RESUMEN
Objective: 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. We aimed to determine the acceptability of the newly translated French PWG and to evaluate decisional readiness and decisional conflict following its use by lay people. Methods: This is an acceptability and exploratory outcomes evaluation.Participants were requested to read and complete the French PWG and to engage in an online interview. We used the Acceptability Scale to determine the acceptability and the Preparation for Decision-making Scale and decisional conflict Scale to evaluate decisional readiness. Results: Forty-two (42) people participated. The average score on the Acceptability Scale was 18.1 (scale range: 4-20 [high-better]) and 26.6 on the Preparation for Decision-Making Scale (scale range: 6-30 [high-better]). A significant number of respondents reported needing more support to help them make better decisions. Conclusion: The French PWG has been deemed acceptable and relevant for lay people not currently facing clinical decisions. Innovation: The Plan Well Guide is innovative as it is the first decision aid empowering lay people for advance serious illness planning.
RESUMEN
INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. CONTRIBUTION: 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.