Tracheostomy Decision Making and Counseling: Comparing Providers' and Caregivers' Perspectives and Perceptions

Background: The decision to place a tracheostomy in children is complex and involves factors beyond the medical procedure, including quality of life, values, and goals. Providers play an important role in counseling caregivers and guiding them through the decision-making process. There are no established guidelines for tracheostomy counseling, leading to variations in practice. Additionally, how caregivers receive information differs from how providers believe they deliver it. Although studies have explored caregivers' and providers' viewpoints, none have examined them concurrently. Background: The primary aim of this exploratory study is to investigate differences between providers' and caregivers' perceptions of tracheostomy counseling and their perspectives regarding the decision-making process. Design: Semi-structured interviews were conducted with both caregivers and providers for children being evaluated for a tracheostomy. Qualitative analysis was applied to the interview transcripts to identify emergent themes. Subsequently, a comparative analysis was performed to compare these themes between caregivers and healthcare providers. Results: A total of 33 interviews were conducted, involving 16 caregivers and 17 providers. Notably, caregivers provided personal descriptions of their children in 81% of cases, whereas only 35% of providers did so. Concerns and fears for the children were expressed by 69% of caregivers and 59% of providers. In contrast, 75% of caregivers discussed their hopes and dreams for their children, compared with only 29% of providers. When it came to priorities, 69% of caregivers emphasized growth and development, and 38% mentioned discharge home, as opposed to 29% and 47% among providers, respectively. Conclusion: In conclusion, our study highlights a disconnect between caregivers and healthcare providers regarding tracheostomy counseling. These differing perspectives underscore the need for improved communication and understanding between the two groups. Recognizing these differences can help providers tailor their counseling approaches to better align with the values and priorities of families when making decisions about tracheostomy.