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;
CAI Siyu;GUO Qiaohong;NING Xiaohong;LU Guijun;GUO Yanru;LIU Yin;QIN Xinyan;WANG Xianjing;YAN Tianyi;WANG Ruixin;ZHOU Xuan;PENG Xiaoxia;Center for Clinical Epidemiology and Evidence-based Medicine, Beijing Children's Hospital,Capital Medical University,National Center for Children's Health;School of Nursing, Capital Medical University;Department of Geriatrics, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences &Peking Union Medical College;Department of Pain, Beijing Tsing

• 1:国家儿童医学中心首都医科大学附属北京儿童医院临床流行病与循证医学中心
• 2:首都医科大学护理学院
• 3:中国医学科学院北京协和医院老年医学科
• 4:清华大学附属北京清华长庚医院疼痛科

摘要(Abstract)：

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。
Objective To describe the cross-cultural adaptation of the document of advance care planning(ACP) Voicing My CHOiCES^(TM) in Chinese, and provide the basis for the practice of ACP in China. Methods The process of cross-cultural adaptation involved document translation and synthesis, evaluation of healthcare providers, evaluation of patients, back translation, author revision of the original document, and finalization. The participants were all kinds of healthcare providers involved in ACP practice, including doctors, nurses, social workers, psychologists, hospice volunteers, anesthesiologists, nutritionists, and pharmacists. The heathcare providers were invited to answer a questionnaire about the document's structure, importance, appropriateness, and level of language localization. The evaluation of healthcare providers included three rounds of the process. We revised the document based on the feedback and developed the first draft. The first draft of the document was reviewed by young patients with fatal diseases and their families. They read each page of the document and rated the perceived appropriateness, helpfulness, and stressfulness of each item. After further revision, the final document was formed. Results Due to the differences in language, culture, health, and legal system between China and the United States, the cross-cultural adaptations were made in some topics of the document. The Chinese version of the document included 13 topics, involving medical and nursing decision-making, daily life planning, funeral planning, and spiritual support, etc. In total, 91.67% of the patients and 80% of their parents considered all topics covered to be appropriate for age and culture. In total, 75% of patients and 70% of their parents found all the topics to be helpful. In the evaluation of stress, death-related topics brought pressure on patients. Conclusions The Chinese version of Voicing My CHOiCES(TM) in Chinese, and provide the basis for the practice of ACP in China. Methods The process of cross-cultural adaptation involved document translation and synthesis, evaluation of healthcare providers, evaluation of patients, back translation, author revision of the original document, and finalization. The participants were all kinds of healthcare providers involved in ACP practice, including doctors, nurses, social workers, psychologists, hospice volunteers, anesthesiologists, nutritionists, and pharmacists. The heathcare providers were invited to answer a questionnaire about the document's structure, importance, appropriateness, and level of language localization. The evaluation of healthcare providers included three rounds of the process. We revised the document based on the feedback and developed the first draft. The first draft of the document was reviewed by young patients with fatal diseases and their families. They read each page of the document and rated the perceived appropriateness, helpfulness, and stressfulness of each item. After further revision, the final document was formed. Results Due to the differences in language, culture, health, and legal system between China and the United States, the cross-cultural adaptations were made in some topics of the document. The Chinese version of the document included 13 topics, involving medical and nursing decision-making, daily life planning, funeral planning, and spiritual support, etc. In total, 91.67% of the patients and 80% of their parents considered all topics covered to be appropriate for age and culture. In total, 75% of patients and 70% of their parents found all the topics to be helpful. In the evaluation of stress, death-related topics brought pressure on patients. Conclusions The Chinese version of Voicing My CHOiCES^(TM) is the first ACP document applicable to adolescents and young adults in China. This document can help young Chinese patients to think and express their wishes and preferences, and guide patients, family members, and healthcare providers to fully and deeply communicate with each other about future planning.

关键词(KeyWords)： 预立医疗照护计划;汉化;说出我的选择;青少年;年轻成人
advance care planning;cross-cultural adaptation;Voicing My CHOiCES;adolescent;young adult

Abstract:

Keywords:

基金项目(Foundation): 首都医科大学附属北京儿童医院儿童用药专项（YZQN202001）;首都医科大学附属北京儿童医院管理课题（YGLQ202001）;; 北京市医院管理局儿科学科协同发展中心专项经费（XTCX201812）;; 首都医科大学国家自然科学基金培育基金项目（PYZ20043）~~

作者(Authors): 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;
CAI Siyu;GUO Qiaohong;NING Xiaohong;LU Guijun;GUO Yanru;LIU Yin;QIN Xinyan;WANG Xianjing;YAN Tianyi;WANG Ruixin;ZHOU Xuan;PENG Xiaoxia;Center for Clinical Epidemiology and Evidence-based Medicine, Beijing Children's Hospital,Capital Medical University,National Center for Children's Health;School of Nursing, Capital Medical University;Department of Geriatrics, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences &Peking Union Medical College;Department of Pain, Beijing Tsing

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