Development and Pretesting of a Decision-Aid to Use When Counseling Parents Facing Imminent Extreme Premature Delivery

OBJECTIVE: To develop and pretest a decision-aid to help parents facing extreme premature delivery during antenatal counseling regarding delivery room resuscitation. STUDY DESIGN: Semistructured interviews with 31 clinicians and with 30 parents of children born <26 weeks' gestation were conducted following standard methods of qualitative research. These characterized perceptions of prenatal counseling to identify information that parents value when making decisions regarding delivery room resuscitation. These parental needs were formatted into a decision-aid. We assessed the primary outcome of how effectively the decision-aid improved knowledge during a simulated counseling session. Two groups of women were studied: parents with a history of prematurity ("experienced") and healthy women without prior knowledge of prematurity ("naïve"). RESULTS: Interviewees thought that visual formats to present survival and short- and long-term outcome information facilitated their own preparation, recall, and understanding. Accordingly, we designed a decision-aid as a set of cards with pictures and pictographs to show survival rates and complications. There was significant improvement in knowledge in 13 "experienced" parents (P = .04) and 11 "naïve" women (P < .0001). Participants found the cards useful and easy to understand. CONCLUSIONS: A decision-aid for parents facing extreme premature delivery may improve their understanding of complicated information during antenatal counseling.