Communication preferences of pediatric cancer patients: talking about prognosis and their future life
Communication preferences of pediatric cancer patients: talking about prognosis and their future life
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DOI：
10.1007/s00520-016-3458-x
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发表时间：
2017-03-01
影响因子：
3.1
通讯作者：
Mack, Jennifer W.
中科院分区：
文献类型：
--
作者：
Brand, Sarah R.;Fasciano, Karen;Mack, Jennifer W.
美国儿科学会建议医疗保健提供者以真实和发展适当的方式向患者传达信息。然而，关于如何将这些建议转化为临床实践的指导有限。本研究的目的是探索年轻癌症患者如何体验围绕疾病的沟通，特别是关于疾病或治疗可能结果的沟通。参与者包括8至18岁以下的年轻癌症患者（N = 16）。半结构化访谈的重点是他们对未来的期望，信息交流的过程，以及他们对儿科肿瘤学环境中沟通的偏好。总体而言，参与者希望医疗信息由他们的医疗保健提供者提供给他们，并希望成为医疗对话的直接参与者。然而，许多参与者表现出一些矛盾的心理或表达了相互矛盾的愿望的预后信息。例如，一些参与者报告说，他们对他们所知道的感到满意，但后来提出了挥之不去的问题。虽然不是研究的重点，但几乎每个参与者都将社会问题作为他们现在和未来生活的关键问题。虽然大多数儿童癌症患者希望参与关于癌症护理的对话，包括关于预后的对话，但这是一个个体的，有时是波动的决定，应该鼓励医疗保健提供者与患者和家庭讨论参与的偏好。这项研究强调了了解儿童患者独特的发展因素的重要性，特别是关于他们的沟通模式。
The American Academy of Pediatrics recommends that healthcare providers communicate information to patients in a truthful and developmentally appropriate manner. However, there is limited guidance about how to translate these recommendations into clinical practice. The aim of this study was to explore how young cancer patients experienced communication around their illness, especially communication about possible outcomes from disease or treatment.Participants included young people ages 8 to under 18 years with cancer (N = 16). Semi-structured interviews focused on their expectations about the future, the process of information exchange, and their preferences for communication within the pediatric oncology setting.Overall, participants wanted medical information to be provided to them by their healthcare providers and wanted to be direct participants in medical conversations. However, many participants displayed some ambivalence or conveyed conflicting wishes for prognostic information. For example, some participants reported that they were satisfied with what they knew, but later raised lingering questions. While not the focus of the study, almost every participant discussed social concerns as a key concern for their present and future life.While most pediatric cancer patients want to be involved in conversations about their cancer care, including conversations about prognosis, this is an individual and sometimes fluctuating decision, and healthcare providers should be encouraged to discuss preferences for involvement with patients and families. This study highlights the importance of understanding the developmental factors that make pediatric patients unique, especially with regard to their patterns of communication.