“You think everything’s fine and then it starts not being fine”: a qualitative descriptive study exploring the prenatal testing experiences of Black women living in England

In the UK, Black women are disproportionately impacted by adverse pregnancy and maternal outcomes whilst also being underrepresented in research. Understanding their experiences of being offered prenatal screening and diagnostic genetic testing (prenatal testing) for a range of genetic and chromosomal conditions is critical for offering equitable prenatal care. This qualitative descriptive study used semi-structured interviews to examine the experiences of prenatal testing amongst 39 women of Black and mixed Black heritage living in England. Discussions were analysed using thematic analysis and examined using a Critical Race Theory lens. Four themes were identified: (1) An emotional journey from screening to results, (2) Navigating unequal systems, (3) Anchors and absences, and (4) Envisioning better care. Screening was valued but often accepted because it was viewed as routine. Discussions about potential outcomes were perceived as limited, leaving some women unprepared for high-chance results. Diagnostic testing was pursued to reduce uncertainty and to prepare emotionally and practically—especially in the context of sickle cell. However, some felt pressured in their choices. Invasive procedures were described as frightening, waiting for results was a time of high anxiety and outcomes brought either intense relief or devastation. Care received was inconsistent: experiences of compassion contrasted with paternalism, and racism. Faith and family sometimes provided strength, but the lack of referral to structured support during testing represented a significant gap in care. Black women valued prenatal testing for the choice it offered, but their experiences could be undermined by routinisation, paternalism, clinician knowledge gaps, and structural racism. Strengthening pre-test counselling, training, and support pathways is essential to ensure prenatal testing services are equitable and raise standards of care for all families.