Gina Bravo’s research while affiliated with Université de Sherbrooke and other places

Background Informed end-of-life decision-making requires a high level of death literacy. We still know little about the general population’s level of knowledge and its determinants. Aim To assess knowledge of the general population regarding the legal status and definitions of various end-of-life practices, and to compare the level of knowledge according to individual characteristics known to influence death literacy. Design A self-administered questionnaire featuring two evolving vignettes was used to assess participants’ knowledge relating to the legal status of various end-of-life practices and whether these practices are Medical Aid in Dying (MAiD), which is legal in Canada. The questionnaire also assessed participants’ individual characteristics such as their experience as caregivers for someone who received palliative care, their perception of health, and their financial situation. Setting/participants Participants were community-based community-based Canadian adults able to read French or English. Results In total, 27% of the participants associated the description of care withholding with MAiD, 39% incorrectly associated the description of continuous palliative sedation with MAiD, and 34% incorrectly indicated that the described intervention was illegal. Having cared for someone who received palliative care, at a younger age, a higher level of education, and having participated in advance care planning were associated with better knowledge regarding end-of-life practices. Conclusion Gaps in knowledge about end-of-life practices exist in the general population, they are associated with different individual characteristics and may limit citizens’ capacity to engage in informed end-of-life decision-making. Community-based interventions adapted to different audiences are essential to ensure a quality end-of-life for all.

COVID-19 triage protocols are resource allocation processes to deal with the potential lack of resources in Intensive Care Units (ICU). They have given rise to numerous ethical issues and controversies. Among them is the fear that people will be denied access to ICU on the basis of judgments about their quality of life, social value, frailty or age. This online Democratic Deliberation (DD) with members of the public aimed to discover the necessary considerations and conditions that make triage protocols more acceptable to guide future decisions in terms of the values and criteria that must underpin triage protocols. We simultaneously conducted the online DD in Quebec and Ontario on May 28th and June 4th, 2022, among adults who do not work in the healthcare sector, recruited randomly among the members of the public registered on Leger Opinion poll website to favor sociodemographic diversity. Data was analyzed using thematic analysis. Among the participants who took part in the study, 27 participants were from Ontario and 20 from Quebec. Three main themes emerged: 1) Acceptance of the protocol and values, 2) Considerations to be integrated in triage protocols, 3) Conditions which may favor a greater public acceptance of these protocols. Participants supported the idea of prioritizing patients with the best prognosis of survival under extreme conditions. The maximization of benefits was the most predominant approach. Participants considered that triage protocols are necessary to reduce arbitrariness in decision making and to facilitate these tragic decisions by health professionals.

Background Online democratic deliberation (ODD) may foster public engagement in new health strategies by providing opportunities for knowledge exchange between experts, policy makers, and the public. It can favor decision-making by generating new points of view and solutions to existing problems. Deliberation experts recommend gathering feedback from participants to optimize future implementation. However, this online modality has not been frequently evaluated. Objective This study aims to (1) assess the quality of an ODD held in Quebec and Ontario, Canada, on the topic of COVID-19 triage protocols for access to critical care in an extreme pandemic context and (2) determine its transformative aspect according to the perceptions of participants. Methods We conducted a simultaneous ODD in Quebec and Ontario on May 28 and June 4, 2022, with a diversified target audience not working in the health care system. We used a thematic analysis for the transcripts of the deliberation and the written comments of the participants related to the quality of the process. Participants responded to a postdeliberation questionnaire to assess the quality of the ODD and identify changes in their perspectives on COVID-19 pandemic triage protocols after the deliberation exercise. Descriptive statistics were used. An index was calculated to determine equality of participation. Results The ODD involved 47 diverse participants from the public (n=20, 43% from Quebec and n=27, 57% from Ontario). Five themes emerged: (1) process appreciation, (2) learning experience, (3) reflecting on the common good, (4) technological aspects, and (5) transformative aspects. A total of 46 participants responded to the questionnaire. Participants considered the quality of the ODD satisfactory in terms of process, information shared, reasoning, and videoconferencing. A total of 4 (80%) of 5 participants reported at least 1 change of perspective on some of the criteria and values discussed. Most participants reported that the online modality was accessible and user-friendly. We found low polarization when calculating equal participation. Improvements identified were measures to replace participants when unable to connect and optimization of time during discussions. Conclusions Overall, the participants perceived the quality of ODD as satisfactory. Some participants self-reported a change of opinion after deliberation. The online modality may be an acceptable alternative for democratic deliberation but with some organizational adaptations.

Purpose This study develops a short form of the Functional Autonomy Measurement System (SMAF), the SF-SMAF, for measuring functional capacity in patients undergoing acute care post-stroke, identifies predictors of the discharge destination chosen by the care team, and derives an algorithm that integrates the SF-SMAF and other predictors to guide discharge planning. Method This multisite prospective cohort study involved 200 patients assessed with the SMAF within 8 days post-stroke. Sociodemographic and clinical data were extracted from patients’ medical records. We performed linear regressions to identify subsets of SMAF items that closely approximate the SMAF total score and asked a panel of experts to make the final selection. We used logistic regression to develop an algorithm that predicts discharge destinations using the SF-SMAF and other predictors. Results The SF-SMAF includes four items: “washing”, “walking inside”, “judgment”, and “budgeting”. It is highly correlated with the SMAF ( R ² = 0.94) and, alone, predicts 71% of discharge destinations. Adding obstacles to returning home, support required from caregivers, and the ability to communicate, raises the prediction of the proposed algorithm to 82%. Conclusions The SF-SMAF results closely approximate those of the SMAF in the first week post-stroke. Following further validation, the proposed algorithm could guide clinicians in using the SF-SMAF for discharge planning.

Background The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario’s protocols were presented to the public in a democratic deliberation during the summer of 2022. Objectives (1) To explore the perspectives of Quebec and Ontario citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria. Methods This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis. Results A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value – a less acceptable tiebreaker. Conclusion Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria.

Background Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

BACKGROUND Online democratic deliberation (ODD) may foster public engagement in new health strategies by providing opportunities for knowledge exchange between experts, policy makers, and the public. It can favor decision-making by generating new points of view and solutions to existing problems. Deliberation experts recommend gathering feedback from participants to optimize future implementation. However, this online modality has not been frequently evaluated. OBJECTIVE This study aims to (1) assess the quality of an ODD held in Quebec and Ontario, Canada, on the topic of COVID-19 triage protocols for access to critical care in an extreme pandemic context and (2) determine its transformative aspect according to the perceptions of participants. METHODS We conducted a simultaneous ODD in Quebec and Ontario on May 28 and June 4, 2022, with a diversified target audience not working in the health care system. We used a thematic analysis for the transcripts of the deliberation and the written comments of the participants related to the quality of the process. Participants responded to a postdeliberation questionnaire to assess the quality of the ODD and identify changes in their perspectives on COVID-19 pandemic triage protocols after the deliberation exercise. Descriptive statistics were used. An index was calculated to determine equality of participation. RESULTS The ODD involved 47 diverse participants from the public (n=20, 43% from Quebec and n=27, 57% from Ontario). Five themes emerged: (1) process appreciation, (2) learning experience, (3) reflecting on the common good, (4) technological aspects, and (5) transformative aspects. A total of 46 participants responded to the questionnaire. Participants considered the quality of the ODD satisfactory in terms of process, information shared, reasoning, and videoconferencing. A total of 4 (80%) of 5 participants reported at least 1 change of perspective on some of the criteria and values discussed. Most participants reported that the online modality was accessible and user-friendly. We found low polarization when calculating equal participation. Improvements identified were measures to replace participants when unable to connect and optimization of time during discussions. CONCLUSIONS Overall, the participants perceived the quality of ODD as satisfactory. Some participants self-reported a change of opinion after deliberation. The online modality may be an acceptable alternative for democratic deliberation but with some organizational adaptations.

Au Québec, la COVID-19 a frappé de plein fouet les centres d’hébergement et de soins de longue durée (CHSLD), où plus de 64 % des décès liés à cette maladie sont survenus lors de la première vague. À partir de deux études visant à explorer les effets de la pandémie sur les soins de fin de vie en CHSLD, les auteurs réfléchissent à la détresse ressentie par divers protagonistes impliqués dans ces recherches. D’une part, les soignants ont été confrontés à des situations humainement difficiles liées au sens de la vie et à l’accompagnement de la mort dans ces milieux. D’autre part, confrontés à la souffrance des soignants et des familles, certains responsables des milieux de vie ont rapporté de hauts niveaux de détresse psychologique. De surcroît, les membres des équipes de recherche ont accueilli et analysé la détresse des participants qui se surajoutait ainsi aux difficultés personnelles liées à la pandémie. Ces vécus différents nécessitent d’être discutés ouvertement afin de soulever les enjeux de la recherche en temps de pandémie et de proposer de meilleures stratégies de soutien pour tous les acteurs impliqués.

Background The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreaker. In order to better understand the public opinion, Quebec and Ontario’s protocols were presented to the public in a democratic deliberation during the summer of 2022. Objectives 1) To explore the perspectives of Quebec and Ontario citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. 2) To analyze these results considering other public consultations held during the pandemic on these criteria. Methods This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare personnel. Participants were first presented the essential components of prioritization protocols and their related issues. They subsequently deliberated on the acceptability of these criteria. The deliberation was then subject to thematic content analysis. A scoping review was previously done to identify other public consultations conducted on this topic in the context of this pandemic, and to guide the analysis of our results. Results A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: 1) Priority to young patients - the life cycle - a preferred tiebreaker; 2) Randomization - a tiebreaker of last resort; 3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and 4) Social value – a less acceptable tiebreaker. Conclusion Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria.

Medical assistance in dying (MAID) is available in Canada for competent persons meeting the legal requirements. Extending access to persons lacking decisional capacity is being considered. Social workers may be called upon to accompany these persons through the MAID process. As part of a larger survey, we asked social workers from Quebec whether they would be willing to be involved should advance requests for MAID be legalized. Of the 367 respondents, 291 replied that they would. Using multivariable logistic regression, we identified characteristics that distinguish them from the other social workers surveyed: importance of religious or spiritual beliefs, being born in Canada, having received assisted-death requests from families, professional experiences with MAID, and dreading the prospect of participating in MAID for persons lacking decisional capacity. These findings underline the need for educational interventions that would increase social workers' confidence in providing high-quality care to clients who opt for MAID.