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

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.

Loneliness and social isolation among the older person in a Swiss secure institution: a qualitative study.

BACKGROUND: A pandemic of loneliness is hitting the aging population. As COVID19 forced us to isolate ourselves, we are in a better position to understand consequences of social distancing. The recent literature showed that older incarcerated adults are particularly at risk of health-related complications due to isolation in the prison environment, reducing their social capital. Mental and physical health can be severely affected by loneliness and social isolation, especially in prison. METHODS: Our qualitative study investigates the view of older persons deprieved of their liberty on loneliness and social isolation pertaining to their mental health. We interviewed 57 older participants, including imprisoned individuals and forensic patients, following a semi-structured interview guide. During the data management and data analysis process, we excluded 7 interviews which were of poorer quality. Thereafter, we analyzed the remainders following a thematic approach. RESULTS: Most interviewees experience loneliness following lack of significant human relationships in prison. Making friends appears to be a challenge for all the participants, because, for one thing, they do not find people with similar interests. Also, secure institution setting aggravates isolation due to the restrictions of movement placed such as rules concerning movement between floors, hindering intimate relationship, and separation between friends. Moreover, contact with prison personnel is limited and lack social capital (e.g. trust). CONCLUSION: To our knowledge, this study is one of the first to present incarcerated persons' perspective on loneliness, social isolation and poor social capital in the Swiss prison setting. These has been reported to cause health problems both somatic and psychological. Our participants experience these deleterious factors in detention. As prisons have the possibility to become a health-promoting environment through connectedness, friendship, and trust promotion, stakeholders need to better their social capital.