Exploring Support for Parents and Decision-Making Dynamics in Periviable Delivery

In periviable delivery (22-25 weeks in pregnancy), families must decide between resuscitation or comfort care for their baby. Dr. Brownsyne Tucker Edmonds explores how families can make informed decisions in the Making a Difference (MAD) and Periviable GOALS (Getting Optimal Alignment around Life Support decisions) studies. The first explores who should have authority for making decisions for newborns, particularly focusing on diverse parent dynamics (i.e., heterosexual, same-sex, (a)romantic partnerships), through interviews with experienced parents of periviable delivery, healthy pregnant parents in the periviable window, and clinicians. As an intern, I was directly responsible for conducting ten in-depth, structured interviews, data entry and management in REDCap, and quantitative and qualitative data analysis. The Periviable GOALS study explores how an app can help support parents making informed decisions with minimal regret. This app includes a calculator that provides survival and disability outcomes based on parents’ week in pregnancy and whether they choose resuscitation or comfort care. It also includes testimonial videos of parents who have experienced periviable delivery. For this study, I assisted with building a large-scale REDCap survey and database in preparation for a multisite randomized controlled clinical trial, and I transcribed several audio-recorded interviews for qualitative analysis.