'Expert advice' for developing decision support: A qualitative study of women who have experienced periviable birth.

Abstract

To elicit advice from women who have experienced periviable birth to optimize periviable counseling, care, and decision support. We conducted a qualitative study among 21 women who experienced periviable deliveries within three years. Using semi-structured interviews, we asked participants what advice they would offer providers and women/families based on their own experiences. Interviews were independently coded by three trained coders. For providers: Participants said to be 'patient' and appreciate the novelty of each family's experience. They suggested being 'realistic' and 'factual'; favored joint OB/Neonatology counseling; and encouraged providers to attend to maternal guilt and self-blame. For women/families: They encouraged asking questions, avoiding the internet, and finding joy in whatever time they had with their child. For hospitals: They advocated for changes to facilitate more mother/baby contact. Providers can support parents by presenting facts, showing empathy and patience, and reassuring women that they are not to blame. This study highlights patient perspectives to improve interactions with providers, optimize women/families' experiences, and advance efforts toward developing patient-centered systems of periviable care. Women who experience periviable birth desire counseling that is empathetic and 'realistic', encouragement to ask questions, and reassurance that outcomes are not their fault.