帮助导航过程:关于儿童和青少年癌症晚期影响的早期信息和沟通
Katie A Greenzang1,2,3,4, Clara C Hatch1,2,3, Anna C Revette1
1Division of Population Sciences, Dana-Farber Cancer Institute, Boston, MA.
JCO oncology practice
|March 20, 2025
概括
儿童癌症的父母和幸存者需要更好地了解潜在的晚期影响 (LE). 虽然有价值,但LE信息偏好因治疗状态而异,幸存者希望更早,更全面的细节.
科学领域:
- 儿科瘤学 儿科瘤学
- 癌症的生存率 癌症的生存率
- 卫生沟通健康沟通
背景情况:
- 患有癌症儿童的家庭往往缺乏足够的信息,以了解治疗的潜在后期影响 (LE).
- 这种信息缺口可能会让父母和幸存者对幸存者的长期健康挑战做不到准备.
研究的目的:
- 确定儿童癌症患者,幸存者及其家长关于LE早期沟通的具体信息需求和偏好.
- 了解目前正在接受治疗的人与幸存者之间这些需求的差异.
主要方法:
- 一项定性研究,涉及与家长和青少年/年轻成人 (AYA) 患者 (治疗和幸存者) 的半结构面试.
- 使用有目的的抽样,以确保诊断和社会人口统计的多样性.
- 采访采用以团队为基础的代方法进行分析,以确定关键主题和群体之间的差异.
主要成果:
- 参与者普遍认为LE信息对于未来的准备是有价值的,尽管存在情感上的困难.
- 确定了对个性化,早期LE沟通资源的强烈偏好.
- 幸存者和幸存者的家长希望获得更全面的预先信息,而接受积极治疗的人感到压倒,更喜欢逐步提供信息.
- 父母报告说,与AYA患者相比,他们对LE的担忧程度更高.
结论:
- 显然需要在儿科癌症护理中改善关于LE的沟通.
- 沟通策略必须个性化,考虑患者和家人的不同偏好和需求,根据他们的治疗状态.
- 幸存者护理应该解决对更全面的LE预先信息的表达愿望.
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