Understanding Patient Perspectives and Experiences in Severe Hemolytic Disease of the Fetus and Newborn: Insights from Qualitative Interviews.

Objective Maternal red cell alloimmunization is a rare pregnancy condition that can cause hemolytic disease of the fetus and newborn (HDFN), which can be serious and fatal. As subsequent alloimmunized pregnancies carry HDFN risk, families' future pregnancy decisions may be affected. Findings from qualitative interviews in alloimmunized mothers are presented to understand experiences and perspectives during their previous pregnancy affected by severe HDFN, aiming to inform patient-centered interventions. Study Design This article presents qualitative findings of a broader mixed-methods study published elsewhere. Semi-structured 1:1 interviews were conducted via Microsoft Teams with adults (≥18 years) who experienced a pregnancy within the past 5 years affected by severe HDFN (i.e., intrauterine transfusion, fetal loss after 14 weeks' gestation, or neonatal death within 4 weeks of birth due to HDFN). A patient advocacy group ensured study design's relevance, recruited participants, and helped interpret results. Interviews were audio-recorded, transcribed, and analyzed to identify key themes. Results Of 28 participants, 27 completed interviews. Participants reported a median 2 (range, 1-5) affected HDFN pregnancies and a median 4 (1-11) intrauterine transfusions during their most recent pregnancy affected by severe HDFN. Seven themes were identified: (1) diagnosis communication and information seeking, (2) emotional journey at diagnosis, (3) navigating the treatment regimen, (4) physical/emotional challenges during pregnancy, (5) impacts on social life, (6) experience at delivery, and (7) postdelivery adjustment and reflections. Results indicated that participants felt inadequately informed about their diagnosis, experienced significant emotional distress, along with difficulties managing intense monitoring/treatments. Many described their delivery as traumatic and their postpartum as very stressful, which influenced their decision about additional pregnancies. Conclusion These findings highlight opportunities to strengthen communication and support for pregnant individuals experiencing severe HDFN. Developing comprehensive support models and improving care, guided by patient preferences, could address the needs of affected individuals and families.