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

Abstract

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.

Experiences of Iranian women with prenatal diagnosis of fetal abnormalities: A qualitative study

“…Some participants even would have gone through illegal abortion if they had exhausted the time for legal abortion. These findings are supported by previous studies (8,10,17).…”

“…Thus, despite their willingness, the participants decided to terminate the pregnancy. Guilt and self-blame have also been reported in other studies (8,10,18). In the study of Maguire et al (2015) guilt and self-blame were described as a painful aspect of the grieving process (7).…”

“…In contrast, in the study of Korenromp, Page-Christiaens, van den Bout, Mulder and Visser, 2009, partner support was perceived as excellent during the period of decision making (25). However, Berman et al (2018) suggest presence of husband and even his family is important in counselling sessions (10), to support these women and exterminate the notion that "the mother is always to blame for congenital anomalies". In addition, participants' perceived support from the treatment team was inadequate and they wandered between the views of sonologists, midwives, obstetricians, pediatricians and geneticists.…”

“…According to previous studies (10,26), a referral process is needed for the pregnancy termination, so that patients do not wander. It is often worthwhile to maintain regular relationships when caring for pregnant women.…”

“…A previous study revealed fear, uncertainty, and culpability about the diagnosis in women following diagnosis of fetal abnormalities (9). Although some studies explored the experiences of women with prenatal diagnosis of fetal abnormalities (8)(9)(10), little is known about it in developing countries, and it seems women's environment such as culture and beliefs can affect the way they experience the diagnosis of fetal abnormalities (11). A qualitative study from Iran found that pregnant women following prenatal diagnosis of fetal anomalies, experienced emotional and cognitive reactions including grief reactions during the time of diagnosis; perinatal loss; fears of recurrence in future pregnancies; and a dilemma of hope and worries (12).…”