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.

"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.

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.

"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.

"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.

A Qualitative Study of Community-Based HIV/AIDS Prevention Interventions, Programs, and Projects for Rural and Remote Regions in Canada: Implementation Challenges and Lessons Learned.

CONTEXT: Fifteen percent to 20% of the Canadian and American populations live outside urban areas, and despite growing regional HIV/AIDS-related health disparities, there is little published research specific to rural or remote (rural/remote) HIV/AIDS prevention programming. OBJECTIVE: To document implementation challenges, lessons learned, and evaluation approaches of promising and proven HIV/AIDS prevention programs and interventions developed and delivered by organizations with rural/remote catchment areas in Canada to provide a foundation for information sharing among agencies. DESIGN: Qualitative study design, using a community-based participatory research approach. We screened Canadian community-based organizations with an HIV/AIDS prevention mandate to determine whether they offered services for rural/remote populations and invited organizational representatives to participate in semistructured telephone interviews. Interviews were audio-recorded and transcribed. Content analysis was used to identify categories in the interview data. SETTING: Canada, provinces (all except Prince Edward Island), and territories (all except Nunavut). PARTICIPANTS: Twenty-four community-based organizations. RESULTS: Screening calls were completed with 74 organizations, of which 39 met study criteria. Twenty-four (62%) interviews were conducted. Populations most frequently served were Indigenous peoples (n = 13 organizations) and people who use drugs (n = 8 organizations) (categories not mutually exclusive). Key lessons learned included the importance of involving potential communities served in program development; prioritizing community allies/partnerships; building relationships; local relevancy and appropriateness; assessing community awareness or readiness; program flexibility/adaptability; and addressing stigma. Evaluation activities were varied and used for funder reporting and organizational learning. CONCLUSIONS: Rural/remote HIV/AIDS programs across Canada expressed similar challenges and lessons learned, suggesting that there is potential for knowledge exchange, and development of a community of practice. Top-down planning and evaluation models may fail to capture program achievements in rural/remote contexts. The long-term engagement practices that render rural/remote programs promising do not always conform to planning and implementation requirements of limited funding.

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.

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.

Toward cultural safety: nurse and patient perceptions of illicit substance use in a hospitalized setting.

As a group, people who use illicit drugs and are affected by social disadvantages often experience health inequities and encounter barriers such as stigma and discrimination when accessing health care services. Cultural safety has been proposed as one approach to address health inequities and mitigate stigma in health care. Drawing on a qualitative ethnographic approach within an overarching collaborative framework, we sought to gain an understanding of what constitutes culturally safe care for people who use(d) illicit drugs. The findings illustrate that illicit substance use in hospitals is often negatively constructed as (1) an individual failing, (2) a criminal activity, and (3) a disease of "addiction" with negative impacts on access to care, management of pain, and provision of harm-reduction supplies and services. These constructions of illicit substance use impact patients' feelings of safety in hospital and nurses' capacity to provide culturally safe care. On the basis of these findings, we provide recommendations and guidance for the development of culturally safe nursing practice.