Aiding Difficult and High-Stakes Medical Decision Making - Research on Parental Tracheostomy Decisions for Critically Ill Children

Abstract

This dissertation illustrated the multiple approaches necessary to improving decision making in applied settings. It consists of three studies that aimed to understand high-stakes pediatric tracheostomy decisions and aid parents’ abilities to make these decisions. Chapter 1 involved an interview study of parents who had recently made a tracheostomy decision for their critically ill child. We found that parents were stressed and worried about future outcomes. They sought and desired information and emotional support for making this difficult decision. Despite these efforts, there seemed to exist opportunities to improve their understanding and forecasting of long-term challenges of a tracheostomy placement. Based on the literature of forecasting errors and narrative-form communication, Chapter 2 involved a survey experiment to test a possible intervention approach. It showed that narratives describing challenges that affect the child’s and/or the family’s quality of life from the point of view of parents who had already experienced them reduced parents’ tendency to choose tracheostomy. The effect was particularly strong when the narratives focused on challenges in the child’s quality of life. These narratives also led to less optimistic forecasting. Based on findings from Chapters 1 and 2, Chapter 3 presented a user-centered design process used to create education materials that were designed to help parents understand major challenges in life after a tracheostomy placement. This dissertation extends the literature on using narrative-form communication to help decision makers anticipate future experiences and reduce forecasting errors. It also demonstrates the multiple types of research needed to develop educational communication that is ready for implementation in clinical settings.