P0556 - Parent experiences and considerations when facing tracheostomy decisions for a critically ill child

Background: A pediatric tracheostomy decision can be challenging for clinicians and parents, especially when outcomes are uncertain and prognosis is guarded. Though shared decision-making is recommended for such preference-sensitive decisions, a better understanding of parents’ needs and values is crucial to minimize decisional regret.

Objective: To characterize parents’ experiences and considerations during tracheostomy decision making for their critically ill child.

Methods: Twelve semi-structured interviews of parents who recently faced a tracheostomy decision for their critically ill child were analyzed using content analysis. A coding scheme was developed via reading transcripts and team meetings. Transcripts were coded by two team members with qualitative expertise who met to reconcile discrepancies.

Results: Six major themes emerged. First, parents reported seeking support. They desired and sought information about what life would be like for their child and family with a tracheostomy from peer parents and online resources when they perceived insufficient explanation by providers. They also sought emotional support from peer parents who had similar experiences. Second, they felt overwhelmed due to uncertainty and unfamiliarity with tracheostomy, but many coped through self-education, prayer, and seeking professional therapy. Third, parents reported being presented alternatives to tracheostomy (e.g., noninvasive breathing support, comfort care) but some did not perceive these as “real choices.” Perceived tradeoffs among options included short-term quality of life vs prolonged survival and child’s best interest vs caregivers’ convenience. Fourth, parents resisted tracheostomy initially and gradually came to acceptance. Fifth, all parents considered quality of life, albeit different expectations. Many placed high value on their child’s comfort, normalcy, and survival. Parents hoped that their children could have a stable airway and chances to develop at home and move forward with treatments, while worrying about skills and resources for home care, disruption to family life, and child’s physical and emotional well-being. Lastly, religious beliefs played an important role in decision making. (Illustrative quotes in Tables 1 and 2)

Conclusion: Parents consider influences on their child’s quality of life and family dynamics during tracheostomy shared decision-making. This suggests opportunities to improve shared decision-making by attending to parents’ individualized information and emotional needs.