Maternal Preferences for Approach and Language Use During Antenatal Counseling at Extreme Prematurity: A Pilot Study

Abstract

Introduction: Counseling families at risk for extremely preterm birth presents significant challenges to providers due to the uncertainty of infant outcomes. Aim: To determine lay-public parental preferences for approaches to prenatal counseling and preferred descriptive terminology usage by providers when discussing an anticipated extremely preterm delivery. Methods: This exploratory pilot study recruited parents through social media to participate in a survey centered around a hypothetical delivery at 23 weeks. Questions assessed participants’ understanding of medical terminology and preferences for terminology, discussion topics, and approaches to decision-making related to anticipated extremely preterm birth. Results: A total of 142 (72%) parents participated. Understanding of medical compared with nonmedical terminology was limited ( P < .01). Parents had stronger preferences for the use of certain words and terminology over others. They preferred discussions focused on the possibility of infant survival and information about intensive care, over general statistics, and outcome percentages. Most would choose attempted stabilization and neonatal intensive care unit care in this hypothetical case. Discussion/Conclusions: Parents have preferences regarding physician communication and approaches to decision-making around extremely preterm delivery, which may offer guidance to providers during counseling.