Counting what counts: assessing quality of life and its social determinants among nursing home residents with dementia.

BACKGROUND: Maximizing quality of life (QoL) is a major goal of care for people with dementia in nursing homes (NHs). Social determinants are critical for residents' QoL. However, similar to the United States and other countries, most Canadian NHs routinely monitor and publicly report quality of care, but not resident QoL and its social determinants. Therefore, we lack robust, quantitative studies evaluating the association of multiple intersecting social determinants with NH residents' QoL. The goal of this study is to address this critical knowledge gap. METHODS: We will recruit a random sample of 80 NHs from 5 Canadian provinces (Alberta, British Columbia, Manitoba, Nova Scotia, Ontario). We will stratify facilities by urban/rural location, for-profit/not-for-profit ownership, and size (above/below median number of beds among urban versus rural facilities in each province). In video-based structured interviews with care staff, we will complete QoL assessments for each of ~ 4,320 residents, using the DEMQOL-CH, a validated, feasible tool for this purpose. We will also assess resident's social determinants of QoL, using items from validated Canadian population surveys. Health and quality of care data will come from routinely collected Resident Assessment Instrument - Minimum Data Set 2.0 records. Knowledge users (health system decision makers, Alzheimer Societies, NH managers, care staff, people with dementia and their family/friend caregivers) have been involved in the design of this study, and we will partner with them throughout the study. We will share and discuss study findings with knowledge users in web-based summits with embedded focus groups. This will provide much needed data on knowledge users' interpretations, usefulness and intended use of data on NH residents' QoL and its health and social determinants. DISCUSSION: This large-scale, robust, quantitative study will address a major knowledge gap by assessing QoL and multiple intersecting social determinants of QoL among NH residents with dementia. We will also generate evidence on clusters of intersecting social determinants of QoL. This study will be a prerequisite for future studies to investigate in depth the mechanisms leading to QoL inequities in LTC, longitudinal studies to identify trajectories in QoL, and robust intervention studies aiming to reduce these inequities.

Intersectionality, health equity, and EDI: What's the difference for health researchers?

Many countries adopted comprehensive national initiatives to promote equity in higher education with the goal of transforming the culture of research. Major health research funders are supporting this work through calls for projects that focus on equity, resulting in a proliferation of theoretical frameworks including "intersectionality," "health equity," and variations of equity, diversity and inclusion, or EDI. This commentary is geared at individual principal investigators and health research teams who are developing research proposals and want to consider equity issues in their research, perhaps for the first time. We present histories and definitions of three commonly used frameworks: intersectionality, health equity, and EDI. In the context of health research, intersectionality is a methodology (a combination of epistemology and techniques) that can identify the relationships among individual identities and systems of oppression; however, it should also be used internally by research teams to reflect on the production of knowledge. Health equity is a societal goal that operationalizes the social determinants of health to document and address health disparities at the population level. EDI initiatives measure and track progress within organizations or teams and are best suited to inform the infrastructure and human resourcing "behind the scenes" of a project. We encourage researchers to consider these definitions and strive to tangibly move health research towards equity both in the topics we study and in the ways we do research.

Emergent Issues in Directly-Funded Care: Canadian Perspectives.

Direct Funding (DF) provides individuals with a budget to arrange their own home care instead of receiving publicly arranged services. DF programs have evolved in a number of countries since the 1970s. In Canada, while small-scale DF programs have existed since the early 1970s, the research on these programs remains limited. Responding to gaps identified by an umbrella review and using a health equity framework, this research extends the knowledge base on DF programs from a Canadian perspective through an environmental scan. The research asks: What are the features of DF programs across Canada? What are the emerging issues related to program design and policy development? The study employed a qualitative environmental scan design, gathering data through questionnaires and semi-structured interviews (n = 23). The findings include a summary table describing features of 20 programs and two interview themes: a lack of information on DF workers and concerns about the growing role of home care agencies. This study has the potential to contribute to long-term health equity monitoring research. The findings suggest that as DF expands in Canada, promoting hiring from personal networks may address inequities in rural access to home care services and improve social outcomes for linguistic, cultural, and sexual minorities. However, the findings underscore a need to monitor access to DF programs by people of lower-socioeconomic backgrounds in Canada and discourage policy design that requires independent self-management, which disadvantages people with compromised decision-making capacities.

Towards equitable representation in long-term residential care: widening the circle to ensure "essential voices" in research teams.

The COVID-19 pandemic exposed long-standing inequities in Canada's long-term residential care (LTRC) sector with life-threatening consequences. People from marginalized groups are overrepresented among those who live in, and work in LTRC facilities, yet their voices are generally silenced in LTRC research. Concerns about these silenced voices have sparked debate around ways to change LTRC policy to better address long-standing inequities and enhance the conditions that foster dignity for those who live and work in LTRC. Weaving an analysis of historical and cultural attitudes about LTRC, and promising strategies for engaging people with lived experience, we argue that the voices of people with lived experience of life and work (paid and unpaid) in LTRC are essential for ethically and effectively shifting long-standing inequities. Lessons from a 4-year, national, multi-disciplinary research study, known as the Seniors Adding Life to Years (SALTY) project, suggest that resident-determined quality of life can be prioritized by centring the perspectives of residents, their family/friends, direct care workers, volunteers, and people living with dementia in the research process. Accordingly, we highlight strategies to include these voices so that meaningful and impactful system change can be realized.

This article argues that long-term residential care facilities in Canada have a long history of perpetuating social inequalities, beginning with seventeenth century poor houses and almshouses, from which long-term residential care facilities evolved in North America. We highlight that those who currently reside in long-term residential care are more likely to be people with less social power­for example women, people living with dementia, and people with low-income. These residents are rarely included in research projects as co-designers of research, co-producers of knowledge, or experts on the realities of long-term residential care. We explore strategies for addressing these underrepresented voices and inequalities in research by highlighting promising examples of resident, family, and worker-engagement emerging from a pre-pandemic to early pandemic pan-Canadian research project on quality of life in long-term residential care. We argue that long-term residential care residents, their family/friend caregivers, people living with dementia, and direct care workers have voices that are essential in residential care design and research engagement strategies. By prioritizing these voices in research, we can better amplify their critical perspectives in broader policy and decision-making processes that guide meaningful and impactful system change.

Co-designing action-oriented mental health conversations between care providers and ageing Canadians in the community: a participatory mixed-methods study protocol.

INTRODUCTION: The mental health of ageing Canadians is a growing concern, particularly post-pandemic. Older adults face systemic ageism and mental health stigma as pervasive barriers to seeking needed mental health support, care and treatment within health and social care systems. These barriers are exacerbated when service providers focus on physical healthcare needs or lack the skills and confidence to talk about and/or address mental health during routine visits. This study aims to co-design and test an evidence-based approach to mental health conversations at the point-of-care in home and community settings with older adults, family and friend caregivers and health and social care providers that could facilitate help-seeking activities and care access. METHODS AND ANALYSIS: A participatory mixed-methods study design will be applied, guided by a Working Group of experts-by-experience (n=30). Phase 1 engages ageing Canadians in four online workshops (n=60) and a national survey (n=1000) to adapt an evidence-based visual model of mental health for use with older adults in home and community care. Phase 2 includes six co-design workshops with community providers (n=90) in rural and urban sites across three Canadian provinces to co-design tools, resources and processes for enabling the use of the adapted model as a conversation guide. Phase 3 involves pilot and feasibility testing the co-designed conversations with older adult clients of providers from Phase 2 (n=180). ETHICS AND DISSEMINATION: Phases 1 and 2 of this study have received ethics clearance at the University of Waterloo (ORE #44187), University of British Columbia (#H22-02306) and St. Francis Xavier University (#26075). While an overview of Phase 3 is included, details will rely on Phase 2 outcomes. Knowledge mobilisation activities will include peer-reviewed publications, conference presentations, webinars, newsletters, infographics and policy briefs. Interested audiences may include community organisations, policy and decision-makers and health and social care providers.

Balancing Flexibility and Administrative Burden: Experiences of Family Managers Using Directly Funded Home Care in Manitoba, Canada.

Directly funded (DF) home care provides funding to home care recipients to coordinate their own care and supports, and is available across all Canadian provinces. Current research on DF home care focuses on the experiences of adults with disabilities self-directing their own care, but less is known about the experiences of family members managing services for adults 55 years of age and older. This article presents findings from a qualitative analysis of 24 semi-structured interviews with older adults and caregivers using the DF program in Manitoba, Canada, focusing on family manager experiences. We identify three themes in the interview data: (1) DF home care enhances choice and flexibility for older people and their caregivers, (2) choice and flexibility reduce caregiver strain, and (3) agency services reduce administrative burden. We discuss the importance of care relationships and the role of family managers. We recommend that traditional home care systems learn from DF, and that increased administrative support would reduce caregiver strain.

Conceptualizing violence in nursing home policy: A citizenship perspective.

Violence is a pervasive, yet often hidden, issue within nursing homes, affecting residents, family members and care workers. Critical exploration of embedded understandings of violence within public policies can provide important insights into how violence is viewed and addressed in nursing home environments as well as the implications of violence for different groups and alternative ways of framing and addressing violence. To this end, this study explored how violence is conceptualized within 45 nursing home policy texts from two Canadian provinces - Manitoba and Nova Scotia. Using a critical policy analysis approach and a citizenship lens, we identified four dominant constructions of policy 'targets' associated with specific rights and conceptualizations of violence. Policy documents construct residents as either vulnerable and in need of protection or as challenging and requiring behavior management. Care workers are constructed as either clinical risk managers, responsible for mitigating violence, or as employees with rights and responsibilities. Overall, violence prevention policies governing nursing homes are fragmented and convey conflicting conceptualizations of violence, associated with divergent rights and responsibilities. Our findings highlight the need for comprehensive violence prevention policies that affirm the rights of nursing home residents and care workers alike.

Thinking Together, Working Apart: Leveraging a Community of Practice to Facilitate Productive and Meaningful Remote Collaboration.

Considering the coronavirus disease 2019 (COVID-19) pandemic, scholars were encouraged to cease collocated meetings. Many researchers have turned to remote collaboration to continue group-based projects. This paper focuses on the structure, processes, and outcomes that a group of physically distanced, embedded researchers used to collaborate across Canada to produce research outputs prior to the pandemic. The intent of this paper is to provide an overview of mechanisms that can facilitate meaningful and productive remote collaboration using online and digital technologies as a feasible and effective alternative mode of communication for research teams.

Team-Based Integrated Knowledge Translation for Enhancing Quality of Life in Long-term Care Settings: A Multi-method, Multi-sectoral Research Design.

Multi-sectoral, interdisciplinary health research is increasingly recognizing integrated knowledge translation (iKT) as essential. It is characterized by diverse research partnerships, and iterative knowledge engagement, translation processes and democratized knowledge production. This paper reviews the methodological complexity and decision-making of a large iKT project called Seniors - Adding Life to Years (SALTY), designed to generate evidence to improve late life in long-term care (LTC) settings across Canada. We discuss our approach to iKT by reviewing iterative processes of team development and knowledge engagement within the LTC sector. We conclude with a brief discussion of the important opportunities, challenges, and implications these processes have for LTC research, and the sector more broadly.

CIHR Health System Impact Fellows: Reflections on "Driving Change" Within the Health System.

Learning health systems necessitate interdependence between health and academic sectors and are critical to address the present and future needs of our health systems. This concept is being supported through the new Canadian Institutes of Health Research (CIHR) Health System Impact (HSI) Fellowship, through which postdoctoral fellows are situated within a health system-related organization to help propel evidence-informed organizational transformation and change. A voluntary working group of fellows from the inaugural cohort representing diversity in geography, host setting and personal background, collectively organized a panel at the 2018 Canadian Association for Health Services and Policy Research Conference with the purpose of describing this shared scholarship experience. Here, we present a summary of this panel reflecting on our experiential learning in a practice environment and its ability for impact.

Making Contributions and Defining Success: An eDelphi Study of the Inaugural Cohort of CIHR Health System Impact Fellows, Host Supervisors and Academic Supervisors.

CONTEXT: The Health System Impact (HSI) Fellowship, an innovative training program developed by the Canadian Institutes of Health Research's Institute of Health Services and Policy Research, provides PhD-trained health researchers with an embedded, experiential learning opportunity within a health system organization. METHODS/DESIGN: An electronic Delphi (eDelphi) study was conducted to: (1) identify the criteria used to define success in the program and (2) elucidate the main contributions fellows made to their organizations. Through an iterative, two-round eDelphi process, perspectives were elicited from three stakeholder groups in the inaugural cohort of the HSI Fellowship: HSI fellows, host supervisors and academic supervisors. DISCUSSION: A consensus was reached on many criteria of success for an embedded research fellowship and on several perceived contributions of the fellows to their host organization and academic institutions. This work begins to identify specific criteria for success in the fellowship that can be used to improve future iterations of the program.