Abstract：
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.
摘要：
背景：对儿童进行气管造口术的决定很复杂，涉及医疗程序以外的因素，包括生活质量，值,和目标。提供者在指导护理人员和指导他们完成决策过程中发挥着重要作用。没有既定的气管切开术咨询指南，导致实践中的变化。此外,护理人员接收信息的方式与提供者认为他们提供信息的方式不同.尽管研究已经探讨了护理人员和提供者的观点，没有人同时检查过它们。背景：这项探索性研究的主要目的是调查提供者和护理人员对气管造口咨询的看法及其对决策过程的看法之间的差异。设计：对接受气管造口术评估的儿童的看护者和提供者进行了半结构化访谈。对访谈笔录进行了定性分析，以确定紧急主题。随后，我们进行了一项比较分析,以比较护理人员和医疗服务提供者之间的这些主题.结果:共进行了33次访谈,涉及16名护理人员和17名提供者。值得注意的是,在81%的病例中，看护人提供了他们孩子的个人描述，而只有35%的供应商这样做。69％的看护者和59％的提供者对儿童表示关注和恐惧。相比之下,75％的照顾者讨论了他们对孩子的希望和梦想，相比之下，只有29%的提供商。当涉及到优先事项时，69%的护理人员强调生长发育，38%的人提到出院回家，相比之下，服务提供者的比例为29%和47%，分别。结论：总之，我们的研究强调了护理人员和医疗服务提供者在气管切开术咨询方面的脱节.这些不同的观点强调了需要改善两组之间的沟通和理解。认识到这些差异可以帮助提供者调整他们的咨询方法，以便在做出有关气管造口术的决定时更好地与家庭的价值观和优先事项保持一致。
