The Lived Palliative Care Experiences of Community-Dwelling Older Adults with Dementia in South Western Ontario

Palliative care is often suggested for individuals with dementia, yet there remains great uncertainty surrounding best delivery of care to individuals wishing to die at home. The aim of this phenomenological study was to understand the experiences of both individuals with dementia who receive palliative care in the community, and their informal family caregivers. Hermeneutic thematic analysis of semi-structured interviews from ten participant dyads revealed key themes. The themes for older adults with dementia were: belonging at home and acceptance of terminal illness; the themes for informal caregivers were: impact of dementia, double strain and home as a source of control over care; and the themes across dyads were: honouring wishes, fear of hospitalization and uncertainty. This study provides a better understanding of how older adults and their informal care providers experience palliative care while also managing dementia. Implications for community-based palliative care practice in South-Western Ontario are discussed

Factors Impacting Primary Care Engagement in a New Approach to Integrating Care in Ontario, Canada.

INTRODUCTION: In 2019, Ontario\u27s Ministry of Health (the Ministry) introduced Ontario Health Teams (OHTs) to provide population-based integrated healthcare. Primary care was foundational to this approach. We sought to identify factors that impacted primary care engagement during OHT formation from different perspectives. METHODS: Interviews with 111 participants (administrators n = 80; primary care providers n = 17; patient family advisors = 14) from 11 OHTs were conducted following a semi-structured guide. Interviews were transcribed, coded, and thematically analyzed. RESULTS: Participants felt that primary care engagement was an ongoing, continuous cycle. Four themes were identified: 1) \u27A low rules environment\u27: limited direction from the Ministry (system-level), 2) \u27They\u27re at different starting points\u27: impact of local context (initiative-level); 3) \u27We want primary care to be actively involved\u27: engagement efforts made by OHTs (initiative-level); 4) \u27Waiting to hear a little bit more\u27: primary care concerns about the OHT approach (sector-level). Thirteen factors impacting primary care engagement were identified across the four themes. DISCUSSION AND CONCLUSION: The 13 factors influencing primary care engagement were interconnected and operated at health system, integrated care initiative, and sector levels. Future research should focus on integrated care initiatives as they mature, to address potential gaps in the involvement of primary care physicians

Twelve principles to support caregiver engagement in health care systems and health research

Family and friend caregivers (i.e., unpaid carers) play a critical role in meeting the needs of people across various ages and illness circumstances. Caregiver experiences and expertise, which are currently overlooked, should be considered in practice (such as designing and evaluating services) and when designing and conducting research. In order to improve the quality of health care we need to understand how best to meaningfully engage caregivers in research, policy and program development to fill this important gap. Our study aimed to determine principles to support caregiver engagement in practice and research. A pan Canadian meeting brought together 48 stakeholders from research, policy and practice and lived experience (caregivers) to share perspectives on caregiver engagement and co-design. Several presentations from each stakeholder group were shared, followed by discussion and report back sessions. Extensive notes were taken and members of the research team synthesized the findings into categories and presented them back to participants for verification. 12 core principles to support caregiver engagement in practice and research were identified and validated by attendees: use policy levers and incentives, make blunt structural changes, face fears, recognize caregivers and increase opportunities to engage, define what quality means, be mindful of whose experience is being represented, address language and power, engage early, clarify roles and expectations, listen and act on what you hear, measure, and create a community of learning. These principles provide a foundation to guide curriculum development, core competency training, future research and quality improvement activities in health care settings

Exploring unmet needs and preferences of young adult stroke patients for post-stroke care through PROMs and gender differences

BackgroundStroke incidence among young adults of working age (under 65 years of age) has significantly increased in the past decade, with major individual, social, and economic implications. There is a paucity of research exploring the needs of this patient population. This study assessed: (1) young adult stroke patients' physical, psychological, and occupational functioning and health-related quality of life (HRQoL); and (2) post-stroke care preferences using patient-reported outcome measures (PROMs), with attention to gender differences.MethodsA cross-sectional pilot study was conducted. Sociodemographic and clinical characteristics were collected through chart review and data on occupational function, physical, psychological, and social wellbeing >90 days post-stroke through a self-reported survey. Descriptive statistics, gender-based, and regression analyses were conducted.ResultsThe sample included 85 participants. Participants reported impairments in both, occupational functioning, with 58.7% not returned to work (RTW), and HRQoL, specifically with social activities (37%), anxiety (34%), and cognitive function (34%). Women had significantly (p < 0.05) worse physical symptoms (sleep disturbance and fatigue), emotional health (depression, stigma, emotional dyscontrol) scores, and sense of self-identify post-stroke. Over 70% of participants preferred in-person post-stroke care led by health care providers and felt they would have benefited from receiving information on physical health (71.4%), emotional and psychological health (56.0%), RTW (38.1%), and self-identity (26.2%) post-stroke. Women preferred cognitive behavioral therapy (p = 0.018) and mindfulness-based stress reduction therapy (p = 0.016), while men preferred pharmacotherapy (p = 0.02) for psychological symptoms.ConclusionThis is the first study to report impaired HRQoL, psychological and occupational functioning using PROMs, with significant gender differences and preferences for post-stroke care delivery among young adult stroke patients at >90 days after stroke. The findings highlight the importance of needs, gender, and age-specific post-stroke education and interventions

Development of the Preferred Components for Co-Design in Research Guideline and Checklist: Protocol for a Scoping Review and a Modified Delphi Process

Background: There is increasing evidence that co-design can lead to more engaging, acceptable, relevant, feasible, and even effective interventions. However, no guidance is provided on the specific designs and associated methods or methodologies involved in the process. We propose the development of the Preferred Components for Co-design in Research (PRECISE) guideline to enhance the consistency, transparency, and quality of reporting co-design studies used to develop complex health interventions. Objective: The aim is to develop the first iteration of the PRECISE guideline. The purpose of the PRECISE guideline is to improve the consistency, transparency, and quality of reporting on studies that use co-design to develop complex health interventions. Methods: The aim will be achieved by addressing the following objectives: to review and synthesize the literature on the models, theories, and frameworks used in the co-design of complex health interventions to identify their common elements (components, values or principles, associated methods and methodologies, and outcomes); and by using the results of the scoping review, prioritize the co-design components, values or principles, associated methods and methodologies, and outcomes to be included in the PRECISE guideline. Results: The project has been funded by the Canadian Institutes of Health Research. Conclusions: The collective results of this project will lead to a ready-to-implement PRECISE guideline that outlines a minimum set of items to include when reporting the co-design of complex health interventions. The PRECISE guideline will improve the consistency, transparency, and quality of reports of studies. Additionally, it will include guidance on how to enact or enable the values or principles of co-design for meaningful and collaborative solutions (interventions). PRECISE might also be used by peer reviewers and editors to improve the review of manuscripts involving co-design. Ultimately, the PRECISE guideline will facilitate more efficient use of new results about complex health intervention development and bring better returns on research investments