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Cross-cultural Adaptation of the Document of Advance Care Planning for Chinese Adolescents and Young Adults: Voicing My CHOiCES
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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。 Abstract:Objective To describe the cross-cultural adaptation of the document of advance care planning (ACP) Voicing My CHOiCESTM 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 CHOiCESTM 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. -
Key words:
- advance care planning /
- cross-cultural adaptation /
- Voicing My CHOiCES /
- adolescent /
- young adult
作者贡献：蔡思雨、周翾和彭晓霞负责研究设计、数据分析、论文撰写；郭巧红、宁晓红、路桂军、郭艳汝、刘寅、秦新艳、王娴静、阎天伊、王瑞欣负责数据分析、文件修订和论文修改。利益冲突：所有作者均声明不存在利益冲突注：若希望获取该文件与文件使用指南，请联系VoicingMyCHOiCES_C@163.com。 -
表 1 《说出我的选择》主题分布
主题 主题内容 如何使我感到舒适 患者关于如何让自己更加舒适的意愿和偏好，如关于疼痛管理的偏好、关于房间布置的想法 我希望得到怎样的支持 患者关于陪伴和探望的偏好 我的医疗代理人 患者关于医疗代理人的相关决策 我的生命支持决策 患者关于生命支持治疗的相关决策 我的心灵诉求 患者关于心灵、精神、生命意义和宗教等方面的想法，以及如何给予患者心灵的慰藉和安宁 我如何安排自己的后事 患者关于自己后事的安排 我的财物 患者关于财物分配的想法 我希望大家如何纪念我 患者关于自己去世以后的纪念仪式的想法，如希望家人在忌日如何纪念自己 我的个人信息 患者各类个人信息，如社交账户的密码与账户处置方式 我想为我的孩子安排的事 患者为孩子做的安排，包括生活与财务的安排等 我想为我的父母安排的事 患者为父母做的安排，如为父母未来的生活提供建议和规划 我的心声 患者可在此部分给所爱的人写信 我的想法 患者可在此部分分享文件中未涉及的内容或为文件中涉及的内容提供更多细节 
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表 2 《说出我的选择》主题重要性评价结果(n=41)
主题 评分为4分或5分的人数[n(%)] 评分为3分的人数[n(%)] 评分为1分或2分的人数[n(%)] 如何使我感到舒适 41(100) 0(0) 0(0) 我希望得到怎样的支持 41(100) 0(0) 0(0) 我的医疗代理人 26(63.41) 12(29.27) 3(7.32) 我的生命支持决策 41(100) 0(0) 0(0) 我的心灵诉求 41(100) 0(0) 0(0) 我如何安排自己的后事 34(82.93) 7(17.07) 0(0) 我的财物 25(60.98) 13(31.71) 3(7.31) 我希望大家如何纪念我 36(87.80) 5(12.20) 0(0) 我的个人信息 37(90.24) 4(9.76) 0(0) 我想为我的孩子安排的事 41(100) 0(0) 0(0) 我想为我的父母安排的事* 32(96.97) 1(3.03) 0(0) 我的心声 41(100) 0(0) 0(0) 我的想法 41(100) 0(0) 0(0) *由于该主题为新增内容，第一轮评审人员不参与评审，参与评审人数为33人
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表 3 《说出我的选择》各维度本土化修改意见
维度 修改意见 语言 “Spirituality”通常被翻译为“灵性”，然而“灵性”一词并非日常用语 医疗体系 我国“放弃心肺复苏”等相关文件的签署与使用与欧美地区不同，需参考本国情况进行修订；在我国医疗决策模式中，指定医疗代理人的模式与欧美地区有较大差别；我国患者疼痛管理与营养支持的决策模式与欧美地区存在差异 文化 中国强调血缘及宗亲，对青少年及年轻成人患者，除对孩子的担心外，还有对父母的牵挂和安排，因此需增加新主题：“我想为我的父母安排的事”；中国传统文化以儒家文化为主体，强调家庭的作用，因此，在中国文化背景下考虑患者自主性时，应更多地将其放在患者与家庭、社会及其他人的关系中，以个人权利为核心，以家庭利益为基础；我国大部分人群没有宗教信仰，我国患者与欧美地区患者的灵性需求存在明显差异；其后事安排方式与欧美地区有较大差异，需根据我国国情与文化背景对相关内容进行修改 法律 ACP在我国未被立法认可，ACP能否切实履行受到当事人家属的接受程度、医生的认知与态度等多种综合因素制约，该文件是患者的单方声明，只是自己意愿的一种表达和书面记载，如果日后家属或医疗机构未按当事人的意愿执行，并无相关追责机制；应阐明该文件与遗嘱和医疗代理人文件等具有法律效力的文件的区别与相关性 ACP: 预立医疗照护计划
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