(134) Experiences of Black and Latin-X Pregnant People Undergoing Prenatal Diagnosis for Ultrasound Identified Fetal Anomalies

Thursday, January 30, 2025

10:30 AM – 12:30 PM

Submitting Author and Presenting Author(s)

Asha N. Talati, MD, MSCR (she/her/hers)

Assistant Professor
University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States

Coauthor(s)

KS

Karen Sheffield-Abdullah, CNM, PhD

University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States
CM

Catalina Montiel, BA, MPH

University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States
AD

Aryana Daye, BA

University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States
MR

Maria Reyes-Montilla, MD

University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States
KG

Kelly L. Gilmore, MS

Instructor, Department of Obstetrics & Gynecology
University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States
Neeta L. Vora, MD

Associate Professor
University of North Carolina at Chapel Hill
Chapel Hill, North Carolina, United States

Objective: To describe experiences of prenatal genetic diagnosis (PGD) among pregnant people (PP) that self-identify as Black or Latin-X with ultrasound detected fetal anomalies.

Study Design: Qualitative study of PP that self-identify as Black or Latin-X with ultrasound detected fetal anomalies offered genetic counseling and PGD care between 11/22 – 01/24 at a tertiary care center. Interviews were conducted by team members that had ethnic and language concordance with participants. Interviews were one-on-one, semi structured, recorded and transcribed. Interviews with Spanish-speaking participants were translated to English for analysis. Interview domains included the following: respect, trust and genetic privacy, quality of care, and support. Interviews were coded and analyzed using thematic analysis and sampling was completed after theme saturation was achieved. All participants completed a demographic survey and the Everyday Discrimination Scale (EDS), a validated tool to assess the experiences of racial and ethnic minority groups.

Results:

24 interviews were completed (Table 1). All participants had complex, multi-anomaly fetal phenotypes. Six (25%) participants had an amniocentesis. Several key themes were identified across the cohort, including: (1) definitions of respectful care; (2) a need for self-advocacy; (3) the value of racial, ethnic, and linguistic concordance in care, and (4) navigation of healthcare policies (e.g. abortion restrictions, insurance). For Spanish speaking PP, Theme 3 included a discussion of translation services and Theme 4 included discussion of healthcare costs, particularly for those that recently immigrated (Figure 1). Zero interviewees expressed concern regarding genetic privacy for the fetus, self, other family members, now or in the future. Mean EDS score was 21.1 (SD 9.2); EDS scores were not associated with preferences for amniocentesis (r=0.09).

Conclusion: Black and Latin-X PPs’ reflections define respectful care and identify unique considerations and areas for improving quality of PGD care for these racial/ethnic groups.