Understanding the Parent Perspective on Prenatal Consultation for Fetuses with Congenital Anomalies

Introduction: An increasing number of congenital anomalies are diagnosed prenatally. Understanding the implications of these diagnoses on the life of their child is critical for parents, and the surgical consultation is often the primary venue for this education. Little is known about the parent perspective on prenatal consultation. Methods: Parents undergoing prenatal consultation were identified and in-depth interviews were conducted to explore the following: understanding of the diagnosis, preparednessfor postnatal course, and suggestions for improvement. Qualitative analysis was performed to generate themes. Results: Twelve interviews with 16 family members were performed, encompassing a variety of prenatal diagnoses and outcomes. Near-ubiquitous emotions included fear, anxiety, and self-blame. Surgical consultation relieved anxiety for some, but the uncertain outcome increased anxiety in others. Most were satisfied with the information communicated during the encounter; however, those with worse outcomes wished they were better warned. Parents emphasized the importance of support systems and educational materials. Conclusions: Parents appreciate learning about all potential outcomes for the fetus, even though this generates anxiety. Surgeons should discuss the range of possible outcomes while acknowledging that uncertainty leads to anxiety. It is essential to incorporate the parent perspective when conducting prenatal consultation and training pediatric surgeons in this important practice. (C) 2017 S. Karger AG, Basel