Plaisance Ariane, Skrobik Yoanna, Moreau Mathieu, Pageau Felix, Tapp Diane, Heyland Daren K
Faculty of Nursing, Laval University, Quebec City, Quebec, Canada.
Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
Health Expect. 2022 Jun;25(3):1016-1028. doi: 10.1111/hex.13447. Epub 2022 Feb 2.
Traditional advance care planning focuses on end-of-life planning in the context of a certain or imminent death. It is not tailored for serious illness planning, where the 'death' outcome is uncertain. The Plan Well Guide™ (PWG) is a decision aid that empowers lay persons to better understand different types of care and prepares them, and their substitute decision-makers, to express both their authentic values and informed treatment preferences in anticipation of serious illness. A cultural adaptation was necessary to make the material suitable to the context of Quebec, a French-speaking Canadian province.
We engaged lay collaborators and experts in a panel, involving three phases of consultation and data collection. These included an online questionnaire, focused interviews and virtual focus groups that identified elements within the francophone PWG affecting its feasibility, adaptation and integration, as well as items that should be modified.
We engaged 22 collaborators between April and September 2021. The majority (82%) ranked the first translation as good or very good; most (70%) stated that they would recommend the final adaptation. Both lay and expert panel members suggested simplifying the language and framing the tool better within the context of other advance medical planning processes in Quebec. Translation was considered in a cultural context; the challenges identified by the research team or by collaborators were addressed during the focus group. Examples of wording that required discussion include translating 'getting the medical care that's right for you' when referring to the PWG's goal. An equivalent expression in the French translation was believed to invoke religious associations. Using the term 'machines' to describe life-sustaining treatments was also deliberated.
Our collaborative iterative adaptation process led to the first French advanced serious illness planning tool. How acceptable and user-friendly this French adaptation of the PWG is in various Canadian French-speaking environments requires further study.
We organized a focus group inviting both lay collaborators and experts to contribute to the interpretation of the results of the previous phases. This choice allowed us to add more value to our results and to the final PWG in French.
传统的预先护理计划侧重于在确定或即将死亡的背景下进行临终规划。它并非为重病规划量身定制，因为在重病规划中，“死亡”结果并不确定。《好好规划指南》（PWG）是一种决策辅助工具，能让非专业人士更好地理解不同类型的护理，并使他们及其替代决策者在面对重病时能够表达自己的真实价值观和明智的治疗偏好。为使该材料适合加拿大法语省份魁北克的情况，有必要进行文化调适。
我们让非专业合作者和专家参与一个小组，涉及三个咨询和数据收集阶段。这些阶段包括在线问卷、重点访谈和虚拟焦点小组，以确定法语版PWG中影响其可行性、调适和整合的要素，以及应修改的项目。
2021年4月至9月期间，我们邀请了22位合作者。大多数人（82%）将首个译本评为良好或非常好；大多数人（70%）表示会推荐最终的调适版本。非专业和专家小组成员都建议简化语言，并在魁北克其他预先医疗规划流程的背景下更好地构建该工具。翻译是在文化背景下进行考虑的；研究团队或合作者发现的挑战在焦点小组中得到了解决。需要讨论的措辞示例包括在提及PWG的目标时翻译“获得适合你的医疗护理”。法语译本中的一个等效表达被认为会引发宗教联想。用“机器”一词来描述维持生命的治疗方法也经过了讨论。
我们的协作迭代调适过程产生了首个法语版的重病预先规划工具。在加拿大不同的法语环境中，PWG的这个法语版本的可接受性和用户友好性如何，还需要进一步研究。
我们组织了一个焦点小组，邀请非专业合作者和专家参与，以帮助解读前几个阶段的结果。这一选择使我们的研究结果和最终的法语版PWG更具价值。
