Cultural adaptation of a community‐based advance serious illness planning decision aid to the Quebec context involving end‐users

Abstract

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

A Quality Assessment of Goals of Care Forms in a Sample of Older Patients in Various Care Settings in Quebec, Canada

“…Regardless, it would seem that patients are ill-prepared to discuss with physicians their values and preferences and, hence, physicians are less likely to engage them in comprehensive serious illness planning discussions. Strategies to increase advance planning and better prepare patients and families to talk about their authentic values and informed treatment preferences for serious illness are warranted [ 12 ].…”

Evaluation of a French adaptation of a community-based advance serious illness planning decision aid

“…The PWG [ 20 ] and its French translation and cultural adaptation [ 23 ] were made with end-users and healthcare professionals as part of the design process. The public can use PWG with or without professional help.…”

“…Participants had to be of legal age as per provincial law, be able to give informed consent, and have the ability to speak and write French. We did not include laypersons who took part in translating and adapting the decision aid [ 23 ]. After reviewing a consent form and completing the evaluation interview, participants received a $10 gift card.…”

“…The process of translation and adaptation was done with the participation of 12 experts and 15 laypersons from Quebec, Canada. From the beginning of the translation and adaptation process, both groups of stakeholders had a favourable opinion towards the PWG and indicated that they would recommend the final adaptation [ 23 ].…”

Engagement of Older Adults Receiving Home Care Services and Their Caregivers in Health Decisions in Partnership With Clinical Teams: Protocol for a Multimethod Study to Prioritize and Culturally Adapt Decision Aids for Home Care

“…Within Quebec, health care services, including home care services, are provided by 18 regional authorities [ 15 , 35 ]. Since the province of Quebec has its own health care system and regulations, and its population is mostly French speaking, PtDAs need careful and culturally sensitive translation and need to be adapted to the Quebec situation, for example, include options available specifically in Quebec, to ensure their uptake by the population [ 36 ].…”