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Tracheostomy placement in a child is often a high-stakes choice between a technology-dependent future or prioritizing comfort and possibly allowing death. Understanding how to support families in this process is essential.
We surveyed parents who faced a decision regarding tracheostomy for their child to better understand their experiences with complex tracheostomy decision-making (DM).
Children for whom a tracheostomy was considered from 2019-2022 at a single quaternary center were identified using medical record term search. Cases where tracheostomy was ethically obligated (best interest of child) were excluded. Participants were electronically surveyed. Queries included perceptions of their child’s tracheostomy DM process and outcome, suggestions to improve DM (free-text response), Illness Cognition Questionnaire (ICQ), and demographics. Survey items were refined by content and decision-science experts. Data were analyzed by descriptive statistics, two-sample t test or fisher’s exact test as appropriate, and qualitative analysis.
There were 61 completed surveys (response rate 49%). Demographic data shown in Table 1. 66% of parents reported pressure to decide quickly, though reported time for DM varied. 26% did not feel they were offered a choice, despite exclusion of patients for whom tracheostomy was obligated. 25% reported mismatch between how the decision was made with the medical team and how they thought it ought to have been made. Parents’ experience with and perceived helpfulness of resources are shown in Figure 1. Though most parents found the medical team helpful, 10% reported their intensive care physicians were unhelpful. 31% reported not experiencing palliative care. None of the parents who watched video-information (64%), received written information (85%), or met or saw a child with a tracheostomy (41%) found these experiences unhelpful. 71% of parents with living children reported life after tracheostomy DM better than expected, with a non-distressed level of helplessness (M=10.49, SD=2.97) and high acceptance of their child’s illness (M=20.55, SD=3.16) (subscale range:6–24) on ICQ scale. Perception of pressure, choice, helpfulness, and ICQ scores did not differ by the decision made.
Free-text responses described aspects of the DM process parents found helpful (n=53 responses) or unhelpful (n=50). Major themes and exemplary quotes in Table 2.
Parents who participated in a decision regarding tracheostomy for their child reported variable experiences with resources and support. Parents identified areas for improvement in the DM process.
Clarke, Rachel G.; Yan, Haoyang; Arslanian-Engoren, Cynthia; Pituch, Kenneth; Ryan, Kerry A.; and Kukora, Stephanie, "Survey of Parental Experiences in Tracheostomy Decision-Making" (2023). Research at Children's Mercy Month 2023. 33.