"A Huge Gap": Health Care Provider Perspectives on Cancer Screening for Aboriginal and Torres Strait Islander People in the Northern Territory.

Cancer is one of the leading causes of death for Aboriginal and Torres Strait Islander people in the Northern Territory (NT). Accessible and culturally appropriate cancer screening programs are a vital component in reducing the burden of cancer. Primary health care plays a pivotal role in facilitating the uptake of cancer screening in the NT, due to the significant challenges caused by large distances, limited resources, and cultural differences. This paper analyses health care provider perspectives and approaches to the provision of cancer screening to Aboriginal people in the NT that were collected as part of a larger study. Semi-structured interviews were conducted with 50 staff from 15 health services, including 8 regional, remote, and very remote primary health care (PHC) clinics, 3 hospitals, a cancer centre, and 3 cancer support services. Transcripts were thematically analysed. Cancer screening by remote and very remote PHC clinics in the NT is variable, with some staff seeing cancer screening as a "huge gap", while others see it as lower priority compared to other conditions due to a lack of resourcing and the overwhelming burden of acute and chronic disease. Conversely, some clinics see screening as an area where they are performing well, with systematic screening, targeted programs, and high screening rates. There was a large variation in perceptions of the breast screening and cervical screening programs. However, participants universally reported that the bowel screening kit was complicated and not culturally appropriate for their Aboriginal patients, which led to low uptake. System-level improvements are required, including increased funding and resourcing for screening programs, and for PHC clinics in the NT. Being appropriately resourced would assist PHC clinics to incorporate a greater emphasis on cancer screening into adult health checks and would support PHCs to work with local communities to co-design targeted cancer screening programs and culturally relevant education activities. Addressing these issues are vital for NT PHC clinics to address the existing cancer screening gaps and achieving the Australian Government pledge to be the first nation in the world to eliminate cervical cancer as a public health problem by 2035. The implementation of the National Lung Cancer Screening Program in 2025 also presents an opportunity to deliver greater benefits to Aboriginal communities and reduce the cancer burden.

Improving Access to Cancer Treatment Services in Australia's Northern Territory-History and Progress.

Cancer is the leading cause of death in the Northern Territory (NT), Australia's most sparsely populated jurisdiction with the highest proportion of Aboriginal people. Providing cancer care to the NT's diverse population has significant challenges, particularly related to large distances, limited resources and cultural differences. This paper describes the developments to improve cancer treatment services, screening and end-of-life care in the NT over the past two decades, with a particular focus on what this means for the NT's Indigenous peoples. This overview of NT cancer services was collated from peer-reviewed literature, government reports, cabinet papers and personal communication with health service providers. The establishment of the Alan Walker Cancer Care Centre (AWCCC), which provides radiotherapy, chemotherapy and other specialist cancer services at Royal Darwin Hospital, and recent investment in a PET Scanner have reduced patients' need to travel interstate for cancer diagnosis and treatment. The new chemotherapy day units at Alice Springs Hospital and Katherine Hospital and the rapid expansion of tele-oncology have also reduced patient travel within the NT. Access to palliative care facilities has also improved, with end-of-life care now available in Darwin, Alice Springs and Katherine. However, future efforts in the NT should focus on increasing and improving travel assistance and support and increasing the availability of appropriate accommodation; ongoing implementation of strategies to improve recruitment and retention of health professionals working in cancer care, particularly Indigenous health professionals; and expanding the use of telehealth as a means of delivering cancer care and treatment.

Putting Policy into Practice: How Three Cancer Services Perform against Indigenous Health and Cancer Frameworks.

Improving cancer outcomes for Indigenous people by providing culturally safe, patient-centred care is a critical challenge for health services worldwide. This article explores how three Australian cancer services perform when compared to two national best practice guidelines: the National Aboriginal and Torres Strait Islander Cancer Framework (Cancer Framework) and the National Safety and Quality Health Service (NSQHS) User Guide for Aboriginal and Torres Strait Islander Health (User Guide). The services were identified through a nationwide project undertaken to identify cancer services providing treatment to Indigenous cancer patients. A small number of services which were identified as particularly focused on providing culturally safe cancer care participated in case studies. Interviews were conducted with 35 hospital staff (Indigenous and non-Indigenous) and 8 Indigenous people affected by cancer from the three services. The interviews were analysed and scored using a traffic light system according to the seven priorities of the Cancer Framework and the six actions of the NSQHS User Guide. While two services performed well against the User Guide, all three struggled with the upstream elements of the Cancer Framework, suggesting that the treatment-focused Optimal Care Pathway for Aboriginal and Torres Strait Islander People with Cancer (Cancer Pathway) may be a more appropriate framework for tertiary services. This article highlights the importance of a whole-of-organisation approach when addressing and embedding the six actions of the User Guide. Health services which have successfully implemented the User Guide are in a stronger position to implement the Cancer Framework and Cancer Pathway.

Perspectives of Aboriginal People Affected by Cancer on the Need for an Aboriginal Navigator in Cancer Treatment and Support: A Qualitative Study.

Aboriginal and Torres Strait Islander Australians suffer higher rates of cancer and poorer outcomes than the wider population. These disparities are exacerbated by rurality and remoteness due to reduced access and limited engagement with health services. This study explored the cancer journeys of Aboriginal patients and carers, and their views on the establishment of an Aboriginal Patient Navigator role within the Western Australian healthcare system to support cancer patients and their families. Sixteen Aboriginal participants were interviewed either face to face, by telephone, or via video conferencing platforms. The interviews were then recorded, transcribed, and thematically analyzed using standard qualitative techniques. Close consultation within the research team enhanced the rigour and robustness of the study findings. Patients and carers identified many gaps in cancer service delivery that made their experiences stressful and unnecessarily complex. Challenges included a lack of stable accommodation, financial burdens, constant travel, being "off-Country", and miscommunication with health professionals. Key sources of support and strength were the centrality of family and ongoing cultural connectedness. All participants were supportive of an Aboriginal Patient Navigator role that could address shortfalls in cancer service delivery, especially for patients from rural and remote communities. A culturally safe model of support has the potential to increase access, reduce anxiety and improve health outcomes.

"The support has been brilliant": experiences of Aboriginal and Torres Strait Islander patients attending two high performing cancer services.

BACKGROUND: Improving health outcomes for Indigenous people by providing person-centred, culturally safe care is a crucial challenge for the health sector, both in Australia and internationally. Many cancer providers and support services are committed to providing high quality care, yet struggle with providing accessible, culturally safe cancer care to Indigenous Australians. Two Australian cancer services, one urban and one regional, were identified as particularly focused on providing culturally safe cancer care for Indigenous cancer patients and their families. The article explores the experiences of Indigenous cancer patients and their families within the cancer services and ascertains how their experiences of care matches with the cancer services' strategies to improve care. METHODS: Services were identified as part of a national study designed to identify and assess innovative services for Indigenous cancer patients and their families. Case studies were conducted with a small number of identified services. In-depth interviews were conducted with Indigenous people affected by cancer and hospital staff. The interviews from two services, which stood out as particularly high performing, were analysed through the lens of the patient experience. RESULTS: Eight Indigenous people affected by cancer and 23 hospital staff (Indigenous and non-Indigenous) were interviewed. Three experiences were shared by the majority of Indigenous cancer patients and family members interviewed in this study: a positive experience while receiving treatment at the cancer service; a challenging time between receiving diagnosis and reaching the cancer centre; and the importance of family support, while acknowledging the burden on family and carers. CONCLUSIONS: This article is significant because it demonstrates that with a culturally appropriate and person-centred approach, involving patients, family members, Indigenous and non-Indigenous staff, it is possible for Indigenous people to have positive experiences of cancer care in mainstream, tertiary health services. If we are to improve health outcomes for Indigenous people it is vital more cancer services and hospitals follow the lead of these two services and make a sustained and ongoing commitment to strengthening the cultural safety of their service.

Occurrence and timely management of problems requiring prompt intervention among Indigenous compared with non-Indigenous Australian palliative care patients: a multijurisdictional cohort study.

OBJECTIVES: Anticipation and prompt relief of symptoms among patients with a life-limiting illness is a core element of palliative care. Indigenous Australians commonly encounter cultural barriers in healthcare that may impair outcomes. The Palliative Care Outcomes Collaboration collects patient care data for the purposes of continuous quality improvement and benchmarking, with each recorded care episode divided into phases that reflect a patient's condition. We aimed to investigate differences between Indigenous and non-Indigenous patients in the occurrence and duration of 'unstable' phases (which indicate unanticipated deterioration in a patient's condition or circumstances), and determine attainment of the relevant benchmark (resolution of unstable phases in ≤3 days in 90% of cases) for both groups. DESIGN: Cohort study. SETTING: Australia-wide hospital-based and community-based specialist palliative care (1 January 2010 to 30 June 2015). PARTICIPANTS: 139 556 (1502 Indigenous and 138 054 non-Indigenous) adult patients. OUTCOME MEASURES: Indigenous and non-Indigenous patients were compared on (1) the risk of a phase being categorised as unstable, (2) the duration of unstable phases, and (3) the risk of unstable phases being prolonged (>3 days). Crude and adjusted estimates were produced from three-level robust Poisson regression and complementary log-log discrete time survival models. RESULTS: Unstable phases occurred with similar frequency overall among Indigenous and non-Indigenous patients (adjusted relative risks 1.06; 95% CI 1.00 to 1.11; not significant after correction for multiple comparisons). The duration and risk of prolongation of unstable phases were similar in both patient groups, with no significant differences evident among subgroups. The benchmark was not met for either Indigenous or non-Indigenous patients (unstable phase duration >3 days in 24.3% vs 25.5%; p=0.398). CONCLUSIONS: Despite well-documented shortcomings of healthcare for Indigenous Australians, there is no clear evidence of greater occurrence or prolongation of unanticipated problems among Indigenous patients accessing specialist palliative care services in hospital or the community.

Collaborative data familiarisation and quality assessment: Reflections from use of a national dataset to investigate palliative care for Indigenous Australians.

BACKGROUND: Data quality is fundamental to the integrity of quantitative research. The role of external researchers in data quality assessment (DQA) remains ill-defined in the context of secondary use for research of large, centrally curated health datasets. In order to investigate equity of palliative care provided to Indigenous Australian patients, researchers accessed a now-historical version of a national palliative care dataset developed primarily for the purpose of continuous quality improvement. OBJECTIVES: (i) To apply a generic DQA framework to the dataset and (ii) to report the process and results of this assessment and examine the consequences for conducting the research. METHOD: The data were systematically examined for completeness, consistency and credibility. Data quality issues relevant to the Indigenous identifier and framing of research questions were of particular interest. RESULTS: The dataset comprised 477,518 records of 144,951 patients (Indigenous N = 1515; missing Indigenous identifier N = 4998) collected from participating specialist palliative care services during a period (1 January 2010-30 June 2015) in which data-checking systems underwent substantial upgrades. Progressive improvement in completeness of data over the study period was evident. The data were error-free with respect to many credibility and consistency checks, with anomalies detected reported to data managers. As the proportion of missing values remained substantial for some clinical care variables, multiple imputation procedures were used in subsequent analyses. CONCLUSION AND IMPLICATIONS: In secondary use of large curated datasets, DQA by external researchers may both influence proposed analytical methods and contribute to improvement of data curation processes through feedback to data managers.

Beyond the black stump: rapid reviews of health research issues affecting regional, rural and remote Australia.

CHAPTER 1: RETAIL INITIATIVES TO IMPROVE THE HEALTHINESS OF FOOD ENVIRONMENTS IN RURAL, REGIONAL AND REMOTE COMMUNITIES: Objective: To synthesise the evidence for effectiveness of initiatives aimed at improving food retail environments and consumer dietary behaviour in rural, regional and remote populations in Australia and comparable countries, and to discuss the implications for future food environment initiatives for rural, regional and remote areas of Australia. STUDY DESIGN: Rapid review of articles published between January 2000 and May 2020. DATA SOURCES: We searched MEDLINE (EBSCOhost), Health and Society Database (Informit) and Rural and Remote Health Database (Informit), and included studies undertaken in rural food environment settings in Australia and other countries. DATA SYNTHESIS: Twenty-one articles met the inclusion criteria, including five conducted in Australia. Four of the Australian studies were conducted in very remote populations and in grocery stores, and one was conducted in regional Australia. All of the overseas studies were conducted in rural North America. All of them revealed a positive influence on food environment or consumer behaviour, and all were conducted in disadvantaged, rural communities. Positive outcomes were consistently revealed by studies of initiatives that focused on promotion and awareness of healthy foods and included co-design to generate community ownership and branding. CONCLUSION: Initiatives aimed at improving rural food retail environments were effective and, when implemented in different rural settings, may encourage improvements in population diets. The paucity of studies over the past 20 years in Australia shows a need for more research into effective food retail environment initiatives, modelled on examples from overseas, with studies needed across all levels of remoteness in Australia. Several retail initiatives that were undertaken in rural North America could be replicated in rural Australia and could underpin future research. CHAPTER 2: WHICH INTERVENTIONS BEST SUPPORT THE HEALTH AND WELLBEING NEEDS OF RURAL POPULATIONS EXPERIENCING NATURAL DISASTERS?: Objective: To explore and evaluate health and social care interventions delivered to rural and remote communities experiencing natural disasters in Australia and other high income countries. STUDY DESIGN: We used systematic rapid review methods. First we identified a test set of citations and generated a frequency table of Medical Subject Headings (MeSH) to index articles. Then we used combinations of MeSH terms and keywords to search the MEDLINE (Ovid) database, and screened the titles and abstracts of the retrieved references. DATA SOURCES: We identified 1438 articles via database searches, and a further 62 articles via hand searching of key journals and reference lists. We also found four relevant grey literature resources. After removing duplicates and undertaking two stages of screening, we included 28 studies in a synthesis of qualitative evidence. DATA SYNTHESIS: Four of us read and assessed the full text articles. We then conducted a thematic analysis using the three phases of the natural disaster response cycle. CONCLUSION: There is a lack of robust evaluation of programs and interventions supporting the health and wellbeing of people in rural communities affected by natural disasters. To address the cumulative and long term impacts, evidence suggests that continuous support of people's health and wellbeing is needed. By using a lens of rural adversity, the complexity of the lived experience of natural disasters by rural residents can be better understood and can inform development of new models of community-based and integrated care services. CHAPTER 3: THE IMPACT OF BUSHFIRE ON THE WELLBEING OF CHILDREN LIVING IN RURAL AND REMOTE AUSTRALIA: Objective: To investigate the impact of bushfire events on the wellbeing of children living in rural and remote Australia. STUDY DESIGN: Literature review completed using rapid realist review methods, and taking into consideration the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement for systematic reviews. DATA SOURCES: We sourced data from six databases: EBSCOhost (Education), EBSCOhost (Health), EBSCOhost (Psychology), Informit, MEDLINE and PsycINFO. We developed search terms to identify articles that could address the research question based on the inclusion criteria of peer reviewed full text journal articles published in English between 1983 and 2020. We initially identified 60 studies and, following closer review, extracted data from eight studies that met the inclusion criteria. DATA SYNTHESIS: Children exposed to bushfires may be at increased risk of poorer wellbeing outcomes. Findings suggest that the impact of bushfire exposure may not be apparent in the short term but may become more pronounced later in life. Children particularly at risk are those from more vulnerable backgrounds who may have compounding factors that limit their ability to overcome bushfire trauma. CONCLUSION: We identified the short, medium and long term impacts of bushfire exposure on the wellbeing of children in Australia. We did not identify any evidence-based interventions for supporting outcomes for this population. Given the likely increase in bushfire events in Australia, research into effective interventions should be a priority. CHAPTER 4: THE ROLE OF NATIONAL POLICIES TO ADDRESS RURAL ALLIED HEALTH, NURSING AND DENTISTRY WORKFORCE MALDISTRIBUTION: Objective: Maldistribution of the health workforce between rural, remote and metropolitan communities contributes to longstanding health inequalities. Many developed countries have implemented policies to encourage health care professionals to work in rural and remote communities. This scoping review is an international synthesis of those policies, examining their effectiveness at recruiting and retaining nursing, dental and allied health professionals in rural communities. STUDY DESIGN: Using scoping review methods, we included primary research - published between 1 September 2009 and 30 June 2020 - that reported an evaluation of existing policy initiatives to address workforce maldistribution in high income countries with a land mass greater than 100 000 km2 . DATA SOURCES: We searched MEDLINE, Ovid Embase, Ovid Emcare, Informit, Scopus, and Web of Science. We screened 5169 articles for inclusion by title and abstract, of which we included 297 for full text screening. We then extracted data on 51 studies that had been conducted in Australia, the United States, Canada, United Kingdom and Norway. DATA SYNTHESIS: We grouped the studies based on World Health Organization recommendations on recruitment and retention of health care workers: education strategies (n = 27), regulatory change (n = 11), financial incentives (n = 6), personal and professional support (n = 4), and approaches with multiple components (n = 3). CONCLUSION: Considerable work has occurred to address workforce maldistribution at a local level, underpinned by good practice guidelines, but rarely at scale or with explicit links to coherent overarching policy. To achieve policy aspirations, multiple synergistic evidence-based initiatives are needed, and implementation must be accompanied by well designed longitudinal evaluations that assess the effectiveness of policy objectives. CHAPTER 5: AVAILABILITY AND CHARACTERISTICS OF PUBLICLY AVAILABLE HEALTH WORKFORCE DATA SOURCES IN AUSTRALIA: Objective: Many data sources are used in Australia to inform health workforce planning, but their characteristics in terms of relevance, accessibility and accuracy are uncertain. We aimed to identify and appraise publicly available data sources used to describe the Australian health workforce. STUDY DESIGN: We conducted a scoping review in which we searched bibliographic databases, websites and grey literature. Two reviewers independently undertook title and abstract screening and full text screening using Covidence software. We then assessed the relevance, accessibility and accuracy of data sources using a customised appraisal tool. DATA SOURCES: We searched for potential workforce data sources in nine databases (MEDLINE, Embase, Ovid Emcare, Scopus, Web of Science, Informit, the JBI Evidence-based Practice Database, PsycINFO and the Cochrane Library) and the grey literature, and examined several pre-defined websites. DATA SYNTHESIS: During the screening process we identified 6955 abstracts and examined 48 websites, from which we identified 12 publicly available data sources - eight primary and four secondary data sources. The primary data sources were generally of modest quality, with low scores in terms of reference period, accessibility and missing data. No single primary data source scored well across all domains of the appraisal tool. CONCLUSION: We identified several limitations of data sources used to describe the Australian health workforce. Establishment of a high quality, longitudinal, linked database that can inform all aspects of health workforce development is urgently needed, particularly for rural health workforce and services planning. CHAPTER 6: RAPID REALIST REVIEW OF OPIOID TAPERING IN THE CONTEXT OF LONG TERM OPIOID USE FOR NON-CANCER PAIN IN RURAL AREAS: Objective: To describe interventions, barriers and enablers associated with opioid tapering for patients with chronic non-cancer pain in rural primary care settings. STUDY DESIGN: Rapid realist review registered on the international register of systematic reviews (PROSPERO) and conducted in accordance with RAMESES standards. DATA SOURCES: English language, peer-reviewed articles reporting qualitative, quantitative and mixed method studies, published between January 2016 and July 2020, and accessed via MEDLINE, Embase, CINAHL Complete, PsycINFO, Informit or the Cochrane Library during June and July 2020. Grey literature relating to prescribing,deprescribing or tapering of opioids in chronic non-cancer pain, published between January 2016 and July 2020, was identified by searching national and international government, health service and peek organisation websites using Google Scholar. DATA SYNTHESIS: Our analysis of reported approaches to tapering conducted across rural and non-rural contexts showed that tapering opioids is complex and challenging, and identified several barriers and enablers. Successful outcomes in rural areas appear likely through therapeutic relationships, coordination and support, by using modalities and models of care that are appropriate in rural settings and by paying attention to harm minimisation. CONCLUSION: Rural primary care providers do not have access to resources available in metropolitan centres for dealing with patients who have chronic non-cancer pain and are taking opioid medications. They often operate alone or in small group practices, without peer support and access to multidisciplinary and specialist teams. Opioid tapering approaches described in the literature include regulation, multimodal and multidisciplinary approaches, primary care provider support, guidelines, and patient-centred strategies. There is little research to inform tapering in rural contexts. Our review provides a synthesis of the current evidence in the form of a conceptual model. This preliminary model could inform the development of a model of care for use in implementation research, which could test a variety of mechanisms for supporting decision making, reducing primary care providers' concerns about potential harms arising from opioid tapering, and improving patient outcomes.

"We're very much part of the team here": A culture of respect for Indigenous health workforce transforms Indigenous health care.

BACKGROUND: Improving health outcomes for Indigenous people by strengthening the cultural safety of care is a vital challenge for the health sector, both in Australia and internationally. Although Indigenous people have long requested to have Indigenous practitioners involved in their health care, many health services report difficulties with recruiting and retaining Indigenous staff. This article describes Indigenous workforce policies and strategies from two Australian health services, as well as cancer-service specific strategies. METHODS: Services were identified as part of a national study designed to identify and assess innovative services for Indigenous cancer patients and their families. In-depth interviews were conducted in a small number of identified services. The interviews from two services, which stood out as particularly high performing, were analysed through the lens of Indigenous health workforce. RESULTS: Twenty-four hospital staff (Indigenous and non-Indigenous), five Indigenous people with cancer and three family members shared their views and experiences. Eight themes were identified from the way that the two services supported their Indigenous workforce: strong executive leadership, a proactive employment strategy, the Indigenous Health Unit, the Indigenous Liaison Officer, multidisciplinary team inclusion, professional development, work environment and a culture of respect. Participants reported two positive outcomes resulting from the active implementation of the eight workforce themes: 'Improved Indigenous patient outcomes' and 'Improved staff outcomes'. CONCLUSIONS: These two cancer services and their affiliated hospitals show how positive patient outcomes and a strong Indigenous health workforce can be achieved when a health service has strong leadership, commits to an inclusive and enabling culture, facilitates two-way learning and develops specific support structures appropriate for Indigenous staff. It is hoped that the strategies captured in this study will be used by health services and cancer services to inform their own policies and programs to support building their Indigenous workforce.

Symptom-Related Distress among Indigenous Australians in Specialist End-of-Life Care: Findings from the Multi-Jurisdictional Palliative Care Outcomes Collaboration Data.

Symptom relief is fundamental to palliative care. Aboriginal and Torres Strait Islander (Indigenous) Australians are known to experience inequities in health care delivery and outcomes, but large-scale studies of end-of-life symptoms in this population are lacking. We compared symptom-related distress among Indigenous and non-Indigenous Australian patients in specialist palliative care using the multi-jurisdictional Palliative Care Outcomes Collaboration dataset. Based on patient-reported rating scale responses, adjusted relative risks (aRRs) stratified by care setting were calculated for occurrence of (i) symptom-related moderate-to-severe distress and worsening distress during a first episode of care and (ii) symptom-related moderate-to-severe distress at the final pre-death assessment. The p-value significance threshold was corrected for multiple comparisons. First-episode frequencies of symptom-related distress were similar among Indigenous (n = 1180) and non-Indigenous (n = 107,952) patients in both inpatient and community settings. In final pre-death assessments (681 Indigenous and 67,339 non-Indigenous patients), both groups had similar occurrence of moderate-to-severe distress when care was provided in hospital. In community settings, Indigenous compared with non-Indigenous patients had lower pre-death risks of moderate-to-severe distress from overall symptom occurrence (aRR 0.78; p = 0.001; confidence interval [CI] 0.67-0.91). These findings provide reassurance of reasonable equivalence of end-of-life outcomes for Indigenous patients who have been accepted for specialist palliative care.

Unmet supportive care needs among Indigenous cancer patients across Australia.

INTRODUCTION: Indigenous Australians with cancer tend to be diagnosed with more aggressive and advanced-stage disease, receive less treatment, have poorer survival and lower quality of life than other Australians. Reducing these inequalities requires an understanding of the supportive care needs of this cancer group. This study aims to describe the type and extent of unmet supportive care needs of Indigenous Australian cancer patients. METHOD: A multicentre, cross-sectional study recruited 145 Indigenous adults diagnosed with cancer in the previous 5 years in four Australian states and territories. Using a culturally specific tool, unmet needs were assessed in four domains: 'physical and psychological', 'hospital care', 'information and communication' and 'practical and cultural'. Moderate to high unmet need is that which requires some or a lot more help to be addressed. RESULTS: Two-thirds (65%) of patients reported at least one moderate to high unmet need and 20% of patients had moderate to high unmet needs with five or more items. Overall, patients most commonly reported moderate to high unmet needs in the physical/psychological (46%) and practical/cultural domains (34%), than the information/communication (23%) and hospital care domains (16%). More specifically, 'money worries' was the most frequently reported moderate to high unmet need (20%). CONCLUSION: Most Indigenous Australians living with cancer experience unmet supportive care needs. Physical/psychological and practical/cultural concerns were identified as priority areas for Indigenous cancer patients. These findings may inform priority areas for intervention towards optimal care pathways for Indigenous Australians diagnosed and living with cancer.

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.

Feasibility and acceptability of opportunistic screening to detect atrial fibrillation in Aboriginal adults.

OBJECTIVE: Examine the feasibility and acceptability of an electrocardiogram (ECG) attached to a mobile phone (iECG) screening device for atrial fibrillation (AF) in Aboriginal Controlled Community Health Services (ACCHS) and other community settings. METHODS: Semi-structured interviews were conducted with ACCHS staff in urban, rural and remote communities in three Australian states/territories. Quantitative and qualitative questions identified the enabling factors and barriers for staff and Aboriginal patients' receptiveness to the device. Mean quantitative scores and their standard deviation were calculated in Microsoft Excel and qualitative questions were thematically analysed. RESULTS: Eighteen interviews were conducted with 23 staff across 11 ACCHS. Quantitative data found staff were confident in providing iECG screening and managing the referral pathway, and thought the process was beneficial for patients. Qualitative data highlighted the usefulness of the device to undertake opportunistic screening and acceptability in routine practice, and provided opportunities to engage patients in education around AF. CONCLUSION: The iECG device was well accepted within ACCHSs and was feasible to use to screen for AF among Aboriginal patients. Implications for public health: The device can be used in clinical and community settings to screen Aboriginal people for atrial fibrillation to help reduce rates of stroke and other cardiovascular diseases.

The association between mammographic density and breast cancer risk in Western Australian Aboriginal women.

PURPOSE: Mammographic density is an established breast cancer risk factor within many ethnically different populations. The distribution of mammographic density has been shown to be significantly lower in Western Australian Aboriginal women compared to age- and screening location-matched non-Aboriginal women. Whether mammographic density is a predictor of breast cancer risk in Aboriginal women is unknown. METHODS: We measured mammographic density from 103 Aboriginal breast cancer cases and 327 Aboriginal controls, 341 non-Aboriginal cases, and 333 non-Aboriginal controls selected from the BreastScreen Western Australia database using the Cumulus software program. Logistic regression was used to examine the associations of percentage dense area and absolute dense area with breast cancer risk for Aboriginal and non-Aboriginal women separately, adjusting for covariates. RESULTS: Both percentage density and absolute dense area were strongly predictive of risk in Aboriginal women with odds per adjusted standard deviation (OPERAS) of 1.36 (95% CI 1.09, 1.69) and 1.36 (95% CI 1.08, 1.71), respectively. For non-Aboriginal women, the OPERAS were 1.22 (95% CI 1.03, 1.46) and 1.26 (95% CI 1.05, 1.50), respectively. CONCLUSIONS: Whilst mean mammographic density for Aboriginal women is lower than non-Aboriginal women, density measures are still higher in Aboriginal women with breast cancer compared to Aboriginal women without breast cancer. Thus, mammographic density strongly predicts breast cancer risk in Aboriginal women. Future efforts to predict breast cancer risk using mammographic density or standardize risk-associated mammographic density measures should take into account Aboriginal status when applicable.

A Pragmatic Review to Assist Planning and Practice in Delivering Nutrition Education to Indigenous Youth.

Many health promotion campaigns have incorporated multi-component nutrition interventions to promote healthy diet-related behaviours among Indigenous communities, particularly children and adolescents. However, these campaigns show mixed results and while research often describes outcomes of approaches and interventions, it does not extensively describe implementation processes and best practices for nutrition education for Indigenous youth. To enhance knowledge and understanding of best processes in nutritional education approaches with Indigenous youth, we conducted a search using multiple databases including PubMed, Google Scholar, the Australian Indigenous HealthInfoNet and Australian government research databases to identify relevant peer-reviewed and grey literature as well as educational resources, such as websites and handbooks for teachers, parents, and students. We list and describe common features of successful nutritional interventions in Indigenous settings, steps for nutrition education targeting youth, school-based nutrition education for different ages, and general guidelines for teaching Indigenous students. Current best practice and knowledge gaps for the delivery of nutrition education to Indigenous youth are described.

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.

Cancer support services: Are they meeting the needs of rural radiotherapy patients?

This paper examines the supportive care in place to meet the needs of patients receiving radiotherapy at a regional oncology service in Bunbury, Western Australia. Semi-structured in-depth interviews with 21 service providers and 17 adults diagnosed with cancer who underwent radiotherapy at the Service were recorded, transcribed and analysed thematically. Key themes relevant were co-operation and collaboration of interdisciplinary team members; support from organisations to assist with accommodation, transport, emotional support and provision of practical assistance, as well as barriers to accessing support. Most participants were positive about the support available, recognising the needs of rural radiotherapy patients for assistance with travel, accommodation and psychosocial support to help deal with the stressors they face. Collaboration between the various service providers maximised the support available to patients but the drop off in psychosocial support once the intensity of treatment was completed was identified as a weakness in the support available. The support system, established around a regional radiotherapy service, was enhanced by the collaborative professional relationships developed among service providers. The service extends beyond clinical service delivery by recognising financial, logistical and psychosocial support needs, factors to be considered to ensure rural radiotherapy patients are provided with holistic care.

Delay in commencement of palliative care service episodes provided to Indigenous and non-Indigenous patients: cross-sectional analysis of an Australian multi-jurisdictional dataset.

BACKGROUND: Rapid effective responsiveness to patient needs is pivotal to high quality palliative care. Aboriginal and Torres Strait Islander (Indigenous) people are susceptible to life-limiting illnesses at younger ages than other Australians and experience inequity of health service provision. The Palliative Care Outcomes Collaboration collects Australia-wide health service data on patient care, and has established performance benchmarks for specialist palliative care services. We investigated whether the benchmark for timely commencement of palliative care episodes (occurrence of delay >1 day after being designated 'ready for care' in <10% instances) is being met for Indigenous Australians in participating services. Additionally, we investigated the association between identification as Indigenous and delay. METHODS: Using multi-jurisdictional Palliative Care Outcomes Collaboration data, this cross-sectional analytical study investigated all episodes of care (n = 84,238) provided to patients ≥18 years (n = 61,073: Indigenous n = 645) in hospital and community settings commenced and completed during the period 01/07/2013-30/06/2015. Proportions of episodes resulting in delay were determined. Crude and adjusted odds of delay among Indigenous compared with non-Indigenous patients were investigated using multiple logistic regression, with missing data handled by multiple imputation. RESULTS: The benchmark was met for both Indigenous and non-Indigenous patients (delay in 8.3 and 8.4% episodes respectively). However, the likelihood of delay was modestly higher in episodes provided to Indigenous than non-Indigenous patients (adjusted odds ratio [aOR], 1.41; 95% confidence interval [CI] 1.07-1.86). Excess delay among Indigenous patients was accentuated in first episodes (aOR, 1.53; 95% CI 1.14-2.06), in patients aged < 65 years (aOR, 1.66; 95% CI 1.14-2.41), and among those residing in Inner Regional areas (aOR, 1.97; 95% CI 1.19-3.28), and also approached significance among those in outer regional, remote and very remote areas collectively (aOR, 1.72; CI 0.97-3.05). CONCLUSIONS: Although the timeliness benchmark is being met for Indigenous Australians in palliative care, they may experience delayed initiation of care episodes, particularly if younger, and especially at first encounter with a service. Qualitative research is required to explore determinants of delay in initiating palliative care episodes. The timeliness of initial referral for specialist palliative care in this population remains to be determined.

Australian cancer services: a survey of providers' efforts to meet the needs of Indigenous patients.

OBJECTIVE: To examine where Indigenous Australians undergo cancer treatment and learn about specific service initiatives that have been implemented to meet their needs. METHODS: Public cancer treatment centres across Australia were invited to participate in an online survey about various characteristics of their centre, including the type of service provided, Indigenous patient numbers and policy, and implementation of Indigenous-specific initiatives. RESULTS: Surveys were completed for 58 of 125 public cancer treatment centres. Almost half (47%) of the services saw more than 10 Indigenous patients per year, although Indigenous patients generally represented a small minority of patients. The most commonly reported initiatives were "having links with Indigenous health organisations in the community" (74% of services), "making a dedicated effort to address the needs of Indigenous patients" (69%) and proactively "creating partnerships with Indigenous communities and health organisations" (69%). CONCLUSIONS: The majority of respondents indicated that they were working to meet the needs of Indigenous patients and were interested in learning strategies from others to improve their services. More work is needed to describe and evaluate the specific initiatives that have been implemented. Implications for public health: Information from this study can assist cancer service providers to identify gaps in current services, plan new service delivery initiatives and ultimately improve Indigenous cancer outcomes.

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.