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.

Barriers to cancer treatment for people experiencing socioeconomic disadvantage in high-income countries: a scoping review.

BACKGROUND: Despite advances in cancer research and treatment, the burden of cancer is not evenly distributed. People experiencing socioeconomic disadvantage have higher rates of cancer, later stage at diagnoses, and are dying of cancers that are preventable and screen-detectable. However, less is known about barriers to accessing cancer treatment. METHODS: We conducted a scoping review of studies examining barriers to accessing cancer treatment for populations experiencing socioeconomic disadvantage in high-income countries, searched across four biomedical databases. Studies published in English between 2008 and 2021 in high-income countries, as defined by the World Bank, and reporting on barriers to cancer treatment were included. RESULTS: A total of 20 studies were identified. Most (n = 16) reported data from the United States, and the remaining included publications were from Canada (n = 1), Ireland (n = 1), United Kingdom (n = 1), and a scoping review (n = 1). The majority of studies (n = 9) focused on barriers to breast cancer treatment. The most common barriers included: inadequate insurance and financial constraints (n = 16); unstable housing (n = 5); geographical distribution of services and transportation challenges (n = 4); limited resources for social care needs (n = 7); communication challenges (n = 9); system disintegration (n = 5); implicit bias (n = 4); advanced diagnosis and comorbidities (n = 8); psychosocial dimensions and contexts (n = 6); and limited social support networks (n = 3). The compounding effect of multiple barriers exacerbated poor access to cancer treatment, with relevance across many social locations. CONCLUSION: This review highlights barriers to cancer treatment across multiple levels, and underscores the importance of identifying patients at risk for socioeconomic disadvantage to improve access to treatment and cancer outcomes. Findings provide an understanding of barriers that can inform future, equity-oriented policy, practice, and service innovation.

Navigation programs to support community-dwelling individuals with life-limiting illness: determinants of implementation.

BACKGROUND: As the Canadian population ages and the prevalence of chronic illnesses increases, delivering high-quality care to individuals with advanced life limiting illnesses becomes more challenging. Community-based navigation programs are a promising approach to address these challenges, but little is known about how these programs are successfully implemented to meet the needs of this population. This study sought to identify the key determinants that contribute to the successful implementation of these programs within Canada. METHODS: A qualitative study was undertaken to understand the implementation of eleven innovative, community-based navigation programs that aim to address the needs of individuals with life-limiting illnesses as they approach the end of life. The Consolidated Framework for Implementation Research (CFIR) guided the study design. Key informants (n = 23) within these programs took part in semi-structured interviews where they were asked to discuss how these programs are implemented. Data were analyzed using techniques employed in qualitative description. RESULTS: We identified key determinants of successful implementation within each CFIR domain. In the outer setting domain, participants emphasized the importance of filling gaps in care to meet client needs, developing strong relationships with clients and community-based organizations, and navigating relationships with healthcare providers. At the inner setting level, leadership support, staff compatibility, and available resources were identified as important factors. In terms of intervention characteristics, the ability to adapt was cited as a facilitator, whereas costs were identified as a barrier. For the characteristics of individuals, participants described the importance of having staff whose values align with the program, and who have the experience and skills necessary to work with complex clients. Finally, having strong champions and evaluation processes were highlighted as important process-oriented determinants of successful implementation. CONCLUSION: This study provides valuable insights into the determinants of successful implementation of community-based navigation programs in Canada. Understanding these determinants can guide the future development and integration of navigation programs to successfully meet the needs of those with life-limiting illnesses.

"You can't die here": an exploration of the barriers to dying-in-place for structurally vulnerable populations in an urban centre in British Columbia, Canada.

BACKGROUND: One measure of quality in palliative care involves ensuring people approaching the end of life are able to receive care, and ultimately die, in the places they choose. Canadian palliative care policy directives stem from this tenet of autonomy, acknowledging that most people prefer to die at home, where they feel safe and comfortable. Limited research, however, considers the lack of 'choice' people positioned as structurally vulnerable (e.g., experiencing extreme poverty, homelessness, substance-use/criminalization, etc.) have in regard to places of care and death, with the option of dying-in-place most often denied. METHODS: Drawing from ethnographic and participatory action research data collected during two studies that took place from 2014 to 2019 in an urban centre in British Columbia, Canada, this analysis explores barriers preventing people who experience social and structural inequity the option to die-in-place. Participants include: (1) people positioned as structurally vulnerable on a palliative trajectory; (2) their informal support persons/family caregivers (e.g., street family); (3) community service providers (e.g., housing workers, medical professionals); and (4) key informants (e.g., managers, medical directors, executive directors). Data includes observational fieldnotes, focus group and interviews transcripts. Interpretive thematic analytic techniques were employed. RESULTS: Participants on a palliative trajectory lacked access to stable, affordable, or permanent housing, yet expressed their desire to stay 'in-place' at the end of life. Analysis reveals three main barriers impeding their 'choice' to remain in-place at the end of life: (1) Misaligned perceptions of risk and safety; (2) Challenges managing pain in the context of substance use, stigma, and discrimination; and (3) Gaps between protocols, policies, and procedures for health teams. CONCLUSIONS: Findings demonstrate how the rhetoric of 'choice' in regard to preferred place of death is ethically problematic because experienced inequities are produced and constrained by socio-structural forces that reach beyond individuals' control. Ultimately, our findings contribute suggestions for policy, programs and practice to enhance inclusiveness in palliative care. Re-defining 'home' within palliative care, enhancing supports, education, and training for community care workers, integrating palliative approaches to care into the everyday work of non-health care providers, and acknowledging, valuing, and building upon existing relations of care can help to overcome existing barriers to delivering palliative care in various settings and increase the opportunity for all to spend their end of life in the places that they prefer.

Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

Barriers to cancer treatment and care for people experiencing structural vulnerability: a secondary analysis of ethnographic data.

BACKGROUND: A key pillar of Canada's healthcare system is universal access, yet significant barriers to cancer services remain for people impacted by structural vulnerability (e.g., poverty, homelessness, racism). For this reason, cancer is diagnosed at a later stage, resulting in worse patient outcomes, a reduced quality of life, and at a higher cost to the healthcare system. Those who face significant barriers to access are under-represented in cancer control services Consequently, these inequities result in people dying from cancers that are highly treatable and preventable, however; little is known about their treatment and care course. The aim of this study was to explore barriers to accessing cancer treatment among people experiencing structural vulnerability within a Canadian context. METHODS: We conducted a secondary analysis of ethnographic data informed by critical theoretical perspectives of equity and social justice. The original research draws from 30 months of repeated interviews (n = 147) and 300 h of observational fieldwork with people experiencing health and social inequities at the end-of-life, their support persons, and service providers. RESULTS: Our analysis identified four themes presenting as 'modifiable' barriers to inequitable access to cancer treatment: (1) housing as a key determinant for cancer treatment (2) impact of lower health literacy (3) addressing social care needs is a pre-requisite for treatment (4) intersecting and compounding barriers reinforce exclusion from cancer care. These inter-related themes point to how people impacted by health and social inequities are at times 'dropped' out of the cancer system and therefore unable to access cancer treatment. CONCLUSION: Findings make visible the contextual and structural factors contributing to inequitable access to cancer treatment within a publically funded healthcare system. Identifying people who experience structural vulnerability, and approaches to delivering cancer services that are explicitly equity-oriented are urgently needed.

Health and healthcare equity within the Canadian cancer care sector: a rapid scoping review.

BACKGROUND: Despite a publicly-funded healthcare system, alarming cancer-related health and healthcare inequities persist in Canada. However, it remains unclear how equity is being understood and taken up within the Canadian cancer context. Our objective was to identify how health and healthcare equity are being discussed as goals or aims within the cancer care sector in Canada. METHODS: A rapid scoping review was conducted; five biomedical databases, 30 multidisciplinary websites, and Google were searched. We included English-language documents published between 2008 and 2021 that discussed health or healthcare equity in the Canadian cancer context. RESULTS: Of 3860 identified documents, 83 were included for full-text analysis. The prevalence of published and grey equity-oriented literature has increased over time (2008-2014 [n = 20]; 2015-2021 [n = 62]). Only 25% of documents (n = 21) included a definition of health equity. Concepts such as inequity, inequality and disparity were frequently used interchangeably, resulting in conceptual muddling. Only 43% of documents (n = 36) included an explicit health equity goal. Although a suite of actions were described across the cancer control continuum to address equity goals, most were framed as recommendations rather than direct interventions. CONCLUSION: Health and healthcare equity is a growing priority in the cancer care sector; however, conceptual clarity is needed to guide the development of robust equity goals, and the development of sustainable, measurable actions that redress inequities across the cancer control continuum. If we are to advance health and healthcare equity in the cancer care sector, a coordinated and integrated approach will be required to enact transformative and meaningful change.

"Once you open that door, it's a floodgate": Exploring work-related grief among community service workers providing care for structurally vulnerable populations at the end of life through participatory action research.

BACKGROUND: At the end of life, people experiencing structural vulnerability (e.g. homelessness, poverty, stigmatization) rely on community service workers to fill gaps in access to traditional palliative services. Although high levels of burnout are reported, little is known about these workers' experiences of grief. AIM: To explore community service workers' experiences of grief to identify ways of providing more tailored, meaningful, and equitable supports. DESIGN: A community-based participatory action research methodology, informed by equity perspectives, was employed. SETTING/PARTICIPANTS: In an urban center in western Canada, community service worker (primary) participants (n = 18) were engaged as members of an action team. A series of 18 action cycles took place, with secondary participants (n = 48) (e.g. palliative, social care, housing support, etc.) being recruited throughout the research process. Focus groups (n = 5) and evaluative interviews (n = 13) with participants were conducted. Structured observational field notes (n = 34) were collected during all team meetings and community interventions. Interpretive thematic analysis ensued through a collaborative and iterative process. RESULTS: During initial meetings, action team participants described experiences of compounding distress, grief, and multiple loss. Analysis showed workers are: (1) grieving as family, not just providers; (2) experiencing complex layers of compounded grief; and (3) are fearful to open the "floodgates" to grief. CONCLUSIONS: Findings contribute to our understanding on the inequitable distribution of grief across society. A collective and material response is needed, including witnessing, acknowledging and valuing the grief process; facilitating community wellness, collective grieving, and advocacy; and providing training and tools in a palliative approach to care.

How initial policy responses to COVID-19 contributed to shaping dying at home preferences and care provision: key informant perspectives from Canada.

OBJECTIVES: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. METHODS: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. RESULTS: Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. CONCLUSION: This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care.

How do navigation programs address the needs of those living in the community with advanced, life-limiting Illness? A realist evaluation of programs in Canada.

BACKGROUND: We sought to identify innovative navigation programs across Canadian jurisdictions that target their services to individuals affected by life-limiting illness and their families, and articulate the principal components of these programs that enable them to address the needs of their clients who are living in the community. METHODS: This realist evaluation used a two-phased approach. First, we conducted a horizon scan of innovative community-based navigation programs across Canadian jurisdictions to identify innovative community-based navigation programs that aim to address the needs of community-dwelling individuals affected by life-limiting illness. Second, we conducted semi-structured interviews with key informants from each of the selected programs. Informants included individuals responsible for managing and delivering the program and decision-makers with responsibility and/or oversight of the program. Analyses proceeded in an iterative manner, consistent with realist evaluation methods. This included iteratively developing and refining Context-Mechanism-Outcome (CMO) configurations, and developing the final program theory. RESULTS: Twenty-seven navigation programs were identified from the horizon scan. Using specific eligibility criteria, 11 programs were selected for subsequent interviews and in-depth examination. Twenty-three participants were interviewed from these programs, which operated in five Canadian provinces. The programs represented a mixture of community (non-profit or volunteer), research-initiated, and health system programs. The final program theory was articulated as: navigation programs can improve client outcomes if they have supported and empowered staff who have the time and flexibility to personalize care to the needs of their clients. CONCLUSIONS: The findings highlight key principles (contexts and mechanisms) that enable navigation programs to develop client relationships, personalize care to client needs, and improve client outcomes. These principles include staff (or volunteer) knowledge and experience to coordinate health and social services, having a point of contact after hours, and providing staff (and volunteers) time and flexibility to develop relationships and respond to individualized client needs. These findings may be used by healthcare organizations - outside of navigation programs - to work towards more person-centred care.

Increasing palliative care capacity in primary care: study protocol of a cluster randomized controlled trial of the CAPACITI training program.

BACKGROUND: Primary care providers play a critical role in providing early palliative care to their patients. Despite the availability of clinical education on best practices in palliative care, primary care providers often lack practical guidance to help them operationalize this approach in practice. CAPACITI is a virtual training program aimed at providing practical tips, strategies, and action plans to provide an early palliative approach to care. The entire program consists of 12 sessions (1 h each), divided evenly across three modules: (1) Identify and Assess; (2) Enhance Communication Skills; (3) Coordinate for Ongoing Care. We report the protocol for our planned evaluation of CAPACITI on its effectiveness in helping primary care providers increase their identification of patients requiring a palliative approach to care and to strengthen other core competencies. METHODS: A cluster randomized controlled trial evaluating two modes of CAPACITI program delivery: 1) self-directed learning, consisting of online access to program materials; and 2) facilitated learning, which also includes live webinars where the online materials are presented and discussed. The primary outcomes are 1) percent of patients identified as requiring palliative care (PC), 2) timing of first initiation of PC, and self-reported PC competency (EPCS tool). Secondary outcomes include self-reported confidence in PC, practice change, and team collaboration (AITCS-II tool), as well as qualitative interviews. Covariates that will be examined are readiness for change (ORCA tool), learning preference, and team size. Primary care teams representing interdisciplinary providers, including physicians, nurse practitioners, registered nurses, care coordinators, and allied health professionals will be recruited from across Canada. The completion of all three modules is expected to take participating teams a total of six months. DISCUSSION: CAPACITI is a national trial aimed at behavior change in primary care providers. This research will help inform future palliative care educational initiatives for generalist health care providers. Specifically, our findings will examine the effectiveness of the two models of education delivery and the participant experience associated with each modality. TRIAL REGISTRATION: ClinicalTrials.gov NCT05120154.

Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers.

PURPOSE: To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. METHODS: Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. RESULTS: Older adults and family caregivers (N = 12) wanted basic knowledge about what "QOL assessment" meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. CONCLUSION: Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults .

A codevelopment process to advance methods for the use of patient-reported outcome measures and patient-reported experience measures with people who are homeless and experience chronic illness.

INTRODUCTION: People who experience social disadvantage including homelessness suffer from numerous ill health effects when compared to the general public. Use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) enables collection of information from the point of view of the person receiving care. Involvement in research and health care decision-making, a process that can be facilitated by the use of PROMs and PREMs, is one way to promote equity in care. METHODS: This article reports on a codevelopment and consultation study investigating the use of PROMs and PREMs with people who experience homelessness and chronic illness. Data were analysed according to interpretative phenomenological analysis. RESULTS: Committee members with lived experience identified three themes for the role of PROMs and PREMs in health care measurement: trust and relationship-building; health and quality of life; and equity, alongside specific recommendations for the design and administration of PROMs and PREMs. The codevelopment process is reported to demonstrate the meaningful investment in time, infrastructure and relationship-building required for successful partnership between researchers and people with lived experience of homelessness. CONCLUSION: PROMs and PREMs can be meaningful measurement tools for people who experience social disadvantage, but can be alienating or reproduce inequity if they fail to capture complexity or rely on hidden assumptions of key concepts. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted in active partnership between researchers and people with experience of homelessness and chronic illness, including priority setting for study design, data construction, analysis and coauthorship on this article.

Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national study.

BACKGROUND: Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age. METHODS: Two thousand five hundred adult respondents from the general population were recruited using online panels between August 2019 and January 2020. The online survey included three vignettes, representing distinct dying scenarios which increased in severity based on symptom management alongside availability of formal and informal support. Following each vignette respondents rated their preference for each setting of death (home, acute/intensive care, palliative care unit, nursing home) for that scenario. They also provided sociodemographic information and completed a measure of beliefs about family obligations for end-of-life care. RESULTS: Home was the clearly preferred setting only for respondents in the mild severity scenario. As the dying scenario worsened, preferences fell for home death and increased for the other options, such that in the severe scenario, most respondents preferred a palliative care or hospice setting. This pattern was particularly distinct among respondents who also were less supportive of family obligation norms, and for adults 65 years of age and older. CONCLUSIONS: Home is not universally the preferred setting for dying. The public, especially older persons and those expressing lower expectations of families in general, express greater preference for palliative care settings in situations where they might have less family or formal supports accompanied by more severe and uncontrolled symptoms. Findings suggest a) the need for public policy and health system quality indicators to reflect the nuances of public preferences, b) the need for adequate investment in hospices and palliative care settings, and c) continuing efforts to ensure that home-based formal services are available to help people manage symptoms and meet their preferences for setting of death.

'Bare-bones' to 'silver linings': lessons on integrating a palliative approach to care in long-term care in Western Canada.

BACKGROUND: 'Whole-person' palliative approaches to care (PAC) are important for enhancing the quality of life of residents with life-limiting conditions in long-term care (LTC). This research is part of a larger, four province study, the 'SALTY (Seniors Adding Life to Years)' project to address quality of care in later life. A Quality Improvement (QI) project to integrate a PAC (PAC-QI) in LTC was implemented in Western Canada in four diverse facilities that varied in terms of ownership, leadership models, bed size and geography. Two palliative 'link nurses' were hired for 1 day a week at each site over a two-year time frame to facilitate a PAC and support education and training. This paper evaluates the challenges with embedding the PAC-QI into LTC, from the perspectives of the direct care, or front-line team members. Sixteen focus groups were undertaken with 80 front-line workers who were predominantly RNs/LPNs (n = 25), or Health Care Aides (HCAs; n = 32). A total of 23 other individuals from the ranks of dieticians, social workers, recreation and rehabilitation therapists and activity coordinators also participated. Each focus group was taped and transcribed and thematically analyzed by research team members to develop and consolidate the findings related to challenges with embedding the PAC. RESULTS: Thematic analyses revealed that front-line workers are deeply committed to providing high quality PAC, but face challenges related to longstanding conditions in LTC notably, staff shortages, and perceived lack of time for providing compassionate care. The environment is also characterized by diverse views on what a PAC is, and when it should be applied. Our research suggests that integrated, holistic and sustainable PAC depends upon access to adequate resources for education, training for front-line care workers, and supportive leadership. CONCLUSIONS: The urgent need for integrated PAC models in LTC has been accentuated by the current COVID-19 pandemic. Consequently, it is more imperative than ever before to move forwards with such models in order to promote quality of care and quality of life for residents and families, and to support job satisfaction for essential care workers.

Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life.

BACKGROUND: People experiencing structural vulnerability (e.g. homelessness, poverty, racism, criminalization of illicit drug use and mental health stigma) face significant barriers to accessing care at the end-of-life. 'Family' caregivers have the potential to play critical roles in providing care to these populations, yet little is known regarding 'who' caregivers are in this context and what their experiences may be. AIM: To describe family caregiving in the context of structural vulnerability, to understand who these caregivers are, and the unique challenges, burdens and barriers they face. DESIGN: Critical ethnography. SETTING/PARTICIPANTS: Twenty-five family caregivers participated. Observational fieldnotes and semi-structured interviews were conducted in home, shelter, transitional housing, clinic, hospital, palliative care unit, community-based service centre and outdoor settings. RESULTS: Family caregivers were found to be living within the constraints of structural vulnerability themselves, with almost half being street family or friends. The type of care provided varied greatly and included tasks associated with meeting the needs of basic survival (e.g. finding food and shelter). Thematic analysis revealed three core themes regarding experiences: Caregiving in the context of (1) poverty and substance use; (2) housing instability and (3) challenging relationships. CONCLUSION: Findings offer novel insight into the experiences of family caregiving in the context of structural vulnerability. Engaging with family caregivers emerged as a missing and necessary palliative care practice, confirming the need to re-evaluate palliative care models and acknowledge issues of trust to create culturally relevant approaches for successful interventions. More research examining how 'family' is defined in this context is needed.

Applying the concept of structural empowerment to interactions between families and home-care nurses.

Interpretations of family carer empowerment in much nursing research, and in home-care practice and policy, rarely attend explicitly to families' choice or control about the nature, extent or length of their involvement, or control over the impact on their own health. In this article, structural empowerment is used as an analytic lens to examine home-care nurses' interactions with families in one Western Canadian region. Data were collected from 75 hrs of fieldwork in 59 interactions (18 nurses visiting 16 families) and interviews with 12 nurses and 11 family carers. Generally, nurses prioritized client empowerment, and their practice with families appeared oriented to supporting their role and needs as carers (i.e. rather than as unique individuals beyond the caring role), and reinforcing the caring role through validation and recognition. Although families generally expressed appreciation for these interactions, a structural empowerment lens illustrates how the broad context of home care shapes the interpretation and practice of empowerment in ways that can, paradoxically, be disempowering for families. Opportunities to effectively support family choice and control when a client is being cared for at home are discussed.

"Everybody in this community is at risk of dying": An ethnographic exploration on the potential of integrating a palliative approach to care among workers in inner-city settings.

OBJECTIVE: At the end of life, the need for care increases. Yet, for structurally vulnerable populations (i.e., people experiencing homelessness and poverty, racism, criminalization of illicit drug use, stigma associated with mental health), access to care remains highly inaccessible. Emerging research suggests that enhancing access to palliative care for these populations requires moving care from traditional settings, such as the hospital, into community settings, like shelters and onto the street. Thus, inner-city workers (ICWs) (e.g., housing support and community outreach) have the potential to play pivotal roles in improving access to care by integrating a "palliative approach to care" in their work. METHOD: Drawing upon observational field notes and interview data collected for a larger critical ethnographic study, this secondary thematic analysis examines ICWs' (n = 31) experiences providing care for dying clients and garners their perspectives regarding the constraints and facilitators that exist in successfully integrating a palliative approach to care in their work. RESULTS: Findings reveal three themes: (1) Approaches, awareness, and training; (2) Workplace policies and filling in the gaps; and (3) Grief, bereavement, and access to supports. In brief, ICWs who draw upon harm reduction strategies strongly parallel palliative approaches to care, although more knowledge/training on palliative approaches was desired. In their continuous work with structurally vulnerable clients, ICWs have the opportunity to build trusting relationships, and over time, are able to identify those in need and assist in providing palliative support. However, despite death and dying is an everyday reality of ICWs, many described a lack of formal acknowledgement by employers and workplace support as limitations. SIGNIFICANCE OF RESULTS: Findings contribute promising practices for enhancing equitable access to palliative care for society's most vulnerable populations by prioritizing front-line workers' perspectives on how best to integrate a palliative approach to care where structurally vulnerable populations live and die.

Micro-Meso-Macro Practice Tensions in Using Patient-Reported Outcome and Experience Measures in Hospital Palliative Care.

This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians' use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice.

A scoping review of palliative care for persons with severe persistent mental illness.

OBJECTIVE: People with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research. METHOD: A systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles. RESULT: Four major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care. SIGNIFICANCE OF RESULTS: This review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.