Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives (original) (raw)
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Considering Aboriginal palliative care models: the challenges for mainstream services
Rural and remote health
This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care ...
BMC palliative care, 2018
Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. Of 522 articles screened, 39 were eligib...
End-of-life issues for aboriginal patients: a literature review
Canadian family physician Médecin de famille canadien, 2007
To understand some of the cross-cultural issues in providing palliative care to aboriginal patients. MEDLINE (1966 to 2005), CINAHL, PsycINFO, Google Scholar, and the Aboriginal Health Collection at the University of Manitoba were searched. Studies were selected based on their focus on both general cross-cultural caregiving and, in particular, end-of-life decision making and treatment. Only 39 relevant articles were found, half of which were opinion pieces by experienced nonaboriginal professionals; 14 were qualitative research projects from nursing and anthropologic perspectives. All patients are unique. Some cultural differences might arise when providing palliative care to aboriginal patients, who value individual respect along with family and community. Involvement of family and community members in decision making around end-of-life issues is common. Aboriginal cultures often have different approaches to telling bad news and maintaining hope for patients. Use of interpreters an...
Frontiers in Public Health
IntroductionConcerns have been raised internationally about the palliative care needs of migrants and First Nations people. This article presents insights from research investigating the end-of-life needs of Aboriginal and culturally and linguistically diverse people living in Western Sydney, Australia. This region has a large rapidly growing, and highly diverse population and on average low socioeconomic status. The research was guided by an advisory panel made up of representatives of supportive and palliative medicine, bereavement support, Aboriginal health, and multicultural health facilities. It aimed to generate findings to support the delivery of culturally sensitive services in the public health system.MethodThe multi-method design and the conduct of the research were informed by the literature on researching with marginalized groups which highlights the ethical considerations needed to avoid replicating past injustices. Qualitative data was generated from key informants and...
PLOS ONE, 2019
Background There are few quantitative studies on palliative care provision to Indigenous Australians, a population known to experience distinctive barriers to quality healthcare and to have poorer health outcomes than other Australians. Objectives To investigate equity of specialist palliative care service provision through characterising and comparing Indigenous and non-Indigenous patients at entry to care. Methods Using data (01/01/2010-30/06/2015) from all services participating in the multi-jurisdictional Palliative Care Outcomes Collaboration, Indigenous and non-Indigenous patients entering palliative care were compared on proportions vis-à-vis those expected from national statutory datasets, demographic characteristics, and entry-to-care status across fourteen 'problem' domains (e.g., pain, functional impairment) after matching by age, sex, and specific diagnosis.
Journal of Systemic Therapies, 2013
This article documents a community approach to palliative care that took place in Auckland, Aotearoa New Zealand in 2010. It is based on a case study of a 24-yearold woman of Māori and Samoan heritage. While the hospice organization that coordinated the care under discussion ordinarily engages a wide range of social work, medical, nursing, and family services, in this case a broader and participatory level of community engagement was brought to bear on the process of death and dying. In particular, the Māori concept and practice of whanaungatanga-or relational belonging though kinship, shared experience, and/or work-was taken up actively. Implications for ecosystems theory, and for engaging minority cultural groups in processes of palliative care internationally, are considered. Drawing on a case study, this article describes some of the unique philosophies and practices of a hospice in Auckland, Aotearoa New Zealand whose staff aspire to work collaboratively and multi-systemically with their clients. 1 Community-based palliative care work is particularly important for Māori, the indigenous people of Aotearoa New Zealand, and for Pacific peoples, because these cultural groups often prefer to care for a dying family member in their home. The hospice-here given the pseudonym Outreach Care to preserve confidentiality for the case discussedserves an area with a large Māori and Pacific Island population. Hospice-based palliative care internationally aspires to engage a range of community services and approaches. However, in practice, the work is often dominated by a medical model that can individualize experiences of death and dying. Mackelprang and Mackelprang (2005) argue that social workers can ensure a broader perspective is taken
Supportive Care in Cancer, 2020
Background Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs. Purpose To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life. Method Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/ communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted. Results In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%). Conclusions Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population.
BMC Health Services Research, 2013
Background: Aboriginal Australians experience poorer outcomes from cancer compared to the non-Aboriginal population. Some progress has been made in understanding Aboriginal Australians' perspectives about cancer and their experiences with cancer services. However, little is known of cancer service providers' (CSPs) thoughts and perceptions regarding Aboriginal patients and their experiences providing optimal cancer care to Aboriginal people. Communication between Aboriginal patients and non-Aboriginal health service providers has been identified as an impediment to good Aboriginal health outcomes. This paper reports on CSPs' views about the factors impairing communication and offers practical strategies for promoting effective communication with Aboriginal patients in Western Australia (WA). Methods: A qualitative study involving in-depth interviews with 62 Aboriginal and non-Aboriginal CSPs from across WA was conducted between March 2006 -September 2007 and April-October 2011. CSPs were asked to share their experiences with Aboriginal patients and families experiencing cancer. Thematic analysis was carried out. Our analysis was primarily underpinned by the socio-ecological model, but concepts of Whiteness and privilege, and cultural security also guided our analysis. Results: CSPs' lack of knowledge about the needs of Aboriginal people with cancer and Aboriginal patients' limited understanding of the Western medical system were identified as the two major impediments to communication. For effective patient-provider communication, attention is needed to language, communication style, knowledge and use of medical terminology and cross-cultural differences in the concept of time. Aboriginal marginalization within mainstream society and Aboriginal people's distrust of the health system were also key issues impacting on communication. Potential solutions to effective Aboriginal patient-provider communication included recruiting more Aboriginal staff, providing appropriate cultural training for CSPs, cancer education for Aboriginal stakeholders, continuity of care, avoiding use of medical jargon, accommodating patients' psychosocial and logistical needs, and in-service coordination. Conclusion: Individual CSPs identified challenges in cross-cultural communication and their willingness to accommodate culture-specific needs within the wider health care system including better communication with Aboriginal patients. However, participants' comments indicated a lack of concerted effort at the system level to address Aboriginal disadvantage in cancer outcomes.
BMC Health Services Research, 2009
Background: Despite a lower overall incidence, Aboriginal Australians experience poorer outcomes from cancer compared with the non-Aboriginal population as manifested by higher mortality and lower 5year survival rates. Lower participation in screening, later diagnosis of cancer, poor continuity of care, and poorer compliance with treatment are known factors contributing to this poor outcome. Nevertheless, many deficits remain in understanding the underlying reasons, with the recommendation of further exploration of Aboriginal beliefs and perceptions of cancer to help understand their care-seeking behavior. This could assist with planning and delivery of more effective interventions and better services for the Aboriginal population. This research explored Western Australian (WA) Aboriginal peoples' perceptions, beliefs and understanding of cancer.