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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.

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Objectives: To evaluate polypharmacy in older people to determine whether the number of medications de-prescribed correlates with the extent of improvement in quality of life (QoL) and clinical outcomes. Design: A prospective longitudinal cohort study of polypharmacy in people living in a community in Israel. Setting: Participants aged 65 years or older who took at least six prescription drugs followed up for at least 3 years (range 3-10 years) after poly-de-prescription (PDP) recommendations. Interventions: PDP recommended at first home visit using the Garfinkel algorithm. Annual follow-up and end-of-study questionnaires used to assess clinical outcomes, QoL, and satisfaction from de-prescribing. All medications taken, complications, hospitalizations, and mortality recorded. In total, 307 participants met the inclusion criteria; 25 incomplete end-of-study questionnaires meant 282 participants for subjective analysis. Participants divided into two subgroups: (i) those who discontinued more than 50% of the drugs (PDP group) or (ii) those who discontinued less than 50% of the drugs (non-responders, NR). Main outcome measures: Objective: 3-year survival rate and hospitalizations. Subjective: general satisfaction from de-prescribing; change in functional, mental, and cognitive status; improved sleep quality, appetite, and continence; and decreased pain. Results: Mean age: 83 years (range 65-99 years). Mean number of drugs at baseline visit: 9.8 (range 6-20); 6.7 ± 2.0 de-prescribed in the PDP group (n = 146) and 2.2 ± 2.1 in the NR group (n = 161) (p < 0.001).No statistical difference between the groups in the 3-year survival rate and hospitalizations, but a significant improvement in functional and cognitive status and, in general, satisfaction from the intervention in the PDP group compared to the NR group. Improvement usually evident within the first 3 months and persists for several years. Conclusion: Poly-de-prescribing in the older population has beneficial effects on several clinical outcomes with no detrimental effect on the rate of hospitalization and survival. The extent of improvement correlates with the extent of de-prescribing. Applying the Garfinkel algorithm globally may improve QoL in millions of patients, a clinical and economic win-win situation.

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There are 24 regional pediatric palliative care resource teams (ERSP) in metropolitan and overseas France. An initial review of the ERSPs was carried out in 2015. The ERSP commission of the Société française de soins palliatifs pédiatriques (French Society for Pediatric Palliative Care) wanted to review the situation again, ten years after the creation of these teams. This article presents the main findings.

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Person-centredness is a cornerstone to a palliative approach to care. However, there is a risk that a person-centred perspective is lost in how a palliative approach is evaluated. We explored the extent to which evaluations of a palliative approach are consistent with its person-centred ethical stance. Using a narrative review approach, we critically reflected on how the experiences, priorities and concerns of patients and family are represented, or not represented, in evaluations of a palliative approach. We were guided by the following questions: (1) What types of outcomes and indicators are commonly used to evaluate a palliative approach? (2) Whose perspectives are represented in current evaluations of a palliative approach? And (3) What are the foci of evaluation in this body of research? We observed that the evaluations of a palliative approach are commonly based on indicators of its implementation and predominantly reflect the perspectives of healthcare providers and healthcare systems, rather than patients or family. Although evaluations focused on healthcare providers and systems are important for integrating a palliative approach, there is concern that the essence of person-centredness is lost when the perspectives of patients and families about their healthcare needs, outcomes and experiences are not consistently measured as the ultimate goal of care. There is a need for more emphasis on evaluation practices that value person-centred outcomes, in addition to outcomes oriented to the needs of healthcare providers and systems.

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BACKGROUND: Long-term care (LTC) homes have been disproportionately impacted during COVID-19. PURPOSE: To explore the perspectives of stakeholders across Canada around implementing a palliative approach in LTC home during COVID-19. METHODS: Qualitative, descriptive design using one-to-one or paired semi-structured interviews. RESULTS: Four themes were identified: (1) the influence of the pandemic on implementing a palliative approach, (2) families are an essential part of implementing a palliative approach, (3) prioritizing advance care planning (ACP) and goals of care (GoC) discussions in anticipation of the overload of deaths and (4) COVID-19 highlighting the need for a palliative approach as well as several subthemes. CONCLUSION: The COVID-19 pandemic influenced the implementation of a palliative approach to care, where many LTC homes faced an overwhelming number of deaths and restricted the presence of family members. A more concentrated focus on home-wide ACP and GoC conversations and the need for a palliative approach to care in LTC were identified.

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This study used a single-group pre-test and post-test design to evaluate an educational workshop for multidisciplinary staff working in long-term care homes on implementing a palliative approach to care and perceptions about advanced care planning conversations. Two outcomes were measured to assess the preliminary efficacy of the educational workshop at baseline and 1-month post-intervention. Knowledge regarding implementing a palliative approach to care was assessed using the End-of-Life Professional Caregivers Survey and changes in staff perception toward ACP conversations were assessed using the Staff Perceptions Survey. Findings suggest that staff experienced an improvement in self-reported knowledge regarding a palliative approach to care (p ≤ .001); and perceptions of knowledge, attitude, and comfort related to advance care planning discussions (p ≤ .027). The results indicate that educational workshops can assist in improving multidisciplinary staff's knowledge about a palliative approach to care and comfort in carrying out advance care planning discussions with residents, family care partners, and among long-term care staff.

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BACKGROUND: Residents living in long-term care homes (LTCH) have complex care needs, multiple chronic conditions, increasing frailty and cognitive impairment. A palliative approach that incorporates advance care planning (ACP) should be integrated with chronic disease management, yet it is not a norm in most LTCHs. Despite its growing need, there remains a lack of staff engagement in the ACP process. OBJECTIVES: The aim of this study was to explore the perceptions and experiences of interdisciplinary staff related to the practice of ACP in LTCHs. METHODS: This study is part of a larger Canadian project, iCAN ACP, that aims to increase uptake, and access to ACP for older Canadians living with frailty. An exploratory qualitative design using an interpretive descriptive approach was employed utilizing focus groups and semi-structured interviews with staff from four LTCHs in Ontario, Canada. FINDINGS: There were 98 participants, including nurses (n = 36), physicians (n = 4), personal support workers (n = 34), support staff (n = 23), and a public guardian (n = 1). Three common themes and nine subthemes were derived: a) ongoing nature of ACP; b) complexities around ACP conversations; and c) aspirations for ACP becoming a standard of care in LTCHs. DISCUSSION: The findings of this study provide important contributions to our understanding of the complexities surrounding ACP implementation as a standard of practice in LTCHs. One of the critical findings relates to a lack of ACP conversations prior to admission in the LTCHs, by which time many residents may have already lost cognitive abilities to engage in these discussions. The hierarchical nature of LTCH staffing also serves as a barrier to the interdisciplinary collaboration required for a successful implementation of ACP initiatives. Participants within our study expressed support for ACP communication and the need for open lines of formal and informal interdisciplinary communication. There is a need for revitalizing care in LTCHs through interdisciplinary care practices, clarification of role descriptions, optimized staffing, capacity building of each category of staff and commitment from the LTCH leadership for such care. CONCLUSION: The findings build on a growing body of research illustrating the need to improve staff engagement in ACP communication in LTCHs.

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CONTEXT: Interprofessional collaboration is needed in palliative care and many other areas in health care. Pallium Canada's two-day interprofessional Learning Essential Approaches to Palliative care Core courses aim to equip primary care providers from different professions with core palliative care skills. OBJECTIVES: Explore the learning experience of learners from different professions who participated in Learning Essential Approaches to Palliative care Core courses from April 2015 to March 2017. METHODS: This mixed methods study was designed as a secondary analysis of existing data. Learners had completed a standardized course evaluation survey online immediately post-course. The survey explored the learning experience across several domains and consisted of seven closed ended (Likert Scales; 1 = "Total Disagree", 5 = "Totally Agree") and three open-ended questions. Quantitative data were analyzed using descriptive statistics and Kruskal-Wallis non-parametric test tests, and qualitative data underwent thematic analysis. RESULTS: During the study period, 244 courses were delivered; 3045 of 4636 participants responded (response rate 66%); physicians (662), nurses (1973), pharmacists (74), social workers (80), and other professions (256). Overall, a large majority of learners (96%) selected "Totally Agree" or "Agree" for the statement "the course was relevant to my practice". A significant difference was noted across profession groups; X2 (4) = 138; p < 0.001. Post-hoc analysis found the differences to exist between physicians and pharmacists (X2 = -4.75; p < 0.001), and physicians and social workers (X2 = -6.63; p < 0.001). No significant differences were found between physicians and nurses (X2 = 1.31; p = 1.00), and pharmacists and social workers (X2 = -1.25; p = 1.00). Similar results were noted for five of the other statements. CONCLUSION: Learners from across profession groups reported this interprofessional course highly across several learning experience parameters, including relevancy for their respective professions. Ongoing curriculum design is needed to fully accommodate the specific learning needs of some of the professions.

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End-of-life support and the implementation of a palliative approach require specific skills deployed in multidisciplinary teams. The same is true for professionals in the disability sector who accompany the life projects of people living in specialized facilities. This article proposes, based on a clinical situation at the end of life, a reflection on the acculturation of practices between the health, social and medico-social fields in favor of better end-of-life support for people with disabilities.

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A palliative approach to care aims to meet the needs of patients and caregivers throughout a chronic disease trajectory and can be delivered by non-palliative specialists. There is an important gap in understanding the perspectives and experiences of primary care providers on an integrated palliative approach in dementia care and the impact of existing programs and models to this end. To address these, we undertook a scoping review. We searched five databases; and used descriptive numerical summary and narrative synthesizing approaches for data analysis. We found that: (1) difficulty with prognostication and a lack of interdisciplinary and intersectoral collaboration are obstacles to using a palliative approach in primary care; and (2) a palliative approach results in statistically and clinically significant impacts on community-dwelling individuals, specifically those with later stages of dementia. There is a need for high-quality research studies examining the integrated palliative approach models and initiation of these models sooner in the care trajectory for persons living with mild and moderate stages of dementia in the community.

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INTRODUCTION: Advance care planning can improve the quality of life for residents in long-term care homes and reduce stress for families. However, care home staff and families often lack knowledge about advance care planning, making it especially difficult for residents with dementia to communicate their care plan wishes. A Conversation Starter Kit may increase advance care planning awareness among staff and families. OBJECTIVES: This study evaluated an advance care planning intervention, the Conversation Starter Kit booklet, for use in long term care homes. METHODS: Data were collected at three long-term care homes in southern Ontario. We collected data from 55 residents who were able to make decisions on their own paired with 11 family members of these residents. We also collected data from 24 family members of residents who were unable to make decisions on their own. This study used a quasi-experimental, one group pre/post design. Quantitative surveys were administered before and after a three-month advance care planning intervention. An additional structured interview was completed at the end of the intervention period, which included both closed and open-ended questions to assess perceptions about the booklet's use or non-use. RESULTS: Residents reported more engagement in advance care planning after completing the Conversation Starter Kit booklet, particularly related to asking questions to health care providers about health care decisions. Family members reported feeling very certain that they would be able to make decisions on behalf of the resident but felt less certain after completing the booklet, implying the booklet raised their awareness of the types of decisions they might need to make, hopefully prompting them to be more prepared for decisions in the future. CONCLUSIONS: An advance care planning intervention - The Conversation Starter Kit booklet - appears acceptable and easy to use for residents and family members/friends in long-term care and can improve resident engagement in advance care planning. Although using the booklet may decrease efficacy for decision making among family members of long-term care residents, it may highlight the importance of more actionable engagement in advance care planning among residents, their families/friends, and staff.

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INTRODUCTION: There is an inconsistent provision of palliative and end-of-life (palliative) care across Australia, particularly in regional, rural and remote areas. Systematic solutions can help to address identified gaps and improve access to and quality of care and support for patients, their families and carers at the end of life. The Far West New South Wales (NSW) Palliative and End of Life Model of Care is a systematic solution for a rural and remote palliative approach to care. The model enables a consistent and contextually adaptable, patient-focused palliative approach to care so that everyone receives the care they need from appropriately skilled and informed clinicians, in a timely manner, and as close to home as possible. METHODS: A narrative report used literature and internal documents as well as the perspective and experience of key informants involved in establishing the Far West NSW Palliative and End of Life Model of Care. This narrative report aims to describe the design, development and function of the model, and to identify the essential elements to implement or maintain the model elsewhere. RESULTS: The model was developed by the Specialist Palliative Care Service in the remotely situated Far West Local Health District of NSW. The Far West NSW Palliative and End of Life Model of Care was designed to guide a palliative approach to care in the last year of life, through death and into bereavement, regardless of age, diagnosis, culture, location or provider. The model functionally provides the scaffolding for locally and contextually relevant components of a quality palliative approach to care in consideration of a person's wishes. There are three essential elements to the development, maintenance and further implementation of the model and a palliative approach elsewhere. CONCLUSION: Until recently, the model relied on paper-based documents and resources; it is now available online. It has the potential to enable a consistent, yet contextually adaptable, patient-focused palliative approach to care.

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COVID-19 pandemic has resulted in a significant increase in deaths in long-term care homes (LTCH). People with dementia living in LTCHs represent one of the most frail and marginalized populations in Canada. The surge of COVID-19 cases in LTCHs and rationing of health-care resources during the pandemic have amplified the pre-existing need for improvements in palliative and end-of-life care in LTCHs. This position statement, created by a task force commissioned by the Alzheimer Society of Canada, provides recommendations for a multipronged coordinated approach to improving palliative and end-of-life care of people with dementia living in LTCHs during the COVID-19 pandemic and beyond.

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Accompanying a person at the end of life at home requires skills to alleviate symptoms and the availability to take care of the person and his or her loved ones. Interdisciplinary teamwork helps to give meaning to the care project and to cross the views on complex issues.

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Studies have identified integrated interdisciplinary care as a hallmark of effective palliative care. Although models attempt to show how integration may function, there is little literature available that practically explores how integration is fostered and maintained. In this study we asked palliative care clinicians across Canada to comment on how services are integrated across the healthcare system. This is an analysis of qualitative data from a larger study, wherein clinicians provided written responses regarding their experiences. Content analysis was used to identify response categories. Clinicians (n = 14) included physicians, a nurse and a social worker from six provinces. They identified the benefits of formalized relationships and collaboration pathways with other services to streamline referral and consultation. Clinicians perceived a need for better training of residents and primary care physicians in the community and more acceptance, shared understanding, and referrals. Clinicians also described integrating well with oncology departments. Lastly, clinicians considered integration a complex process with departmental, provincial, and national involvement. The needs and strengths identified by the clinicians mirror the qualities of successfully integrated palliative care programs globally and highlight specific areas in policy, education, practice, and research that could benefit those in Canada.

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The covid-19 epidemic and the resulting lockdown measures have undoubtedly led people who are ill, as well as those at risk of becoming ill, to contemplate the notions of risk, uncertainty and death. What effects has this confrontation with the question of death had and what impact will it continue to have on the palliative care approach and the decisions to withhold and withdraw treatment in certain circumstances?

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Patients with cancer are more at risk of quickly developing lethal forms of covid-19. Hospitals have therefore had to organise themselves to continue to receive patients while respecting the health measures. It was necessary to think about the best way of maintaining visits, as well as a means of adapting a specific space for palliative care and team thinking for patients cared for in identified palliative care beds.

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BACKGROUND: Implementing community-based innovations for older adults with serious illness, who are appropriate for a palliative approach to care, requires developing partnerships between health and community. Nav-CARE is an evidence-based innovation wherein trained volunteer navigators advocate, facilitate community connections, coordinate access to resources, and promote active engagement of older adults within their communities. Acknowledging the importance of partnerships between organizations, the aim of our study was to use the Consolidated Framework for Implementation Research (CFIR) to explore organizational (Inner Setting) and community or health system level (Outer Setting) barriers and facilitators to Nav-CARE implementation. METHODS: Guided by CFIR, qualitative individual and group interviews were conducted to examine the implementation of Nav-CARE in a Canadian community. Participants were individuals who delivered or managed Nav-CARE research, and stakeholders who provided services in the community. The Framework Method was used to analyse the data. Particular attention was paid to the host organization's external network and community context. RESULTS: Implementation was affected by several inter-related CFIR domains, making it difficult to meaningfully separate key findings by only inner and outer settings. Thus, findings were organized into themes informed by CFIR, that cut across other domains and incorporated inductive findings: intraorganizational perceptions of Nav-CARE; public and healthcare professionals' perceptions of palliative care; interorganizational partnerships and relationships; community and national-level factors that should have facilitated Nav-CARE implementation; and suggested changes to Nav-CARE. Themes demonstrated barriers to implementing Nav-CARE, such as poor organizational readiness for implementation, and public and health provider perceptions palliative care was synonymous with fast-approaching death. CONCLUSIONS: Implementation science frameworks and theories commonly focus on assessing implementation of innovations within facilities and changing behaviours of individuals within that organizational structure. Implementation frameworks need to be adapted to better assess Outer Setting factors that affect implementation of community-based programs. Although applying the CFIR helped uncover critical elements in the Inner and Outer Settings that affected implementation of Nav-CARE. Our study suggests that the CFIR could expand the Outer Setting to acknowledge and assess organizational structures and beliefs of individuals within organizations external to the host organization who impact successful implementation of community-based innovations.

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BACKGROUND AND PURPOSE: A palliative approach involves adapting and integrating palliative care knowledge and expertise earlier on and across sectors of care for people who have life-limiting chronic conditions. This study explored the extent to which nurses' and care aides' self-perceived palliative care competence may explain variation in the application of a palliative approach across nursing care settings that do not specialize in palliative care. A secondary objective was to psychometrically evaluate an instrument for measuring self-perceived palliative care competence.Methods and procedures: Data were collected via a cross-sectional survey (N = 1468) of registered nurses, licensed practical nurses, and care aides at 114 randomly selected hospital-based medical units, home care offices, and residential care facilities. The questionnaire included the Palliative Care Nursing Self-Competence Scale. Multilevel logistic regression and multigroup confirmatory factor analyses were conducted. RESULTS: In addition to self-perceived competence, factors associated with a palliative approach include identification of patients who have life-limiting conditions and who would benefit from a palliative approach, and work environment. The psychometric analyses of the Palliative Care Nursing Self-Competence Scale confirmed a 10-dimensional structure, strong internal consistency reliability, and measurement equivalence.Discussion and conclusion: This study provides information for future development and research on interventions for integrating a palliative approach.

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BACKGROUND: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed to help encourage meaningful end of life discussions and planning. METHODS: The study employs a mixed method design in four LTC homes across Southern Ontario. Data were collected from residents and families of the LTC homes through chart reviews, interviews, and focus groups. Interviews with family who attended a Palliative Care Conference included both closed-ended and open-ended questions. RESULTS: In total, 39 residents/families agreed to participate in the study. Positive intervention outcomes included a reduction in the proportion of emergency department use at end of life and hospital deaths for those participating in SPA-LTC, improved support for families, and increased family involvement in the care of residents. For families who attended a Palliative Care Conference, both quantitative and qualitative findings revealed that families benefited from attending them. Residents stated that they appreciated learning about a palliative approach to care and being informed about their current status. CONCLUSIONS: The benefits of SPA-LTC for residents and families justify its continued use within LTC. Study results also suggest that certain enhancements of the program could further promote future integration of best practices within a palliative approach to care within the LTC context. However, the generalizability of these results across LTC homes in different regions and countries is limited given the small sample size.

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