ABSTRACT
OBJECTIVE:
To identify quality-improvement opportunities from the experiences of Black and Latina severe maternal morbidity (SMM) survivors and their families.
METHODS:
This study explored the experiences of Black and Latina survivors of SMM through qualitative interviews. A Community Advisory Board of SMM survivors and community representatives guided the study design, recruitment, and analysis. We recruited participants through community outreach and used a trauma-informed approach to interviews. Recruitment concluded after 17 survivors when the team determined through analytic discussion that subsequent interviews reinforced rather than expanded the existing thematic structure. We used reflexive thematic analysis to identify key themes related to prenatal, intrapartum, and postpartum care experiences.
RESULTS:
The overarching theme of wanting to be seen and heard as a whole person emerged across interviews. Five subthemes characterized the struggles participants faced during and after SMM events: 1) If I Don’t Appear a Certain Way, I Won’t Get Adequate Care, reflecting experiences of bias and racialized expectations; 2) What Happens Now and What Happens Next?, describing poor communication and uncertainty during care transitions; 3) Advocacy: If I Don’t Speak Up, Who Will? If I Do Speak Up, Who Will Hear Me?, highlighting the burden of self-advocacy in clinical settings; 4) Having Another Child at What Cost?, capturing fear and trauma shaping future reproductive decision making; and 5) Long-term Consequences for Mental and Emotional Health, describing persistent psychological effects. Through iterative interpretation and prioritization with the Community Advisory Board, the themes informed multilevel quality-improvement recommendations. These included policy changes such as insurance coverage for doulas and improved parental leave; organizational and clinician-level strategies such as extended perinatal visits, workforce diversity, and training in bias and trauma-informed care; and patient-level supports emphasizing advocacy resources, education, and relationship-centered care.
CONCLUSION:
Experiences of SMM survivors and their support persons revealed systemic barriers and a strong desire to be seen and treated as whole persons, with attention to physical, emotional, and mental well-being. Participants highlighted issues such as racial marginalization, clinician biases, and insufficient support and education. These findings align with Community Advisory Board members’ experiences and existing research. We offer recommendations, co-developed with the Community Advisory Board, based on these findings to improve care at the policy, organizational, clinician, and patient levels.