如何告诉孩子患有癌症的父母治疗已经失败:一项关于儿科肿瘤学家实践的定性研究。

IF 1.2 4区 医学 Q4 HEMATOLOGY
Johanna Terrasson, Aude Rault, Étienne Seigneur, Leïla El Mellah, Sylvie Dolbeault, Anne Brédart
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引用次数: 1

摘要

对儿科肿瘤学家来说,宣布耐药性是一件复杂的事情,因为他们必须提供大量的医学信息,同时还要考虑到对父母的重大情感影响。本研究旨在了解这些公告目前是如何进行的,以及儿科肿瘤学家如何在治疗有抵抗的情况下调整每个家庭的信息。对15名儿科肿瘤学家进行了半结构化访谈(66.7%为女性,平均年龄44.7岁)。访谈录音,并进行专题内容分析。宣布耐药性是有压力的,因为它们没有很好地编纂,很难预测,儿科肿瘤学家在如何最好地表现和选择什么词语方面有很多问题。他们中的大多数人认为,疾病的严重程度,甚至是不可治愈性,以及提供治疗替代方案是传递信息的重要组成部分。儿科肿瘤学家描述了他们如何适应每个家庭的沟通,特别是与父母的问题有关,以及他们在宣布消息时的反应。他们还需要适应之前与家人的相识,以及之前的交流。最后,儿科肿瘤学家承认他们在估计家长需要的信息时的主观性。了解这些公告的过程,可以让我们从另一个角度看待这一公告所涉及的问题。在这个困难的时刻,可以提出支持儿科肿瘤医生的建议:沟通支持工具,结对工作和讨论小组。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
How do you tell parents whose child has cancer that the treatment has failed: A qualitative study on pediatric oncologists' practices.

Announcing drug resistance is complex for pediatric oncologists because they have to provide a substantial amount of medical information while taking a major emotional impact on the parents into account. This study aimed to understand how these announcements are currently conducted and how pediatric oncologists adapt the information given to each family in situations where there is resistance to treatment. Semi-structured interviews were conducted with 15 pediatric oncologists (66.7% women, aged 44.7 years on average). Interviews were audio-recorded and a thematic content analysis was conducted. Announcements of drug resistance are stressful, as they are not well codified, difficult to anticipate, and pediatric oncologists have many issues about how best to behave and which words to choose. The majority of them believe that the severity, or even the incurability of the disease, and the offer of a therapeutic alternative are essential components of the information to pass on. Pediatric oncologists describe how they adapt their communication to each family, particularly in relation to parents' questions, and also to their reactions during the announcement. They also need to adapt to the prior acquaintance they may have with the families, and to previous exchanges. Finally, pediatric oncologists acknowledge their subjectivity when estimating the parents need in terms of information. Understanding the course of these announcements gives us another point of view at the issues involved in this announcement. Proposals to support pediatric oncologists in this difficult moment can be suggested: communication support tool, work in pairs and discussion group.

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来源期刊
CiteScore
2.60
自引率
5.90%
发文量
71
审稿时长
6-12 weeks
期刊介绍: PHO: Pediatric Hematology and Oncology covers all aspects of research and patient management within the area of blood disorders and malignant diseases of childhood. Our goal is to make PHO: Pediatric Hematology and Oncology the premier journal for the international community of clinicians and scientists who together aim to define optimal therapeutic strategies for children and young adults with cancer and blood disorders. The journal supports articles that address research in diverse clinical settings, exceptional case studies/series that add novel insights into pathogenesis and/or clinical care, and reviews highlighting discoveries and challenges emerging from consortia and conferences. Clinical studies as well as basic and translational research reports regarding cancer pathogenesis, genetics, molecular diagnostics, pharmacology, stem cells, molecular targeting, cellular and immune therapies and transplantation are of interest. Papers with a focus on supportive care, late effects and on related ethical, legal, psychological, social, cultural, or historical aspects of these fields are also appreciated. Reviews on important developments in the field are welcome. Articles from scientists and clinicians across the international community of Pediatric Hematology and Oncology are considered for publication. The journal is not dependent on or connected with any organization or society. All submissions undergo rigorous peer review prior to publication. Our Editorial Board includes experts in Pediatric Hematology and Oncology representing a wide range of academic and geographic diversity.
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