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1.  Identifying barriers and improving communication between cancer service providers and Aboriginal patients and their families: the perspective of service providers 
Background
Aboriginal Australians experience poorer outcomes from cancer compared to the non-Aboriginal population. Some progress has been made in understanding Aboriginal Australians’ perspectives about cancer and their experiences with cancer services. However, little is known of cancer service providers’ (CSPs) thoughts and perceptions regarding Aboriginal patients and their experiences providing optimal cancer care to Aboriginal people. Communication between Aboriginal patients and non-Aboriginal health service providers has been identified as an impediment to good Aboriginal health outcomes. This paper reports on CSPs’ views about the factors impairing communication and offers practical strategies for promoting effective communication with Aboriginal patients in Western Australia (WA).
Methods
A qualitative study involving in-depth interviews with 62 Aboriginal and non-Aboriginal CSPs from across WA was conducted between March 2006 - September 2007 and April-October 2011. CSPs were asked to share their experiences with Aboriginal patients and families experiencing cancer. Thematic analysis was carried out. Our analysis was primarily underpinned by the socio-ecological model, but concepts of Whiteness and privilege, and cultural security also guided our analysis.
Results
CSPs’ lack of knowledge about the needs of Aboriginal people with cancer and Aboriginal patients’ limited understanding of the Western medical system were identified as the two major impediments to communication. For effective patient–provider communication, attention is needed to language, communication style, knowledge and use of medical terminology and cross-cultural differences in the concept of time. Aboriginal marginalization within mainstream society and Aboriginal people’s distrust of the health system were also key issues impacting on communication. Potential solutions to effective Aboriginal patient-provider communication included recruiting more Aboriginal staff, providing appropriate cultural training for CSPs, cancer education for Aboriginal stakeholders, continuity of care, avoiding use of medical jargon, accommodating patients’ psychosocial and logistical needs, and in-service coordination.
Conclusion
Individual CSPs identified challenges in cross-cultural communication and their willingness to accommodate culture-specific needs within the wider health care system including better communication with Aboriginal patients. However, participants’ comments indicated a lack of concerted effort at the system level to address Aboriginal disadvantage in cancer outcomes.
doi:10.1186/1472-6963-13-460
PMCID: PMC3835135  PMID: 24188503
Aboriginal; Indigenous; Cancer; Communication; Health service provider; Cancer service provider
2.  Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives 
BMC Palliative Care  2013;12:26.
Background
Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families.
Methods
In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data.
Results
Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers.
Conclusion
Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team.
doi:10.1186/1472-684X-12-26
PMCID: PMC3729490  PMID: 23875957
Palliative care; End of life care; Aboriginal; Indigenous; Cultural safety; Australia
3.  Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services 
Background
Despite a lower overall incidence, Aboriginal Australians experience poorer outcomes from cancer compared with the non-Aboriginal population as manifested by higher mortality and lower 5-year survival rates. Lower participation in screening, later diagnosis of cancer, poor continuity of care, and poorer compliance with treatment are known factors contributing to this poor outcome. Nevertheless, many deficits remain in understanding the underlying reasons, with the recommendation of further exploration of Aboriginal beliefs and perceptions of cancer to help understand their care-seeking behavior. This could assist with planning and delivery of more effective interventions and better services for the Aboriginal population. This research explored Western Australian (WA) Aboriginal peoples' perceptions, beliefs and understanding of cancer.
Methods
A total of 37 Aboriginal people from various geographical areas within WA with a direct or indirect experience of cancer were interviewed between March 2006 and September 2007. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. A social constructionist framework provided a theoretical basis for analysis. Interpretation occurred within the research team with member checking and the involvement of an Aboriginal Reference Group assisting with ensuring validity and reliability.
Results
Outcomes indicated that misunderstanding, fear of death, fatalism, shame, preference for traditional healing, beliefs such as cancer is contagious and other spiritual issues affected their decisions around accessing services. These findings provide important information for health providers who are involved in cancer-related service delivery.
Conclusion
These underlying beliefs must be specifically addressed to develop appropriate educational, screening and treatment approaches including models of care and support that facilitate better engagement of Indigenous people. Models of care and support that are more culturally-friendly, where health professionals take account of both Indigenous and Western beliefs about health and the relationship between these, and which engage and include Indigenous people need to be developed. Cultural security, removing system barriers and technical/scientific excellence are all important to ensure Indigenous people utilise healthcare to realise the benefits of modern cancer treatments.
doi:10.1186/1472-6963-9-132
PMCID: PMC2731745  PMID: 19643031
4.  "If you don't believe it, it won't help you": use of bush medicine in treating cancer among Aboriginal people in Western Australia 
Background
Little is known about the use of bush medicine and traditional healing among Aboriginal Australians for their treatment of cancer and the meanings attached to it. A qualitative study that explored Aboriginal Australians' perspectives and experiences of cancer and cancer services in Western Australia provided an opportunity to analyse the contemporary meanings attached and use of bush medicine by Aboriginal people with cancer in Western Australia
Methods
Data collection occurred in Perth, both rural and remote areas and included individual in-depth interviews, observations and field notes. Of the thirty-seven interviews with Aboriginal cancer patients, family members of people who died from cancer and some Aboriginal health care providers, 11 participants whose responses included substantial mention on the issue of bush medicine and traditional healing were selected for the analysis for this paper.
Results
The study findings have shown that as part of their healing some Aboriginal Australians use traditional medicine for treating their cancer. Such healing processes and medicines were preferred by some because it helped reconnect them with their heritage, land, culture and the spirits of their ancestors, bringing peace of mind during their illness. Spiritual beliefs and holistic health approaches and practices play an important role in the treatment choices for some patients.
Conclusions
Service providers need to acknowledge and understand the existence of Aboriginal knowledge (epistemology) and accept that traditional healing can be an important addition to an Aboriginal person's healing complementing Western medical treatment regimes. Allowing and supporting traditional approaches to treatment reflects a commitment by modern medical services to adopting an Aboriginal-friendly approach that is not only culturally appropriate but assists with the cultural security of the service.
doi:10.1186/1746-4269-6-18
PMCID: PMC2902429  PMID: 20569478
5.  Exploration of the beliefs and experiences of Aboriginal people with cancer in Western Australia: a methodology to acknowledge cultural difference and build understanding 
Background
Aboriginal Australians experience poorer outcomes, and are 2.5 times more likely to die from cancer than non-Aboriginal people, even after adjustment for stage of diagnosis, cancer treatment and comorbidities. They are also less likely to present early as a result of symptoms and to access treatment. Psycho-social factors affect Aboriginal people's willingness and ability to participate in cancer-related screening and treatment services, but little exploration of this has occurred within Australia to date. The current research adopted a phenomenological qualitative approach to understand and explore the lived experiences of Aboriginal Australians with cancer and their beliefs and understanding around this disease in Western Australia (WA). This paper details considerations in the design and process of conducting the research.
Methods/Design
The National Health and Medical Research Council (NHMRC) guidelines for ethical conduct of Aboriginal research were followed. Researchers acknowledged the past negative experiences of Aboriginal people with research and were keen to build trust and relationships prior to conducting research with them. Thirty in-depth interviews with Aboriginal people affected by cancer and twenty with health service providers were carried out in urban, rural and remote areas of WA. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers. NVivo7 software was used to assist data management and analysis. Participants' narratives were divided into broad categories to allow identification of key themes and discussed by the research team.
Discussion and conclusion
Key issues specific to Aboriginal research include the need for the research process to be relationship-based, respectful, culturally appropriate and inclusive of Aboriginal people. Researchers are accountable to both participants and the wider community for reporting their findings and for research translation so that the research outcomes benefit the Aboriginal community. There are a number of factors that influence whether the desired level of engagement can be achieved in practice. These include the level of resourcing for the project and the researchers' efforts to ensure dissemination and research translation; and the capacity of the Aboriginal community to engage with research given other demands upon their time.
doi:10.1186/1471-2288-9-60
PMCID: PMC2743702  PMID: 19674484
6.  Planning, Implementing, and Evaluating a Program to Address the Oral Health Needs of Aboriginal Children in Port Augusta, Australia 
Aboriginal Australian children experience profound oral health disparities relative to their non-Aboriginal counterparts. In response to community concerns regarding Aboriginal child oral health in the regional town of Port Augusta, South Australia, a child dental health service was established within a Community Controlled Aboriginal Health Service. A partnership approach was employed with the key aims of (1) quantifying rates of dental service utilisation, (2) identifying factors influencing participation, and (3) planning and establishing a program for delivery of Aboriginal children's dental services that would increase participation and adapt to community needs. In planning the program, levels of participation were quantified and key issues identified through semistructured interviews. After 3.5 years, the participation rate for dental care among the target population increased from 53 to 70 percent. Key areas were identified to encourage further improvements and ensure sustainability in Aboriginal child oral health in this regional location.
doi:10.1155/2012/496236
PMCID: PMC3346980  PMID: 22577401
7.  Inequalities in ventilation tube insertion procedures between Aboriginal and non-Aboriginal children in New South Wales, Australia: a data linkage study 
BMJ Open  2013;3(11):e003807.
Objectives
Australian Aboriginal children experience earlier, more frequent and more severe otitis media, particularly in remote communities, than non-Aboriginal children. Insertion of ventilation tubes is the main surgical procedure for otitis media. Our aim was to quantify inequalities in ventilation tube insertion (VTI) procedures between Australian Aboriginal and non-Aboriginal children, and to explore the influence of birth characteristics, socioeconomic background and geographical remoteness on this inequality.
Design
Retrospective cohort study using linked hospital and mortality data from July 2000 to December 2008.
Setting and participants
A whole-of-population cohort of 653 550 children (16 831 Aboriginal and 636 719 non-Aboriginal) born in a New South Wales hospital between 1 July 2000 and 31 December 2007 was included in the analysis.
Outcome measure
First VTI procedure.
Results
VTI rates were lower in Aboriginal compared with non-Aboriginal children (incidence rate (IR), 4.3/1000 person-years; 95% CI 3.8 to 4.8 vs IR 5.8/1000 person-years; 95% CI 5.7 to 5.8). Overall, Aboriginal children were 28% less likely than non-Aboriginal children to have ventilation tubes inserted (age-adjusted and sex-adjusted rate ratios (RRs) 0.72; 95% CI 0.64 to 0.80). After adjusting additionally for geographical remoteness, Aboriginal children were 19% less likely to have ventilation tubes inserted (age-adjusted and sex-adjusted RR 0.81; 95% CI 0.73 to 0.91). After adjusting separately for private patient/health insurance status and area socioeconomic status, there was no significant difference (age-adjusted and sex-adjusted RR 0.96; 95% CI 0.86 to 1.08 and RR 0.93; 95% CI 0.83 to 1.04, respectively). In the fully adjusted model, there were no significant differences in VTI rates between Aboriginal and non-Aboriginal children (RR 1.06; 95% CI 0.94 to 1.19).
Conclusions
Despite a much higher prevalence of otitis media, Aboriginal children were less likely to receive VTI procedures than their non-Aboriginal counterparts; this inequality was largely explained by differences in socioeconomic status and geographical remoteness.
doi:10.1136/bmjopen-2013-003807
PMCID: PMC3845074  PMID: 24285631
Epidemiology; Public Health
8.  Increasing rates of surgical treatment and preventing comorbidities may increase breast cancer survival for Aboriginal women 
BMC Cancer  2014;14:163.
Background
Lower breast cancer survival has been reported for Australian Aboriginal women compared to non-Aboriginal women, however the reasons for this disparity have not been fully explored. We compared the surgical treatment and survival of Aboriginal and non-Aboriginal women diagnosed with breast cancer in New South Wales (NSW), Australia.
Methods
We analysed NSW cancer registry records of breast cancers diagnosed in 2001–2007, linked to hospital inpatient episodes and deaths. We used unconditional logistic regression to compare the odds of Aboriginal and non-Aboriginal women receiving surgical treatment. Breast cancer-specific survival was examined using cumulative mortality curves and Cox proportional hazards regression models.
Results
Of the 27 850 eligible women, 288 (1.03%) identified as Aboriginal. The Aboriginal women were younger and more likely to have advanced spread of disease when diagnosed than non-Aboriginal women. Aboriginal women were less likely than non-Aboriginal women to receive surgical treatment (odds ratio 0.59, 95% confidence interval (CI) 0.42-0.86). The five-year crude breast cancer-specific mortality was 6.1% higher for Aboriginal women (17.7%, 95% CI 12.9-23.2) compared with non-Aboriginal women (11.6%, 95% CI 11.2-12.0). After accounting for differences in age at diagnosis, year of diagnosis, spread of disease and surgical treatment received the risk of death from breast cancer was 39% higher in Aboriginal women (HR 1.39, 95% CI 1.01-1.86). Finally after also accounting for differences in comorbidities, socioeconomic disadvantage and place of residence the hazard ratio was reduced to 1.30 (95% CI 0.94-1.75).
Conclusion
Preventing comorbidities and increasing rates of surgical treatment may increase breast cancer survival for NSW Aboriginal women.
doi:10.1186/1471-2407-14-163
PMCID: PMC3975643  PMID: 24606675
Australia/epidemiology; Breast Neoplasms/epidemiology; Female health services; Indigenous; Survival rate
9.  Providing culturally appropriate mental health first aid to an Aboriginal or Torres Strait Islander adolescent: development of expert consensus guidelines 
Background
It is estimated that the prevalence of mental illness is higher in Aboriginal and Torres Strait Islander adolescents compared to non-Aboriginal adolescents. Despite this, only a small proportion of Aboriginal youth have contact with mental health services, possibly due to factors such as remoteness, language barriers, affordability and cultural sensitivity issues. This research aimed to develop culturally appropriate guidelines for anyone who is providing first aid to an Australian Aboriginal or Torres Strait Islander adolescent who is experiencing a mental health crisis or developing a mental illness.
Methods
A panel of Australian Aboriginal people who are experts in Aboriginal youth mental health, participated in a Delphi study investigating how members of the public can be culturally appropriate when helping an Aboriginal or Torres Strait Islander adolescent with mental health problems. The panel varied in size across the three sequential rounds, from 37–41 participants. Panellists were presented with statements about cultural considerations and communication strategies via online questionnaires and were encouraged to suggest additional content. All statements endorsed as either Essential or Important by ≥ 90% of panel members were written into a guideline document. To assess the panel members’ satisfaction with the research method, participants were invited to provide their feedback after the final survey.
Results
From a total of 304 statements shown to the panel of experts, 194 statements were endorsed. The methodology was found to be useful and appropriate by the panellists.
Conclusion
Aboriginal and Torres Strait Islander Youth mental health experts were able to reach consensus about what the appropriate communication strategies for providing mental health first aid to an Aboriginal and Torres Strait Islander adolescent. These outcomes will help ensure that the community provides the best possible support to Aboriginal adolescents who are developing mental illnesses or are in a mental health crisis.
doi:10.1186/1752-4458-8-6
PMCID: PMC3922159  PMID: 24467923
Aboriginal; Torres Strait Islander; Adolescent; Youth; Mental illness; Mental health; Communication; Delphi method; Expert consensus; Community guidelines
10.  Factors influencing health care utilisation among Aboriginal cardiac patients in central Australia: a qualitative study 
Background
Aboriginal Australians suffer from poorer overall health compared to the general Australian population, particularly in terms of cardiovascular disease and prognosis following a cardiac event. Despite such disparities, Aboriginal Australians utilise health care services at much lower rates than the general population. Improving health care utilisation (HCU) among Aboriginal cardiac patients requires a better understanding of the factors that constrain or facilitate use. The study aimed to identify ecological factors influencing health care utilisation (HCU) for Aboriginal cardiac patients, from the time of their cardiac event to 6–12 months post-event, in central Australia.
Methods
This qualitative descriptive study was guided by an ecological framework. A culturally-sensitive illness narrative focusing on Aboriginal cardiac patients’ “typical” journey guided focus groups and semi-structured interviews with Aboriginal cardiac patients, non-cardiac community members, health care providers and community researchers. Analysis utilised a thematic conceptual matrix and mixed coding method. Themes were categorised into Predisposing, Enabling, Need and Reinforcing factors and identified at Individual, Interpersonal, Primary Care and Hospital System levels.
Results
Compelling barriers to HCU identified at the Primary Care and Hospital System levels included communication, organisation and racism. Individual level factors related to HCU included language, knowledge of illness, perceived need and past experiences. Given these individual and health system barriers patients were reliant on utilising alternate family-level supports at the Interpersonal level to enable their journey.
Conclusion
Aboriginal cardiac patients face significant barriers to HCU, resulting in sub-optimal quality of care, placing them at risk for subsequent cardiovascular events and negative health outcomes. To facilitate HCU amongst Aboriginal people, strategies must be implemented to improve communication on all levels and reduce systemic barriers operating within the health system.
doi:10.1186/1472-6963-13-83
PMCID: PMC3606832  PMID: 23497140
Health care utilisation; Facilitators/barriers to care; Cardiovascular disease; Indigenous; Aboriginal
11.  Service providers’ perspectives, attitudes and beliefs on health services delivery for Aboriginal people receiving haemodialysis in rural Australia: a qualitative study 
BMJ Open  2013;3(10):e003581.
Objective
Providing services to rural dwelling minority cultural groups with serious chronic disease is challenging due to access to care and cultural differences. This study aimed to describe service providers’ perspectives on health services delivery for Aboriginal people receiving haemodialysis for end-stage kidney disease in rural Australia.
Design
Semistructured interviews, thematic analysis
Setting
A health district in rural New South Wales, Australia
Participants
Using purposive sampling, 29 renal and allied service providers were recruited, including nephrologists, renal nurses, community nurses, Aboriginal health workers, social workers and managers. Six were Aboriginal and 23 non-Aboriginal.
Results
Improving cultural understanding within the healthcare system was central to five themes identified: rigidity of service design (outreach, inevitable home treatment failures, pressure of system overload, limited efficacy of cultural awareness training and conflicting priorities in acute care); responding to social complexities (respecting but challenged by family obligations, assumptions about socioeconomic status and individualised care); promoting empowerment, trust and rapport (bridging gaps in cultural understanding, acknowledging the relationship between land, people and environment, and being time poor); distress at late diagnosis (lost opportunities and prioritise prevention); and contending with discrimination and racism (inherent judgement of lifestyle choices, inadequate cultural awareness, pervasive multilevel institutionalised racism and managing patient distrust).
Conclusions
Service providers believe current services are not designed to address cultural needs and Aboriginality, and that caring for Aboriginal patients receiving haemodialysis should be family focused and culturally safer. An Aboriginal-specific predialysis pathway, building staff cultural awareness and enhancing cultural safety within hospitals are the measures recommended. Increasing patient support for home haemodialysis may improve health and the quality of care outcomes.
doi:10.1136/bmjopen-2013-003581
PMCID: PMC3808758  PMID: 24157820
QUALITATIVE RESEARCH; NEPHROLOGY
12.  Aboriginal Health Workers experience multilevel barriers to quitting smoking: a qualitative study 
Introduction
Long-term measures to reduce tobacco consumption in Australia have had differential effects in the population. The prevalence of smoking in Aboriginal peoples is currently more than double that of the non-Aboriginal population. Aboriginal Health Workers are responsible for providing primary health care to Aboriginal clients including smoking cessation programs. However, Aboriginal Health Workers are frequently smokers themselves, and their smoking undermines the smoking cessation services they deliver to Aboriginal clients. An understanding of the barriers to quitting smoking experienced by Aboriginal Health Workers is needed to design culturally relevant smoking cessation programs. Once smoking is reduced in Aboriginal Health Workers, they may then be able to support Aboriginal clients to quit smoking.
Methods
We undertook a fundamental qualitative description study underpinned by social ecological theory. The research was participatory, and academic researchers worked in partnership with personnel from the local Aboriginal health council. The barriers Aboriginal Health Workers experience in relation to quitting smoking were explored in 34 semi-structured interviews (with 23 Aboriginal Health Workers and 11 other health staff) and 3 focus groups (n = 17 participants) with key informants. Content analysis was performed on transcribed text and interview notes.
Results
Aboriginal Health Workers spoke of burdensome stress and grief which made them unable to prioritise quitting smoking. They lacked knowledge about quitting and access to culturally relevant quitting resources. Interpersonal obstacles included a social pressure to smoke, social exclusion when quitting, and few role models. In many workplaces, smoking was part of organisational culture and there were challenges to implementation of Smokefree policy. Respondents identified inadequate funding of tobacco programs and a lack of Smokefree public spaces as policy level barriers. The normalisation of smoking in Aboriginal society was an overarching challenge to quitting.
Conclusions
Aboriginal Health Workers experience multilevel barriers to quitting smoking that include personal, social, cultural and environmental factors. Multidimensional smoking cessation programs are needed that reduce the stress and burden for Aboriginal Health Workers; provide access to culturally relevant quitting resources; and address the prevailing normalisation of smoking in the family, workplace and community.
doi:10.1186/1475-9276-11-27
PMCID: PMC3477099  PMID: 22621767
Aboriginal people, Australia; Health care professionals; Tobacco and health; Smoking cessation; Qualitative research
13.  Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort 
Background
Longitudinal prospective birth cohort studies are pivotal to identifying fundamental causes and determinants of disease and health over the life course. There is limited information about the challenges, retention, and collection strategies in the study of Indigenous populations. The aim is to describe the follow-up rates of an Australian Aboriginal Birth Cohort study and how they were achieved.
Methods
Participants were 686 babies enrolled between January 1987 and March 1990, born to a mother recorded in the Delivery Suite Register of the Royal Darwin Hospital (RDH) as a self-identified Aboriginal. The majority of the participants (70%) resided in Northern Territory within rural, remote and very remote Aboriginal communities that maintain traditional connections to their land and culture. The Aboriginal communities are within a sparsely populated (0.2 people/ km2) area of approximately 900,000 km2 (347sq miles), with poor communication and transport infrastructures. Follow-ups collecting biomedical and lifestyle data directly from participants in over 40 locations were conducted at 11.4 years (Wave-2) and 18.2 years (Wave-3), with Wave-4 follow-up currently underway.
Results
Follow-ups at 11 and 18 years of age successfully examined 86% and 72% of living participants respectively. Strategies addressing logistic, cultural and ethical challenges are documented.
Conclusions
Satisfactory follow-up rates of a prospective longitudinal Indigenous birth cohort with traditional characteristics are possible while maintaining scientific rigor in a challenging setting. Approaches included flexibility, respect, and transparent communication along with the adoption of culturally sensitive behaviours. This work should inform and assist researchers undertaking or planning similar studies in Indigenous and developing populations.
doi:10.1186/1471-2288-14-31
PMCID: PMC3942517  PMID: 24568142
Epidemiological method; Prospective longitudinal cohort; Ethnic minority; Health determinants; Australian; Aboriginal
14.  Mortality after admission for acute myocardial infarction in Aboriginal and non-Aboriginal people in New South Wales, Australia: a multilevel data linkage study 
BMC Public Health  2012;12:281.
Background
Heart disease is a leading cause of the gap in burden of disease between Aboriginal and non-Aboriginal Australians. Our study investigated short- and long-term mortality after admission for Aboriginal and non-Aboriginal people admitted with acute myocardial infarction (AMI) to public hospitals in New South Wales, Australia, and examined the impact of the hospital of admission on outcomes.
Methods
Admission records were linked to mortality records for 60047 patients aged 25–84 years admitted with a diagnosis of AMI between July 2001 and December 2008. Multilevel logistic regression was used to estimate adjusted odds ratios (AOR) for 30- and 365-day all-cause mortality.
Results
Aboriginal patients admitted with an AMI were younger than non-Aboriginal patients, and more likely to be admitted to lower volume, remote hospitals without on-site angiography. Adjusting for age, sex, year and hospital, Aboriginal patients had a similar 30-day mortality risk to non-Aboriginal patients (AOR: 1.07; 95% CI 0.83-1.37) but a higher risk of dying within 365 days (AOR: 1.34; 95% CI 1.10-1.63). The latter difference did not persist after adjustment for comorbid conditions (AOR: 1.12; 95% CI 0.91-1.38). Patients admitted to more remote hospitals, those with lower patient volume and those without on-site angiography had increased risk of short and long-term mortality regardless of Aboriginal status.
Conclusions
Improving access to larger hospitals and those with specialist cardiac facilities could improve outcomes following AMI for all patients. However, major efforts to boost primary and secondary prevention of AMI are required to reduce the mortality gap between Aboriginal and non-Aboriginal people.
doi:10.1186/1471-2458-12-281
PMCID: PMC3481361  PMID: 22490109
Hospital performance; Acute myocardial infarction; Ischaemic heart disease; Aboriginal health; Health outcomes; Multilevel modelling; Data linkage
15.  The Be Our Ally Beat Smoking (BOABS) study, a randomised controlled trial of an intensive smoking cessation intervention in a remote aboriginal Australian health care setting 
BMC Public Health  2014;14:32.
Background
Australian Aboriginal and Torres Strait Islander peoples (Indigenous Australians) smoke at much higher rates than non-Indigenous people and smoking is an important contributor to increased disease, hospital admissions and deaths in Indigenous Australian populations. Smoking cessation programs in Australia have not had the same impact on Indigenous smokers as on non-Indigenous smokers. This paper describes the outcome of a study that aimed to test the efficacy of a locally-tailored, intensive, multidimensional smoking cessation program.
Methods
A randomised controlled trial of Aboriginal researcher delivered tailored smoking cessation counselling during face-to-face visits, aiming for weekly for the first four weeks, monthly to six months and two monthly to 12 months. The control (“usual care”) group received routine care relating to smoking cessation at their local primary health care service. Data collection occurred at enrolment, six and 12 months. The primary outcome was self-reported smoking cessation with urinary cotinine confirmation at final follow-up (median 13 (interquartile range 12–15) months after enrolment).
Results
Participants in the intervention (n = 55) and usual care (n = 108) groups were similar in baseline characteristics, except the intervention group was slightly older. At final follow-up the smoking cessation rate for participants assigned to the intervention group (n = 6; 11%), while not statistically significant, was double that of usual care (n = 5; 5%; p = 0.131). A meta-analysis of these findings and a similarly underpowered but comparable study of pregnant Indigenous Australian women showed that Indigenous Australian participants assigned to the intervention groups were 2.4 times (95% CI, 1.01-5.5) as likely to quit as participants assigned to usual care.
Conclusions
Culturally appropriate, multi-dimensional Indigenous quit smoking programs can be successfully implemented in remote primary health care. Intensive one-on-one interventions with substantial involvement from Aboriginal and Torres Strait Islander workers are likely to be effective in these settings.
Trial registration
Australian New Zealand Clinical Trials Registry (ACTRN12608000604303).
doi:10.1186/1471-2458-14-32
PMCID: PMC3905726  PMID: 24418597
Indigenous; Aboriginal; Torres Strait Islander; Randomised controlled trial; Smoking cessation; Be Our Ally Beat Smoking (BOABS) Study
16.  Transfers to metropolitan hospitals and coronary angiography for rural Aboriginal and non‐Aboriginal patients with acute ischaemic heart disease in Western Australia 
Background
Aboriginal people have a disproportionately higher incidence rate of ischaemic heart disease (IHD) than non-Aboriginal people. The findings on Aboriginal disparity in receiving coronary artery procedures are inconclusive. We describe the profile and transfers of IHD patients admitted to rural hospitals as emergency admissions and investigate determinants of transfers and coronary angiography.
Methods
Person-linked hospital and mortality records were used to identify 28-day survivors of IHD events commencing at rural hospitals in Western Australia. Outcome measures were receipt of coronary angiography, transfer to a metropolitan hospital, and coronary angiography if transferred to a metropolitan hospital.
Results
Compared to non-Aboriginal patients, Aboriginal patients with IHD were more likely to be younger, have more co-morbidities, reside remotely, but less likely to have private insurance. After adjusting for demographic characteristics, Aboriginal people with MI were less likely to be transferred to a metropolitan hospital, and if transferred were less likely to receive coronary angiography. These disparities were not significant after adjusting for comorbidities and private insurance. In the full multivariate model age, comorbidities and private insurance were adversely associated with transfer to a metropolitan hospital and coronary angiography.
Conclusion
Disparity in receiving coronary angiography following emergency admission for IHD to rural hospitals is mediated through the lower likelihood of being transferred to metropolitan hospitals where this procedure is performed. The likelihood of a transfer is increased if the patient has private insurance, however, rural Aboriginal people have a lower rate of private insurance than their non-Aboriginal counterparts. Health practitioners and policy makers can continue to claim that they treat Aboriginal and non-Aboriginal people alike based upon clinical indications, as private insurance is acting as a filter to reduce rural residents accessing interventional cardiology. If health practitioners and policy makers are truly committed to reducing health disparities, they must reflect upon the broader systems in which disparity is perpetuated and work towards a systems improvement.
doi:10.1186/1471-2261-14-58
PMCID: PMC4021447  PMID: 24886321
Oceanic ancestry group; Ischaemic heart disease; Myocardial infarction; Healthcare Disparities; Rural Hospitals; Health Insurance; Coronary angiography
17.  The protocol for the Be Our Ally Beat Smoking (BOABS) study, a randomised controlled trial of an intensive smoking cessation intervention in a remote Aboriginal Australian health care setting 
BMC Public Health  2012;12:232.
Background
Australian Aboriginal peoples and Torres Strait Islanders (Indigenous Australians) smoke at much higher rates than non-Indigenous people and smoking is an important contributor to increased disease, hospital admissions and deaths in Indigenous Australian populations. Smoking cessation programs in Australia have not had the same impact on Indigenous smokers as on non-Indigenous smokers. This paper describes the protocol for a study that aims to test the efficacy of a locally-tailored, intensive, multidimensional smoking cessation program.
Methods/Design
This study is a parallel, randomised, controlled trial. Participants are Aboriginal and Torres Strait Islander smokers aged 16 years and over, who are randomly allocated to a 'control' or 'intervention' group in a 2:1 ratio. Those assigned to the 'intervention' group receive smoking cessation counselling at face-to-face visits, weekly for the first four weeks, monthly to six months and two monthly to 12 months. They are also encouraged to attend a monthly smoking cessation support group. The 'control' group receive 'usual care' (i.e. they do not receive the smoking cessation program). Aboriginal researchers deliver the intervention, the goal of which is to help Aboriginal peoples and Torres Strait Islanders quit smoking. Data collection occurs at baseline (when they enrol) and at six and 12 months after enrolling. The primary outcome is self-reported smoking cessation with urinary cotinine confirmation at 12 months.
Discussion
Stopping smoking has been described as the single most important individual change Aboriginal and Torres Strait Islander smokers could make to improve their health. Smoking cessation programs are a major priority in Aboriginal and Torres Strait Islander health and evidence for effective approaches is essential for policy development and resourcing. A range of strategies have been used to encourage Aboriginal peoples and Torres Strait Islanders to quit smoking however there have been few good quality studies that show what approaches work best. More evidence of strategies that could work more widely in Indigenous primary health care settings is needed if effective policy is to be developed and implemented. Our project will make an important contribution in this area.
Trial Registration
Australian New Zealand Clinical Trials Registry (ACTRN12608000604303)
doi:10.1186/1471-2458-12-232
PMCID: PMC3349500  PMID: 22439653
Indigenous; Aboriginal; Torres Strait Islander; Randomised controlled trial; Smoking cessation; Study protocol; Be Our Ally Beat Smoking (BOABS) Study
18.  Estimates of cancer incidence, mortality and survival in aboriginal people from NSW, Australia 
BMC Cancer  2012;12:168.
Background
Aboriginal status has been unreliably and incompletely recorded in health and vital registration data collections for the most populous areas of Australia, including NSW where 29% of Australian Aboriginal people reside. This paper reports an assessment of Aboriginal status recording in NSW cancer registrations and estimates incidence, mortality and survival from cancer in NSW Aboriginal people using multiple imputation of missing Aboriginal status in NSW Central Cancer Registry (CCR) records.
Methods
Logistic regression modelling and multiple imputation were used to assign Aboriginal status to those records of cancer diagnosed from 1999 to 2008 with missing Aboriginality (affecting 12-18% of NSW cancers registered in this period). Estimates of incidence, mortality and survival from cancer in NSW Aboriginal people were compared with the NSW total population, as standardised incidence and mortality ratios, and with the non-Aboriginal population.
Results
Following imputation, 146 (12.2%) extra cancers in Aboriginal males and 140 (12.5%) in Aboriginal females were found for 1999-2007. Mean annual cancer incidence in NSW Aboriginal people was estimated to be 660 per 100,000 and 462 per 100,000, 9% and 6% higher than all NSW males and females respectively. Mean annual cancer mortality in NSW Aboriginal people was estimated to be 373 per 100,000 in males and 240 per 100,000 in females, 68% and 73% higher than for all NSW males and females respectively. Despite similar incidence of localised cancer, mortality from localised cancer in Aboriginal people is significantly higher than in non-Aboriginal people, as is mortality from cancers with regional, distant and unknown degree of spread at diagnosis. Cancer survival in Aboriginal people is significantly lower: 51% of males and 43% of females had died of the cancer by 5 years following diagnosis, compared to 36% and 33% of non-Aboriginal males and females respectively.
Conclusion
The present study is the first to produce valid and reliable estimates of cancer incidence, survival and mortality in Australian Aboriginal people from NSW. Despite somewhat higher cancer incidence in Aboriginal than in non-Aboriginal people, substantially higher mortality and lower survival in Aboriginal people is only partly explained by more advanced cancer at diagnosis.
doi:10.1186/1471-2407-12-168
PMCID: PMC3520119  PMID: 22559220
19.  “People like numbers”: a descriptive study of cognitive assessment methods in clinical practice for Aboriginal Australians in the Northern Territory 
BMC Psychiatry  2013;13:42.
Background
Achieving culturally fair assessments of cognitive functioning for Aboriginal people is difficult due to a scarcity of appropriately validated tools for use with this group. As a result, some Aboriginal people with cognitive impairments may lack fair and equitable access to services. The objective of this study was to examine current clinical practice in the Northern Territory regarding cognitive assessment for Aboriginal people thereby providing some guidance for clinicians new to this practice setting.
Method
Qualitative enquiry was used to describe practice context, reasons for assessment, and current practices in assessing cognition for Aboriginal Australians. Semi-structured interviews were conducted with 22 clinicians working with Aboriginal clients in central and northern Australia. Results pertaining to assessment methods are reported.
Results
A range of standardised tests were utilised with little consistency across clinical practice. Nevertheless, it was recognised that such tests bear severe limitations, requiring some modification and significant caution in their interpretation. Clinicians relied heavily on informal assessment or observations, contextual information and clinical judgement.
Conclusions
Cognitive tests developed specifically for Aboriginal people are urgently needed. In the absence of appropriate, validated tests, clinicians have relied on and modified a range of standardised and informal assessments, whilst recognising the severe limitations of these. Past clinical training has not prepared clinicians adequately for assessing Aboriginal clients, and experience and clinical judgment were considered crucial for fair interpretation of test scores. Interpretation guidelines may assist inexperienced clinicians to consider whether they are achieving fair assessments of cognition for Aboriginal clients.
doi:10.1186/1471-244X-13-42
PMCID: PMC3598474  PMID: 23368850
Cognition; Assessment; Cross-cultural; Testing; Indigenous; Aboriginal
20.  Use of health services by remote dwelling Aboriginal infants in tropical northern Australia: a retrospective cohort study 
BMC Pediatrics  2012;12:19.
Background
Australia is a wealthy developed country. However, there are significant disparities in health outcomes for Aboriginal infants compared with other Australian infants. Health outcomes tend to be worse for those living in remote areas. Little is known about the health service utilisation patterns of remote dwelling Aboriginal infants. This study describes health service utilisation patterns at the primary and referral level by remote dwelling Aboriginal infants from northern Australia.
Results
Data on 413 infants were analysed. Following birth, one third of infants were admitted to the regional hospital neonatal nursery, primarily for preterm birth. Once home, most (98%) health service utilisation occurred at the remote primary health centre, infants presented to the centre about once a fortnight (mean 28 presentations per year, 95%CI 26.4-30.0). Half of the presentations were for new problems, most commonly for respiratory, skin and gastrointestinal symptoms. Remaining presentations were for reviews or routine health service provision. By one year of age 59% of infants were admitted to hospital at least once, the rate of hospitalisation per infant year was 1.1 (95%CI 0.9-1.2).
Conclusions
The hospitalisation rate is high and admissions commence early in life, visits to the remote primary health centre are frequent. Half of all presentations are for new problems. These findings have important implications for health service planning and delivery to remote dwelling Aboriginal families.
doi:10.1186/1471-2431-12-19
PMCID: PMC3384247  PMID: 22373262
21.  Access to health care among status Aboriginal people with chronic kidney disease 
Background
Ethnic disparities in access to health care and health outcomes are well documented. It is unclear whether similar differences exist between Aboriginal and non-Aboriginal people with chronic kidney disease in Canada. We determined whether access to care differed between status Aboriginal people (Aboriginal people registered under the federal Indian Act) and non-Aboriginal people with chronic kidney disease.
Methods
We identified 106 511 non-Aboriginal and 1182 Aboriginal patients with chronic kidney disease (estimated glomerular filtration rate less than 60 mL/min/1.73 m2). We compared outcomes, including hospital admissions, that may have been preventable with appropriate outpatient care (ambulatory-care–sensitive conditions) as well as use of specialist services, including visits to nephrologists and general internists.
Results
Aboriginal people were almost twice as likely as non-Aboriginal people to be admitted to hospital for an ambulatory-care–sensitive condition (rate ratio 1.77, 95% confidence interval [CI] 1.46–2.13). Aboriginal people with severe chronic kidney disease (estimated glomerular filtration rate < 30 mL/min/1.73 m2) were 43% less likely than non-Aboriginal people with severe chronic kidney disease to visit a nephrologist (hazard ratio 0.57, 95% CI 0.39–0.83). There was no difference in the likelihood of visiting a general internist (hazard ratio 1.00, 95% CI 0.83–1.21).
Interpretation
Increased rates of hospital admissions for ambulatory-care–sensitive conditions and a reduced likelihood of nephrology visits suggest potential inequities in care among status Aboriginal people with chronic kidney disease. The extent to which this may contribute to the higher rate of kidney failure in this population requires further exploration.
doi:10.1503/cmaj.080063
PMCID: PMC2572655  PMID: 18981441
22.  Exploring the expression of depression and distress in aboriginal men in central Australia: a qualitative study 
BMC Psychiatry  2012;12:97.
Background
Despite being at heightened risk of developing mental illness, there has been little research into the experience of depression in Australian Aboriginal populations. This study aimed to outline the expression, experience, manifestations and consequences of emotional distress and depression in Aboriginal men in central Australia.
Methods
Utilizing a grounded theory approach, in depth semi-structured interviews were conducted with 22 theoretically sampled young, middle aged and senior Aboriginal men and traditional healers. Analysis was conducted by a single investigator using constant comparison methods.
Results
Depressive symptoms were common and identifiable, and largely consistent with symptom profiles seen in non-Aboriginal groups. For Aboriginal men, depression was expressed and understood as primarily related to weakness or injury of the spirit, with a lack of reference to hopelessness and specific somatic complaints. The primary contributors to depression related to the loss of connection to social and cultural features of Aboriginal life, cumulative stress and marginalisation.
Conclusions
Depression and depressive symptomatology clearly exists in Aboriginal men, however its determinants and expression differ from mainstream populations. Emotions were understood within the construction of spirit, Kurunpa, which was vulnerable to repetitive and powerful negative social forces, loss, and stress across the life course, and served to frame the physical and emotional experience and expression of depression.
doi:10.1186/1471-244X-12-97
PMCID: PMC3441213  PMID: 22853622
23.  The overall health and risk factor profile of Australian Aboriginal and Torres Strait Islander participants from the 45 and up study 
BMC Public Health  2013;13:661.
Background
Despite large disparities in health outcomes between Aboriginal and non-Aboriginal Australians, detailed evidence on the health and lifestyle characteristics of older Aboriginal Australians is lacking. The aim of this study is to quantify socio-demographic and health risk factors and mental and physical health status among Aboriginal participants from the 45 and Up Study and to compare these with non-Aboriginal participants from the study.
Methods
The 45 and Up Study is a large-scale study of individuals aged 45 years and older from the general population of New South Wales, Australia responding to a baseline questionnaire distributed from 2006–2008. Odds ratios (OR) and 95% confidence intervals (CI) of self-reported responses from the baseline questionnaire for Aboriginal versus non-Aboriginal participants relating to socio-demographic factors, health risk factors, current and past medical and surgical history, physical disability, functional health limitations and levels of current psychological distress were calculated using unconditional logistic regression, with adjustments for age and sex.
Results
Overall, 1939 of 266,661 45 and Up Study participants examined in this study identified as Aboriginal and/or Torres Strait Islander (0.7%). Compared to non-Aboriginal participants, Aboriginal participants were significantly more likely to be: younger (mean age 58 versus 63 years); without formal educational qualifications (age- and sex- adjusted OR = 6.2, 95% CI 5.3-7.3); of unemployed (3.7, 2.9-4.6) or disabled (4.6, 3.9-5.3) work status; and with a household income < $20,000/year versus ≥ $70,000/year (5.8, 5.0-6.9). Following additional adjustment for income and education, Aboriginal participants were significantly more likely than non-Aboriginal participants to: be current smokers (2.4, 2.0-2.8), be obese (2.1, 1.8-2.5), have ever been diagnosed with certain medical conditions (especially: diabetes [2.1, 1.8-2.4]; depression [1.6, 1.4-1.8] and stroke [1.8, 1.4-2.3]), have care-giving responsibilities (1.8, 1.5-2.2); have a major physical disability (2.6, 2.2-3.1); have severe physical functional limitation (2.9, 2.4-3.4) and have very high levels of psychological distress (2.4, 2.0-3.0).
Conclusions
Aboriginal participants from the 45 and Up Study experience greater levels of disadvantage and have greater health needs (including physical disability and psychological distress) compared to non-Aboriginal participants. The study highlights the need to address the social determinants of health in Australia and to provide appropriate mental health services and disability support for older Aboriginal people.
doi:10.1186/1471-2458-13-661
PMCID: PMC3717143  PMID: 23866062
Aboriginal Australians; Torres Strait Islanders; 45 and Up study
24.  Aboriginal Families Study: a population-based study keeping community and policy goals in mind right from the start 
Background
Australian Aboriginal and Torres Strait Islander women are between two to five times more likely to die in childbirth than non-Aboriginal women, and two to three times more likely to have a low birthweight infant. Babies with a low birthweight are more likely to have chronic health problems in adult life. Currently, there is limited research evidence regarding effective interventions to inform new initiatives to strengthen antenatal care for Aboriginal families.
Method/Design
The Aboriginal Families Study is a cross sectional population-based study investigating the views and experiences of Aboriginal and non-Aboriginal women having an Aboriginal baby in the state of South Australia over a 2-year period. The primary aims are to compare the experiences and views of women attending standard models of antenatal care with those accessing care via Aboriginal Family Birthing Program services which include Aboriginal Maternal Infant Care (AMIC) Workers as members of the clinical team; to assess factors associated with early and continuing engagement with antenatal care; and to use the information to inform strengthening of services for Aboriginal families. Women living in urban, regional and remote areas of South Australia have been invited to take part in the study by completing a structured interview or, if preferred, a self-administered questionnaire, when their baby is between 4–12 months old.
Discussion
Having a baby is an important life event in all families and in all cultures. How supported women feel during pregnancy, how women and families are welcomed by services, how safe they feel coming in to hospitals to give birth, and what happens to families during a hospital stay and in the early months after the birth of a new baby are important social determinants of maternal, newborn and child health outcomes. The Aboriginal Families Study builds on consultation with Aboriginal communities across South Australia. The project has been implemented with guidance from an Aboriginal Advisory Group keeping community and policy goals in mind right from the start. The results of the study will provide a unique resource to inform quality improvement and strengthening of services for Aboriginal families.
doi:10.1186/1475-9276-12-41
PMCID: PMC3689616  PMID: 23767813
Antenatal care; Health inequalities; Indigenous health; Maternal health; Participatory research; Perinatal health outcomes
25.  Lifetime risk of developing coronary heart disease in Aboriginal Australians: a cohort study 
BMJ Open  2013;3(1):e002308.
Objectives
Lifetime risk of coronary heart disease (CHD) is an important yardstick by which policy makers, clinicians and the general public can assess and promote the awareness and prevention of CHD. The lifetime risk in Aboriginal people is not known. Using a cohort with up to 20 years of follow-up, we estimated the lifetime risk of CHD in Aboriginal people.
Design
A cohort study.
Setting
A remote Aboriginal region.
Participants
1115 Aboriginal people from one remote tribal group who were free from CHD at baseline were followed for up to 20 years.
Main outcome measures
During the follow-up period, new CHD incident cases were identified through hospital and death records. We estimated the lifetime risks of CHD with and without adjusting for the presence of competing risk of death from non-CHD causes.
Results
Participants were followed up for 17 126 person-years, during which 185 developed CHD and 144 died from non-CHD causes. The average age at which the first CHD event occurred was 48 years for men and 49 years for women. The risk of developing CHD increased with age until 60 years and then decreased with age. Lifetime cumulative risk without adjusting for competing risk was 70.7% for men and 63.8% for women. Adjusting for the presence of competing risk of death from non-CHD causes, the lifetime risk of CHD was 52.6% for men and 49.2% for women.
Conclusions
Lifetime risk of CHD is as high as one in two in both Aboriginal men and women. The average age of having first CHD events was under 50 years, much younger than that reported in non-Aboriginal populations. Our data provide useful knowledge for health education, screening and prevention of CHD in Aboriginal people.
doi:10.1136/bmjopen-2012-002308
PMCID: PMC3563122  PMID: 23370013
Epidemiology; Public Health

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