Qualitative In-depth Interviews With Women and Their Partners Concerning the Acceptability of Fetal Surgery

What this Trial Is About

Researchers are exploring how women and their partners perceive the acceptability of fetal surgical interventions for two serious conditions: myelomeningocele (MMC), a type of spina bifida, and congenital diaphragmatic hernia (CDH). These conditions require complex decisions after prenatal diagnosis, including options such as pregnancy termination, expectant management, or fetal surgery. The study aims to understand the emotional and cognitive responses of parents facing these choices, recognizing the ethical challenges and risks associated with fetal surgery, including preterm delivery and potential complications. Participants who are eligible for fetal surgery, either open surgery for MMC or fetoscopic endoluminal tracheal occlusion (FETO) for CDH, will take part in two or three in-depth face-to-face interviews. These interviews are conducted before the intervention, shortly after surgery while still hospitalized, and approximately 12 weeks after birth or termination of pregnancy. The interviews focus on gathering detailed personal views, feelings, and experiences related to the decision-making process and acceptability of the fetal surgery. During the study, researchers will analyze the interviews to assess prospective, concurrent, and retrospective acceptability of fetal surgery. Interviews are planned alongside hospital visits to reduce burden and may be conducted in Dutch or English, with some follow-up interviews offered via teleconference or phone. The study will use qualitative methods to explore participants' perspectives in depth, aiming to improve understanding of how parents experience and interpret fetal surgical options for these conditions.

Fetal Surgery Interview Study: Parental Perceptions of Fetal Surgery