Fetal Surgery Interview Study: Parental Perceptions of Fetal Surgery

Launched by UNIVERSITAIRE ZIEKENHUIZEN KU LEUVEN · Dec 21, 2018

Keywords

ClinConnect Summary

The Fetal Surgery Interview Study is exploring how parents feel about fetal surgery options for conditions like myelomeningocele (MMC) and congenital diaphragmatic hernia (CDH). These surgeries can help improve outcomes for babies with these serious conditions, but they also come with risks, such as the chance of complications during the pregnancy. The study aims to understand parents' thoughts and feelings about choosing these surgical options compared to other choices, like continuing the pregnancy without intervention or considering termination.

To participate in this study, parents must be expecting a baby diagnosed with MMC or CDH and must be eligible for one of the fetal surgery procedures being examined. Participants will take part in in-depth interviews at different times: first after they receive counseling about their options, again shortly after the surgery if they choose to go through with it, and finally about 12 weeks after the baby is born or if they decide to terminate the pregnancy. This study is important because it will help healthcare providers understand what parents think and feel about these difficult decisions, ensuring that care is aligned with their needs and values.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Women/partners eligible for one of the two fetal surgery procedures studied (open fetal surgery for spina bifida closure, tracheal balloon occlusion for congenital diaphragmatic hernia (Fetoscopic Endoluminal Tracheal Occlusion, FETO), as clinical care
• • Have given written informed consent for participation
• Exclusion:
• • Women less than 18 years or over 65 years of age
• • Partners less than 18 years or over 65 years of age
• • Women or their partners who are unable to communicate in either English or the local language (if different)