Objectives: The prevalence of tracheostomy-dependence in critically ill children is increasing in the United States. We do not know the impact of this decision on parental outcomes. We aimed to determine the prevalence of decisional conflict and regret and explore the impact on quality of life among parents considering tracheostomy placement for their child.
Subjects: Parents facing tracheostomy decision for their child.
Design: Prospective, mixed-methods longitudinal study.
Setting: PICU, cardiac ICU, and neonatal ICU of a single quaternary medical center.
Interventions: None.
Measurements and main results: Parents completed a decisional conflict survey at the time of tracheostomy decision and decisional regret and quality of life surveys at 2 weeks and 3 months after the decision regarding tracheostomy placement was made. We enrolled 39 parents, of which 25 completed surveys at all three time points. Thirty-five of 39 (89.7%) reported at least some decisional conflict, most commonly from feeling uninformed and pressured to make a decision. At 2 weeks, 13 of 25 parents (52%) reported regret, which increased to 18 of 25 participants (72%) at 3 months. Regret stemmed from feeling uninformed, ill-chosen timing of placement, and perceptions of inadequate medical care. At 2 weeks, the quality of life score was in the mid-range, 78.8 (SD 13.8) and decreased to 75.5 (SD 14.2) at 3 months. Quality of life was impacted by the overwhelming medical care and complexity of caring for a child with a tracheostomy, financial burden, and effect on parent's psychosocial health.
Conclusions: The decision to pursue tracheostomy among parents of critically ill children is fraught with conflict with worsening regret and quality of life over time. Strategies to reduce contributing factors may improve parental outcomes after this life-changing decision.