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适用于青少年与年轻成人的预立医疗照护计划文件的汉化研究:《说出我的选择》

蔡思雨 郭巧红 宁晓红 路桂军 郭艳汝 刘寅 秦新艳 王娴静 阎天伊 王瑞欣 周翾 彭晓霞 中华医学会儿科学分会血液学组儿童舒缓治疗亚专业组

蔡思雨, 郭巧红, 宁晓红, 路桂军, 郭艳汝, 刘寅, 秦新艳, 王娴静, 阎天伊, 王瑞欣, 周翾, 彭晓霞, 中华医学会儿科学分会血液学组儿童舒缓治疗亚专业组. 适用于青少年与年轻成人的预立医疗照护计划文件的汉化研究:《说出我的选择》[J]. 协和医学杂志. doi: 10.12290/xhyxzz.2021-0162
引用本文: 蔡思雨, 郭巧红, 宁晓红, 路桂军, 郭艳汝, 刘寅, 秦新艳, 王娴静, 阎天伊, 王瑞欣, 周翾, 彭晓霞, 中华医学会儿科学分会血液学组儿童舒缓治疗亚专业组. 适用于青少年与年轻成人的预立医疗照护计划文件的汉化研究:《说出我的选择》[J]. 协和医学杂志. doi: 10.12290/xhyxzz.2021-0162
CAI Siyu, GUO Qiaohong, NING Xiaohong, LU Guijun, GUO Yanru, LIU Yin, QIN Xinyan, WANG Xianjing, YAN Tianyi, WANG Ruixin, ZHOU Xuan, PENG Xiaoxia, Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association. Cross-cultural Adaptation of the Document of Advance Care Planning for Chinese Adolescents and Young Adults: Voicing My CHOiCES[J]. Medical Journal of Peking Union Medical College Hospital. doi: 10.12290/xhyxzz.2021-0162
Citation: CAI Siyu, GUO Qiaohong, NING Xiaohong, LU Guijun, GUO Yanru, LIU Yin, QIN Xinyan, WANG Xianjing, YAN Tianyi, WANG Ruixin, ZHOU Xuan, PENG Xiaoxia, Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association. Cross-cultural Adaptation of the Document of Advance Care Planning for Chinese Adolescents and Young Adults: Voicing My CHOiCES[J]. Medical Journal of Peking Union Medical College Hospital. doi: 10.12290/xhyxzz.2021-0162

适用于青少年与年轻成人的预立医疗照护计划文件的汉化研究:《说出我的选择》

doi: 10.12290/xhyxzz.2021-0162
基金项目: 

首都医科大学附属北京儿童医院儿童用药专项(YZQN202001);北京市医院管理局儿科医学协同发展专项(XTCX201812);首都医科大学附属北京儿童医院管理课题(YGLQ202001);首都医科大学国家自然科学基金培育基金项目(PYZ20043)

详细信息
    通讯作者:

    周翾 电话:010-59616413,E-mail:bchppc@163.com

    彭晓霞 电话:010-59617132,E-mail:pengxiaoxia@bch.com.cn

  • 中图分类号: R179;R-0

Cross-cultural Adaptation of the Document of Advance Care Planning for Chinese Adolescents and Young Adults: Voicing My CHOiCES

Funds: 

Children’s Medicine Research Project of Beijing Children’s Hospital, Capital Medical University (YZQN202001)

  • 摘要: 目的 将适用于青少年与年轻成人的预立医疗照护计划(advance care planning, ACP)文件《Voicing My CHOiCES》进行汉化,为在我国该人群中进行ACP实践提供基础。 方法 汉化流程包括背对背翻译、译本整合、医务人员评审、患者评审、背对背回译、回译本整合、原文件作者修订、定稿。医务人员评审的参与者为ACP实践中涉及的各类医务工作者,包括医生、护士、社工等。审评内容为文件整体结构合理性,以及各个主题的重要性、适用性和语言本土化水平。医务人员评审包括3轮评审过程,每轮评审后对文件进行修订,形成文件初稿。文件初稿再经患有致命性疾病的年轻患者及其家属进行评审,审评内容包括各个主题的适宜程度、帮助程度、压力程度,在此基础上对文件进一步修订,形成文件终稿,经原作者修订后定稿。 结果 因中美在语言、文化、医疗和法律体系上的差异,汉化过程针对文件中的部分主题进行本土化调适。中文版文件包括13个主题,涉及医疗与护理决策、日常生活规划、后事规划等内容。91.67%的患者和80%的患者父母认为所有主题均与患者的年龄和文化相适宜,符合年轻人需求和中国文化特征。75%的患者和70%的患者父母认为所有主题均是有帮助的。在压力程度评价中,死亡相关主题会为患者及其家属带来较大压力。 结论 《说出我的选择》是我国首个适用于青少年和年轻成人的ACP文件。该文件可帮助中国年轻患者思考和表达自己的偏好、意愿和价值观,确定未来医疗和护理的目标以及生活规划,并与亲属和医务人员讨论此类问题。
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出版历程
  • 收稿日期:  2021-02-04
  • 网络出版日期:  2021-08-25

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