Parental Values During Tracheostomy Decision-Making for Their Critically Ill Child: Interviews of Parents Who Just Made the Decision

Background: Pediatric tracheostomy decisions are challenging for clinicians and parents, especially when a child’s survival/neurodevelopmental outcome is uncertain. Better understanding of parents’ values over the decision period is crucial for clinical decision-making. Objective: To describe parents’ values during tracheostomy decision-making for their critically ill child and to identify opportunities to improve parent–clinician shared decision-making (SDM). Methods: We thematically analyzed 12 semi-structured interviews with parents who recently faced a tracheostomy decision for their critically ill child. Three study team members with qualitative expertise reviewed the transcripts, identifying key topics independently. A codebook was developed, and data were coded. Key research questions guided analysis, with findings iteratively reviewed by the study team. Results: We identified parents’ values at the three time points: when the decision was introduced, during their deliberations of it, and when the ultimate decision was made. Initially, parents resisted tracheostomy because it threatens normalcy. They valued proof of a need for tracheostomy and information with certainty. As certainty for tracheostomy increased over time, parents’ hope focused on reversibility of tracheostomy and improvement in normalcy compared to current status. They concurrently worried about practical issues such as emergencies, home care, and finances. Key considerations driving the final decision included best interest of the child, perceived benefits of tracheostomy compared to its downsides or other options, and potential for better quality of life and longer life. Conclusions: Parents’ dynamic values shifting with clinical uncertainty suggests opportunities to improve SDM by attending to parents’ individualized needs and managing expectations.