肿瘤话题与儿童福祉：晚期癌症患儿家长对“好”消息和“坏”消息的认知
Tumor Talk and Child Well-Being: Perceptions of "Good" and "Bad" News Among Parents of Children With Advanced Cancer.
作者信息
Feraco Angela M, Dussel Veronica, Orellana Liliana, Kang Tammy I, Geyer J Russell, Rosenberg Abby R, Feudtner Chris, Wolfe Joanne
机构信息
Dana-Farber Cancer Institute, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts, USA; Ariadne Labs, Brigham and Women's Hospital and Harvard T.H. Chan School of Public Health, Boston, Massachusetts, USA.
Dana-Farber Cancer Institute, Boston Children's Hospital and Harvard Medical School, Boston, Massachusetts, USA; Center for Research and Implementation in Palliative Care, Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina.
出版信息
J Pain Symptom Manage. 2017 May;53(5):833-841. doi: 10.1016/j.jpainsymman.2016.11.013. Epub 2017 Jan 3.
CONTEXT
Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition.
OBJECTIVE
To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent perspectives.
METHODS
Parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding three months that contained "good news" or "bad news" related to their child's medical condition. We used mixed methods to evaluate parent responses to both open-ended and fixed-response items.
RESULTS
Of 104 enrolled parents, 86 (83%) completed the survey. Six (7%) parents reported discussing neither good nor bad news, 18 (21%) reported only bad news, 15 (17%) reported only good news, and 46 (54%) reported both good and bad news (one missing response). Seventy-six parents (88%) answered free-response items. Descriptions of both good and bad news discussions consisted predominantly of "tumor talk" or cancer control. Additional treatment options featured prominently, particularly in discussions of bad news (42%). Child well-being, an important good news theme, encompassed treatment tolerance, symptom reduction, and quality of life.
CONCLUSION
A majority of parents of children with advanced cancer report discussing both good and bad news in the preceding three months. Although news related primarily to cancer control, parents also describe good news discussions related to their child's well-being. Understanding how parents of children with advanced cancer classify and describe the news they receive may enhance efforts to promote family-centered communication.
背景
对于晚期癌症患儿的家长如何对他们收到的有关孩子病情的消息进行分类，人们知之甚少。
目的
从家长的角度，在晚期儿童癌症的讨论中形成“好消息”和“坏消息”的概念。
方法
邀请在三家儿童医院接受治疗的晚期癌症患儿的家长分享前三个月内与孩子病情相关的包含“好消息”或“坏消息”的谈话细节。我们使用混合方法评估家长对开放式和固定回答项目的反应。
结果
在104名登记的家长中，86名（83%）完成了调查。6名（7%）家长表示既没有讨论好消息也没有讨论坏消息，18名（21%）家长只报告了坏消息，15名（17%）家长只报告了好消息，46名（54%）家长报告了好消息和坏消息（一个回答缺失）。76名家长（88%）回答了自由回答项目。好消息和坏消息讨论的描述主要包括“肿瘤话题”或癌症控制。额外的治疗选择显著突出，特别是在坏消息的讨论中（42%）。儿童福祉是一个重要的好消息主题，包括治疗耐受性、症状减轻和生活质量。
结论
大多数晚期癌症患儿的家长报告在过去三个月里既讨论了好消息也讨论了坏消息。虽然消息主要与癌症控制有关，但家长们也描述了与孩子福祉相关的好消息讨论。了解晚期癌症患儿的家长如何对他们收到的消息进行分类和描述，可能会加强以家庭为中心的沟通努力。
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