P3B060: Tracheostomy Decision Making: Differences in Provider’s and Caregiver’s Perspectives

Background: The decision to place a tracheostomy in a child is an intricate and difficult one. Families, caregivers, and on some occasions, pediatric patients, rely on their providers for information to help them decide whether to proceed with a tracheostomy. This decision entails more than the procedure of tracheostomy placement and should not be made solely based on airway security and respiratory support. It depends on the underlying conditions that necessitate the intervention, how it impacts patients’ and families’ quality of life, reflects their values, and achieves their goals. Providers have the responsibility of counseling families regarding the risks and benefits, helping them understand their options, and guiding them through the decision-making process. Although there are no guidelines on the way to counsel on tracheostomy, providers agree that it should balance risks and benefits, disclose burdens, and discuss alternative options. Still, there is variation in practice in the way providers counsel families about tracheostomy and families often wish they had more information. Further, how they receive information may differ significantly from how providers believe they deliver it. While there are studies on families’ and providers’ perspectives, none have looked at them concurrently.

Methods: Children under consideration for a tracheostomy were identified weekly, and their caregivers and providers were notified of the ongoing study within 30 days of their tracheostomy counseling. Semi-structured interviews were conducted recorded and transcribed. The transcripts underwent qualitative analysis with emergent themes identified. These themes were compared between the caregivers and the providers.

Results: A total of 33 semi-structured interviews were conducted: 16 caregivers and 17 providers. All caregivers were parents of the children under consideration for a tracheostomy; providers were in various subspecialties, including pediatric critical care, neonatology, ear nose and throat, complex care, and palliative care. Caregivers’ perceptions of tracheostomy counseling differ from providers’ in several themes. Asked to describe their children, 13 out of the 16 caregivers (81%) described them in a personal way while only six out of the 17 providers (35%) gave personal descriptions. Eleven caregivers (69%) and 10 (59%) shared fears and concerns for the children; while 12 caregivers (75%) discussed their hopes and dreams for their children, and only five providers (29%) did so. Eleven caregivers (69%) cited growth and development as a goal of care, compared to 5 providers (29%); on the other hand, six caregivers (38%) mentioned discharge home as a goal, compared to eight providers (47%).

Conclusion: Caregivers’ and providers’ perceptions of tracheostomy counseling differ, and there is a gap between providers’ and caretakers’ perspectives on what is important when making decisions about tracheostomy.