The Challenges of Advance Care Planning for Acute Care Registered Nurses.

STUDY BACKGROUND: The practice of acute care nurses is shaped by organizational factors such as lack of privacy, heavy workloads, unclear roles, lack of time, and lack of specific policies and procedures. We know little about the social and organizational structures and processes that influence nurses' uptake of valuable patient-centered discussions like advance care planning (ACP). ACP is beneficial for patients, their substitute decision makers, and healthcare providers. PURPOSE: To describe the operational, organizational, and societal influences shaping nurses' ACP work in acute care settings. METHODS: This ethnographic study purposively sampled 14 registered nurses and 9 administrators who worked in two acute care hospitals in Northeastern Ontario. Methods consisted of 23 open-ended, semi-structured interviews, 20 hours of observational fieldwork, and a collection of publicly available organizational documents. Data were inductively analyzed using an iterative constant comparative approach. RESULTS: Nurses were challenged to meet multiple competing demands, leaving them to scramble to manage complex and critically ill acute care patients while also fulfilling organizational tasks aligned with funding metrics, accreditation, and strategic planning priorities. Such factors limited nurses' capacity to engage their patients in ACP. CONCLUSIONS: Acute care settings that align patient values and medical treatment need to foster ACP practices by revising organizational policies and processes to support this outcome, analyzing the tasks of healthcare providers to determine who might best address it, and budgeting how to support it with additional resources.

Services, models of care, and interventions to improve access to cancer treatment for adults who are socially disadvantaged: A scoping review protocol.

Timely access to guideline-recommended cancer treatment is known to be an indicator of the quality and accessibility of a cancer care system. Yet people who are socially disadvantaged experience inequities in access to cancer treatment that have significant impacts on cancer outcomes and quality of life. Among people experiencing the intersecting impacts of poor access to the social determinants of health and personal identities typically marginalized from society ('social disadvantage'), there are significant barriers to accessing cancer, many of which compound one another, making cancer treatment extremely difficult to access. Although some research has focused on barriers to accessing cancer treatment among people who are socially disadvantaged, it is not entirely clear what, if anything, is being done to mitigate these barriers and improve access to care. Increasingly, there is a need to design cancer treatment services and models of care that are flexible, tailored to meet the needs of patients, and innovative in reaching out to socially disadvantaged groups. In this paper, we report the protocol for a planned scoping review which aims to answer the following question: What services, models of care, or interventions have been developed to improve access to or receipt of cancer treatment for adults who are socially disadvantaged? Based on the methodological framework of Arksey and O'Malley, this scoping review is planned in six iterative stages. A comprehensive search strategy will be developed by an academic librarian. OVID Medline, EMBASE, CINAHL (using EBSCOhost) and Scopus will be searched for peer-reviewed published literature; advanced searches in Google will be done to identify relevant online grey literature reports. Descriptive and thematic analysis methods will be used to analyze extracted data. Findings will provide a better understanding of the range and nature of strategies developed to mitigate barriers to accessing cancer treatment.

"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.

Integrating Palliative Care in Hematopoietic Stem Cell Transplantation: A Qualitative Study Exploring Patient, Caregiver, and Clinician Perspectives.

PURPOSE: To explore patient, caregiver, and clinician perspectives on palliative care for patients undergoing hematopoietic stem cell transplantation (HSCT). PARTICIPANTS & SETTING: 8 patients who had undergone or would undergo HSCT, 4 caregivers, and 16 HSCT clinicians. METHODOLOGIC APPROACH: This qualitative, interpretive descriptive study used semistructured interviews conducted via telephone or videoconference. FINDINGS: Responses were categorized into the following two themes: concerns and challenges during and after HSCT, and tensions with integrating palliative care into HSCT. IMPLICATIONS FOR NURSING: The findings from this study highlight the unique and varied needs of patients and their caregivers during and after HSCT. More research is required to determine how to best integrate palliative care in this setting.

Outcome measures in palliative care training interventions: a systematic review of trial-based studies.

BACKGROUND: The ability of health care clinicians to offer a palliative approach to care to their patients with progressive, life-limiting illness has become critical as demand for these services increases. Numerous training initiatives exist to assist clinicians who are not palliative care specialists in the development of palliative care skills, however there is little consensus on how to best measure the effectiveness of these education programs. We conducted a systematic review of palliative care training intervention trials to examine the outcomes measures used. METHODS: We searched MEDLINE, CINAHL, PsycINFO, Embase, HealthSTAR, and five trial registries for studies and protocols published since 2000. Eligible studies were trials assessing palliative care training for clinicians. Interventions had to address at least two of six palliative care-related domains, based on the National Consensus Project: identification or assessment; illness understanding; symptom management; decision making (e.g., advance care planning); coping (patient and caregivers); and referral (coordination/care planning). Each article was reviewed independently by a minimum of two reviewers for inclusion and extraction of relevant data. RESULTS: Of 1,383 articles reviewed, 36 studies met the inclusion criteria, 16 (44%) of which focused on palliative care communication skills. Among all the trials, 190 different measures were reported. Only 11 validated measures were used in at least 2 studies, including the End-of-Life Professional Caregiver Survey (EPCS) for clinicians and the Quality of Dying and Death Questionnaire (QODD) for caregivers. Clinician and patient/caregiver reported outcomes were measured in 75% and 42% of studies, respectively. Half of the trials employed a study-created questionnaire. Data from administrative (n=14) and/or qualitative (n=7) sources were also used. Nine studies, almost exclusively those with a communication skills focus, assessed clinician interactions as an outcome. CONCLUSIONS: We found considerable diversity in outcomes among the trials reviewed. Further examination of the outcomes used in the broader literature and development of these measures is needed. This will assist towards establishing meaningful and consistent metrics for assessing the impact of palliative care education, to inform evidence-based scaling of effective programs.

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.

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.

Equity-Oriented Healthcare: What It Is and Why We Need It in Oncology.

Alarming differences exist in cancer outcomes for people most impacted by persistent and widening health and social inequities. People who are socially disadvantaged often have higher cancer-related mortality and are diagnosed with advanced cancers more often than other people. Such outcomes are linked to the compounding effects of stigma, discrimination, and other barriers, which create persistent inequities in access to care at all points in the cancer trajectory, preventing timely diagnosis and treatment, and further widening the health equity gap. In this commentary, we discuss how growing evidence suggests that people who are considered marginalized are not well-served by the cancer care sector and how the design and structure of services can often impose profound barriers to populations considered socially disadvantaged. We highlight equity-oriented healthcare as one strategy that can begin to address inequities in health outcomes and access to care by taking action to transform organizational cultures and approaches to the design and delivery of cancer services.

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 .

Prolonged Grief and Bereavement Supports Within a Caregiver Population Who Transition Through a Palliative Care Program in British Columbia, Canada.

OBJECTIVE: To determine the prevalence of prolonged grief disorder (PGD), and self-reported resilience among bereaved caregivers within a palliative care program that serves a large region of the Lower Mainland in British Columbia, Canada. Additionally, to discern effective bereavement supports utilized by caregivers following the loss of a loved one. METHODS: A descriptive study using both quantitative and qualitative methods. Sociodemographic information (n = 427) was collected from bereaved caregivers 3 months after their loss. PGD and resilience were prospectively assessed 12 months post-loss using the prolonged grief scale (PG-13, n = 212) and brief resilience scale (BRS, n = 215), respectively. A qualitative thematic analysis was conducted on responses to the open-ended question on what bereavement services or activities caregivers found helpful in coping with the loss of a loved one. RESULTS: Of the 212 individuals that completed the PG-13, 4.7% met diagnostic criteria for PGD, 27.4% were moderate risk, and 67.9% were low risk for PGD. Of the 215 caregivers that completed the BRS, 48.4% had low resilience, 51.6% had normal resilience, and 0% had high resilience. The major themes of formal supports, informal supports, and self-care activities emerged from caregiver comments regarding effective bereavement supports. CONCLUSION: The incidence of PGD in caregivers is low within the Fraser Health Palliative Care program. Bereaved caregivers mainly utilize existing social networks and activities to cope with their loss. Focusing on a community-based approach to supports may improve bereavement experiences and lower rates of prolonged grief.

'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.

"We are to be like machines fill the bed before it gets cold": Exploring the emotional geographies of healthcare providers caring for dying residents in long-term care facilities.

The end-of-life context is imbued with emotions, with death and dying transforming everyday places, like long-term care facilities, into entirely new emotional topographies that can evoke profound effects on those who live and work within these settings. Despite their significant role, healthcare providers' emotions and their interconnections with 'place' have received relatively little attention from researchers, including geographers of care and caregiving. This secondary thematic analysis attempts to address this notable gap by exploring the emotional geographies of healthcare providers caring for dying residents in four long-term care facilities in western Canada. By drawing upon interview and focus group data with administrators (n = 12) and direct care provider (n = 80) participants, findings reveal that experiences of caring for dying residents were often charged with negative emotions (e.g., distress, frustration, grief). These emotions were not only influenced by social and physical aspects of 'place', but the temporal process of caring for a dying resident, which included: (1) Identifying a resident as in need of a palliative approach to care; (2) Actively dying; and (3) Following a resident's death. Findings indicate that providers' emotions shifted in scale at each of these temporal phases, ranging from association with the facility as a whole to the micro-scale of the body. Broader structural forces that influence the physical and social place of long-term care facilities were also found to shape experiences of emotional labor among staff. With an increasing number of deaths occurring within long-term care facilities throughout the Global North, such findings contribute critical experiential knowledge that can inform policy and programs on ways to help combat staff burnout, facilitate worker satisfaction, and foster resilience among long-term care providers, ensuring they receive the necessary supports to continue fulfilling this valuable caring role.

"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.

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.

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.

Hospitals, clinics, and palliative care units: Place-based experiences of formal healthcare settings by people experiencing structural vulnerability at the end-of-life.

The process of dying pronounces inequities, particularly for structurally vulnerable populations. Extending recent health geography research, we critically explore how the 'places' of formal healthcare settings shape experiences of, and access to, palliative care for the structurally vulnerable (e.g., homeless, substance users). Drawing on 30 months of ethnographic data, thematic findings reveal how symbolic, aesthetic, and physical elements of formal healthcare 'places' intersect with social relations of power to produce, reinforce, and amplify structural vulnerability and thus, inequities in access to care. Such knowledge may inform decision-makers on ways to enhance equitable access to palliative care for some of societies' most vulnerable population groups.

What family caregivers learn when providing care at the end of life: a qualitative secondary analysis of multiple datasets.

OBJECTIVE: Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care. METHOD: Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis. RESULTS: Thematic and cross-comparative analyses found three general kinds of learning that were described-knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about "learning" appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase "I have had to learn." SIGNIFICANCE OF RESULTS: Findings can inform the development of individualized educational programs and interventions for family caregivers.