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Understanding the Parent Perspective on Prenatal Consultation for Fetuses with Congenital Anomalies
Loren Berman1, Caitlyn Costanzo, Susan Smola
1Sidney Kimmel Medical College of Thomas Jefferson University, Philadelphia, PA, USA.
Insights
Parents value comprehensive prenatal surgical consultations, even when discussing difficult outcomes. Understanding potential challenges and receiving adequate support are crucial for families facing congenital anomalies.
Area of Science:
- Pediatric Surgery
- Prenatal Diagnosis
- Congenital Anomalies
Background:
- Prenatal diagnosis of congenital anomalies is increasing.
- Surgical consultation is key for parental education on fetal diagnoses.
- Parental perspectives on prenatal consultations are understudied.
Purpose of the Study:
- To explore parental experiences with prenatal surgical consultations.
- To understand parental preparedness and information needs.
- To identify areas for improving prenatal counseling.
Main Methods:
- In-depth interviews with parents undergoing prenatal consultation.
- Qualitative analysis to identify key themes.
- Exploration of diagnosis understanding, preparedness, and improvement suggestions.
Main Results:
- Interviews revealed common emotions like fear, anxiety, and self-blame.
- Consultations offered reassurance to some but increased anxiety in others due to uncertain outcomes.
- Parents desired better warnings for worse outcomes and emphasized support systems and educational materials.
Conclusions:
- Parents appreciate learning about all potential fetal outcomes, despite increased anxiety.
- Surgeons should discuss a range of outcomes, acknowledging the anxiety uncertainty causes.
- Incorporating parental perspectives and training surgeons are essential for effective prenatal consultations.
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, preparedness for 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.