Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudinal mixed methods study of decision making. We audio recorded family conferences as they occurred and analyzed conferences using a directed content analysis approach. We enrolled 40 infants and 61 parents who participated in 68 family conferences. Thirty-seven conferences contained a treatment decision. We identified 4 key domains of the decision-making process: medical information exchange, values-based exchange, therapeutic partnership, and integration of values into decision making. Discussion of values was typically parent initiated (n = 20, 83%); approximately one-third of conferences did not contain any discussion of parent values. Integration of family values and preferences into decision making occurred in approximately half of conferences. These findings highlight opportunities for interventions that promote values discussion and the integration of values into decision making.
Keywords: children; disability; ethics; infant; neonate; quality of life.