Partnering with support persons and clinicians to improve the health care experiences of patients with cirrhosis.

AIM: To explore the care experiences of Aboriginal and Torres Strait Islander Australians diagnosed with cirrhosis with a focus on support needed. BACKGROUND: Cirrhosis disproportionately affects Indigenous Australians, and liver diseases contribute to the mortality gap between Indigenous and other Australian adults. DESIGN: A qualitative study. METHODS: Using yarning methods, Indigenous patients (n = 13) and support persons (n = 3) were interviewed by an Aboriginal researcher during April-July, 2020. Thematic analysis was used to identify common themes using an inductive approach. RESULTS: Six themes emerged. (1) Experience of diagnosis. This theme included stories of delays in the system, self-awareness of signs and symptoms and relief of being diagnosed. (2) 'Shame, shame, shame'. Experiences of prejudices and discrimination from health professionals, the lack of understanding of cirrhosis among health professionals, and stories about alcohol cessation and counselling around alcohol cessation. (3) Health literacy. Participants' understanding of cirrhosis was variable. While the importance of knowledge was recognised, 'what works for someone might not work for others'. Several patients partnered with their support persons and clinicians to bridge the health literacy gap. (4) Sources of support included family and friends, transport facilities, health professionals and peers. (5) Positive and negative aspects of communication and patient consultation were discussed. (6) Psychosocial counselling to 'look after the caring side'. The need for more mental health care services was raised. CONCLUSION: Barriers related to poor health literacy, stigma and lack of practical and emotional support, and issues with communication and patient consultation, may lead to inequitable access to cirrhosis care and treatment for Indigenous Australians. RELEVANCE TO CLINICAL PRACTICE: Gaining knowledge of the experiences of Indigenous Australians with cirrhosis is important for providing patient-centred and culturally appropriate care. Liver specialist nurses have an important role in bridging the health literacy gap and in supporting Indigenous patients and families.

End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisation and unmet supportive care needs.

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.

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review.

BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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. RESULTS: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. CONCLUSIONS: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.

Reducing barriers to consulting a General Practitioner in patients at increased risk of lung cancer: a qualitative evaluation of the CHEST Australia intervention.

Background: Lung cancer has one of the lowest survival outcomes of any cancer because over two-thirds of patients are diagnosed when curative treatment is no longer possible, partly due to later presentation with symptoms to a healthcare provider. Objective: To explore the theoretical underpinning of the Scottish CHEST intervention in participants randomized to the intervention group within the CHEST Australia trial. Methods: A purposive maximum variation sample of participants who received the intervention in the CHEST trial in Perth, Western Australia (N = 13) and Melbourne, Victoria, (N = 7) were interviewed. Patients were asked about their experience of the CHEST consultation, their recall of the main messages, their symptom appraisal and issues relating to help seeking when they develop symptoms. Thematic analysis was conducted to draw common themes between the participants. Results: We identified themes consistent with the theoretical basis of the CHEST intervention. Barriers to consultation identified in the CHEST Australia trial participants were smoker stigmatization, guilt, fatalism and symptom normalization. We identified a general perceived mistrust of GPs based on previous negative experiences of visiting their GP in relation to their smoking. The intervention tackled barriers around lecturing and feelings of guilt and stigma related to smoking. We identified expected effects on salience and personal relevance of symptoms. Participants reported a clearer understanding of what to look out for and when to take action after the CHEST intervention. Conclusions: These findings suggest that the CHEST Australia intervention is achieving the desired objectives at the qualitative level through the proposed theoretical mechanisms.

Factors influencing cancer treatment decision-making by indigenous peoples: a systematic review.

OBJECTIVE: We aim to systematically review studies that identify factors influencing cancer treatment decision-making among indigenous peoples. METHODS: Following the outline suggested by the Preferred Reporting Items for Systematic Review and Meta-analysis, a rigorous systematic review and meta-synthesis were conducted of factors that influence cancer treatment decision-making by indigenous peoples. A total of 733 articles were retrieved from eight databases and a manual search. After screening the titles and abstracts, the full text of 26 articles were critically appraised, resulting in five articles that met inclusion criteria for the review. Because the five articles to be reviewed were qualitative studies, the Critical Appraisal Skills Program toolkit was used to evaluate the methodological quality. A thematic synthesis was employed to identify common themes across the studies. RESULTS: Multiple socio-economic and cultural factors were identified that all had the potential to influence cancer treatment decision-making by indigenous people. These factors were distilled into four themes: spiritual beliefs, cultural influences, communication and existing healthcare systems and structures. CONCLUSION: Although existing research identified multiple factors influencing decision-making, this review identified that quality studies in this domain are scarce. There is scope for further investigation, both into decision-making factors and into the subsequent design of culturally appropriate programmes and services that meet the needs of indigenous peoples.

Addressing unresolved tensions to build effective partnerships: lessons from an Aboriginal cancer support network.

BACKGROUND: Cancer is the second leading cause of death among Aboriginal and Torres Strait Islander people and their survival once diagnosed with cancer is lower compared to that of other Australians. This highlights the need to improve cancer-related health services for Indigenous Australians although how to achieve this remains unclear. Cancer support groups provide emotional and practical support, foster a sense of community and belonging and can improve health outcomes. However, despite evidence on their positive effects on people affected by cancer, there is scarce information on the function and effectiveness of Indigenous-specific cancer peer-support programs in Australia. Using qualitative data from an evaluation study, this paper explores different understandings of how a cancer support group should operate and the impact of unresolved tensions following the establishment of an Indigenous women cancer peer-support network in a regional town in Western Australia. METHODS: Data were collected through semi-structured interviews with 24 participants purposively selected among Indigenous and mainstream healthcare service providers, and group members and clients. Interviews were audiotaped and transcribed verbatim. Transcripts were subjected to inductive thematic analysis. NVivo was used to manage the data and assist in the data analysis. Rigour was enhanced through team member checking, coding validation and peer debriefing. RESULTS: Flexibility and a resistance to formal structuring were at the core of how the group operated. It was acknowledged that the network partly owned its success to its fluid approach; however, most mainstream healthcare service providers believed that a more structured approach was needed for the group to be sustainable. This was seen as acting in opposition to the flexible, organic approach considered necessary to adequately respond to Indigenous women's needs. At the core of these tensions were opposing perspectives on the constructs of 'structure' and 'flexibility' between Indigenous and non-Indigenous participants. CONCLUSIONS: Despite the group's achievements, unresolved tensions between opposing perspectives on how a support group should operate negatively impacted on the working relationship between the group and mainstream service providers, and posed a threat to the Network's sustainability. Our results support the need to acknowledge and address different perspectives and world views in order to build strong, effective partnerships between service providers and Indigenous communities.

Making progress: the role of cancer councils in Australia in indigenous cancer control.

BACKGROUND: Indigenous Australians have poorer outcomes from cancer for a variety of reasons including poorer participation in screening programs, later diagnosis, higher rates of cancer with poor prognosis and poorer uptake and completion of treatment. Cancer prevention and support for people with cancer is part of the core business of the State and Territory Cancer Councils. To support sharing of lessons learned, this paper reports an environmental scan undertaken in 2010 in cancer councils (CCs) nationwide that aimed to support Indigenous cancer control. METHODS: The methods replicated the approach used in a 2006 environmental scan of Indigenous related activity in CCs. The Chief Executive Officer of each CC nominated individuals for interview. Interviews explored staffing, projects, programs and activities to progress cancer control issues for Indigenous Australians, through phone or face-to-face interviews. Reported initiatives were tabulated using predetermined categories of activity and summaries were returned to interviewees, the Aboriginal and Torres Strait Islander Subcommittee and Chief Executive Officers for verification. RESULTS: All CCs participated and modest increases in activity had occurred in most states since 2006 through different means. Indigenous staff numbers were low and no Indigenous person had yet been employed in smaller CCs; no CC had an Indigenous Board member and efforts at capacity building were often directed outside of the organisation. Developing partnerships with Indigenous organisations were ongoing. Acknowledgement and specific mention of Indigenous people in policy was increasing. Momentum increased following the establishment of a national subcommittee which increased the profile of Indigenous issues and provided collegial and practical support for those committed to reducing Indigenous cancer disparities. Government funding of "Closing the Gap" and research in the larger CCs have been other avenues for increasing knowledge and activity in Indigenous cancer control. CONCLUSIONS: This environmental scan measured progress, allowed sharing of information and provided critical assessment of progress across areas of importance for increasing Indigenous cancer control. Structured examination of policies, institutional support systems, programs and interventions is a useful means of highlighting opportunities for progress with minority groups relevant for many organisations. Progress has occurred with momentum likely to increase in the future and benefit from commitment to long-term monitoring and sharing of achievements.

Identifying barriers and improving communication between cancer service providers and Aboriginal patients and their families: the perspective of service providers.

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.

Improving palliative care outcomes for Aboriginal Australians: service providers' perspectives.

BACKGROUND: Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers' experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. METHODS: In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the 'cultural security' framework. Thematic analysis was carried out that identified patterns within data. RESULTS: Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. CONCLUSION: Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people's willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.

Champions in a lifestyle risk-modification program: reflections on their training and experiences.

ISSUES ADDRESSED: The 'Waist' Disposal Challenge (WDC) is a lay-led community-based health intervention in Rotary clubs in Western Australia aimed at reducing risk factors leading to lifestyle-related chronic diseases and, in particular, obesity. Ninety-three lay health advisors (LHA) or Champions were trained to deliver educational sessions to their clubs (for 1300 peers) and implement a body mass index competition by taking monthly weigh-ins (for 764 peers). METHODS: A mixed method design was used to explore Champions' experiences with the training program and their perceived role and impact on implementing the program in their clubs in 2010-11. RESULTS: The qualitative data provided important evidence that initial implementation of this LHA-led health promotion intervention (WDC) has been effective and impacted positively on the Champions and their Rotary clubs. The results were a good fit in the two social action arenas of the Natural Helper Intervention Model: peer-to-peer social support and community attachment. CONCLUSIONS: Reflecting on the impact of the program in their clubs, Champions reported overall health improvements at the personal, peer and community levels, enhanced awareness about health-related issues, improved health behaviour and enhanced community capacity. So what? Champions are an important resource for providing self-management education to people who are at risk of developing chronic conditions, particularly for those hard to reach and where there are difficulties recruiting trained health professionals. Future research needs to explore the characteristics of Champions that impact on the success of community-based programs.

Palliative care needs of terminally ill people living alone: a service provider perspective.

BACKGROUND: Community-based palliative care services face challenges in meeting the needs of terminally ill clients who live alone without a primary caregiver. Yet, there is a dearth of literature on the perceptions of health service providers (HSPs) regarding the care needs and possible management options to assist this growing group to remain at home. OBJECTIVE: This paper investigated the support needs of people living alone with a terminal illness from a service provider perspective. DESIGN: In depth semi-structured interviews were conducted with nine HSPs from community based services in three Australian states. RESULTS: Four main themes emerged: care challenges, differences in care provision, appropriate approaches to care and essentials for an effective service such as 24 h care, cost-free provision of personal alarm systems, supported and coordinated housekeeping services, funded respite care and financial care packages. HSPs expressed a respect for the autonomy and independence of the clients, yet felt pressured to ensure that safe and attentive care was possible. HSPs recognised the central importance of maintaining the independence and autonomy of palliative care clients living alone. CONCLUSIONS: This study is the first in-depth account of what HSPs perceive they need to effectively look after home alone dying clients. The study provided directions to inform service planning for this growing and challenging population group regarding adequate and timely services that will lead to more complying with the clients' wishes, more care being delivered at home, a reduction in hospitalisations, a better quality of life and a capacity to die at home.

Australian general practitioners' perceptions of the barriers and opportunities for community-based care of patients with viral hepatitis: a mixed methods study.

Introduction Engagement of general practitioners (GPs) is essential to improving rates of diagnosis and treatment of viral hepatitis, as traditional tertiary hospital-based models of care often face challenges. Aim We investigated Australian general practitioners' perceptions of a community-based model of care for patients with viral hepatitis. Methods We conducted a mixed methods study using survey questionnaires (23 GPs) and an open-ended interview guide (10 GPs) at primary care clinics in Brisbane, Queensland, Australia. Quantitative data were analysed using descriptive statistics in Stata 15.1 and qualitative data were analysed using thematic analysis following an inductive approach. Results Patient loss to follow up and high cost of diagnostic tests were identified as the biggest challenges to providing care for patients with viral hepatitis. Most GPs interviewed believe a more community-based model of care with support to GPs may improve uptake of care and increase both GP and patient engagement. General practitioners felt a community-based model of care could also improve viral hepatitis testing and follow-up rates. Discussion For Australian GPs, improving patient retention and diagnostics access were key pressure points in the viral hepatitis care pathway. A broader and more profound capacity-building allows community-based viral hepatitis care to be sustainable.

'Nowhere to room nobody told them': logistical and cultural impediments to Aboriginal peoples' participation in cancer treatment.

BACKGROUND: Cancer mortality among Indigenous Australians is higher compared to the non-Indigenous population and attributed to poor access to cancer detection, screening, treatment and support services. A large proportion of Indigenous Australians live in rural and remote areas which makes access to cancer treatment services more challenging. Factors, such as transport, accommodation, poor socio-economic status and cultural appropriateness of services also negatively affect health service access and, in turn, lead to poor cancer outcomes. DESIGN, SETTING AND PARTICIPANTS: Qualitative research with 30 in-depth interviews was conducted with Aboriginal people affected by cancer from across WA, using a variety of recruitment approaches. RESULTS: The infrastructure around the whole-of-treatment experience affected the decision-making and experiences of Aboriginal patients, particularly affecting rural residents. Issues raised included transport and accommodation problems, travel and service expenses, displacement from family, concerns about the hospital environment and lack of appropriate support persons. These factors are compounded by a range of disadvantages already experienced by Aboriginal Australians and are vital factors affecting treatment decision-making and access. CONCLUSION: To improve cancer outcomes for Aboriginal people, logistical, infrastructure and cultural safety issues must be addressed. One way of ensuring this could be by dedicated support to better coordinate cancer diagnostic and treatment services with primary healthcare services.

"We Have to Be Strong Ourselves": Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer.

Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers' needs: managing multiple responsibilities; maintaining the carer's own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

Exploration of the beliefs and experiences of Aboriginal people with cancer in Western Australia: a methodology to acknowledge cultural difference and build understanding.

BACKGROUND: Aboriginal Australians experience poorer outcomes, and are 2.5 times more likely to die from cancer than non-Aboriginal people, even after adjustment for stage of diagnosis, cancer treatment and comorbidities. They are also less likely to present early as a result of symptoms and to access treatment. Psycho-social factors affect Aboriginal people's willingness and ability to participate in cancer-related screening and treatment services, but little exploration of this has occurred within Australia to date. The current research adopted a phenomenological qualitative approach to understand and explore the lived experiences of Aboriginal Australians with cancer and their beliefs and understanding around this disease in Western Australia (WA). This paper details considerations in the design and process of conducting the research. METHODS/DESIGN: The National Health and Medical Research Council (NHMRC) guidelines for ethical conduct of Aboriginal research were followed. Researchers acknowledged the past negative experiences of Aboriginal people with research and were keen to build trust and relationships prior to conducting research with them. Thirty in-depth interviews with Aboriginal people affected by cancer and twenty with health service providers were carried out in urban, rural and remote areas of WA. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. Participants' narratives were divided into broad categories to allow identification of key themes and discussed by the research team. DISCUSSION AND CONCLUSION: Key issues specific to Aboriginal research include the need for the research process to be relationship-based, respectful, culturally appropriate and inclusive of Aboriginal people. Researchers are accountable to both participants and the wider community for reporting their findings and for research translation so that the research outcomes benefit the Aboriginal community. There are a number of factors that influence whether the desired level of engagement can be achieved in practice. These include the level of resourcing for the project and the researchers' efforts to ensure dissemination and research translation; and the capacity of the Aboriginal community to engage with research given other demands upon their time.

An overview of cancer and beliefs about the disease in Indigenous people of Australia, Canada, New Zealand and the US.

OBJECTIVE: Cancer among Indigenous populations in the developed world appears to have increased over past few decades. This article explores issues related to cancer among the Indigenous populations of Australia, Canada, New Zealand and the US and examines variations in the epidemiology, Indigenous peoples' perceptions about cancer and potential effects on care-seeking behaviour. METHODS: A search of peer-reviewed journal articles, government reports, published and unpublished theses and other grey literature was undertaken using electronic databases and citation snowballing. Both epidemiological and qualitative studies were included. RESULTS: Cancer in Indigenous populations in these four countries is characterised by high incidence and mortality rates for specific cancers and lower survival rates as a result of late diagnosis, lower participation and poorer compliance with treatment. A higher prevalence of many cancer risk factors occurs across these populations. Fear of death, fatalism, payback, shame and other spiritual and cultural issues are reported in the few qualitative studies examining Indigenous beliefs and understanding of cancer which undoubtedly influences participation in cancer screening and treatment. CONCLUSIONS AND IMPLICATIONS: The holistic approach (physical, mental, emotional and spiritual) to healing and well-being, and the concept that individual, family and community are inseparable underpin Indigenous care-seeking behaviour. Further community-based research is needed to increase understanding of the needs of Indigenous people with cancer, and to guide policy and practice towards more supportive and effective care.

Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services.

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 5-year 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. METHODS: A total of 37 Aboriginal people from various geographical areas within WA with a direct or indirect experience of cancer were interviewed between March 2006 and September 2007. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. A social constructionist framework provided a theoretical basis for analysis. Interpretation occurred within the research team with member checking and the involvement of an Aboriginal Reference Group assisting with ensuring validity and reliability. RESULTS: Outcomes indicated that misunderstanding, fear of death, fatalism, shame, preference for traditional healing, beliefs such as cancer is contagious and other spiritual issues affected their decisions around accessing services. These findings provide important information for health providers who are involved in cancer-related service delivery. CONCLUSION: These underlying beliefs must be specifically addressed to develop appropriate educational, screening and treatment approaches including models of care and support that facilitate better engagement of Indigenous people. Models of care and support that are more culturally-friendly, where health professionals take account of both Indigenous and Western beliefs about health and the relationship between these, and which engage and include Indigenous people need to be developed. Cultural security, removing system barriers and technical/scientific excellence are all important to ensure Indigenous people utilise healthcare to realise the benefits of modern cancer treatments.

Experiential learning to increase palliative care competence among the Indigenous workforce: an Australian experience.

OBJECTIVES: Improving Indigenous people's access to palliative care requires a health workforce with appropriate knowledge and skills to respond to end-of-life (EOL) issues. The Indigenous component of the Program of Experience in the Palliative Approach (PEPA) includes opportunities for Indigenous health practitioners to develop skills in the palliative approach by undertaking a supervised clinical placement of up to 5 days within specialist palliative care services. This paper presents the evaluative findings of the components of an experiential learning programme and considers the broader implications for delivery of successful palliative care education programme for Indigenous people. METHODS: Semistructured interviews were conducted with PEPA staff and Indigenous PEPA participants. Interviews were recorded, transcribed and key themes identified. RESULTS: Participants reported that placements increased their confidence about engaging in conversations about EOL care and facilitated relationships and ongoing work collaboration with palliative care services. Management support was critical and placements undertaken in settings which had more experience caring for Indigenous people were preferred. Better engagement occurred where the programme included Indigenous staffing and leadership and where preplacement and postplacement preparation and mentoring were provided. Opportunities for programme improvement included building on existing postplacement and follow-up activities. CONCLUSIONS: A culturally respectful experiential learning education programme has the potential to upskill Indigenous health practitioners in EOL care.

Contemporary Educational Interventions for General Practitioners (GPs) in Primary Care Settings in Australia: A Systematic Literature Review.

Background: The primary purpose of educational interventions is to optimize the clinical management of patients. General practitioners (GPs) play a major role in the detection and management of diseases. This systematic literature review will describe the type and outcomes of educational interventions designed for general practitioners (GPs) in the Australian context. Methods: PubMed, CINHAL, and Scopus databases were systematically searched for studies on educational interventions conducted for GPs in Australia during 1st January 2008 to 11th June 2018. Data collected on the methodology of the interventions, GPs satisfaction regarding the educational intervention, changes in knowledge, confidence, skills and clinical behavior of the GPs. We also assessed whether the acquired clinical competencies had an impact on organizational change and on patient health. Results: Thirteen publications were included in this review. The methods with which educational interventions were developed and implemented varied substantially and rigorous evaluation was generally lacking particularly in detailing the outcomes. The reported GP response rate varied between 2 and 96% across studies, depending upon the method of recruitment, the type of intervention and the study setting (rural vs. urban). The most effective recruitment strategy was a combination of initial contact coupled with a visit to GP practices. Nine of the studies reviewed reported improvement in at least one outcome measure: gaining knowledge, improving skills or change in clinical behavior which was translated into clinical practice. In the 3 pre- and post-intervention analysis studies, 90-100% of the participating GPs reported improvement in their knowledge and attitudes. Conclusion: Education interventions for GPs in Australia had low response (recruitment) and retention (GPs that participated in follow-ups) rates, even when financial benefits or CPD points were used as incentives. Higher GP response rates were achieved through multiple recruitment strategies. Multifaceted interventions were more likely to achieve the primary outcome by improving knowledge, skills or changing practice, but the effect was often modest. Inconsistent results were reported in studies involving the use of multiple contact methods within an intervention and conducting online interventions.

Indigenous compared with non-Indigenous Australian patients at entry to specialist palliative care: Cross-sectional findings from a multi-jurisdictional dataset.

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. RESULTS: Of 140,267 patients, 1,465 (1.0%, much lower than expected from statutory data) were Indigenous, 133,987 (95.5%) non-Indigenous, and 4,905 (3.5%) had a missing identifier. The proportion of patients with a missing identifier diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous. Indigenous compared with non-Indigenous patients were younger (mean 62.8 versus 73.0 years, p<0.001), a higher proportion were female (51.5% versus 46.3%; p<0.001) or resided outside major cities (44.2% versus 21.5%, p<0.001). Across all domains, Indigenous compared with matched non-Indigenous patients had lower or equal risk of status requiring prompt intervention. CONCLUSIONS: Indigenous patients (especially those residing outside major cities) are substantially under-represented in care by services participating in the nationwide specialist palliative care Collaboration, likely reflecting widespread access barriers. However, the similarity of status indicators among Indigenous and non-Indigenous patients at entry to care suggests that Indigenous patients who are able to access these services do not disproportionately experience clinically important impediments to care initiation.