Barriers and facilitators to shared decision making: A qualitative study of families who delivered at the cusp of viability.

Abstract

There is limited data regarding patients' experiences with periviable counseling. Exploring patient perspectives helps us improve provider communication and may aid in supporting high-quality decision-making. Our study explored patient-identified sources of support and conflict during discussions with their healthcare team when delivering during the periviable period with the goal of improving high-quality shared decision making (SDM). We conducted semi-structured interviews of birthing people who delivered between 20 0/7 and 25 6/7 weeks gestational age from 2010 to 2014. Interviews focused on shared decision making at the time of periviable birth with an emphasis on the three-talk model of SDM. Interviews were coded to perform thematic analysis. We interviewed 20 patients who delivered during the periviable period and 6 important others. Participants valued providers aiding in their emotional processing. Conversely, participants identified lack of clarity during counseling and an emphasis on hopelessness as barriers to SDM. Participants highlighted the importance of using easy-to-understand language and focusing on hope. Finally, families emphasized the importance of explicitly eliciting values that might inform their choice and the positive impact of nursing staff. Our findings underscore the importance of using a SDM model for periviability counseling and highlight areas for improvement.