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

Giesbrecht, Melissa; Stajduhar, Kelli; Mollison, Ashley; Pauly, Bernadette; Reimer‐Kirkham, Sheryl; McNeil, Ryan; Wallace, Bruce; Dosani, Naheed; Rose, Caelin

doi:10.1016/j.healthplace.2018.06.005

Cited by 41 publications

(62 citation statements)

References 60 publications

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“…Inequities experienced by structurally vulnerable populations become particularly pronounced at the end-oflife. [1][2][3][4][5][6][7][8][9][10][11][12] The concept of structural vulnerability is aligned with a social determinants of health perspective, but builds upon it to capture the wider range of social and structural forces that produce and reinforce inequities, constrain agency and opportunities, and amplify vulnerability to risk, harm and poor health. 13,14 Structural vulnerability, therefore, is the product of one's location within the social hierarchy, where relationships of power are embedded, 15 and encompasses not only political and economic inequalities, but also a wider range of cultural determinants (e.g.…”

Section: Introductionmentioning

confidence: 99%

“…These experiences are simultaneously and differentially shaped by racism, settler colonialism, experiences of trauma and violence, social isolation, stigma associated with mental health issues or cognitive impairments, substance use, experiences of incarceration and disability. 3,5,6 At the end-of-life, people experiencing structural vulnerability face significant barriers in accessing care. 4,11 Findings from our previous work indicates that barriers to care for these populations include the need to prioritize daily survival, the normalization of death and dying in their lives, problems associated with recognizing the need for palliative care, policies regarding professional risk and safety management, and disjointed health and social care systems.…”

Section: Introductionmentioning

confidence: 99%

“…Other previous research of ours indicates that those with life-limiting illnesses who are experiencing structural vulnerability simply do not 'fit' into public, formal healthcare environments, yet have no place else to go to access needed care. 6 In response, there have been recent calls to action for palliative care to become more flexible and mobile. 4,7,[16][17][18] This includes bringing palliative care into settings deemed acceptable and safe by structurally vulnerable populations in order to meet clients 'where they are at'.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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“…Previous studies among homeless people have pointed out unmet needs for personal attention, understanding and family-like relationships as well as a common fear of dying alone. 22 , 23 , 36 , 46 – 50 Hence, carefully assessing social networks and needs of homeless people is important to anticipate and reduce emotional suffering at the end of life. 51 …”

Section: Discussionmentioning

confidence: 99%

End-of-life care for homeless people in shelter-based nursing care settings: A retrospective record study

Dongen

Klop²,

Veer

et al. 2020

Palliat Med

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Background: Homeless people experience multiple health problems and early mortality. In the Netherlands, they can get shelter-based end-of-life care, but shelters are predominantly focused on temporary accommodation and recovery. Aim: To examine the characteristics of homeless people who reside at the end-of-life in shelter-based nursing care settings and the challenges in the end-of-life care provided to them. Design: A retrospective record study using both quantitative and qualitative analysis methods. Setting/participants: Two Dutch shelter-based nursing care settings. We included 61 homeless patients who died between 2009 and 2016. Results: Most patients had somatic (98%), psychiatric (84%) and addiction problems (90%). For 75% of the patients, the end of life was recognised and documented; this occurred 0–1253 days before death. For 26%, a palliative care team was consulted in the year before death. In the three months before death, 45% had at least three transitions, mainly to hospitals. Sixty-five percent of the patients died in the shelter, 27% in a hospital and 3% in a hospice. A quarter of all patients were known to have died alone. Documented care difficulties concerned continuity of care, social and environmental safety, patient–professional communication and medical-pharmacological alleviation of suffering. Conclusions: End-of-life care for homeless persons residing in shelter-based nursing care settings is characterised and challenged by comorbidities, uncertain prognoses, complicated social circumstances and many transitions to other settings. Multilevel end-of-life care improvements, including increased interdisciplinary collaboration, are needed to reduce transitions and suffering of this vulnerable population at the end of life.

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“…The purpose is to gain a more multidimensional understanding of the distance between a woman's community and a health care provider—including how the distance is or is not traversed—and to reveal otherwise invisible experiences of marginalized groups ( Statz and Pruitt, 2019 ). This values place-based experiential knowledge of healthcare environments ( Giesbrecht et al, 2018 ) while also asking, Whose understanding of distance matters, and when? Drawing on qualitative interviews with 51 rural women across northeastern Minnesota, the findings of this analysis introduce new interpretations of barriers to rural health care that exceed purely spatial or operational challenges.…”

Section: Introductionmentioning

confidence: 99%

Spatial barriers as moral failings: What rural distance can teach us about women's health and medical mistrust

Statz

Evers

2020

Health & Place

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Policy attention to growing rural “health care deserts” tends to identify rural distance as a primary spatial barrier to accessing care. This paper brings together geography, health policy, and ethnographic methods to instead theorize distance as an expansive and illuminating concept that highlights place-based expertise. It specifically engages rural women's interpretations of rural distance as a multifaceted dimension of accessing health care, which includes but is not limited to women's health services and maternity care. Presenting qualitative research with 51 women in a rural region of the U.S., thematic findings reveal an interpretation of barriers to rural health care as moral failings rather than as purely spatial or operational challenges, along with wide communication of negative health care experiences owing to spatially-disparate but trusted social networks. Amid or owing to the rural crisis context, medical mistrust here emerges as a meaningful but largely unrecognized barrier to rural women's ability—and willingness—to obtain health care. This underscores how a novel interpretation of distance may inform policy efforts to address rural medical deserts.

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

Cited by 41 publications

References 60 publications

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

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

End-of-life care for homeless people in shelter-based nursing care settings: A retrospective record study

Spatial barriers as moral failings: What rural distance can teach us about women's health and medical mistrust

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