4J-5
‘EXPERT ADVICE' FOR DEVELOPING DECISION SUPPORT: A QUALITATIVE STUDY OF WOMEN WHO HAVE EXPERIENCED PERIVIABLE BIRTH
Method: We conducted a qualitative study at two academic medical centers, among women who had experienced periviable deliveries (22-25 weeks) within the past 3 years. Using semi-structured interview guides, we asked participants what advice they would offer healthcare providers and other women/families based on the lessons learned from their own experiences. Interviews were audio-recorded and transcribed verbatim. De-identified transcripts were independently coded by a team of 3 trained coders.
Result: In our preliminary analyses of thirteen interviews, four broad categories emerged: General Advice for Healthcare Providers, Advice to Improve Counseling, Advice for Moms and Families, and ‘Changes’ that would improve care or clinical experiences. Participants advised healthcare providers to be more ‘patient’ and to appreciate the novelty of the event for patients and the uniqueness of each family’s experience and perspective. In counseling, they were encouraged to be ‘realistic’ and ‘factual’ to prepare families for the full range of potential outcomes. Joint OB/Neonatology counseling was favored. Descriptions and images of periviable neonates, resuscitation attempts, and intensive care units were suggested to prepare parents and set expectations--though others stated that no advice or counseling could ever ‘prepare’ a parent for the experience. Guilt and blame were repeated themes. Healthcare providers were encouraged to reassure pregnant and postpartum women that it was not their fault, and moms were encouraged to seek support or counseling to cope with feelings of guilt and self-blame. Women and families were encouraged to ask questions, get engaged, avoid the internet, and try to find joy and meaning in whatever time they had with their child. Finally, systems changes that could better accommodate and facilitate mother/baby contact and/or time spent together were felt to be needed.
Conclusion: A robust literature on patient perspectives in periviable care is lacking, yet sorely needed as we seek to develop decision-support tools to facilitate more shared, informed decision-making for periviable delivery management and resuscitation decisions. Our findings will present patient perspectives to improve interactions with healthcare providers; optimize the experience of pregnant women and their families; and advance efforts toward developing more patient-centered systems of periviable care.