We All Want to Be Able to Tell You Something Hopeful: Clinicians' Experiences Providing Maternal-Fetal Surgery Counseling

INTRODUCTION: Prenatal counseling about maternal-fetal surgery can be traumatic and confusing for pregnant people. It can also be technically and emotionally complex for clinicians. As maternal-fetal surgery rapidly advances and becomes more common, more evidence is needed to inform counseling practices. The objective of this study was to develop a deeper understanding of the methods clinicians currently use to train for and provide counseling, as well as their needs and recommendations for future education and training. METHODS: We used interpretive description methods and interviewed interprofessional clinicians who regularly counsel pregnant people about maternal-fetal surgery. RESULTS: We conducted 20 interviews with participants from 17 different sites who were maternal-fetal medicine specialists (30%), pediatric surgeons (30%), nurses (15%), social workers (10%), a genetic counselor (5%), a neonatologist (5%), and a pediatric subspecialist (5%). Most were female (70%), non-Hispanic White (90%), and practiced in the Midwest (50%). We identified four overarching themes: 1) Contextualizing maternal-fetal surgery counseling; 2) Establishing shared understanding; 3) Supporting decision-making; and 4) Training for maternal-fetal surgery counseling. Within these themes, we identified key practice differences among professions, specialties, institutions, and regions. DISCUSSION/CONCLUSION: Participants are committed to practicing informative and supportive counseling to empower pregnant people to make autonomous decisions about maternal-fetal surgery. Nevertheless, our findings indicate a dearth of evidence-based communication practices and guidance. Participants identified significant systemic limitations affecting pregnant people's decision-making options related to maternal-fetal surgery.

Automated summary

The study aims to develop a deeper understanding of the methods clinicians currently use to train for and provide counseling about maternal-fetal surgery. Findings indicate a lack of evidence-based communication practices and guidance, as well as systemic limitations affecting pregnant people's decision-making options related to maternal-fetal surgery.