Uncertainty management and decision making: Parents' experiences during their first visit to a multidisciplinary clinic for their child's vascular anomaly

Purpose: To gain a better understanding of parental decision making in situations of uncertainty and multidisciplinary care, we explored parents' decision-making experiences while seeking care for their child's vascular anomaly at a multidisciplinary clinic at a large Midwestern children's hospital. Design and methods: We collected data using semi-structured interviews with 29 parents after they met with multiple specialists for the care of their child's vascular anomaly. Results: The findings revealed parents' attempts to manage decision-related uncertainty about their child's vascular anomaly included seeking information, avoiding information, and seeking support from the specialists. Parents described how information management both facilitated and obstructed decision making. Conclusions: Overall, the study reveals several benefits and challenges of making decisions about the management of uncertain childhood conditions, like vascular anomalies, in a multidisciplinary context. The information-rich environment produces information-management dilemmas that challenge parents' decision making efforts. Therefore, parents relied on the support of the team of specialists to make decisions about their child's treatment. Practice implications: The study offers practical implications concerning the barriers of autonomy in decision making. Healthcare professionals should acknowledge the potential for parents' to have shifting information and decision-making goals and preferences, and should explicitly support parents throughout the decision-making process.