Isabelle Vedel

Background: International quality of care indicators provide a common framework for interoperability among different health care systems. We aimed to demonstrate the challenges and opportunities with adapting such quality indicators through the case of adapting the International Consortium for Health Outcomes Measurement (ICHOM) set of patient-centered outcome measures for older persons to the context of Canada. Methods: In this descriptive case study, we purposefully recruited diverse stakeholders. Adapting a nominal group technique, we conducted group discussions to identify additional aspects deemed important for the context and needed to be added to the ICHOM. Transcripts were thematically analyzed to describe challenges and opportunities with adapting the ICHOM. Results: Four older persons, seven clinicians, five health managers, and four decision-makers participated. Four emerging themes indicated that the ICHOM set for older persons was: (i) focusing on the negative aspects of care, suggesting an opportunity to have a positive perspective and strength-based approach; (ii) omitting equity in care delivery, which should be across all domains; (iii) disease-centered while a holistic approach was preferable; and (iv) primarily descriptive although it is key to generating action plans. Ageing in place—helping older persons remain in the communities through integrated care—was viewed as the optimal outcome. Conclusion: International quality of care indicators are excellent starting points, but care must be taken to adapt them for use in local contexts. Social norms, relationships between users and health care providers, trust in health and social care systems, and contextual values are important factors to situate the quality indicators in an action-oriented context.

Background: Persons with dementia living in the community are vulnerable to service disruptions as they rely on a mix of outpatient care from different types of physicians. To demonstrate how outpatient physician visits evolved among persons with dementia during a health crisis compared to the prior year. Methods: Using administrative databases, two retrospective cohorts (2019/pre-COVID-19 pandemic; 2020/pandemic) of community-dwelling persons with dementia aged 65+ were identified within three Canadian provinces (Alberta, Ontario, and Quebec). We measured the rates of visits (total/virtual/in-person) to family physicians, cognitive specialists (neurologists, geriatricians, and psychiatrists), and other specialists. Provincial incident rate ratios (IRR) and 95% confidence intervals (CIs) were calculated by comparing three pandemic periods (first wave; interim period; second wave) to the corresponding pre-pandemic periods (reference) and subsequently pooled using a meta-analysis to obtain overall estimates. Results: Pre-pandemic (n = 160 288) and pandemic (n = 166 392) cohorts had similar characteristics. Although significant increases in family physician visits within provinces were observed during certain periods, there was no significant change in overall estimates compared to pre-pandemic levels. Overall cognitive (IRR 0.85, CI 0.80–0.90) and other specialist (IRR 0.71, 0.56–0.90) visits were significantly lower in the first wave compared to pre-pandemic period. There was a significant increase in virtual visits and a significant decline in in-person visits across all physician types throughout the pandemic periods. Conclusion: Family physicians are the cornerstone of sustaining dementia care during health crises such as the COVID-19 pandemic, in part due to virtual care. Future research may investigate long-term outcomes of abrupt disruption in specialist and other community care.

The global aged population is expected to reach 2.1 billion by 2050 and ∼40% of them will live in rural areas of low- and middle-income countries (LMICs). This systematic review aims to synthesize the qualitative literature on rural older adults’ experiences of health-seeking in LMICs as well as explore the factors that influence their experiences during their health-seeking journeys. We searched Embase, MEDLINE, PsycINFO, and CINAHL to identify studies published from 1 January 2002 to 31 December 2024 (PROSPERO registration ID: Blinded For Review). We used a thematic synthesis approach to analyse included studies. Among the 19 studies with 28 articles and 484 participants included, 16 were rated as high quality, 9 as moderate quality, and 3 as weak quality. We identified four primary analytic domains associated with their experiences in health-seeking journeys: (i) individual—depicting the inner world of rural older adults; (ii) interpersonal—navigating the rural social network; (iii) organizational—navigating the rural health care systems, and; (iv) community and macrosystems—economy, society, and public policy in rural areas. Rural older adults in LMICs have experienced unique and multi-level challenges in seeking care. To overcome these challenges, rural older adults demonstrated resilience and creativity (e.g. utilizing informal institutions), to navigate their health-seeking journey. Future research should aim to better understand the resilience and agency in local older adults’ health-seeking experiences and provide constructive solutions to overcome identified barriers to care.

Introduction Informal caregivers play a vital role in caring for individuals who choose to spend the end of their life at home. However, this caregiving role often imposes considerable physical, emotional, social and financial burdens that can negatively impact caregivers’ quality of life. A comprehensive understanding of the breadth of interventions designed to support caregivers of individuals receiving home-based palliative and end-of-life care is essential, along with insights into how these interventions are perceived by those who have received them. The objective of this review is to synthesise existing evidence on the effectiveness and appropriateness of interventions that support informal caregivers of patients receiving home-based palliative care in order to address the caregivers’ needs and improve their quality of life. Additionally, this review aims to explore the acceptability and perceived benefits of these interventions from the perspectives of informal caregivers who have received them. Methods and analysis A comprehensive search will be performed in the following databases: MEDLINE (PubMed), CINAHL, PsycINFO, Web of Science, Scopus, Cairn.info, EMBASE and the Cochrane Central Register of Controlled Trials (CENTRAL). This review will include studies that focus on adult informal caregivers of adult patients with serious life-threatening illnesses receiving home-based palliative care. Interventional studies that employed quantitative, qualitative and mixed-methods approaches will be considered. Quantitative studies will include randomised controlled trials (RCTs) and experimental and quasi-experimental designs. Qualitative studies will encompass research that explores informal caregivers’ experiences with the interventions, perceived benefits and barriers and enablers influencing intervention effectiveness. Mixed-methods studies using convergent, embedded or sequential designs will also be included. The search will include studies published in English or French, with no restrictions on the publication period. Study selection, critical appraisal and data extraction will be conducted independently by two reviewers to ensure methodological rigour. This review will adhere to the Joanna Briggs Institute guidelines for mixed-methods systematic reviews, using a convergent segregated approach. Findings will be reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines. Ethics and dissemination Ethical review is not required for this study, as it is a literature review that does not involve the collection of primary data. The findings of this review will be disseminated to the scientific community through conference presentations and peer-reviewed publications. Additionally, lay summaries will be prepared and shared with the general public and relevant stakeholders. Trial Registration Number PROSPERO, registration number CRD420251006612.

BACKGROUND: Family values significantly influence people’s attitudes and practices in caring for older people, but measuring family values can be challenging. This study aims to test the reliability, validity, and factor structure of the Family Values Scale in a large, nationally representative, community-dwelling sample of older Chinese adults. METHODS: 11 418 Chinese adults aged 60 years and older (mean age: 71.5 years; 50.2% female) were recruited and completed the Family Values Scale. We conducted exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) to test the validity and factor structure of the scale in this large, nationally representative dataset. Cronbach’s α and other related indices were used to measure the internal consistency. RESULTS: After removing item 1 and item 5 from the original scale, the new 6-item scale demonstrated good internal consistency (Cronbach’s α: 0.80, Guttman’s λ 6: 0.78, β coefficient: 0.75, and ω coefficient: 0.80). The EFA yielded a one-factor structure of the scale. The CFA results further confirmed the one-factor structure (CFI = 0.98; TLI = 0.96; RMSEA = 0.06 [95% CI: 0.05–0.07]) is a good fit for the dataset. The factor loadings of each item are within the expected range (>0.40). CONCLUSION: The 6-item Family Values Scale has good reliability and validity in capturing family values among older Chinese adults. The unidimensional factor scale structure showed adequate goodness of fit and reflected contemporary Chinese family values. This new scale can be used as a validated measure of family values for future research among older Chinese populations.

Background: Depression, characterized by persistent sadness and loss of interest in daily activities, greatly reduces quality of life. Early detection is vital for effective treatment and intervention. While many studies use wearable devices to classify depression based on physical activity, these often rely on intrusive methods. Additionally, most depression classification studies involve large participant groups and use single-stage classifiers without explainability. Objective: This study aims to assess the feasibility of classifying depression using nonintrusive Wi-Fi–based motion sensor data using a novel machine learning model on a limited number of participants. We also conduct an explainability analysis to interpret the model’s predictions and identify key features associated with depression classification. Methods: In this study, we recruited adults aged 65 years and older through web-based and in-person methods, supported by a McGill University health care facility directory. Participants provided consent, and we collected 6 months of activity and sleep data via nonintrusive Wi-Fi–based sensors, along with Edmonton Frailty Scale and Geriatric Depression Scale data. For depression classification, we proposed a HOPE (Home-Based Older Adults’ Depression Prediction) machine learning model with feature selection, dimensionality reduction, and classification stages, evaluating various model combinations using accuracy, sensitivity, precision, and F1-score. Shapely addictive explanations and local interpretable model-agnostic explanations were used to explain the model’s predictions. Results: A total of 6 participants were enrolled in this study; however, 2 participants withdrew later due to internet connectivity issues. Among the 4 remaining participants, 3 participants were classified as not having depression, while 1 participant was identified as having depression. The most accurate classification model, which combined sequential forward selection for feature selection, principal component analysis for dimensionality reduction, and a decision tree for classification, achieved an accuracy of 87.5%, sensitivity of 90%, and precision of 88.3%, effectively distinguishing individuals with and those without depression. The explainability analysis revealed that the most influential features in depression classification, in order of importance, were “average sleep duration,” “total number of sleep interruptions,” “percentage of nights with sleep interruptions,” “average duration of sleep interruptions,” and “Edmonton Frailty Scale.” Conclusions: The findings from this preliminary study demonstrate the feasibility of using Wi-Fi–based motion sensors for depression classification and highlight the effectiveness of our proposed HOPE machine learning model, even with a small sample size. These results suggest the potential for further research with a larger cohort for more comprehensive validation. Additionally, the nonintrusive data collection method and model architecture proposed in this study offer promising applications in remote health monitoring, particularly for older adults who may face challenges in using wearable devices. Furthermore, the importance of sleep patterns identified in our explainability analysis aligns with findings from previous research, emphasizing the need for more in-depth studies on the role of sleep in mental health, as suggested in the explainable machine learning study.

Existing frameworks of older persons’ experiences in health and social care systems are usually based on single stakeholder perspectives and focused on limited aspects that are independent from one another. This study aimed to describe such experiences from the perspective of diverse stakeholders and develop a comprehensive experience-based framework for actionable priorities to enhance Canada’s health and social care system. We adapted a nominal group technique with a qualitative approach. We formed four groups of stakeholders (4 older persons, 7 clinicians, 5 managers, 4 decision-makers) in the province of Quebec. First, participants individually completed a questionnaire to rank the six domains of an international set of metrics of quality of care for older persons in terms of their importance. Then, we conducted a remote discussion with each stakeholder group, obtained consensus on the priority domains, and explored personal/professional experiences explaining prioritization processes and what changes are needed. An inductive-deductive thematic analysis was conducted to develop a framework for actionable health and social care priorities. The framework included six key categories revolving around a core category of ‘health equity’. (1) ‘Access to services and care’ focused on improved accessibility of healthcare navigators, primary and home care services, and end-of life care. (2) ‘Respect for older persons’ involved individuality and uniqueness, daily needs, advocacy in defence of vulnerability, and decision-making valuing care preferences. (3) ‘Involvement of family and friends’ encompassed formal recognition, responsibilities, and trajectories associated with caregiving. (4) ‘Communication and education’ consisted of adaptive communication between older persons, caregivers, and professionals and societal-level education and awareness-raising. (5) ‘Coordination and integration of care’ comprised health and social services organization, cross-sectoral approaches, and interdisciplinary collaboration. (6) ‘Responsiveness to evolving needs’ of older persons involved timely response to health transitions and promoting holistic approaches. This study illustrates the complex challenges of caring for older persons. The framework suggests several areas for improvement in care practices and policies for older persons and caregivers. Proposed intervention targets include public healthcare system navigators, standardized goals of care practices respecting persons’ wishes, formal recognition of caregiver contributions, society-level education, cross-sectoral initiatives, and holistic approaches.

Persons living with dementia and their care partners encounter many challenges within the health and social care system, including lack of information, support, counselling, and access to community services, as well as significant staff turnover in home care services. The objective of this study was to work with multiple stakeholders to formulate relevant and feasible recommendations to improve care for persons living with dementia and their care partners in Quebec, Canada. We conducted deliberative dialogues in the context of a large mixed methods study on the care of persons living with dementia and care partners. First, we organized two deliberative dialogues with care partners to formulate recommendations informed by the quantitative and qualitative results of the large study. These recommendations were further discussed in a third deliberative dialogue focused on the prioritization of relevant and feasible recommendations by clinicians, health project managers, and decision-makers. We performed a thematic analysis of the data using a multi-level framework: structural, organizational, provider, and patient perspectives. Participants formulated 14 recommendations. Two structural-level recommendations included fighting ageism and ensuring the same access to services in the whole province. Three organizational-level recommendations involved improving interdisciplinarity collaboration, improving access and follow-up in primary care, and adapting emergency departments. Additionally, two organizational-level recommendations were specific to healthcare crisis management (such as the COVID-19 pandemic): ensuring both the regular communication and the flexibility of implemented rules. Four provider-level recommendations encompassed providing more training on dementia, offering more training on levels of care, reviewing the relationship-based approach in training programs, and revising and optimizing medications. There were three patient-level recommendations including strengthening partnerships with persons living with dementia and care partners, guaranteeing personalized services and care, and reinforcing support for care partners. The deliberative dialogues enabled us to formulate relevant recommendations based on research evidence, the lived experience of care partners, and the expertise of clinicians, health project managers and decision-makers. The results revealed several recommendations that will help mitigate the challenges faced by persons living with dementia and care partners in the health and social care system by informing policies and practices.