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1.  Measuring emotional and social wellbeing in Aboriginal and Torres Strait Islander populations: an analysis of a Negative Life Events Scale 
Aboriginal and Torres Strait Islander Australians experience widespread socioeconomic disadvantage and health inequality. In an attempt to make Indigenous health research more culturally-appropriate, Aboriginal and Torres Strait Islander Australians have called for more attention to the concept of emotional and social wellbeing (ESWB). Although it has been widely recognised that ESWB is of crucial importance to the health of Aboriginal and Torres Strait Islander peoples, there is little consensus on how to measure in Indigenous populations, hampering efforts to better understand and improve the psychosocial determinants of health. This paper explores the policy and political context to this situation, and suggests ways to move forward. The second part of the paper explores how scales can be evaluated in a health research setting, including assessments of endorsement, discrimination, internal and external reliability.
We then evaluate the use of a measure of stressful life events, the Negative Life Events Scale (NLES), in two samples of Aboriginal people living in remote communities in the Northern Territory of Australia. We argue that the Negative Life Events Scale is a promising assessment of psychosocial wellbeing in Aboriginal and Torres Strait Islander populations. Evaluation of the scale and its performance in other samples of Aboriginal and Torres Strait Islander populations is imperative if we hope to develop better, rather than more, scales for measuring ESWB among Indigenous Australians. Only then will it be possible to establish standardized methods of measuring ESWB and develop a body of comparable literature that can guide both a better understanding of ESWB, and evaluation of interventions designed to improve the psychosocial health of Indigenous populations and decrease health inequalities.
doi:10.1186/1475-9276-6-18
PMCID: PMC2203968  PMID: 18001479
2.  Beyond policy and planning to practice: getting sexual health on the agenda in Aboriginal communities in Western Australia 
Background
Indigenous Australians have significantly poorer status on a large range of health, educational and socioeconomic measures and successive Australian governments at state and federal level have committed to redressing these disparities. Despite this, improvements in Aboriginal health status have been modest, and Australia has much greater disparities in the health of its Indigenous people compared to countries that share a history characterised by colonisation and the dispossession of indigenous populations such as New Zealand, Canada and the United States of America. Efforts at policy and planning must ultimately be translated into practical strategies. This article outlines an approach that was effective in Western Australia in increasing the engagement and concern of Aboriginal people about high rates of sexually transmissible infections and sexual health issues. Many aspects of the approach are relevant for other health issues.
Results
The complexity of Indigenous sexual health necessitates inter-agency and cross-governmental collaboration, in addition to Aboriginal leadership, accurate data, and community support. A recent approach covering all these areas is described. This has resulted in Aboriginal sexual health being more actively discussed within Aboriginal health settings than it once was and additional resources for Indigenous sexual health being available, with better communication and partnership across different health service providers and sectors. The valuable lessons in capacity building, collaboration and community engagement are readily transferable to other health issues, and may be useful for other health professionals working in the challenging area of Aboriginal health.
Conclusion
Health service planners and providers grapple with achieving Aboriginal ownership and leadership regarding their particular health issue, despite sincere concern and commitment to addressing Aboriginal health issues. This highlights the need to secure genuine Aboriginal engagement. Building capacity that enables Indigenous people and communities to fulfill their own goals is a long-term strategy and requires sustained commitment, but we argue is a prerequisite for better Indigenous health outcomes.
doi:10.1186/1743-8462-5-3
PMCID: PMC2430582  PMID: 18485244
3.  The transfer and implementation of an Aboriginal Australian wellbeing program: a grounded theory study 
Background
The concepts and standard practices of implementation, largely originating in developed countries, cannot necessarily be simply transferred into diverse cultural contexts. There has been relative inattention in the implementation science literature paid to the implementation of interventions targeting minority Indigenous populations within developed countries. This suggests that the implementation literature may be bypassing population groups within developed countries who suffer some of the greatest disadvantage. Within the context of Aboriginal Australian health improvement, this study considers the impact of political and cultural issues by examining the transfer and implementation of the Family Wellbeing program across 56 places over a 20-year period.
Methods
A theoretical model of program transfer was developed using constructivist-grounded theory methods. Data were generated by conducting in-depth interviews with 18 Aboriginal and non-Aboriginal research respondents who had been active in transferring the program. Data were categorised into higher order abstract concepts and the core impetus for and process of program transfer were identified.
Results
Organizations transferred the program by using it as a vehicle for supporting inside-out empowerment. The impetus to support inside-out empowerment referred to support for Aboriginal people's participation, responsibility for and control of their own affairs, and the associated ripple effects to family members, organizations, communities, and ultimately reconciliation with Australian society at large. Program transfer occurred through a multi-levelled process of embracing relatedness which included relatedness with self, others, and structural conditions; all three were necessary at both individual and organizational levels.
Conclusions
Similar to international implementation models, the model of supporting inside-out empowerment by embracing relatedness involved individuals, organizations, and interpersonal and inter-organizational networks. However, the model suggests that for minority Indigenous populations within developed countries, implementation approaches may require greater attention to the empowering nature of the intervention and its implementation, and multiple levels of relatedness by individuals and organizations with self, others, and the structural conditions. Key elements of the theoretical model provide a useful blueprint to inform the transfer of other empowerment programs to minority Indigenous and other disadvantaged populations on a case-by-case basis.
doi:10.1186/1748-5908-8-129
PMCID: PMC3817066  PMID: 24171867
Indigenous; Aboriginal; Program; Transfer; Spread; Implementation; Grounded theory
4.  Building better systems of care for Aboriginal and Torres Strait Islander people: findings from the Kanyini health systems assessment 
Background
Australian federal and jurisdictional governments are implementing ambitious policy initiatives intended to improve health care access and outcomes for Aboriginal and Torres Strait Islander people. In this qualitative study we explored Aboriginal Medical Service (AMS) staff views on factors needed to improve chronic care systems and assessed their relevance to the new policy environment.
Methods
Two theories informed the study: (1) ‘candidacy’, which explores “the ways in which people’s eligibility for care is jointly negotiated between individuals and health services”; and (2) kanyini or ‘holding’, a Central Australian philosophy which describes the principle and obligations of nurturing and protecting others. A structured health systems assessment, locally adapted from Chronic Care Model domains, was administered via group interviews with 37 health staff in six AMSs and one government Indigenous-led health service. Data were thematically analysed.
Results
Staff emphasised AMS health care was different to private general practices. Consistent with kanyini, community governance and leadership, community representation among staff, and commitment to community development were important organisational features to retain and nurture both staff and patients. This was undermined, however, by constant fear of government funding for AMSs being withheld. Staff resourcing, information systems and high-level leadership were perceived to be key drivers of health care quality. On-site specialist services, managed by AMS staff, were considered an enabling strategy to increase specialist access. Candidacy theory suggests the above factors influence whether a service is ‘tractable’ and ‘navigable’ to its users. Staff also described entrenched patient discrimination in hospitals and the need to expend considerable effort to reinstate care. This suggests that Aboriginal and Torres Strait Islander people are still constructed as ‘non-ideal users’ and are denied from being ‘held’ by hospital staff.
Conclusions
Some new policy initiatives (workforce capacity strengthening, improving chronic care delivery systems and increasing specialist access) have potential to address barriers highlighted in this study. Few of these initiatives, however, capitalise on the unique mechanisms by which AMSs ‘hold’ their users and enhance their candidacy to health care. Kanyini and candidacy are promising and complementary theories for conceptualising health care access and provide a potential framework for improving systems of care.
doi:10.1186/1472-6963-12-369
PMCID: PMC3529689  PMID: 23102409
5.  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
6.  Early identification and preventive care for elevated cardiovascular disease risk within a remote Australian Aboriginal primary health care service 
Background
Cardiovascular disease (CVD) is the single greatest contributor to the gap in life expectancy between Indigenous and non-Indigenous Australians. Our objective is to determine if holistic CVD risk assessment, introduced as part of the new Aboriginal and Torres Strait Islander Adult Health Check (AHC), results in better identification of elevated CVD risk, improved delivery of preventive care for CVD and improvements in the CVD risk profile for Aboriginal adults in a remote community.
Methods
Interrupted time series study over six years in a remote primary health care (PHC) service involving Aboriginal adults identified with elevated CVD risk (N = 64). Several process and outcome measures were audited at 6 monthly intervals for three years prior to the AHC (the intervention) and three years following: (i) the proportion of guideline scheduled CVD preventive care services delivered, (ii) mean CVD medications prescribed and dispensed, (iii) mean PHC consultations, (iv) changes in participants' CVD risk factors and estimated absolute CVD risk and (v) mean number of CVD events and iatrogenic events.
Results
Twenty-five percent of AHC participants were identified as having elevated CVD risk. Of these, 84% had not been previously identified during routine care. Following the intervention, there were significant improvements in the recorded delivery of preventive care services for CVD (30% to 53%), and prescription of CVD related medications (28% to 89%) (P < 0.001). Amongst participants there was a 20% relative reduction in estimated absolute CVD risk (P = 0.004) following the intervention. However, there were no significant changes in the mean number of PHC consultations or mean number of CVD events or iatrogenic events.
Conclusions
Holistic CVD risk assessment during an AHC can lead to better and earlier identification of elevated CVD risk, improvement in the recorded delivery of preventive care services for CVD, intensification of treatment for CVD, and improvements in participants' CVD risk profile. Further research is required on strategies to reorient and restructure PHC services to the care of chronic illness for Aboriginal peoples in remote areas for there to be substantial progress in decreasing excess CVD related mortality.
doi:10.1186/1472-6963-11-24
PMCID: PMC3045287  PMID: 21281520
7.  A systems-based partnership learning model for strengthening primary healthcare 
Background
Strengthening primary healthcare systems is vital to improving health outcomes and reducing inequity. However, there are few tools and models available in published literature showing how primary care system strengthening can be achieved on a large scale. Challenges to strengthening primary healthcare (PHC) systems include the dispersion, diversity and relative independence of primary care providers; the scope and complexity of PHC; limited infrastructure available to support population health approaches; and the generally poor and fragmented state of PHC information systems.
Drawing on concepts of comprehensive PHC, integrated quality improvement (IQI) methods, system-based research networks, and system-based participatory action research, we describe a learning model for strengthening PHC that addresses these challenges. We describe the evolution of this model within the Australian Aboriginal and Torres Strait Islander primary healthcare context, successes and challenges in its application, and key issues for further research.
Discussion
IQI approaches combined with system-based participatory action research and system-based research networks offer potential to support program implementation and ongoing learning across a wide scope of primary healthcare practice and on a large scale. The Partnership Learning Model (PLM) can be seen as an integrated model for large-scale knowledge translation across the scope of priority aspects of PHC. With appropriate engagement of relevant stakeholders, the model may be applicable to a wide range of settings. In IQI, and in the PLM specifically, there is a clear role for research in contributing to refining and evaluating existing tools and processes, and in developing and trialling innovations. Achieving an appropriate balance between funding IQI activity as part of routine service delivery and funding IQI related research will be vital to developing and sustaining this type of PLM.
Summary
This paper draws together several different previously described concepts and extends the understanding of how PHC systems can be strengthened through systematic and partnership-based approaches. We describe a model developed from these concepts and its application in the Australian Indigenous primary healthcare context, and raise questions about sustainability and wider relevance of the model.
doi:10.1186/1748-5908-8-143
PMCID: PMC3878728  PMID: 24344640
Health systems strengthening; Quality improvement; Comprehensive primary healthcare; Participatory; Partnership; Learning; Information
8.  Tailoring a response to youth binge drinking in an Aboriginal Australian community: a grounded theory study 
BMC Public Health  2013;13:726.
Background
While Aboriginal Australian health providers prioritise identification of local community health needs and strategies, they do not always have the opportunity to access or interpret evidence-based literature to inform health improvement innovations. Research partnerships are therefore important when designing or modifying Aboriginal Australian health improvement initiatives and their evaluation. However, there are few models that outline the pragmatic steps by which research partners negotiate to develop, implement and evaluate community-based initiatives. The objective of this paper is to provide a theoretical model of the tailoring of health improvement initiatives by Aboriginal community-based service providers and partner university researchers. It draws from the case of the Beat da Binge community-initiated youth binge drinking harm reduction project in Yarrabah.
Methods
A theoretical model was developed using the constructivist grounded theory methods of concurrent sampling, data collection and analysis. Data was obtained from the recordings of reflective Community-Based Participatory Research (CBPR) processes with Aboriginal community partners and young people, and university researchers. CBPR data was supplemented with interviews with theoretically sampled project participants. The transcripts of CBPR recordings and interviews were imported into NVIVO and coded to identify categories and theoretical constructs. The identified categories were then developed into higher order concepts and the relationships between concepts identified until the central purpose of those involved in the project and the core process that facilitated that purpose were identified.
Results
The tailored alcohol harm reduction project resulted in clarification of the underlying local determinants of binge drinking, and a shift in the project design from a social marketing awareness campaign (based on short-term events) to a more robust advocacy for youth mentoring into education, employment and training. The community-based process undertaken by the research partnership to tailor the design, implementation and evaluation of the project was theorised as a model incorporating four overlapping stages of negotiating knowledges and meanings to tailor a community response.
Conclusions
The theoretical model can be applied in spaces where local Aboriginal and scientific knowledges meet to support the tailored design, implementation and evaluation of other health improvement projects, particularly those that originate from Aboriginal communities themselves.
doi:10.1186/1471-2458-13-726
PMCID: PMC3750544  PMID: 23919727
Indigenous population; Binge drinking; Adolescent; Community-based participatory research; Research design
9.  A Review of Programs That Targeted Environmental Determinants of Aboriginal and Torres Strait Islander Health 
Objective: Effective interventions to improve population and individual health require environmental change as well as strategies that target individual behaviours and clinical factors. This is the basis of implementing an ecological approach to health programs and health promotion. For Aboriginal People and Torres Strait Islanders, colonisation has made the physical and social environment particularly detrimental for health. Methods and Results: We conducted a literature review to identify Aboriginal health interventions that targeted environmental determinants of health, identifying 21 different health programs. Program activities that targeted environmental determinants of health included: Caring for Country; changes to food supply and/or policy; infrastructure for physical activity; housing construction and maintenance; anti-smoking policies; increased workforce capacity; continuous quality improvement of clinical systems; petrol substitution; and income management. Targets were categorised according to Miller’s Living Systems Theory. Researchers using an Indigenous community based perspective more often identified interpersonal and community-level targets than were identified using a Western academic perspective. Conclusions: Although there are relatively few papers describing interventions that target environmental determinants of health, many of these addressed such determinants at multiple levels, consistent to some degree with an ecological approach. Interpretation of program targets sometimes differed between academic and community-based perspectives, and was limited by the type of data reported in the journal articles, highlighting the need for local Indigenous knowledge for accurate program evaluation. Implications: While an ecological approach to Indigenous health is increasingly evident in the health research literature, the design and evaluation of such programs requires a wide breadth of expertise, including local Indigenous knowledge.
doi:10.3390/ijerph10083518
PMCID: PMC3774452  PMID: 23939388
indigenous health; environmental determinants; evaluation
10.  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
11.  Developing a good practice model to evaluate the effectiveness of comprehensive primary health care in local communities 
BMC Family Practice  2014;15:99.
Background
This paper describes the development of a model of Comprehensive Primary Health Care (CPHC) applicable to the Australian context. CPHC holds promise as an effective model of health system organization able to improve population health and increase health equity. However, there is little literature that describes and evaluates CPHC as a whole, with most evaluation focusing on specific programs. The lack of a consensus on what constitutes CPHC, and the complex and context-sensitive nature of CPHC are all barriers to evaluation.
Methods
The research was undertaken in partnership with six Australian primary health care services: four state government funded and managed services, one sexual health non-government organization, and one Aboriginal community controlled health service. A draft model was crafted combining program logic and theory-based approaches, drawing on relevant literature, 68 interviews with primary health care service staff, and researcher experience. The model was then refined through an iterative process involving two to three workshops at each of the six participating primary health care services, engaging health service staff, regional health executives and central health department staff.
Results
The resultant Southgate Model of CPHC in Australia model articulates the theory of change of how and why CPHC service components and activities, based on the theory, evidence and values which underpin a CPHC approach, are likely to lead to individual and population health outcomes and increased health equity. The model captures the importance of context, the mechanisms of CPHC, and the space for action services have to work within. The process of development engendered and supported collaborative relationships between researchers and stakeholders and the product provided a description of CPHC as a whole and a framework for evaluation. The model was endorsed at a research symposium involving investigators, service staff, and key stakeholders.
Conclusions
The development of a theory-based program logic model provided a framework for evaluation that allows the tracking of progress towards desired outcomes and exploration of the particular aspects of context and mechanisms that produce outcomes. This is important because there are no existing models which enable the evaluation of CPHC services in their entirety.
doi:10.1186/1471-2296-15-99
PMCID: PMC4038362  PMID: 24885812
12.  A qualitative study of staff perspectives of patient non-attendance in a regional primary healthcare setting 
The Australasian Medical Journal  2014;7(5):218-226.
Background
Non-attendance at health appointments reduces health service efficiency, is costly to services, and can risk patient health. Reminder systems are widely used to overcome forgetfulness, the most common reason for non-attendance; however, other factors, such as patient demographics and service accessibility, may also affect attendance rates.
Aims
There is limited primary research on the reasons for patient non-attendance in the Australian healthcare setting, although the success of preventative health initiatives requires ongoing monitoring of patients. This study aims to improve our understanding of the Australian experience by examining staff perspectives.
Method
This qualitative study explored staff perspectives of the reasons for non-attendance in a large, regional general practice super clinic, which has a low socioeconomic catchment, and serves a large Aboriginal population.
Results
The practical barriers to attendance of travel, cost, and waiting times had largely been overcome with transport provision, free medical care and responsive appointment times, but paradoxically, these were seen to devalue allocated appointments and reinforce the expectations of “on-demand” health care. For Aboriginal patients specifically, a distrust of authority, combined with poor health literacy was perceived to impact negatively on the uptake of diagnostic tests, filling of prescriptions, health monitoring, and adherence to medication.
Conclusion
The results suggest a complex interplay between poor health literacy and low patient self-worth; a funding system that encourages “five-minute medicine and prevents doctors getting to the root cause of patient problems or having the ability to provide health education.
doi:10.4066/AMJ.2014.2056
PMCID: PMC4051357  PMID: 24944719
Non-attendance; super clinic; Aboriginal; adherence; reminders
13.  Mental health first aid for Indigenous Australians: using Delphi consensus studies to develop guidelines for culturally appropriate responses to mental health problems 
BMC Psychiatry  2009;9:47.
Background
Ethnic minority groups are under-represented in mental health care services because of barriers such as poor mental health literacy. In 2007, the Mental Health First Aid (MHFA) program implemented a cultural adaptation of its first aid course to improve the capacity of Indigenous Australians to recognise and respond to mental health issues within their own communities. It became apparent that the content of this training would be improved by the development of best practice guidelines. This research aimed to develop culturally appropriate guidelines for providing first aid to an Australian Aboriginal or Torres Strait Islander person who is experiencing a mental health crisis or developing a mental illness.
Methods
A panel of Australian Aboriginal people who are experts in Aboriginal mental health, participated in six independent Delphi studies investigating depression, psychosis, suicidal thoughts and behaviours, deliberate self-injury, trauma and loss, and cultural considerations. The panel varied in size across the studies, from 20-24 participants. Panellists were presented with statements about possible first aid actions via online questionnaires and were encouraged to suggest additional actions not covered by the survey content. Statements were accepted for inclusion in a guideline if they were endorsed by ≥ 90% of panellists as essential or important. Each study developed one guideline from the outcomes of three Delphi questionnaire rounds. At the end of the six Delphi studies, participants were asked to give feedback on the value of the project and their participation experience.
Results
From a total of 1,016 statements shown to the panel of experts, 536 statements were endorsed (94 for depression, 151 for psychosis, 52 for suicidal thoughts and behaviours, 53 for deliberate self-injury, 155 for trauma and loss, and 31 for cultural considerations). The methodology and the guidelines themselves were found to be useful and appropriate by the panellists.
Conclusion
Aboriginal mental health experts were able to reach consensus about culturally appropriate first aid for mental illness. The Delphi consensus method could be useful more generally for consulting Indigenous peoples about culturally appropriate best practice in mental health services.
doi:10.1186/1471-244X-9-47
PMCID: PMC2729076  PMID: 19646284
14.  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
15.  Under-ascertainment of Aboriginality in records of cardiovascular disease in hospital morbidity and mortality data in Western Australia: a record linkage study 
Background
Measuring the real burden of cardiovascular disease in Australian Aboriginals is complicated by under-identification of Aboriginality in administrative health data collections. Accurate data is essential to measure Australia's progress in its efforts to intervene to improve health outcomes of Australian Aboriginals. We estimated the under-ascertainment of Aboriginal status in linked morbidity and mortality databases in patients hospitalised with cardiovascular disease.
Methods
Persons with public hospital admissions for cardiovascular disease in Western Australia during 2000-2005 (and their 20-year admission history) or who subsequently died were identified from linkage data. The Aboriginal status flag in all records for a given individual was variously used to determine their ethnicity (index positive, and in all records both majority positive or ever positive) and stratified by region, age and gender. The index admission was the baseline comparator.
Results
Index cases comprised 62,692 individuals who shared a total of 778,714 hospital admissions over 20 years, of which 19,809 subsequently died. There were 3,060 (4.9%) persons identified as Aboriginal on index admission. An additional 83 (2.7%) Aboriginal cases were identified through death records, increasing to 3.7% when cases with a positive Aboriginal identifier in the majority (≥50%) of previous hospital admissions over twenty years were added and by 20.8% when those with a positive flag in any record over 20 years were incorporated. These results equated to underestimating Aboriginal status in unlinked index admission by 2.6%, 3.5% and 17.2%, respectively. Deaths classified as Aboriginal in official records would underestimate total Aboriginal deaths by 26.8% (95% Confidence Interval 24.1 to 29.6%).
Conclusions
Combining Aboriginal determinations in morbidity and official death records increases ascertainment of unlinked cardiovascular morbidity in Western Australian Aboriginals. Under-identification of Aboriginal status is high in death records.
doi:10.1186/1471-2288-10-111
PMCID: PMC3024993  PMID: 21192809
16.  Improving the accuracy of Aboriginal and non-Aboriginal disease notification rates using data linkage 
Background
Routinely collected infectious disease surveillance data provide a valuable means to monitor the health of populations. Notifiable disease surveillance systems in Australia have consistently reported high levels of completeness for the demographic data fields of age and sex, but low levels of completeness for Aboriginality data. Significant amounts of missing data associated with case notifications can introduce bias in the estimation of disease rates by population subgroups. The aim of this analysis was to evaluate the use of data linkage to improve the accuracy of estimated notification rates for sexually transmitted infections (STIs) and blood borne viruses (BBVs) in Aboriginal and non-Aboriginal groups in Western Australia.
Methods
Probabilistic methods were used to link disease notification data received in Western Australia in 2004 with core population health datasets from the established Western Australian Data Linkage System. A comparative descriptive analysis of STI and BBV notification rates according to Aboriginality was conducted based on the original and supplemented notification datasets.
Results
Using data linkage, the proportion of STI and BBV notifications with missing Aboriginality data was reduced by 74 per cent. Compared with excluding notifications with unknown Aboriginality data from the analysis, or apportioning notifications with unknown Aboriginality based on the proportion of cases with known Aboriginality, the rate ratios of chlamydia, syphilis and hepatitis C among Aboriginal relative to non-Aboriginal people decreased when Aboriginality data from data linkage was included.
Conclusion
Although there is still a high incidence of STIs and BBVs in Aboriginal people, incompleteness of Aboriginality data contributes to overestimation of the risk associated with Aboriginality for these diseases. Data linkage can be effectively used to improve the accuracy of estimated disease notification rates.
doi:10.1186/1472-6963-8-118
PMCID: PMC2429908  PMID: 18510777
17.  Improving Aboriginal maternal and infant health services in the ‘Top End’ of Australia; synthesis of the findings of a health services research program aimed at engaging stakeholders, developing research capacity and embedding change 
Background
Health services research is a well-articulated research methodology and can be a powerful vehicle to implement sustainable health service reform. This paper presents a summary of a five-year collaborative program between stakeholders and researchers that led to sustainable improvements in the maternity services for remote-dwelling Aboriginal women and their infants in the Top End (TE) of Australia.
Methods
A mixed-methods health services research program of work was designed, using a participatory approach. The study area consisted of two large remote Aboriginal communities in the Top End of Australia and the hospital in the regional centre (RC) that provided birth and tertiary care for these communities. The stakeholders included consumers, midwives, doctors, nurses, Aboriginal Health Workers (AHW), managers, policy makers and support staff. Data were sourced from: hospital and health centre records; perinatal data sets and costing data sets; observations of maternal and infant health service delivery and parenting styles; formal and informal interviews with providers and women and focus groups. Studies examined: indicator sets that identify best care, the impact of quality of care and remoteness on health outcomes, discrepancies in the birth counts in a range of different data sets and ethnographic studies of ‘out of hospital’ or health centre birth and parenting. A new model of maternity care was introduced by the health service aiming to improve care following the findings of our research. Some of these improvements introduced during the five-year research program of research were evaluated.
Results
Cost effective improvements were made to the acceptability, quality and outcomes of maternity care. However, our synthesis identified system-wide problems that still account for poor quality of infant services, specifically, unacceptable standards of infant care and parent support, no apparent relationship between volume and acuity of presentations and staff numbers with the required skills for providing care for infants, and an ‘outpatient’ model of care. Services were also characterised by absent Aboriginal leadership and inadequate coordination between remote and tertiary services that is essential to improve quality of care and reduce ‘system-introduced’ risk.
Conclusion
Evidence-informed redesign of maternity services and delivery of care has improved clinical effectiveness and quality for women. However, more work is needed to address substandard care provided for infants and their parents.
doi:10.1186/1472-6963-14-241
PMCID: PMC4057802  PMID: 24890910
Aboriginal; Australian; Indigenous maternity care; Indigenous infant care; Cultural safety; Indigenous health care workforce; Remote health services
18.  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
19.  Knowledge Transfer and Exchange Processes for Environmental Health Issues in Canadian Aboriginal Communities 
Within Canadian Aboriginal communities, the process for utilizing environmental health research evidence in the development of policies and programs is not well understood. This fundamental qualitative descriptive study explored the perceptions of 28 environmental health researchers, senior external decision-makers and decision-makers working within Aboriginal communities about factors influencing knowledge transfer and exchange, beliefs about research evidence and Traditional Knowledge and the preferred communication channels for disseminating and receiving evidence. The results indicate that collaborative relationships between researchers and decision-makers, initiated early and maintained throughout a research project, promote both the efficient conduct of a study and increase the likelihood of knowledge transfer and exchange. Participants identified that empirical research findings and Traditional Knowledge are different and distinct types of evidence that should be equally valued and used where possible to provide a holistic understanding of environmental issues and support decisions in Aboriginal communities. To facilitate the dissemination of research findings within Aboriginal communities, participants described the elements required for successfully crafting key messages, locating and using credible messengers to deliver the messages, strategies for using cultural brokers and identifying the communication channels commonly used to disseminate and receive this type of information.
doi:10.3390/ijerph7020651
PMCID: PMC2872293  PMID: 20616996
environmental health; research utilization; knowledge transfer; Aboriginal; qualitative
20.  Setting and meeting priorities in Indigenous health research in Australia and its application in the Cooperative Research Centre for Aboriginal Health 
Priority setting is about making decisions. Key issues faced during priority setting processes include identifying who makes these decisions, who sets the criteria, and who benefits. The paper reviews the literature and history around priority setting in research, particularly in Aboriginal health research. We explore these issues through a case study of the Cooperative Research Centre for Aboriginal Health (CRCAH)'s experience in setting and meeting priorities.
Historically, researchers have made decisions about what research gets done. Pressures of growing competition for research funds and an increased public interest in research have led to demands that appropriate consultation with stakeholders is conducted and that research is of benefit to the wider society. Within Australian Aboriginal communities, these demands extend to Aboriginal control of research to ensure that Aboriginal priorities are met.
In response to these demands, research priorities are usually agreed in consultation with stakeholders at an institutional level and researchers are asked to develop relevant proposals at a project level. The CRCAH's experience in funding rounds was that scientific merit was given more weight than stakeholders' priorities and did not necessarily result in research that met these priorities. After reviewing these processes in 2004, the CRCAH identified a new facilitated development approach. In this revised approach, the setting of institutional priorities is integrated with the development of projects in a way that ensures the research reflects stakeholder priorities.
This process puts emphasis on identifying projects that reflect priorities prior to developing the quality of the research, rather than assessing the relevance to priorities and quality concurrently. Part of the CRCAH approach is the employment of Program Managers who ensure that stakeholder priorities are met in the development of research projects. This has enabled researchers and stakeholders to come together to collaboratively develop priority-driven research. Involvement by both groups in project development has been found to be essential in making decisions that will lead to robust and useful research.
doi:10.1186/1478-4505-7-25
PMCID: PMC2788537  PMID: 19925681
21.  Developing an Exploratory Framework Linking Australian Aboriginal Peoples’ Connection to Country and Concepts of Wellbeing 
Aboriginal people across Australia suffer significant health inequalities compared with the non-Indigenous population. Evidence indicates that inroads can be made to reduce these inequalities by better understanding social and cultural determinants of health, applying holistic notions of health and developing less rigid definitions of wellbeing. The following article draws on qualitative research on Victorian Aboriginal peoples’ relationship to their traditional land (known as Country) and its link to wellbeing, in an attempt to tackle this. Concepts of wellbeing, Country and nature have also been reviewed to gain an understanding of this relationship. An exploratory framework has been developed to understand this phenomenon focusing on positive (e.g., ancestry and partnerships) and negative (e.g., destruction of Country and racism) factors contributing to Aboriginal peoples’ health. The outcome is an explanation of how Country is a fundamental component of Aboriginal Victorian peoples’ wellbeing and the framework articulates the forces that impact positively and negatively on this duality. This review is critical to improving not only Aboriginal peoples’ health but also the capacity of all humanity to deal with environmental issues like disconnection from nature and urbanisation.
doi:10.3390/ijerph10020678
PMCID: PMC3635170  PMID: 23435590
wellbeing; Aboriginal; health; Country; nature
22.  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
23.  Enhanced reporting of deaths among Aboriginal and Torres Strait Islander peoples using linked administrative health datasets 
Background
Aboriginal and Torres Strait Islander peoples are under-reported in administrative health datasets in NSW, Australia. Correct reporting of Aboriginal and Torres Strait Islander peoples is essential to measure the effectiveness of policies and programmes aimed at reducing the health disadvantage experienced by Aboriginal and Torres Strait Islander peoples. This study investigates the potential of record linkage to enhance reporting of deaths among Aboriginal and Torres Strait Islander peoples in NSW, Australia.
Methods
Australian Bureau of Statistics death registration data for 2007 were linked with four population health datasets relating to hospitalisations, emergency department attendances and births. Reporting of deaths was enhanced from linked records using two methods, and effects on patterns of demographic characteristics and mortality indicators were examined.
Results
Reporting of deaths increased by 34.5% using an algorithm based on a weight of evidence of a person being Aboriginal or Torres Strait Islander, and by 56.6% using an approach based on 'at least one report' of a person being Aboriginal or Torres Strait Islander. The increase was relatively greater in older persons and those living in less geographically remote areas. Enhancement resulted in a reduction in the urban-remote differential in median age at death and increases in standardised mortality ratios particularly for chronic conditions.
Conclusions
Record linkage creates a statistical construct that helps to correct under-reporting of deaths and potential bias in mortality statistics for Aboriginal and Torres Strait Islander peoples.
doi:10.1186/1471-2288-12-91
PMCID: PMC3413579  PMID: 22747900
24.  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
25.  “I know it’s bad for me and yet I do it”: exploring the factors that perpetuate smoking in Aboriginal Health Workers - a qualitative study 
Background
Aboriginal Health Workers (AHWs) have a mandate to deliver smoking cessation support to Aboriginal people. However, a high proportion of AHWs are smokers and this undermines their delivery of smoking cessation programs. Smoking tobacco is the leading contributor to the burden of disease in Aboriginal Australians and must be prevented. Little is known about how to enable AHWs to quit smoking. An understanding of the factors that perpetuate smoking in AHWs is needed to inform the development of culturally relevant programs that enable AHWs to quit smoking. A reduction of smoking in AHWs is important to promote their health and also optimise the delivery of smoking cessation support to Aboriginal clients.
Methods
We conducted a fundamental qualitative description study that was nested within a larger mixed method participatory research project. The individual and contextual factors that directly or indirectly promote (i.e. perpetuate) smoking behaviours in AHWs were explored in 34 interviews and 3 focus groups. AHWs, other health service staff and tobacco control personnel shared their perspectives. Data analysis was performed using a qualitative content analysis approach with collective member checking by AHW representatives.
Results
AHWs were highly stressed, burdened by their responsibilities, felt powerless and undervalued, and used smoking to cope with and support a sense of social connectedness in their lives. Factors directly and indirectly associated with smoking were reported at six levels of behavioural influence: personal factors (e.g. stress, nicotine addiction), family (e.g. breakdown of family dynamics, grief and loss), interpersonal processes (e.g. socialisation and connection, domestic disputes), the health service (e.g. job insecurity and financial insecurity, demanding work), the community (e.g. racism, social disadvantage) and policy (e.g. short term and insecure funding).
Conclusions
An extensive array of factors perpetuated smoking in AHWs. The multitude of personal, social and environmental stressors faced by AHWs and the accepted use of communal smoking to facilitate socialisation and connection were primary drivers of smoking in AHWs in addition to nicotine dependence. Culturally sensitive multidimensional smoking cessation programs that address these factors and can be tailored to local needs are indicated.
doi:10.1186/1472-6963-12-102
PMCID: PMC3394210  PMID: 22533609

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