SMM diagnosis was 2 years. Participants highlighted concrete examples of communication failures, stereotyping by providers, differential treatment, and medical errors which patients experienced as manifestations of racism. Medical personnel dismissing and ignoring concerns during emergent situations, even when raised through strong self-advocacy, was a key factor in racism experienced during childbirth.

Conclusions: Future interventions to reduce racism and improve maternal health outcomes should center on the experiences of Black women and focus on improving patient-provider communication, as well as the quality and effectiveness of responses during emergent situations. Précis statement: This study underscores the need to center Black women's experiences, enhance patient-provider communication, and address emergent concerns to mitigate obstetric racism and enhance maternal health outcomes.