"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.

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 .

"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.

Discourses Reproducing Gender Inequities in Hospice Palliative Home Care.

BACKGROUND: As home is a site where gendered attitudes, beliefs, and practices are reproduced, it is imperative that policies and practices promote gender equity in end-of-life care at home. PURPOSE: The purpose of this study was to critically analyze gender relations in the sociopolitical context of hospice palliative home care. METHODS: Using a critical feminist perspective, we examined gender relations between and among clients with cancer, their family caregivers, and nurses in hospice palliative home care. Ethnographic methods of in-depth interviews (n = 25), observations of home visits (n = 9), and review of documents (n = 12) were employed to expose gender (in)equities. FINDINGS: This critical analysis sheds light on institutional discourses that reproduce gender inequities: discourses of difference and denial; discourses of individuality, autonomy, and choice; and discourses of efficiency, objectivity, and rationality. Although gender was discounted, these neoliberal discourses reinforced traditional gender relations. DISCUSSION: Neoliberal discourses frame health and health-care experiences as resulting primarily from individual behaviors and biomedical factors, permitting health-care providers and policy makers to overlook power relations and the sociopolitical forces that obscure gender inequities. A critical perspective is needed to consider how social structures significantly shape everyday gendered experiences in hospice palliative home care.

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.

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings.

BACKGROUND: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. METHODS: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. RESULTS: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. CONCLUSION: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation.

Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care.

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end-of-life at home. Data were collected from in-depth interviews (n = 25), observations of agency home care visits (n = 9) and analyses of policy and home care agency documents (n = 12). Employing a critical feminist lens, a gender-based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end-of-life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost-efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences.

Death Is a Social Justice Issue: Perspectives on Equity-Informed Palliative Care.

All too often, palliative care services are not responsive to the needs of those who are doubly vulnerable, being that they are both in need of palliative care services and experiencing deficits in the social determinants of health that result in complex, intersecting health and social concerns. In this article, we argue for a reorientation of palliative care to explicitly integrate the premises of health equity. We articulate the philosophical, theoretical, and empirical scaffolding required for equity-informed palliative care and draw on a current study to illustrate such an approach to the care of people who experience structural vulnerabilities.

Cultural influences on palliative family caregiving: service recommendations specific to the Vietnamese in Canada.

BACKGROUND: Much of what is known about family caregiving at end-of-life in Canada has been studied within the context of various disease categories or across different care settings, rather than in relation to specific ethnic/cultural identities. Such homogeneity belies the impact of cultural and social factors on the experiences and outcomes of palliative and end-of-life (P/EOL) care. We know little about the end-of-life experiences of Vietnamese-Canadian families. Consequently, there is a lack of understanding around how to best meet the needs of Vietnamese care recipients, caregivers, and their families via the health service system, whose services of which we know they have limited access. RESULTS: To determine a set of service recommendations for health care settings (including the home) specific to caring for Vietnamese (P/EOL) care recipients, caregivers and their families, a qualitative instrumental case-study design was employed. The perspectives of 18 adult Vietnamese family caregivers (FCGs) were obtained. In addition, seven semi-structured key informant interviews were implemented with a range of personnel from community service providers to front-line health care professionals. The ways in which caregiving was perceived and expressed were reflected in three thematic findings: (1) Natural: identity and care work; (2) Intentional: whole person care; and (3) Intensive: standards, struggle, and the context of care. Ten main recommendations have been vetted with service provider leaders and confirmed as being appropriate for uptake. CONCLUSIONS: The ten service recommendations for health care settings (including the home), if implemented, would contribute to improved P/EOL services for the Vietnamese population. Further research involves the evaluation of these policy and programs.

Enabling a family caregiver-led assessment of support needs in home-based palliative care: Potential translation into practice.

BACKGROUND: Systematic assessment of family caregivers' support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers' outcomes and their capacity to provide care at end of life. AIM: To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool. METHODS: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken. RESULTS: The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner. CONCLUSION: Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes.

The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial.

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain.

Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial.

INTRODUCTION: The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care. AIM: To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care. METHODS: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis. RESULTS: The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced. CONCLUSION: Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers' needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers.

Identifying socio-environmental factors that facilitate resilience among Canadian palliative family caregivers: a qualitative case study.

OBJECTIVE: In Canada, friends and family members are becoming increasingly responsible for providing palliative care in the home. This is resulting in some caregivers experiencing high levels of stress and burden that may ultimately surpass their ability to cope. Recent palliative care research has demonstrated the potential for caregiver resilience within such contexts. This research, however, is primarily focused on exploring individual-level factors that contribute to resilience, minimizing the inherent complexity of this concept, and how it is simultaneously influenced by one's social context. Therefore, our study aims to identify socio-environmental factors that contribute to palliative family caregiver resilience in the Canadian homecare context. METHODS: Drawing on ethnographic fieldnotes and semistructured interviews with family caregivers, care recipients, and homecare nurses, this secondary analysis employs an intersectionality lens and qualitative case study approach to identify socio-environmental factors that facilitate family caregivers' capacity for resilience. Following a case study methodology, two cases are purposely selected for analysis. RESULTS: Findings demonstrate that family caregiver resilience is influenced not only by individual-level factors but also by the social environment, which sets the lived context from which caregiving roles are experienced. Thematic findings of the two case studies revealed six socio-environmental factors that play a role in shaping resilience: access to social networks, education/knowledge/awareness, employment status, housing status, geographic location, and life-course stage. SIGNIFICANCE OF RESULTS: Findings contribute to existing research on caregiver resilience by empirically demonstrating the role of socio-environmental factors in caregiving experiences. Furthermore, utilizing an intersectional approach, these findings build on existing notions that resilience is a multidimensional and complex process influenced by numerous related variables that intersect to create either positive or negative experiences. The implications of the results for optimizing best homecare nursing practice are discussed.

Changing communication needs and preferences across the cancer care trajectory: insights from the patient perspective.

PURPOSE: In this program of research, we sought to expand our understanding of how cancer patients' communication needs and preferences change across the course of their illness trajectory. To address known limitations in the empirical knowledge base, we designed a study capitalizing on representative patient reports as they occurred within time and across experience obtaining care for this disease. METHODS: We used a longitudinal cohort design informed by interpretive description methodology to follow 125 patients over a multi-year period as they reflected on their ongoing experiences with cancer care communication. RESULTS: In relation to each phase of their cancer care trajectory, patients identified tension points and contextual challenges impinging on what they felt constituted helpful and unhelpful patient-provider communication. CONCLUSIONS: Findings from this study create a dynamic portrait of how we can better inform communication approaches and interventions through interpretations of population knowledge and individual experience.