The Fabric of Aboriginal and Torres Strait Islander Wellbeing: A Conceptual Model.

Wellbeing is culturally bound and is shaped by many aspects of life, including experiences, beliefs and values. As such, in order to accurately measure wellbeing for a specific cultural group, it is necessary to understand the experiences, beliefs and values that influence the conception and experience of wellbeing of that group. This paper presents a conceptual model of wellbeing for Aboriginal and Torres Strait Islander people, which was developed from a large national qualitative study that explored the views of 359 Aboriginal and Torres Strait Islander adults. An Aboriginal- and Torres Strait Islander-led research team used an Indigenist research approach to iteratively develop this conceptual model, called the Fabric of Aboriginal and Torres Strait Islander Wellbeing model, which takes inspiration from Aboriginal and Torres Strait Islander weaving traditions whereby individual strands are twined to create fabrics that are both beautiful and strong. This reflects our findings that the parts of life that are most important to wellbeing for many Aboriginal and Torres Strait Islander people are interwoven with their families, communities and culture.

Study protocol: Yarning about HPV Vaccination: a qualitative study of factors influencing HPV vaccination among Aboriginal and Torres Strait Islander adolescents in Australia.

INTRODUCTION: Aboriginal and Torres Strait Islander women experience a higher burden of cervical cancer than non-Indigenous women in Australia. Cervical cancer is preventable partly through human papillomavirus (HPV) vaccination; in Australia, this is delivered through the national school-based immunisation programme. While HPV vaccination uptake is high among Australian adolescents, there remain gaps in uptake and completion among Aboriginal and Torres Strait Islander adolescents. This study aims to gain a comprehensive understanding of the barriers and facilitators to HPV vaccination uptake and completion among Aboriginal and Torres Strait Islander adolescents in Queensland, Australia. METHODS AND ANALYSIS: The study will be guided by an Indigenist research approach and an ecological model for health promotion. Yarning, a qualitative Indigenous research method, will be conducted in up to 10 schools. Participants will include Year 7 (12/13 years old) Aboriginal and Torres Strait Islander adolescents; parents/caregivers; and local key informants and immunisation programme partners involved in the delivery of school-based HPV immunisation programme. Participants will be recruited through school representatives and investigator networks using purposive and snowball sampling and samples of convenience. Field notes, HPV vaccination clinic observations and sequential diagramming of the HPV vaccination process will be conducted. Thematic analysis of data will be led by Aboriginal and Torres Strait Islander researchers. Synthesised sequential diagrams of the process of HPV vaccination and qualitative themes summarising key findings will be produced. ETHICS AND DISSEMINATION: The Aboriginal Health and Medical Research Council of New South Wales Ethics Committee (1646/20), the Australian National University Human Research Ethics Committee (HREC, 2020/478), the HREC of the Northern Territory Department of Health and Menzies School of Health Research (19-3484) and the Townsville Hospital and Health Service HREC (HREC/QTHS/73789) have approved the study. Dissemination will occur via conferences and peer-reviewed publications. Further dissemination will be determined in partnership with the Aboriginal and Torres Strait Islander Steering Committee, including Youth Representatives and Consultation Network.

What Matters 2 Adults (WM2Adults): Understanding the Foundations of Aboriginal and Torres Strait Islander Wellbeing.

Aboriginal and Torres Strait Islander people experience a greater range of health and social disadvantages compared to other Australians. Wellbeing is a culturally-bound construct, and to date, a national evidence base around the components of wellbeing for Aboriginal and Torres Strait Islander people is lacking. Understanding and measurement of wellbeing for this population is critical in achieving health equity. This paper aims to identify and describe the foundations of wellbeing for Aboriginal and Torres Strait Islander adults. This national qualitative study was underpinned by an Indigenist research approach which privileges the voices of Aboriginal and Torres Strait Islander people. Aboriginal and Torres Strait Islander adults were purposively recruited from around Australia between September 2017 and September 2018 to participate in Yarning Circles, led by Aboriginal and Torres Strait Islander researchers. Yarning Circles were audio recorded, transcribed and analyzed. A Collaborative Yarning Methodology was used, which incorporated reflexive thematic analysis to identify and describe the foundations of wellbeing reported by participants. A total of 359 Aboriginal and Torres Strait Islander adults participated. Our analysis revealed five foundations of wellbeing: belonging and connection; holistic health; purpose and control; dignity and respect; and basic needs. These foundations were deeply interwoven by three interconnected aspects of Aboriginal and Torres Strait Islander life: family, community and culture. The findings of this study will substantially aid our efforts to develop a new wellbeing measure for Aboriginal and Torres Strait Islander adults. The iterative Indigenist methods used in this study provide a robust research methodology for conducting large-scale, nationally-relevant qualitative research with Aboriginal and Torres Strait Islander people. Policies and practices that are informed by our results have the potential to address outcomes that are meaningful for Aboriginal and Torres Strait Islander people.

Do remote dialysis services really cost more? An economic analysis of hospital and dialysis modality costs associated with dialysis services in urban, rural and remote settings.

BACKGROUND: Rates of end-stage kidney disease in Australia are highest in the Northern Territory (NT), with the burden of disease heaviest in remote areas. However, the high cost of delivering dialysis services in remote areas has resulted in centralisation, requiring many people to relocate for treatment. Patients argue that treatment closer to home improves health outcomes and reduces downstream healthcare use. Existing dialysis cost studies have not compared total health care costs associated with treatment in different locations. OBJECTIVE: To estimate and compare, from a payer perspective, the observed health service costs (all cause hospital admissions, emergency department presentations and maintenance dialysis) associated with different dialysis models in urban, rural and remote locations. METHODS: Using cost weights attributed to diagnostic codes in the NT Department of Health's hospital admission data set (2008-2014), we calculated the mean (SD) total annual health service costs by dialysis model for 995 dialysis patients. Generalized linear modeling with bootstrapping tested the marginal cost differences between different explanatory variables to estimate 'best casemix'/'worst casemix' cost scenarios. RESULTS: The mean annual patient hospital expenditure was highest for urban models at $97 928 (SD $21 261) and $43 440 (SD $5 048) and lowest for remote at $19 584 (SD $4 394). When combined with the observed maintenance dialysis costs, expenditure was the highest for urban models at $148 510 (SD $19 774). The incremental cost increase of dialysing in an urban area, compared with a rural area, for a relocated person from a remote area, was $5 648 more and increased further for those from remote and very remote areas to $10 785 and $15 118 respectively. CONCLUSIONS: This study demonstrates that dialysis treatment in urban areas for relocated people has health and cost implications that maybe greater than the cost of remote service delivery. The study emphasises the importance of considering all health service costs and cost consequences of service delivery models. KEY POINTS FOR DECISION MAKERS: Relocation for dialysis treatment has serious health and economic consequences. Relocated people have low dialysis attendance and high hospital costs in urban areas. While remote dialysis service models are more expensive than urban models, the comparative cost differences are significantly reduced when all health service costs are included. The delivery of equitable and accessible dialysis service models requires a holistic approach that incorporates the needs of the patient; hence dialysis cost studies must consider the full range of cost impacts beyond the dialysis treatments alone.

Most people requiring ongoing treatment for end-stage kidney disease in the Northern Territory (NT) identify as Aboriginal with the majority residing in areas classified as remote or very remote. Unlike other jurisdictions in Australia, haemodialysis in a satellite unit is the most common form of treatment. However, there is a geographic mismatch between demand and service provision, with services centralised in urban areas. Patients and communities have long advocated for services at or closer to home, maintaining that the consequences of relocation and dislocation have far reaching health, psychosocial and economic ramifications. We analysed retrospective hospital data for 995 maintenance dialysis patients, stratified by the model of care they received in urban, rural and remote locations. Using cost weights attributed to diagnosis codes, we costed hospital admissions, emergency department presentations and maintenance dialysis attendances, to provide a mean total health service cost/patient/year for each model of care. We found that urban services were associated with low observed maintenance dialysis and high hospital costs, but the inverse was true for remote and very remote models. Remote models had high maintenance dialysis costs (due to expense of remote service delivery and good dialysis attendance) but low hospital usage and costs. When adjusted for other variables such as age, dialysis vintage and comorbidities, lower total hospital costs were associated with rural and remote service provision. In an environment of escalating demand and constrained budgets, this study underlines the need for policy decisions to consider the full cost consequences of different dialysis service models.

Are there systematic barriers to participation in cancer treatment trials by Aboriginal and Torres Strait Islander cancer patients in Australia?

OBJECTIVE: To identify factors that may systematically reduce opportunities for Aboriginal and Torres Strait Islander Australians to participate in cancer clinical trials. METHODS: Analysis of online documents from the Australia and New Zealand Clinical Trials Registry for cancer treatment trials (Phase 3, 4 or Not Applicable) with at least one Australian site, registered in 2014-2018. RESULTS: Among 365 eligible trials, most (89%) had sites only in major cities/inner regional areas, but 39% of Aboriginal and Torres Strait Islander Australians live outside these areas. Seven cancer types accounted for 58% of cancers among Aboriginal and Torres Strait Islander people, but only 46% of trials addressed these cancers. Most trials specified exclusions relating to comorbidities/health status. A substantial minority of trials (38%) explicitly referred to investigator opinion/judgment as a relevant determinant of patient eligibility. CONCLUSION: Aboriginal and Torres Strait Islander patients appear to have a reduced opportunity to participate in trials because of where they live, their type of cancer and their general health status, as well as for less transparent reasons relating to investigator judgment. Implications for public health: Greater transparency and greater scrutiny of barriers to trial participation for Aboriginal and Torres Strait Islander Australians are needed to ensure equitable access.

What Matters 2 Adults: a study protocol to develop a new preference-based wellbeing measure with Aboriginal and Torres Strait Islander adults (WM2Adults).

BACKGROUND: Understandings of health and wellbeing are culturally bound. Many Aboriginal and Torres Strait Islander people perceive wellbeing and quality of life (QOL) differently from the Western biomedical models of health underpinning existing QOL instruments. Any instrument to measure the wellbeing of Aboriginal and Torres Strait Islander people should be culturally appropriate and safe, include relevant dimensions, and be informed by their own values and preferences. Existing QOL instruments do not meet these standards. This study will generate a new preference-based wellbeing measure, WM2Adults, for Aboriginal and Torres Strait Islander adults, underpinned by their values and preferences. METHODS: A mixed methods approach will be used; we will employ decolonising methodologies, privilege Aboriginal and Torres Strait Islander voices and perspectives, and adopt a strengths-based approach rather than a deficit lens. Yarning Circles will be conducted with Aboriginal and Torres Strait Islander people across Australia. A candidate item pool will be developed from these data, on which psychometric analysis and validity testing will be undertaken to develop a descriptive system. Following finalisation of the descriptive system, wellbeing states will be valued using a quantitative preference-based approach (best-worst scaling) with a diverse sample of Aboriginal and Torres Strait Islander adults (n = 1000). A multinomial (conditional) logit framework will be used to analyse responses and generate a scoring algorithm for the new preference-based WM2Adults measure. DISCUSSION: The new wellbeing measure will have wide applicability in assessing the effectiveness and cost-effectiveness of new programs and services for Aboriginal and Torres Strait Islander people. Results will be disseminated through journals, conferences and policy forums, and will be shared with Aboriginal and Torres Strait Islander communities, organisations and research participants.

Performance of cardiovascular risk prediction equations in Indigenous Australians.

OBJECTIVE: To assess the performance of cardiovascular disease (CVD) risk equations in Indigenous Australians. METHODS: We conducted an individual participant meta-analysis using longitudinal data of 3618 Indigenous Australians (55% women) aged 30-74 years without CVD from population-based cohorts of the Cardiovascular Risk in IndigenouS People(CRISP) consortium. Predicted risk was calculated using: 1991 and 2008 Framingham Heart Study (FHS), the Pooled Cohorts (PC), GloboRisk and the Central Australian Rural Practitioners Association (CARPA) modification of the FHS equation. Calibration, discrimination and diagnostic accuracy were evaluated. Risks were calculated with and without the use of clinical criteria to identify high-risk individuals. RESULTS: When applied without clinical criteria, all equations, except the CARPA-adjusted FHS, underestimated CVD risk (range of percentage difference between observed and predicted CVD risks: -55% to -14%), with underestimation greater in women (-63% to -13%) than men (-47% to -18%) and in younger age groups. Discrimination ranged from 0.66 to 0.72. The CARPA-adjusted FHS equation showed good calibration but overestimated risk in younger people, those without diabetes and those not at high clinical risk. When clinical criteria were used with risk equations, the CARPA-adjusted FHS algorithm scored 64% of those who had CVD events as high risk; corresponding figures for the 1991-FHS were 58% and were 87% for the PC equation for non-Hispanic whites. However, specificity fell. CONCLUSION: The CARPA-adjusted FHS CVD risk equation and clinical criteria performed the best, achieving higher combined sensitivity and specificity than other equations. However, future research should investigate whether modifications to this algorithm combination might lead to improved risk prediction.

The patient co-payment and opportunity costs of accessing healthcare for Indigenous Australians with cancer: A whole of population data linkage study.

AIM: To quantify the direct out-of-pocket patient co-payments and time opportunity costs (length of hospital stay) incurred by Indigenous and non-Indigenous persons diagnosed with cancer during the first year postdiagnosis. METHODS: CancerCostMod was used, which is a model of cancer costs based upon a whole-of-population data linkage. The base population was a census of all persons diagnosed with cancer in Queensland, Australia between 1 July 2011 and 30 June 2012 (n = 25,553). Individual records were linked to corresponding Queensland Health Admitted Patient Data Collection, Emergency Data Information System, Medicare Benefits Schedule, and Pharmaceutical Benefits Scheme records between 1 July 2011 and 30 June 2015. Queensland data were weighted to be representative of the Australian population (approximately 123,900 Australians, 1.7% Indigenous Australians). RESULTS: After adjusting for age, sex, rurality, area-based deprivation, and cancer group, Indigenous Australians accrued significantly less in postdiagnosis patient co-payments at 0-6 months (61% less) and 7-12 months (63% less). Indigenous Australians also had significantly fewer postdiagnosis hospitalizations at 0-6 months (21% fewer) and 7-12 months (27% fewer). CONCLUSION: There is growing concern regarding the financial burden of cancer to the patient. The time spent away from family and their community may also have an important time opportunity cost, which may affect a person's decision to undertake or continue treatment. This is the first study in Australia to identify the financial cost of co-payments for Indigenous people with cancer, as well as the number and length of hospitalizations as drivers of time opportunity costs.

Aboriginal and Torres Strait Islander people's domains of wellbeing: A comprehensive literature review.

There are significant health and social disparities between the world's Indigenous and non-Indigenous people on factors likely to influence quality of life (QOL) and wellbeing. However, these disparities in wellbeing are not captured in conventional QOL instruments, as they often do not include dimensions that are likely to be relevant to Indigenous people. The objective of this comprehensive literature review was to identify these wellbeing domains for Aboriginal and Torres Strait Islander people in Australia (hereafter, respectfully referred to collectively as Indigenous Australians). We searched PsycINFO, MEDLINE, Econlit, CINAHL, and Embase (from inception to June 2017, and updated in March 2019), and grey literature sources using keywords relating to adult Indigenous Australians' QOL and wellbeing. From 278 full-text articles assessed for eligibility, 95 were included in a thematic analysis. This synthesis revealed nine broad interconnected wellbeing dimensions: autonomy, empowerment and recognition; family and community; culture, spirituality and identity; Country; basic needs; work, roles and responsibilities; education; physical health; and mental health. The findings suggest domains of wellbeing relevant to and valued by Indigenous Australians that may not be included in existing QOL and wellbeing instruments, domains that may be shared with Indigenous populations globally. This indicates the need for a tailored wellbeing instrument that includes factors relevant to Indigenous Australians. Developing such an instrument will ensure meaningful, culturally-relevant measurement of Indigenous Australians' wellbeing.

Long-term out of pocket expenditure of people with cancer: comparing health service cost and use for indigenous and non-indigenous people with cancer in Australia.

BACKGROUND: Indigenous Australians diagnosed with cancer have poorer survival compared to non-Indigenous Australians. We aim to: 1) identify differences by Indigenous status in out-of-pocket expenditure for the first three-years post-diagnosis; 2) identify differences in the quantity and cost of healthcare services accessed; and 3) estimate the number of additional services required if access was equal between Indigenous and non-Indigenous people with cancer. METHODS: We used CancerCostMod, a model using linked administrative data. The base population was all persons diagnosed with cancer in Queensland, Australia (01JUL2011 to 30JUN2012) (n = 25,553). Each individual record was then linked to their Admitted Patient Data Collection, Emergency Data Information System, Medicare Benefits Schedule (MBS), and Pharmaceutical Benefits Scheme (PBS) records (01JUL2011 to 30JUN2015). We then weighted the population to be representative of the Australian population (approximately 123,900 Australians, 1.7% Indigenous Australians). The patient co-payment charged for each MBS service and PBS prescription was summed for each month from date of diagnosis to 36-months post-diagnosis. We then limited our model to MBS items to identify the quantity and type of healthcare services accessed during the first three-years. RESULTS: On average Indigenous people with cancer had less than half the out-of-pocket expenditure for each 12-month period (0-12 months: mean $401 Indigenous vs $1074 non-Indigenous; 13-24 months: mean $200 vs $484; and 25-36 months: mean $181 vs $441). A stepwise generalised linear model of out-of-pocket expenditure found that Indigenous status was a significant predictor of out of pocket expenditure. We found that Indigenous people with cancer on average accessed 236 services per person, however, this would increase to 309 services per person if Indigenous people had the same rate of service use as non-Indigenous people. CONCLUSIONS: Indigenous people with cancer had lower out-of-pocket expenditure, but also accessed fewer Medicare services compared to their non-Indigenous counterparts. Indigenous people with cancer were less likely to access specialist attendances, pathology tests, and diagnostic imaging through MBS, and more likely to access primary health care, such as services provided by general practitioners.

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.

Difficult conversations: Australian Indigenous patients' views on kidney transplantation.

BACKGROUND: Indigenous Australians suffer a disproportionate burden of end stage kidney disease (ESKD) but are significantly less likely to receive a transplant. This study explores Indigenous ESKD patients' views on transplantation as a treatment option. METHODS: The Improving Access to Kidney Transplants (IMPAKT) research program investigated barriers to kidney transplantation for Indigenous Australians. An interview study, conducted in 2005-2006, elicited illness experience narratives from 146 Indigenous patients, including views on transplant. Interviews were conducted at 26 sites that collectively treat the majority of Indigenous ESKD patients. Key themes were identified via team consensus meetings, providing a flexible framework and focus for continued coding. RESULTS: Four inter-related themes were identified in patient commentary: a very high level (90% of respondents) of positive interest in transplantation; patients experienced a range of communication difficulties and felt uninformed about transplant; family involvement in decision-making was constrained by inadequate information; and patients needed to negotiate cultural and social sensitivities around transplantation. CONCLUSIONS: Indigenous ESKD patients demonstrated an intense interest in transplantation preferring deceased over living kidney donation. Patients believe transplant is the path most likely to support the re-establishment of their 'normal' family life. Patients described themselves as poorly informed; most had only a rudimentary knowledge of the notion of transplant but no understanding of eligibility criteria, the transplant procedure and associated risks. Patients experienced multiple communication barriers that - taken together - undermine their engagement in treatment decision-making. Families and communities are disempowered because they also lack information to reach a shared understanding of transplantation. Cultural sensitivities associated with transplantation were described but these did not appear to constrain patients in making choices about their own health. Transplant units and local treatment providers should collaborate to develop user-friendly, culturally informed and region-specific patient education programs. Quality improvement cycles should underpin the development of national guidelines for patient education. Noting Indigenous patients' intense interest in transplantation, and nephrologists' concerns regarding poor transplant outcomes, research should prioritise exploring the predictors of transplant outcomes for Indigenous Australians.

The health-related quality of life of Indigenous populations: a global systematic review.

PURPOSE: Indigenous conceptions of health have been shown to differ from that of their non-Indigenous counterparts. As a result, there remains uncertainty over the appropriateness and value of using existing health-related quality-of-life (HRQoL) instruments in Indigenous communities. The objective of this review was to identify studies that either measure the HRQoL of an Indigenous population or validated a measure used to elicit the HRQoL in an Indigenous population. METHODS: A systematic review of the published literature was conducted to (1) investigate the extent to which HRQoL instruments are used in Indigenous populations; (2) to identify which instruments have been validated in which populations; and (3) to identify which instruments have been tailored for use with Indigenous populations. RESULTS: Forty-one studies were included in the review. Only three of the 41 studies utilised Indigenous-specific instruments. The remainder (38 studies) utilised generic population or disease-specific instruments. Four studies found specific HRQoL instruments to be valid in these populations and 32 estimated the HRQoL of an Indigenous population. The limited examples of Indigenous-specific instruments highlighted the potential importance to the HRQoL of these populations of domains that lie outside of traditional measures including social and community domains as well as domains relating to culture, diet and land use on top of more traditional HRQoL domains. CONCLUSION: Ensuring that the HRQoL of Indigenous populations is being appropriately measured is vital to prioritising available resources to the most effective interventions. HRQoL instruments present an opportunity to directly elicit and incorporate Indigenous preferences and conceptions of health into these decisions. Further work is required in the field to ensure that this potential is realised.

The first comprehensive report on Indigenous Australian women's inequalities in cervical screening: A retrospective registry cohort study in Queensland, Australia (2000-2011).

BACKGROUND: The Australian National Cervical Screening Program, introduced more than 20 years ago, does not record the Indigenous status of screening participants. This article reports the first population-based estimates of participation in cervical screening for Indigenous and non-Indigenous Australian women. METHODS: This was a retrospective, population-based study of 1,334,795 female Queensland residents, aged 20 to 69 years, who participated in cervical screening from 2000 to 2011; 26,829 were identified as Indigenous through linkage to hospitalization records. Participation rates were calculated as the number of women screened divided by the average estimated resident population, with adjustments made for hysterectomies, for each 2-, 3-, and 5-year screening period. Multivariate logistic regression was used to estimate odds ratios (ORs) and 95% confidence intervals (CIs), which were adjusted for age group, place of residence, and socioeconomic disadvantage. RESULTS: In 2010-2011, the 2-year participation rate was 55.7% (95% CI, 55.6%-55.9%) for non-Indigenous women and 33.5% (95% CI, 32.9%-34.1%) for Indigenous women; this represented a decrease from 2000-2001 (57.7% [95% CI, 57.6%-57.9%] and 35.3% [95% CI, 34.5%-36.1%], respectively). The difference between Indigenous and non-Indigenous women was greatest for those aged 45 to 49 years. The 3- and 5-year participation rates were higher within both groups, and the absolute differences between the 2 groups were larger. Significant interactions between the Indigenous status and the place of residence and socioeconomic disadvantage highlight that the Indigenous/non-Indigenous differential was evident in all places of residence except for very remote areas (OR, 0.99; 95% CI, 0.95-1.02) and was greatest in the most affluent areas (OR, 0.26; 95% CI, 0.24-0.27). CONCLUSIONS: Indigenous Australian women participate less than non-Indigenous women, and this gap has not closed. These results provide important benchmarks for the new Australian cervical screening program commencing in 2017, which will provide opportunities to reduce inequities for Indigenous women and address longstanding data deficiencies in the collection of the Indigenous status. Cancer 2016;122:1560-9. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

Psychometric properties of an Australian supportive care needs assessment tool for Indigenous patients with cancer.

BACKGROUND: There are significant disparities in cancer outcomes between Indigenous and non-Indigenous Australians. Identifying the unmet supportive care needs of Indigenous Australians with cancer is imperative to improve their cancer care. The purpose of the current study was to test the psychometric properties of a supportive cancer care needs assessment tool for Indigenous people (SCNAT-IP) with cancer. METHODS: The SCNAT-IP was administered to 248 Indigenous Australians diagnosed with a range of cancer types and stages, and who received treatment in 1 of 4 Queensland hospitals. All 39 items were assessed for ceiling and floor effects and were analyzed using exploratory factor analysis to determine construct validity. Identified factors were assessed for internal consistency and convergent validity to validated psychosocial tools. RESULTS: Exploratory factor analysis revealed a 4-factor structure (physical and psychological, hospital care, information and communication, and practical and cultural needs) explaining 51% of the variance. Internal consistency of the 4 subscales was good, with Cronbach alpha reliability coefficients ranging from .70 to .89. Convergent validity was supported by significant correlations between the SCNAT-IP with the National Comprehensive Cancer Network Distress Thermometer (correlation coefficient [r] = 0.60; P<.001) and the Cancer Worry Chart (r = 0.58; P<.001) and a moderately strong negative correlation with the Assessment of Quality of Life questionnaire (r = -0.56; P<.001). CONCLUSIONS: These data provide initial support for the SCNAT-IP, a measure of multiple supportive care needs domains specific to Indigenous Australian patients with cancer undergoing treatment.

Exploring productivity and collaboration in Australian Indigenous health research, 1995-2008.

BACKGROUND: Building research capacity in Indigenous health has been recognised as integral in efforts to reduce the significant health disparities between Indigenous and other Australian populations. The past few decades have seen substantial changes in funding policy for Australian Indigenous health research, including increases in overall expenditure and a greater focus on collaborative and priority-driven research. However, whether these policy shifts have resulted in any change to the structure of the research workforce in this field is unclear. We examine research publications in Australian Indigenous health from 1995-2008 to explore trends in publication output, key themes investigated, and research collaborations. METHODS: A comprehensive literature search was undertaken to identify research publications about Australian Indigenous health from 1995-2008. Abstracts of all publications identified were reviewed by two investigators for relevance. Eligible publications were classified according to key themes. Social network analyses of co-authorship patterns were used to examine collaboration in the periods 1995-1999, 2000-2004 and 2005-2008. RESULTS: Nine hundred and fifty three publications were identified. Over time, the number of publications per year increased, particularly after 2005, and there was a substantial increase in assessment of health service-related issues. Network analyses revealed a highly collaborative core group of authors responsible for the majority of outputs, in addition to a series of smaller separate groups. In the first two periods there was a small increase in the overall network size (from n = 583 to n = 642 authors) due to growth in collaborations around the core. In the last period, the network size increased considerably (n = 1,083), largely due to an increase in the number and size of separate groups. The general size of collaborations also increased in this period. CONCLUSIONS: In the past few decades there has been substantial development of the research workforce in Indigenous health, characterised by an increase in authors and outputs, a greater focus on some identified priority areas and sustained growth in collaborations. This has occurred in conjunction with significant changes to funding policy for Indigenous health research, suggesting that both productivity and collaboration may be sensitive to reform, including the provision of dedicated funding.

Patterns and correlates of self-reported racial discrimination among Australian Aboriginal and Torres Strait Islander adults, 2008-09: analysis of national survey data.

BACKGROUND: There is now considerable evidence that racism is a pernicious and enduring social problem with a wide range of detrimental outcomes for individuals, communities and societies. Although indigenous people worldwide are subjected to high levels of racism, there is a paucity of population-based, quantitative data about the factors associated with their reporting of racial discrimination, about the settings in which such discrimination takes place, and about the frequency with which it is experienced. Such information is essential in efforts to reduce both exposure to racism among indigenous people and the harms associated with such exposure. METHODS: Weighted data on self-reported racial discrimination from over 7,000 Indigenous Australian adults participating in the 2008-09 National Aboriginal and Torres Strait Islander Survey, a nationally representative survey conducted by the Australian Bureau of Statistics, were analysed by socioeconomic, demographic and cultural factors. RESULTS: More than one in four respondents (27%) reported experiencing racial discrimination in the past year. Racial discrimination was most commonly reported in public (41% of those reporting any racial discrimination), legal (40%) and work (30%) settings. Among those reporting any racial discrimination, about 40% experienced this discrimination most or all of the time (as opposed to a little or some of the time) in at least one setting. Reporting of racial discrimination peaked in the 35-44 year age group and then declined. Higher reporting of racial discrimination was associated with removal from family, low trust, unemployment, having a university degree, and indicators of cultural identity and participation. Lower reporting of racial discrimination was associated with home ownership, remote residence and having relatively few Indigenous friends. CONCLUSIONS: These data indicate that racial discrimination is commonly experienced across a wide variety of settings, with public, legal and work settings identified as particularly salient. The observed relationships, while not necessarily causal, help to build a detailed picture of self-reported racial discrimination experienced by Indigenous people in contemporary Australia, providing important evidence to inform anti-racism policy.

"Looking back to my family": indigenous Australian patients' experience of hemodialysis.

BACKGROUND: In common with Indigenous populations elsewhere, Indigenous Australians have higher incidence of end-stage kidney disease (ESKD), but lower transplantation rates than their non-Indigenous counterparts. Understanding how the demands of dialysis impact on, and are impacted by, the lives of Indigenous patients may provide important insight into treatment pathways and decision-making. METHODS: We conducted semi-structured interviews in 2005-06 with 146 Indigenous and 95 non-Indigenous patients from nine hospital renal wards and 17 associated dialysis centres, which together treat the majority of Indigenous Australian ESKD patients. RESULTS: Factors influencing treatment experience included: the impacts of late diagnosis; family separations associated with relocating for treatment; the physical and psychosocial demands of hemodialysis; and ineffective communication between health care providers and patients. Although not unique to them, Indigenous patients were more likely to experience the combined effect of all factors. CONCLUSIONS: Social/situational circumstances profoundly affect Indigenous Australian dialysis patients' ability to fully engage with treatment. This may ultimately affect their likelihood of receiving optimal treatment, including transplantation. Areas for improvement include: earlier diagnosis; improved linkages between specialist renal services and primary care in regional settings; more effective communication and patient education; and more systematic, transparent approaches to patient "compliance" in transplant and home dialysis guidelines.

If you can't comply with dialysis, how do you expect me to trust you with transplantation? Australian nephrologists' views on indigenous Australians' 'non-compliance' and their suitability for kidney transplantation.

INTRODUCTION: Indigenous Australians suffer markedly higher rates of end-stage kidney disease (ESKD) but are less likely than their non-Indigenous counterparts to receive a transplant. This difference is not fully explained by measurable clinical differences. Previous work suggests that Indigenous Australian patients may be regarded by treating specialists as 'non-compliers', which may negatively impact on referral for a transplant. However, this decision-making is not well understood. The objectives of this study were to investigate: whether Indigenous patients are commonly characterised as 'non-compliers'; how estimations of patient compliance factor into Australian nephrologists' decision-making about transplant referral; and whether this may pose a particular barrier for Indigenous patients accessing transplants. METHODS: Nineteen nephrologists, from eight renal units treating the majority of Indigenous Australian renal patients, were interviewed in 2005-06 as part of a larger study. Thematic analysis was undertaken to investigate how compliance factors in specialists' decision-making, and its implications for Indigenous patients' likelihood of obtaining transplants. RESULTS: Specialists commonly identified Indigenous patients as both non-compliers and high-risk transplant candidates. Definition and assessment of 'compliance' was neither formal nor systematic. There was uncertainty about the value of compliance status in predicting post-transplant outcomes and the issue of organ scarcity permeated participants' responses. Overall, there was marked variation in how specialists weighed perceptions of compliance and risk in their decision-making. CONCLUSION: Reliance on notions of patient 'compliance' in decision-making for transplant referral is likely to result in continuing disadvantage for Indigenous Australian ESKD patients. In the absence of robust evidence on predictors of post-transplant outcomes, referral decision-making processes require attention and debate.

Socio-demographic factors and psychological distress in Indigenous and non-Indigenous Australian adults aged 18-64 years: analysis of national survey data.

BACKGROUND: Indigenous Australians are known to be at greater risk of morbidity and mortality from mental health related conditions, but most available data relate to the use of mental health services, and little is known about other aspects of social and emotional wellbeing. Using the first available nationally representative data, we examined the prevalence and patterning of psychological distress among Indigenous Australian adults and compared these with corresponding data from the non-Indigenous population. METHODS: The analysis used weighted data on psychological distress, as measured by a modified Kessler Psychological Distress score (K5), and a range of socio-demographic measures for 5,417 Indigenous and 15,432 non-Indigenous adults aged 18-64 years from two nationally representative surveys. Very high psychological distress (VHPD) was defined as a K5 score ≥ 15 (possible range = 5-25). RESULTS: Indigenous adults were about three times more likely than non-Indigenous adults to be classified with VHPD: 14.5% (95% confidence interval (CI) 12.9-16.0%) versus 5.5% (95% CI 5.0-5.9%). After adjusting for age, most socio-demographic variables were significantly associated with VHPD in both populations, although the relative odds were generally larger among non-Indigenous people. Indigenous people in remote areas had a lower prevalence of VHPD than their non-remote counterparts, and only marital status, main language, and food insecurity were significantly associated with VHPD in remote areas. CONCLUSIONS: Higher absolute levels of VHPD combined with smaller socio-demographic gradients in the Indigenous population suggest the importance of risk factors such as interpersonal racism, marginalization and dispossession, chronic stress and exposure to violence that are experienced by Indigenous Australians with common and/or cross-cutting effects across the socioeconomic spectrum. The lower prevalence of VHPD and lack of association with many socio-demographic variables in remote areas suggests either that the instrument may be less valid for Indigenous people living in remote areas or that living in an Indigenous majority environment (such as exists in most remote communities) may mitigate the risk of psychological distress to some degree.