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1.  A Guide for Health Professionals Working with Aboriginal Peoples: Executive Summary 
Objective
to provide Canadian health professionals with a network of information and recommendations regarding Aboriginal health.
Options
health professionals working with Aboriginal individuals and communities in the area of women’s health care.
Outcomes
improved health status of Aboriginal peoples in Canada.
Appropriateness and accessibility of women’s health services for Aboriginal peoples.
Improved communication and clinical skills of health professionals in the area of Aboriginal health.
Improved quality of relationship between health professionals and Aboriginal individuals and communities.
Improved quality of relationship between health care professionals and Aboriginal individuals and communities.
Evidence
recommendations are based on expert opinion and a review of the literature. Published references were identified by a Medline search of all review articles, randomized clinical control trials, meta-analyses, and practice guidelines from 1966 to February 1999, using the MeSH headings “Indians, North American or Eskimos” and “Health.”* Subsequently published articles were brought to the attention of the authors in the process of writing and reviewing the document. Ancillary and unpublished references were recommended by members of the SOGC Aboriginal Health Issues Committee and the panel of expert reviewers.
Values
information collected was reviewed by the principal author. The social, cultural, political, and historic context of Aboriginal peoples in Canada, systemic barriers regarding the publication of information by Aboriginal authors, the diversity of Aboriginal peoples in Canada, and the need for a culturally appropriate and balanced presentation were carefully considered in addition to more traditional scientific evaluation. The majority of information collected consisted of descriptive health and social information and such evaluation tools as the evidence guidelines of the Canadian Task Force on the Periodic Health exam were not appropriate.
Benefits, costs, and harms
utilization of the information and recommendations by Canadian health professionals will enhance understanding, communication, and clinical skills in the area of Aboriginal health. The resulting enhancement of collaborative relationships between Aboriginal peoples and their women’s health providers may contribute to health services that are more appropriate, effective, efficient, and accessible for Aboriginal peoples in Canada. The educational process may require an initial investment of time from the health professional.
Recommendations
Recommendations were grouped according to four themes: sociocultural context, health concerns, cross-cultural understanding, and Aboriginal health resources. Health professionals are encouraged to learn the appropriate names, demographics, and traditional geographic territories and language groups of the various Aboriginal groups in Canada. In addition, sensitivity to the impact of colonization and current socioeconomic challenges to the health status of Aboriginal peoples is warranted. Health services for Aboriginal peoples should take place as close to home as possible. Governmental obligations and policies regarding determination are recognized. With respect to health concerns, holistic definitions of health, based on Aboriginal perspectives, are put forward. Aboriginal peoples continue to experience a disproportionate burden of health problems. Health professionals are encouraged to become familiar with several key areas of morbidity and mortality. Relationships between Aboriginal peoples and their care providers need to be based on a foundation of mutual respect. Gaps and barriers in the current health care system for Aboriginal peoples are identified. Health professionals are encouraged to work with Aboriginal individuals and communities to address these gaps and barriers. Aboriginal peoples require culturally appropriate health care, including treatment in their own languages when possible. This may require interpreters or Aboriginal health advocates. Health professionals are encouraged to recognize the importance of family and community roles, and to respect traditional medicines and healers. Health professionals can develop their sensitivities towards Aboriginal peoples by participating in workshops, making use of educational resources, and by spending time with Aboriginal peoples in their communities. Aboriginal communities and health professionals are encouraged to support community-based, community-directed health services and health research for Aboriginal peoples. In addition, the education of more Aboriginal health professionals is essential. The need for a preventative approach to health programming in Aboriginal communities is stressed.
Validation
recommendations were reviewed and revised by the SOGC Aboriginal Health Issues Committee, a panel of expert reviewers, and the SOGC Council. In addition, this document was also reviewed and supported by the Assembly of First Nations, Canadian Institute of Child Health, Canadian Paediatric Society, College of Family Physicians of Canada, Congress of Aboriginal Peoples, Federation of Medical Women of Canada, Inuit Tapirisat of Canada, Metis National Council, National Indian and Inuit Community Health Representatives Organization, and Pauktuutit Inuit Women’s Association.
Sponsor
Society of Obstetricians and Gynaecologists of Canada.
PMCID: PMC3653835  PMID: 23682204 CAMSID: cams2752
2.  Health research policy: a case study of policy change in Aboriginal and Torres Strait Islander health research 
Background
There is considerable potential for health research to contribute to improved health services, programs, and outcomes; the policies of health research funding agencies are critical to achieving health gains from research. The need for research to better address health disparities in Indigenous people has been widely recognised. This paper: (i) describes the policy changes made by the National Health and Medical Research Council (NHMRC) from 1997 to 2002 to improve funding of Aboriginal health research (ii) examines catalysts for the policy changes (iii) describes the extent to which policy changes were followed by new models of research and (iv) outlines issues for Indigenous health policy in the future.
Methods
This study had two parts: (i) semi-structured interviews were conducted over a four -month period with seven individuals who played a leading role in the policy changes at NHMRC during the period 1997–2002, to describe policy changes and to examine the catalysts for the changes; (ii) a case study was undertaken to evaluate projects by recipients of NHMRC People Support awards and NHMRC Capacity Building Grants in Population Health Research to examine the types of research being undertaken five years after the policy changes were implemented. The proposals of these researchers were assessed in terms of whether they reported intending to: evaluate interventions; engage Indigenous community members and organisations; and build research capacity among Indigenous people.
Results
Seven policy changes over a period of five years were identified, including those to: establish an ethical approach to working with Indigenous people; increase the influence of Indigenous people within NHMRC; encourage priority research directed at improving Indigenous health; and recognise Aboriginal and Torres Strait Islander health research as a priority area including a commitment to an expenditure target of 5% of annual funds. Seven catalysts for this change were identified. These included: a perceived lack of effective response to the health needs of Indigenous people; a changed perception of the role of NHMRC in encouraging research to maximise health gains; and leadership within the organisation.
The case study analysis demonstrated that 45% of all People Support recipients intend to engage Indigenous community members and organisations in consultation, 26% included an evaluation of an intervention and two (6.5%) were granted to an individual from an Indigenous background. Six of seven Population Health Capacity Building Grants that were awarded to study Indigenous health between 2004 and 2006 included an intervention component; these grants supported 34 researchers from Indigenous backgrounds.
Conclusion
NHMRC made significant policy changes from 1997 to 2002 to better support Indigenous health as a result of external pressure and internal commitment.
The policy changes have made some progress in supporting better research models particularly in improving engagement with Indigenous communities. However, there remains a need for further reform to optimise research outcomes for Indigenous people from research.
doi:10.1186/1743-8462-6-2
PMCID: PMC2657148  PMID: 19245696
3.  Aboriginal medical services cure more than illness: a qualitative study of how Indigenous services address the health impacts of discrimination in Brisbane communities 
Background
Aboriginal and Torres Strait Islanders persistently experience a significantly lower standard of health in comparison to non-Indigenous Australians. The factors contributing to this disparity are complex and entrenched in a history of social inequality, disempowerment, poverty, dispossession and discrimination. Aboriginal medical services (AMS) provide a culturally appropriate alternative to mainstream medical services as a means to address this health disparity and also advocate for Indigenous rights and empowerment. This study provides a vignette of lay perspectives of Aboriginal and Torres Strait Islanders accessing community and government controlled AMS in Brisbane, Queensland with the intention of identifying self-perceived health determinants to inform the post-2015 international development goals.
Methods
Focus group discussions and semi-structured interviews were held with clients of a government-controlled AMS and an Aboriginal community controlled health service (ACCHS) in order to identify their self-identified essential health needs. Conversations were audio recorded, transcribed verbatim and de-identified for analysis. Common themes were identified to highlight important issues around community health needs, how they can be addressed and what lessons can be extended to inform the post-2015 development goals.
Findings and discussion
Participants acknowledge the complexity of health determinants faced by their peoples. Thematic analysis highlighted the pervasive influence of racism through many perceived health determinants; resulting in reduced healthcare seeking behaviour, unhealthy lifestyles and mental health issues. Participants emphasised the marked health improvements seen due to the establishment of Aboriginal medical services in their communities and the importance of the AMS’ role in addressing the negative effects of discrimination on Indigenous health.
Conclusion
It is concluded from this study that AMS are crucial in addressing the negative impacts of continued discrimination on Indigenous health by providing comprehensive, culturally appropriate, community empowering health services. Such services improve Indigenous healthcare seeking rates, provide invaluable health education services and address mental health concerns in communities and must be supported in order to address health inequalities in Australia. Community driven and culturally informed health services should be encouraged globally to address health disparities.
doi:10.1186/1475-9276-13-56
PMCID: PMC4283121  PMID: 25301439
Discrimination; Indigenous; Aboriginal; Community controlled health services; Healthcare-seeking behaviour; Fear; Mental health; Australia
4.  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
5.  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
6.  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
7.  ‘Doing the hard yards’: carer and provider focus group perspectives of accessing Aboriginal childhood disability services 
Background
Despite a high prevalence of disability, Aboriginal Australians access disability services in Australia less than non-Aboriginal Australians with a disability. The needs of Aboriginal children with disability are particularly poorly understood. They can endure long delays in treatment which can impact adversely on development. This study sought to ascertain the factors involved in accessing services and support for Aboriginal children with a disability.
Methods
Using the focus group method, two community forums, one for health and service providers and one for carers of Aboriginal children with a disability, were held at an Aboriginal Community Controlled Health Service (ACCHS) in the Sydney, metropolitan area of New South Wales, Australia. Framework analysis was applied to qualitative data to elucidate key issues relevant to the dimensions of access framework. Independent coding consistency checks were performed and consensus of analysis verified by the entire research team, several of whom represented the local Aboriginal community.
Results
Seventeen health and social service providers representing local area government and non-government-funded health and social service organisations and five carers participated in two separate forums between September and October 2011. Lack of awareness of services and inadequate availability were prominent concerns in both groups despite geographic proximity to a major metropolitan area with significant health infrastructure. Carers noted racism, insufficient or non-existent services, and the need for an enhanced role of ACCHSs and AHWs in disability support services. Providers highlighted logistical barriers and cultural and historical issues that impacted on the effectiveness of mainstream services for Aboriginal people.
Conclusions
Despite dedicated disability services in an urban community, geographic proximity does not mitigate lack of awareness and availability of support. This paper has enumerated a number of considerations to address provision of disability services in an urban Australian Aboriginal community including building expertise and specialist capacity within Aboriginal Health Worker positions and services.
Increasing awareness of services, facilitating linkages and referrals, eliminating complexities to accessing support, and working with families and Aboriginal community organisations within a framework of resilience and empowerment to ensure a relevant and acceptable model are necessary steps to improving support and care for Aboriginal children with a disability.
doi:10.1186/1472-6963-13-326
PMCID: PMC3765087  PMID: 23958272
Childhood disability; Aboriginal and Torres Strait Islander peoples; Early intervention; Focus groups
8.  Chlamydia among Australian Aboriginal and/or Torres Strait Islander people attending sexual health services, general practices and Aboriginal community controlled health services 
Background
Chlamydia infections are notified at much higher rates in Aboriginal and/or Torres Strait Islander people compared to non-Indigenous people. The Australian Collaboration Chlamydia Enhanced Sentinel Surveillance System (ACCESS) was established to complement population-based surveillance.
Methods
We describe patient demographics, completeness of recording of Aboriginal and/or Torres Strait Islander (‘Aboriginal’) status, chlamydia testing rates and positivity rates from the Aboriginal Community Controlled Health Service (ACCHSs), General Practice (GP) clinics and Sexual Health Services (SHSs) networks in ACCESS during 2009. Data were extracted from electronic medical records of each participating health service for consultations with patients aged 16–29 years and for chlamydia testing and positivity.
Results
Data were included from 16–29 year olds attending six ACCHSs (n = 4,950); 22 SHSs (n = 20,691) and 25 GP clinics (n = 34,462). Aboriginal status was unknown for 79.3% of patients attending GP clinics, 4.5% attending SHSs and 3.8% of patients attending ACCHSs. Chlamydia testing rates among Aboriginal patients were 19.8% (95%CI:18.6%-21.0%) at ACCHSs, 75.5% (95% CI:72.5%-78.4%) at SHSs and 4.3% (95% CI: 2.6%-6.6%) at GP clinics. Positivity rates were highest in Aboriginal patients tested at SHSs at 22.7% (95% CI:19.5%-26.2%), followed by 15.8% (95% CI:3.8%-43.4%) at GP clinics and 8.6% at ACCHSs (95% CI:7.9%-12.4%). This compared with non-Indigenous patients positivity rates at SHSs of 12.7% (95% CI:12.2-13.2%); 8.6% (7.2%-11.3%) at GP clinics and 11.3% at ACCHSs (95% CI:15.4%-24.9%).
Conclusions
Higher chlamydia positivity in Aboriginal people across a range of clinical services is reflected in national notification data. Targeted efforts are required to improve testing rates in primary care services; to improve identification of Aboriginal patients in mainstream services such as GP clinics; and to better engage with young Aboriginal Australians.
doi:10.1186/1472-6963-14-285
PMCID: PMC4094446  PMID: 24981418
Chlamydia; Aboriginal and Torres Strait Islander people; Testing; Positivity; Indigenous; Australia
9.  Indigenous Health and Socioeconomic Status in India 
PLoS Medicine  2006;3(10):e421.
Background
Systematic evidence on the patterns of health deprivation among indigenous peoples remains scant in developing countries. We investigate the inequalities in mortality and substance use between indigenous and non-indigenous, and within indigenous, groups in India, with an aim to establishing the relative contribution of socioeconomic status in generating health inequalities.
Methods and Findings
Cross-sectional population-based data were obtained from the 1998–1999 Indian National Family Health Survey. Mortality, smoking, chewing tobacco use, and alcohol use were four separate binary outcomes in our analysis. Indigenous status in the context of India was operationalized through the Indian government category of scheduled tribes, or Adivasis, which refers to people living in tribal communities characterized by distinctive social, cultural, historical, and geographical circumstances.
Indigenous groups experience excess mortality compared to non-indigenous groups, even after adjusting for economic standard of living (odds ratio 1.22; 95% confidence interval 1.13–1.30). They are also more likely to smoke and (especially) drink alcohol, but the prevalence of chewing tobacco is not substantially different between indigenous and non-indigenous groups. There are substantial health variations within indigenous groups, such that indigenous peoples in the bottom quintile of the indigenous-peoples-specific standard of living index have an odds ratio for mortality of 1.61 (95% confidence interval 1.33–1.95) compared to indigenous peoples in the top fifth of the wealth distribution. Smoking, drinking alcohol, and chewing tobacco also show graded associations with socioeconomic status within indigenous groups.
Conclusions
Socioeconomic status differentials substantially account for the health inequalities between indigenous and non-indigenous groups in India. However, a strong socioeconomic gradient in health is also evident within indigenous populations, reiterating the overall importance of socioeconomic status for reducing population-level health disparities, regardless of indigeneity.
Indigenous groups in India were found to have excess mortality rates compared with non-indigenous groups. A socioeconomic gradient within indigenous populations was also found.
Editors' Summary
Background.
In many parts of the world the majority of the population are the descendants of immigrants who arrived there within the last few hundred years. Living alongside of them, and in a minority, are the so-called indigenous (or aboriginal) people who are the descendants of people who lived there in more ancient times. It is estimated that there are 300 million indigenous people worldwide. They are frequently marginalized from the rest of the population, their human rights are often abused, and there are serious concerns about their health and welfare. The state of health of the indigenous people of developed countries such as the US and Australia has often been studied, and we have a fairly clear idea of the kinds of problems these people face. Most indigenous people, however, live in developing countries, and less is known about their health.
India is the second-most populous country in the world, with an estimated 1.1 billion inhabitants. An estimated 90 million indigenous people live in India, where they are often referred to as “scheduled tribes” or Adivasis. They live in many parts of the country but are much more numerous in some Indian states than in others.
Why Was This Study Done?
It has often been said that indigenous people in India have worse health than other Indians, though no figures have been compiled to confirm these claims. The researchers wanted to establish whether it is simply an issue of indigenous people being poorer than other Indians—poverty being well known as a cause of disease—or whether being indigenous is, in itself, a health risk. The researchers also wanted to establish whether there are health inequalities within indigenous groups, and if these differences also followed a socioeconomic patterning.
What Did the Researchers Do and Find?
They used figures collected in the 1998–1999 Indian National Family Health Survey. When this survey was conducted, it was noted whether people were considered to be members of scheduled tribes. The researchers also knew, from the survey, about the income of the families, their death rates, and whether they drank alcohol or smoked or chewed tobacco. They found that indigenous people had higher death rates than other Indians. They made statistical calculations to account for differences in standard of living, and this substantially reduced the difference in death rate among indigenous groups, but an indigenous person was still 1.2 times more likely to die than a non-indigenous person with the same standard of living. Indigenous people were also more likely to drink alcohol and smoke tobacco, and here again, differences in standard of living accounted for a substantial portion of the differences. Importantly, the researchers' analysis showed a strong socioeconomic patterning of health inequalities within the indigenous population groups: the health differences between the poorest and richest indigenous groups were similar in scale to the differences between the poorest and richest non-indigenous groups.
What Do These Findings Mean?
The authors consider their finding that there is a socioeconomic gradient in mortality and health behaviors among indigenous people to be an important result from the study. The socioeconomic marginalization of indigenous people from the rest of Indian society does seem to increase their health risks, and so does their use of alcohol and tobacco. However, if their standard of living can be improved there would be major benefits for their health and welfare.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0030421.
A useful discussion of the term “indigenous people” (with links to documents about international agreements intended to improve their human rights) may be found on Wikipedia. (Wikipedia is an internet encyclopedia that anyone can edit.)
Survival International is a human rights organization that campaigns for the rights of indigenous peoples, helping them preserve their land and culture.
The charity Health Unlimited also works with indigenous people and its Web site includes links to recent studies and conferences.
A news item from the BBC describes a recent investigation into the health of indigenous people worldwide.
The World Health Organization has produced a number of reports on the health of indigenous people
doi:10.1371/journal.pmed.0030421
PMCID: PMC1621109  PMID: 17076556
10.  STI in remote communities: improved and enhanced primary health care (STRIVE) study protocol: a cluster randomised controlled trial comparing ‘usual practice’ STI care to enhanced care in remote primary health care services in Australia 
BMC Infectious Diseases  2013;13:425.
Background
Despite two decades of interventions, rates of sexually transmissible infections (STI) in remote Australian Aboriginal communities remain unacceptably high. Routine notifications data from 2011 indicate rates of chlamydia and gonorrhoea among Aboriginal people in remote settings were 8 and 61 times higher respectively than in the non-Indigenous population.
Methods/design
STRIVE is a stepped-wedge cluster randomised trial designed to compare a sexual health quality improvement program (SHQIP) to usual STI clinical care delivered in remote primary health care services. The SHQIP is a multifaceted intervention comprising annual assessments of sexual health service delivery, implementation of a sexual health action plan, six-monthly clinical service activity data reports, regular feedback meetings with a regional coordinator, training and financial incentive payments. The trial clusters comprise either a single community or several communities grouped together based on geographic proximity and cultural ties. The primary outcomes are: prevalence of chlamydia, gonorrhoea and trichomonas in Aboriginal residents aged 16–34 years, and performance in clinical management of STIs based on best practice indicators. STRIVE will be conducted over five years comprising one and a half years of trial initiation and community consultation, three years of trial conditions, and a half year of data analysis. The trial was initiated in 68 remote Aboriginal health services in the Northern Territory, Queensland and Western Australia.
Discussion
STRIVE is the first cluster randomised trial in STI care in remote Aboriginal health services. The trial will provide evidence to inform future culturally appropriate STI clinical care and control strategies in communities with high STI rates.
Trial registration
Australian and New Zealand Clinical Trials Registry ACTRN12610000358044
doi:10.1186/1471-2334-13-425
PMCID: PMC3847940  PMID: 24016143
Aboriginal; Indigenous; Sexually transmitted infections; Chlamydia; Gonorrhoea; Trichomonas; Continuous quality improvement; Protocol; Prevalence; Remote
11.  Voting with their feet - predictors of discharge against medical advice in Aboriginal and non-Aboriginal ischaemic heart disease inpatients in Western Australia: an analytic study using data linkage 
Background
Discharge Against Medical Advice (DAMA) from hospital is associated with adverse outcomes and is considered an indicator of the responsiveness of hospitals to the needs of Aboriginal and Torres Strait Islander Australians, the indigenous people of Australia. We investigated demographic and clinical factors that predict DAMA in patients experiencing their first-ever inpatient admission for ischaemic heart disease (IHD). The study focuses particularly on the differences in the risk of DAMA in Aboriginal and non-Aboriginal patients while also investigating other factors in their own right.
Methods
A cross-sectional analytical study was undertaken using linked hospital and mortality data with complete coverage of Western Australia. Participants included all first-ever IHD inpatients (aged 25–79 years) admitted between 2005 and 2009, selected after a 15-year clearance period and who were discharged alive. The main outcome measure was DAMA as reflected in the hospital record.
Multiple logistic regression was used to determine disparities in DAMA between Aboriginal and non-Aboriginal patients, adjusting for a range of demographic and clinical factors, including comorbidity based on 5-year hospitalization history. A series of additional models were run on subgroups of the cohort to refine the analysis. Ethics approval was granted by the WA Human Research and the WA Aboriginal Health Ethics Committees.
Results
Aboriginal patients comprised 4.3% of the cohort of 37,304 IHD patients and 23% of the 224 DAMAs. Emergency admission (OR=5.9, 95% CI 2.9-12.2), alcohol admission history (alcohol-related OR=2.9, 95% CI 2.0-4.2) and Aboriginality (OR 2.3, 95% CI 1.5-3.5) were the strongest predictors of DAMA in the multivariate model. Patients living in rural areas while attending non-metropolitan hospitals had a 50% higher risk of DAMA than those living and hospitalised in metropolitan areas. There was consistency in the ORs for Aboriginality in the different multivariate models using restricted sub-cohorts and different Aboriginal identifiers. Sex, IHD diagnosis type and co-morbidity scores imparted different risks in Aboriginal versus non-Aboriginal patients.
Conclusions
Understanding the risks and reasons for DAMA is important for health system policy and proactive management of those at risk of DAMA. Improving care to prevent DAMA should target unplanned admissions, rural hospitals and young men, Aboriginal people and those with alcohol and mental health comorbidities.
doi:10.1186/1472-6963-13-330
PMCID: PMC3765140  PMID: 23962275
Discharge against medical advice; Aboriginal health; Ischaemic Heart Disease; Linked data; Australia
12.  Aboriginal and Torres Strait Islander Worldviews and Cultural Safety Transforming Sexual Assault Service Provision for Children and Young People 
Child Sexual Assault (CSA) in Aboriginal and Torres Strait Islander communities is a complex issue that cannot be understood in isolation from the ongoing impacts of colonial invasion, genocide, assimilation, institutionalised racism and severe socio-economic deprivation. Service responses to CSA are often experienced as racist, culturally, financially and/or geographically inaccessible. A two-day forum, National Yarn Up: Sharing the Wisdoms and Challenges of Young People and Sexual Abuse, was convened by sexual assault services to identify the main practice and policy concerns regarding working with Aboriginal and Torres Strait Islander children and young people (C&YP), families and communities in the context of CSA. The forum also aimed to explore how services can become more accountable and better engaged with the communities they are designed to support. The forum was attended by eighty invited Aboriginal and Torres Strait Islander and non-Aboriginal youth sexual assault managers and workers representing both “victim” and “those who sexually harm others” services. In keeping with Aboriginal Community-Based Research methods forum participants largely directed discussions and contributed to the analysis of key themes and recommendations reported in this article. The need for sexual assault services to prioritise cultural safety by meaningfully integrating Aboriginal and Torres Strait Islander Worldviews emerged as a key recommendation. It was also identified that collaboration between “victims” and “those who sexually harm” services are essential given Aboriginal and Torres Strait Islander C&YP who sexually harm others may have also been victims of sexual assault or physical violence and intergenerational trauma. By working with the whole family and community, a collaborative approach is more likely than the current service model to develop cultural safety and thus increase the accessibility of sexual assault services.
doi:10.3390/ijerph10093818
PMCID: PMC3799501  PMID: 23975109
Aboriginal and Torres Strait Islander people; children and young people; child sexual assault; those who sexually harm others; trauma; gender; cultural safety; aboriginal worldviews; aboriginal community-based participation research methods
13.  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
14.  Validation of risk assessment scales and predictors of intentions to quit smoking in Australian Aboriginal and Torres Strait Islander peoples: a cross-sectional survey protocol 
BMJ Open  2014;4(6):e004887.
Introduction
Tobacco smoking is a very significant behavioural risk factor for the health of Australian Aboriginal and Torres Strait Islanders, and is embedded as a social norm. With a focus on women of childbearing age, and men of similar age, this project aims to determine how Aboriginal and Torres Strait Islander smokers assess smoking risks and how these assessments contribute to their intentions to quit. The findings from this pragmatic study should contribute to developing culturally targeted interventions.
Methods and analysis
A cross-sectional study using quantitative and qualitative data. A total of 120 Aboriginal and Torres Strait Islander community members aged 18–45 years will be recruited at community events and through an Aboriginal Community Controlled Health Service (ACCHS). Participants will be interviewed using a tablet computer or paper survey. The survey instrument uses modified risk behaviour scales, that is, the Risk Behaviour Diagnosis (RBD) scale and the Smoking Risk Assessment Target (SRAT) (adapted from the Risk Acceptance Ladder) to determine whether attitudes of Aboriginal and Torres Strait Islander smokers to health risk messages are predictors of intentions to quit smoking.
The questionnaire will be assessed for face and content validity with a panel of Indigenous community members. The internal consistency of the RBD subscales and their patterns of correlation will be explored. Multivariate analyses will examine predictors of intentions to quit. This will include demographics such as age, gender, nicotine dependence, household smoking rules and perceived threat from smoking and efficacy for quitting. The two risk-assessment scales will be examined to see whether participant responses are correlated.
Ethics and dissemination
The Aboriginal Health & Medical Research Council Ethics Committee and university ethics committees approved the study. The results will be published in a peer-reviewed journal and a community report will be disseminated by the ACCHS, and at community forums.
Note about terminology
We use the term Aboriginal and Torres Strait Islander peoples, except where previous research has reported findings from only one group for example, Aboriginal people. Indigenous is used here to refer to Indigenous peoples in the international context, and issues, policies or systems, for example, Indigenous health, Indigenous tobacco control.
doi:10.1136/bmjopen-2014-004887
PMCID: PMC4054635  PMID: 24902729
PREVENTIVE MEDICINE; PUBLIC HEALTH
15.  Study Protocol – Diabetes and related conditions in urban Indigenous people in the Darwin, Australia region: aims, methods and participation in the DRUID Study 
BMC Public Health  2006;6:8.
Background
Diabetes mellitus is a serious and increasing health problem in Australia and is a designated national health priority. Diabetes and related conditions represent an even greater health burden among Indigenous Australians (Aborigines and Torres Strait Islanders), but there are critical gaps in knowledge relating to the incidence and prevalence, aetiology, and prevention of diabetes in this group, including a lack of information on the burden of disease among Indigenous people in urban areas. The DRUID Study (Diabetes and Related conditions in Urban Indigenous people in the Darwin region) was designed to address this knowledge gap.
Methods/design
The study was conducted in a specified geographic area in and around Darwin, Australia. Eligible participants underwent a health examination, including collection of blood and urine samples, clinical and anthropometric measurements, and administration of questionnaires, with an additional assessment for people with diabetes. The study was designed to incorporate local Indigenous leadership, facilitate community engagement, and provide employment and training opportunities for local Indigenous people. A variety of recruitment methods were used. A total of 1,004 eligible people gave consent and provided at least one measurement. When compared with census data for the Indigenous population living in the study area, there was a marked under-representation of males, but no substantial differences in age, place of residence, Indigenous group, or household income. Early participants were more likely than later participants to have previously diagnosed diabetes.
Discussion
Despite lower than anticipated recruitment, this is, to our knowledge, the largest study ever conducted on the health of Indigenous Australians living in urban areas, a group which comprises the majority of Australia's Indigenous population but about whose health and wellbeing relatively little is known. The study is well-placed to provide new information that can be used by policy makers and service providers to improve the delivery of services and programs that affect the health of Indigenous people. It also represents a valuable opportunity to establish an urban Indigenous cohort study, provided participants can be followed successfully over time.
doi:10.1186/1471-2458-6-8
PMCID: PMC1373687  PMID: 16417641
16.  "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
17.  Comparison of the uptake of health assessment items for Aboriginal and Torres Strait Islander people and other Australians: Implications for policy 
Background
Health Assessment (HA) items were introduced in 1999 for Aboriginal and Torres Strait Islander people aged at least 55 years and all Australians aged over 75 years. In 2004 a new item was introduced for HAs among adult Aboriginal and Torres Strait Islander people aged 15–54 years. The new item has been applauded as a major policy innovation however this enthusiasm has been tempered with concern about potential barriers to its uptake. In this study we aim to determine whether there are disparities in uptake of HA items for Aboriginal and Torres Strait Islander people compared to other Australians.
Method
The analysis was based on Health Insurance Commission data. Indigenous status was ascertained based on the item number used. Logistic regression was used to compare uptake of HA items for older people among Aboriginal and Torres Strait Islander people compared to other Australians. Adjustments were made for dual eligibility. Uptake of the HA items for older people was compared to the uptake of the new item for Aboriginal and Torres Strait Islander people aged 15–44 years.
Results
Our analyses suggest a significant and persistent disparity in the uptake of items for older patients among Aboriginal and Torres Strait Islander people compared to other Australians. A similar disparity appears to exist in the uptake of the new adult Aboriginal and Torres Strait Islander HA item.
Conclusion
Further engagement of primary care providers and the community around the uptake of the new HA items may be required to ensure that the anticipated health benefits eventuate.
doi:10.1186/1743-8462-2-21
PMCID: PMC1239906  PMID: 16150154
18.  Is peer review useful in assessing research proposals in Indigenous health? A case study 
Background
There has been considerable examination and critique of traditional (academic) peer review processes in quality assessment of grant applications. At the same time, the use of traditional research processes in Indigenous research has been questioned. Many grant funding organisations have changed the composition of their peer review panels to reflect these concerns but the question remains do these reforms go far enough? In this project we asked people working in areas associated with Aboriginal health research in a number of capacities, their views on the use of peer review in assessing Indigenous research proposals.
Methods
In semi-structured interviews we asked 18 individuals associated with an Australian Indigenous research funding organisation to reflect on their experience with peer review in quality assessment of grant applications. We also invited input from a steering group drawn from a variety of organisations involved in Aboriginal research throughout Australia and directly consulted with three Aboriginal-controlled health organisations.
Results
There was consensus amongst all participants that traditional academic peer review is inappropriate for quality assessment in Indigenous research. Many expressed the view that using a competitive grant review system in Aboriginal health was counterintuitive, since good research transfer is based on effective collaboration. The consensus within the group favoured a system which built research in a collaborative manner incorporating a variety of different stakeholders in the process. In this system, one-off peer review was still seen as valuable in the form of a "critical friend" who provided advice as to how to improve the research proposal.
Conclusion
Peer review in the traditional mould should be recognised as inappropriate in Aboriginal research. Building research projects relevant to policy and practice in Indigenous health may require a shift to a new way of selecting, funding and conducting research.
doi:10.1186/1478-4505-7-2
PMCID: PMC2654449  PMID: 19216770
19.  “Makes you proud to be black eh?”: Reflections on meaningful Indigenous research participation 
Introduction
This article outlines the meaningful participation of eight Aboriginal and Torres Strait Islander community members employed as community researchers investigating the impact of pandemic influenza in rural and remote Indigenous communities in Australia. Aboriginal and Torres Strait Islander participation is now a requirement of health research involving Aboriginal and Torres Strait Islander communities. There is a growing literature on the different approaches to such involvement. Fundamental to this literature is an acknowledgement that Indigenous communities are no longer prepared to be research objects for external, mostly non-Indigenous researchers, and demand a role in decisions about what is researched and how it will be researched. In this paper, we describe the protracted process for site identification and recruitment and training of community researchers. We focus on the backgrounds of the Indigenous researchers and their motivations for involvement, and the strengths and challenges posed by Indigenous people researching in their own communities. Throughout the paper our concern is to document how genuine participation and the building of research capacity can occur.
Discussion
A key feature of the research was the employment, training and strengthening the capacity of local Aboriginal and Torres Strait Islander community members in the role of community researchers. A series of training workshops were conducted in northern Australia and focussed on qualitative research methods, including data collection, data analysis and writing. The Indigenous researchers collected the community-based data, and worked in partnership with experienced academic researchers in the analysis and compilation of community reports. Parts of those community reports, as well as additional information supplied by the community researchers, forms the basis of this article. As the demand increases for involvement of Indigenous community members as researchers, focus needs to be paid to what constitutes meaningful participation. If active participation in all aspects of the research process is intended, this necessitates close attention to the knowledge and skills required for this to occur at every stage. Building research capacity means not simply equipping local people to undertake research on a particular project, but to have the knowledge and skills to undertake research in other areas.
Conclusions
There are considerable benefits for Indigenous people researching in their own communities. Most important for the community researchers on this project was the sense that they were doing important health work, not just conducting research. Given the persistent gaps between Indigenous and non-Indigenous health, this is perhaps one of the most important contributions of this type of research. Whilst research outcomes are undoubtedly important, in many cases the process used is of greater importance.
doi:10.1186/1475-9276-11-40
PMCID: PMC3439313  PMID: 22873769
Indigenous; Participatory action research; Aboriginal; Torres Strait Islander; Participation
20.  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
21.  Mortality in an Aboriginal Medical Service (Redfern) cohort 
Background
Published estimates of Aboriginal mortality and life expectancy (LE) for the eastern Australian states are derived from demographic modelling techniques to estimate the population and extent of under-recording of Aboriginality in death registration. No reliable empirical information on Aboriginal mortality and LE exists for New South Wales (NSW), the most populous Australian state in which 29% of Aboriginal people reside.
This paper estimates mortality and LE in a large, mainly metropolitan cohort of Aboriginal clients from the Aboriginal Medical Service (AMS) Redfern, Sydney, NSW.
Methods
Identifying information from patient records accrued by the AMS Redfern since 1980 of definitely Aboriginal clients, without distinction between Aboriginal and Torres Strait Islander (n=24,035), was extracted and linked to the National Death Index (NDI) at the Australian Institute of Health and Welfare (AIHW). Age-specific mortality rates and LEs for each sex were estimated using the AMS patient population as the denominator, discounted for deaths. Directly age-standardised mortality and LEs were estimated for 1995–1999, 2000–2004 and 2005–2009, along with 95% confidence intervals. Comparisons were made with other estimates of Aboriginal mortality and LE and with the total Australian population.
Results
Mortality declined in the AMS Redfern cohort over 1995–2009, and the decline occurred mostly in the ≤44 year age range. Male LE at birth was estimated to be 64.4 years (95%CI:62.6-66.1) in 1995–1999, 65.6 years (95%CI:64.1-67.1) in 2000–2004, and 67.6 years (95%CI:65.9-69.2) for 2005–2009. In females, these LE estimates were 69.6 (95%CI:68.0-71.2), 71.1 (95%CI:69.9-72.4), and 71.4 (95%CI:70.0-72.8) years. LE in the AMS cohort was 11 years lower for males and 12 years lower for females than corresponding all-Australia LEs for the same periods. These were similar to estimates for Australian Aboriginal people overall for the same period by the Aboriginal Burden of Disease for 2009, using the General Growth Balance (GGB) model approach, and by the Australian Bureau of Statistics (ABS) for 2005–2007. LE in the AMS cohort was somewhat lower than these estimates for NSW Aboriginal people, and higher than ABS 2005–2007 estimates for Aboriginal people from Northern Territory, South Australia, and Western Australia.
Conclusions
The AMS Redfern cohort has provided the first empirically based estimates of mortality and LE trends in a large sample of Aboriginal people from NSW.
doi:10.1186/1478-7954-11-2
PMCID: PMC3602118  PMID: 23391275
22.  Study Protocol: establishing good relationships between patients and health care providers while providing cardiac care. Exploring how patient-clinician engagement contributes to health disparities between indigenous and non-indigenous Australians in South Australia 
Background
Studies that compare Indigenous Australian and non-Indigenous patients who experience a cardiac event or chest pain are inconclusive about the reasons for the differences in-hospital and survival rates. The advances in diagnostic accuracy, medication and specialised workforce has contributed to a lower case fatality and lengthen survival rates however this is not evident in the Indigenous Australian population. A possible driver contributing to this disparity may be the impact of patient-clinician interface during key interactions during the health care process.
Methods/Design
This study will apply an Indigenous framework to describe the interaction between Indigenous patients and clinicians during the continuum of cardiac health care, i.e. from acute admission, secondary and rehabilitative care. Adopting an Indigenous framework is more aligned with Indigenous realities, knowledge, intellects, histories and experiences. A triple layered designed focus group will be employed to discuss patient-clinician engagement. Focus groups will be arranged by geographic clusters i.e. metropolitan and a regional centre. Patient informants will be identified by Indigenous status (i.e. Indigenous and non-Indigenous) and the focus groups will be convened separately. The health care provider focus groups will be convened on an organisational basis i.e. state health providers and Aboriginal Community Controlled Health Services. Yarning will be used as a research method to facilitate discussion. Yarning is in congruence with the oral traditions that are still a reality in day-to-day Indigenous lives.
Discussion
This study is nestled in a larger research program that explores the drivers to the disparity of care and health outcomes for Indigenous and non-Indigenous Australians who experience an acute cardiac admission. A focus on health status, risk factors and clinical interventions may camouflage critical issues within a patient-clinician exchange. This approach may provide a way forward to reduce the appalling health disadvantage experienced within the Indigenous Australian communities.
doi:10.1186/1472-6963-12-397
PMCID: PMC3547801  PMID: 23151213
Patient-clinician engagement; Qualitative; Cardiovascular disease; Focus groups; Indigenous methodology; Oceanic; Cardiac care
23.  Aboriginal health research in the remote Kimberley: an exploration of perceptions, attitudes and concerns of stakeholders 
Background
For decades Indigenous peoples have argued for health research reform claiming methods used and results obtained often reflect the exploitative history of colonisation. In 2006 the Kimberley Aboriginal Health Planning Forum (KAHPF) Research Subcommittee (hereafter, the Subcommittee) was formed to improve research processes in the remote Kimberley region of north Western Australia. This paper explores the major perceptions, attitudes and concerns of stakeholders in the Subcommittee.
Methods
Qualitative analysis was carried out on data retrospectively collected from multiple evidentiary sources linked to the Subcommittee i.e. database, documents, interviews, review forms and emails from 1 January 2007 to 31 October 2013.
Results
From 1 January 2007 to 30 June 2013 the Subcommittee received 95 proposals, 57 (60%) driven by researchers based outside the region. Local stakeholders (22 from 12 different Kimberley organisations) raised concerns about 36 (38%) projects, 30 (83%) of which were driven by external researchers. Major concerns of local stakeholders were inadequate community consultation and engagement; burden of research on the region; negative impact of research practices; lack of demonstrable community benefit; and power and control of research. Major themes identified by external stakeholders (25 external researchers who completed the review form) were unanticipated difficulties with consultation processes; barriers to travel; perceiving research as a competing priority for health services and time-consuming ethics processes. External stakeholders also identified strategies for improving research practices in the Kimberley: importance of community support in building good relationships; employing local people; flexibility in research approaches; and importance of allocating sufficient time for consultation and data collection.
Conclusions
Health research in the Kimberley has improved in recent years, however significant problems remain. Prioritising research addressing genuine local needs is essential in closing the gap in Indigenous life expectancy. The long-term aim is for local health service connected researchers to identify priorities, lead, conduct and participate in the majority of local health research. For this to occur, a more radical move involving reconceptualising the research process is needed. Changes to institutional timeframes and funding processes could improve Indigenous and community-based research.
doi:10.1186/s12913-014-0517-1
PMCID: PMC4213490  PMID: 25343849
Aboriginal and Torres Strait Islander research; Ethics; Kimberley Aboriginal Health Planning Forum Research Subcommittee; Community consultation; Research processes; Decolonising research
24.  The perspectives of Aboriginal patients and their health care providers on improving the quality of hemodialysis services: A qualitative study 
Chronic kidney disease has a higher prevalence in Indigenous populations globally. The incidence of end-stage kidney disease in Australian Aboriginal people is eight times higher than non-Aboriginal Australians. Providing services to rural and remote Aboriginal people with chronic disease is challenging because of access and cultural differences. This study aims to describe and analyze the perspectives of Aboriginal patients' and health care providers' experience of renal services, to inform service improvement for rural Aboriginal hemodialysis patients. We conducted a thematic analysis of interviews with Aboriginal patients (n = 18) receiving hemodialysis in rural Australia and health care providers involved in their care (n = 29). An overarching theme of avoiding the “costly” crisis encompassed four subthemes: (1) Engaging patients earlier (prevent late diagnosis, slow disease progression); (2) flexible family-focused care (early engagement of family, flexibility to facilitate family and cultural obligations); (3) managing fear of mainstream services (originating in family dialysis experiences and previous racism when engaging with government organizations); (4) service provision shaped by culture (increased home dialysis, Aboriginal support and Aboriginal-led cultural education). Patients and health care providers believe service redesign is required to meet the needs of Aboriginal hemodialysis patients. Participants identified early screening and improving the relationship of Aboriginal people with health systems would reduce crisis entry to hemodialysis. These strategies alongside improving the cultural competence of staff would reduce patients' fear of mainstream services, decrease the current emotional and family costs of care, and increase efficiency of health expenditure on a challenging and increasingly unsustainable treatment system.
doi:10.1111/hdi.12201
PMCID: PMC4309474  PMID: 25056441
Cultural competence; cultural awareness training; early screening; home hemodialysis
25.  Disparities experienced by Aboriginal compared to non-Aboriginal metropolitan Western Australians in receiving coronary angiography following acute ischaemic heart disease: the impact of age and comorbidities 
Introduction
Aboriginal Australians have a substantially higher frequency of ischaemic heart disease (IHD) events than their non-Aboriginal counterparts, together with a higher prevalence of comorbidities. The pattern of health service provision for IHD suggests inequitable delivery of important diagnostic procedures. Published data on disparities in IHD management among Aboriginal Australians are conflicting, and the role of comorbidities has not been adequately delineated. We compared the profiles of Aboriginal and non-Aboriginal patients in the metropolitan area undergoing emergency IHD admissions at Western Australian metropolitan hospitals, and investigated the determinants of receiving coronary angiography.
Methods
Person-linked administrative hospital and mortality records were used to identify 28-day survivors of IHD emergency admission events (n =20,816) commencing at metropolitan hospitals in 2005–09. The outcome measure was receipt of angiography. The Aboriginal to non-Aboriginal risk ratio (RR) was estimated from a multivariable Poisson log-linear regression model with allowance for multiple IHD events in individuals. The subgroup of myocardial infarction (MI) events was modelled separately.
Results
Compared with their non-Aboriginal counterparts, Aboriginal IHD patients were younger and more likely to have comorbidities. In the age- and sex-adjusted model, Aboriginal patients were less likely than others to receive angiography (RRIHD 0.77, 95% CI 0.72-0.83; RRMI 0.81, 95% CI 0.75-0.87) but in the full multivariable model this disparity was accounted for by comorbidities as well as IHD category and MI subtype, and private health insurance (RRIHD 0.95, 95% CI 0.89-1.01; RRMI 0.94, 95% CI 0.88-1.01). When stratified by age groups, this disparity was not significant in the 25–54 year age group (RRMI 0.95, 95% CI 0.88-1.02) but was significant in the 55–84 year age group (RRMI 0.88, 95% CI 0.77-0.99).
Conclusions
The disproportionate under-management of older Aboriginal IHD patients is of particular concern. Regardless of age, the disparity between Aboriginal and non-Aboriginal Australians in receiving angiography for acute IHD in a metropolitan setting is mediated substantially by comorbidities. This constellation of health problems is a ‘double-whammy’ for Aboriginal people, predisposing them to IHD and also adversely impacting on their receipt of angiography. Further research should investigate how older age and comorbidities influence clinical decision making in this context.
doi:10.1186/s12939-014-0093-3
PMCID: PMC4207898  PMID: 25331586
Aboriginal; Oceanic ancestry group; Australia; Ischaemic heart disease; Myocardial infarction; Healthcare Disparities; Hospitals; urban; Coronary angiography; Age factors; Comorbidity

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