Murru Minya-informing the development of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research: a protocol for a national mixed-methods study.

INTRODUCTION: Conducting ethical and high-quality health research is crucial for informing public health policy and service delivery to reduce the high and inequitable burden of disease experienced by Aboriginal and Torres Strait Islander people. Ethical guidelines and principles specifically for health research with Aboriginal and Torres Strait Islander people have been developed for use since 1987. However, there has been limited examination of how these are being applied to the conduct of research. METHODS AND ANALYSIS: Murru Minya will be a large-scale national study to examine the implementation of ethical processes in Aboriginal and Torres Strait Islander health research. A mixed-methods design will be used in four baarra (steps). The first three baarra will collect knowledge, experiences and wisdom from three key groups: Aboriginal and Torres Strait Islander communities, research academics, and Human Research Ethics Committees using online surveys, yarning, and semistructured interviews. This knowledge will inform the final baarra of developing a set of practical recommendations to support ethical conduct in Aboriginal and Torres Strait Islander health research into the future. ETHICS AND DISSEMINATION: Ethical approval for this research project has been granted by National, State and Territory Human Research Ethics Committees. This research has been developed in collaboration with Aboriginal and Torres Strait Islander researchers, Aboriginal Community Controlled Health Organisation representatives, Aboriginal community members, the National Health Leadership Forum, and Aboriginal and Torres Strait Islander research team. The knowledge translation plan will be integrated and revised throughout the project as partnerships and engagement with Aboriginal and Torres Strait Islander communities continue. All findings will be shared with peak Aboriginal research bodies and Aboriginal and Torres Strait Islander communities in ways that are meaningful to them.

Enablers and barriers to primary healthcare for Aboriginal and Torres Strait Islander adolescents: study protocol for participatory mixed-methods research that builds on WHO global standards.

INTRODUCTION: One-third of Australia's Aboriginal and Torres Strait Islander population are adolescents. Recent data highlight their health needs are substantial and poorly met by existing services. To design effective models of primary healthcare, we need to understand the enablers and barriers to care for Aboriginal and Torres Strait Islander adolescents, the focus of this study. METHODS AND ANALYSIS: This protocol was codesigned with Apunipima Cape York Health Council that supports the delivery of primary healthcare for 11 communities in Far North Queensland. We framed our study around the WHO global standards for high-quality health services for adolescents, adding an additional standard around culturally safe care. The study is participatory and mixed methods in design and builds on the recommended WHO assessment tools. Formative qualitative research with young people and their communities (exploring concepts in the WHO recommended quantitative surveys) seeks to understand demand-side enablers and barriers to care, as well as preferences for an enhanced response. Supply-side enablers and barriers will be explored through: a retrospective audit of clinic data (to identify current reasons for access and what can be strengthened); an objective assessment of the adolescent friendliness of clinical spaces; anonymous feedback from adolescent clients around quality of care received and what can be improved; and surveys and qualitative interviews with health providers to understand their perspectives and needs to provide enhanced care. This codesigned project has been approved by Apunipima Cape York Health Council and Far North Queensland Human Research Ethics Committee. DISSEMINATION AND IMPLICATIONS: The findings from this project will inform a codesigned accessible and responsive model of primary healthcare for Aboriginal and Torres Strait Islander adolescents.

Study protocol: Our Cultures Count, the Mayi Kuwayu Study, a national longitudinal study of Aboriginal and Torres Strait Islander wellbeing.

INTRODUCTION: Aboriginal and Torres Strait Islander peoples are Australia's first peoples and have been connected to the land for ≥65 000 years. Their enduring cultures and values are considered critical to health and wellbeing, alongside physical, psychological and social factors. We currently lack large-scale data that adequately represent the experiences of Aboriginal and Torres Strait Islander people; the absence of evidence on cultural practice and expression is particularly striking, given its foundational importance to wellbeing. METHOD AND ANALYSIS: Mayi Kuwayu: The National Study of Aboriginal and Torres Strait Islander Wellbeing (Mayi Kuwayu Study) will be a large-scale, national longitudinal study of Aboriginal and Torres Strait Islander adults, with linkage to health-related administrative records. The baseline survey was developed through extensive community consultation, and includes items on: cultural practice and expression, sociodemographic factors, health and wellbeing, health behaviours, experiences and environments, and family support and connection. The baseline survey will be mailed to 200 000 Aboriginal and Torres Strait Islander adults (≥16 years), yielding an estimated 16 000-40 000 participants, supplemented through face-to-face recruitment. Follow-up surveys will be conducted every 3-5 years, or as funding allows. The Mayi Kuwayu Study will contribute to filling key evidence gaps, including quantifying the contribution of cultural factors to wellbeing, alongside standard elements of health and risk. ETHICS AND DISSEMINATION: This study has received approval from national Human Research Ethics Committees, and from State and Territory committees, including relevant Aboriginal and Torres Strait Islander organisations. The study was developed and is conducted in partnership with Aboriginal and Torres Strait Islander organisations across states and territories. It will provide an enduring and shared infrastructure to underpin programme and policy development, based on measures and values important to Aboriginal and Torres Strait Islander peoples. Approved researchers can access confidentialised data and disseminate findings according to study data access and governance protocols.

Economic evaluation of Indigenous health worker management of poorly controlled type 2 diabetes in north Queensland.

OBJECTIVE: To conduct an economic evaluation of intensive management by Indigenous health workers (IHWs) of Indigenous adults with poorly controlled type 2 diabetes in rural and remote north Queensland. DESIGN: Cost-consequence analysis alongside a cluster randomised controlled trial of an intervention delivered between 1 March 2012 and 5 September 2013. SETTING: Twelve primary health care services in rural and remote north Queensland communities with predominantly Indigenous populations. PARTICIPANTS: Indigenous adults with poorly controlled type 2 diabetes (HbA1c ≥ 69 mmol/mol) and at least one comorbidity (87 people in six IHW-supported communities (IHW-S); 106 in six usual care (UC) communities). MAIN OUTCOME MEASURES: Per person cost of the intervention; differential changes in mean HbA1c levels, percentage with extremely poor HbA1c level control, quality of life, disease progression, and number of hospitalisations. RESULTS: The mean cost of the 18-month intervention trial was $10 060 per person ($6706 per year). The intervention was associated with a non-significantly greater reduction in mean HbA1c levels in the IHW-S group (-10.1 mmol/mol v -5.4 mmol/mol in the UC group; P = 0.17), a significant reduction in the proportion with extremely poor diabetes control (HbA1c ≥ 102 mmol/mol; P = 0.002), and a sub-significant differential reduction in hospitalisation rates for type 2 diabetes as primary diagnosis (-0.09 admissions/person/year; P = 0.06), with a net reduction in mean annual hospital costs of $646/person (P = 0.07). Quality of life utility scores declined in both groups (between-group difference, P = 0.62). Rates of disease progression were high in both groups (between-group difference, P = 0.73). CONCLUSION: Relative to the high cost of the intervention, the IHW-S model as implemented is probably a poor investment. Incremental cost-effectiveness might be improved by a higher caseload per IHW, a longer evaluation time frame, and improved service integration. Further approaches to improving chronic disease outcomes in this very unwell population need to be explored, including holistic approaches that address the complex psychosocial, pathophysiological and environmental problems of highly disadvantaged populations. TRIAL REGISTRATION: ANZCTR12610000812099.

Psycho-social resilience, vulnerability and suicide prevention: impact evaluation of a mentoring approach to modify suicide risk for remote Indigenous Australian students at boarding school.

BACKGROUND: The proposed study was developed in response to increased suicide risk identified in Aboriginal and Torres Strait Islander students who are compelled to attend boarding schools across Queensland when there is no secondary schooling provision in their remote home communities. It will investigate the impact of a multicomponent mentoring intervention to increase levels of psychosocial resilience. We aim to test the null hypothesis that students' resilience is not positively influenced by the intervention. The 5-year project was funded by the Australian National Health and Medical Research Council from December 2014. METHODS/DESIGN: An integrated mixed methods approach will be adopted; each component iteratively informing the other. Using an interrupted time series design, the primary research methods are quantitative: 1) assessment of change in students' resilience, educational outcomes and suicide risk; and 2) calculation of costs of the intervention. Secondary methods are qualitative: 3) a grounded theoretical model of the process of enhancing students' psychosocial resilience to protect against suicide. Additionally, there is a tertiary focus on capacity development: more experienced researchers in the team will provide research mentorship to less experienced researchers through regular meetings; while Indigenous team members provide cultural mentorship in research practices to non-Indigenous members. DISCUSSION: Australia's suicide prevention policy is progressive but a strong service delivery model is lacking, particularly for Indigenous peoples. The proposed research will potentially improve students' levels of resilience to mitigate against suicide risk. Additionally, it could reduce the economic and social costs of Indigenous youth suicide by obtaining agreement on what is good suicide prevention practice for remote Indigenous students who transition to boarding schools for education, and identifying the benefits-costs of an evidence-based multi-component mentoring intervention to improve resilience.

Aboriginal community controlled health services: leading the way in primary care.

The national Closing the Gap framework commits to reducing persisting disadvantage in the health of Aboriginal and Torres Strait Islander people in Australia, with cross-government-sector initiatives and investment. Central to efforts to build healthier communities is the Aboriginal community controlled health service (ACCHS) sector; its focus on prevention, early intervention and comprehensive care has reduced barriers to access and unintentional racism, progressively improving individual health outcomes for Aboriginal people. There is now a broad range of primary health care data that provides a sound evidence base for comparing the health outcomes for Indigenous people in ACCHSs with the outcomes achieved through mainstream services, and these data show: models of comprehensive primary health care consistent with the patient-centred medical home model; coverage of the Aboriginal population higher than 60% outside major metropolitan centres; consistently improving performance in key performance on best-practice care indicators; and superior performance to mainstream general practice. ACCHSs play a significant role in training the medical workforce and employing Aboriginal people. ACCHSs have risen to the challenge of delivering best-practice care and there is a case for expanding ACCHSs into new areas. To achieve the best returns, the current mainstream Closing the Gap investment should be shifted to the community controlled health sector.

Evaluation of the pilot phase of an Aboriginal and Torres Strait Islander Male Health Module.

This article evaluates the pilot phase of an Aboriginal and Torres Strait Islander Male Health Module. Although men experience higher levels of illness and die younger than women, educational programs to support health workers utilise a gender-based approach to increase participation of Aboriginal and Torres Strait Islander males in health care are rare and lack appropriate content. Recognising this gap in service provision, and under the guidance of a Reference Group comprising community leaders in Aboriginal and Torres Strait male health, a comprehensive and culturally appropriate Male Health Module has been developed to enhance the capacity of health workers to improve access to services for Aboriginal and Torres Strait Islander males. Methods used were: in-depth interviews with Module developers, pilot workshops for trainers and health workers, questionnaires and focus group discussions with workshop participants, and participant observations. As well as enhancing capacity to facilitate access to health services for men, the Module was deemed relevant because of its potential to promote health worker empowerment and wellbeing. Findings revealed that improving access to services for men required male and female health workers working in partnership. Despite overall enthusiasm for the Module, the findings also revealed deep fear that it would end up 'collecting dust on shelves'. Strategies to improve the Module quality and accessibility are highlighted.

Indigenous men's support groups and social and emotional wellbeing: a meta-synthesis of the evidence.

Indigenous men's support groups are designed to empower men to take greater control and responsibility for their health and wellbeing. They provide health education sessions, counselling, men's health clinics, diversionary programs for men facing criminal charges, cultural activities, drug- and alcohol-free social events, and advocacy for resources. Despite there being approximately 100 such groups across Australia, there is a dearth of literature on their strategies and outcomes. This paper is based on participatory action research involving two north Queensland groups which were the subject of a series of five 'phased' evaluative reports between 2002 and 2007. By applying 'meta-ethnography' to the five studies, we identified four themes which provide new interpretations of the data. Self-reported benefits included improved social and emotional wellbeing, modest lifestyle modifications and willingness to change current notions of 'gendered' roles within the home, such as sharing housework. Our qualitative research to date suggests that through promoting empowerment, wellbeing and social cohesion for men and their families, men's support groups may be saving costs through reduced expenditure on health care, welfare, and criminal justice costs, and higher earnings. Future research needs to demonstrate this empirically.

Could the Baby Bonus be a bonus for babies?

Closing the gap in life expectancy between Indigenous and non-Indigenous Australians needs to start in the womb. Rates of perinatal mortality, preterm birth and low birthweight are two to three times greater among the babies of Indigenous women than among those of non-Indigenous women; low birthweight predisposes infants to greater risks of chronic illness in later life. Indigenous women in Australia tend to present for antenatal care later in pregnancy than do non-Indigenous women. There are many barriers for Indigenous women seeking to access antenatal care - geographical, social, cultural, financial and in some cases a lack of service provision. Many of these problems are being addressed within the public health system and by Indigenous community-controlled health services. However, more needs to be done. While antenatal care cannot solve all medical and social problems, commencing such care as early as possible in pregnancy has the potential to improve maternal health and hence pregnancy outcomes. Changes in the way the government Baby Bonus is paid to new mothers could act as an incentive not only to service providers but also to women themselves to initiate antenatal care in the first trimester of pregnancy. Such a system has been well established for many years in France. Any changes to the Baby Bonus scheme should provide incentives and not be punitive in nature.

Empowerment-based research methods: a 10-year approach to enhancing Indigenous social and emotional wellbeing.

OBJECTIVES: This paper describes a research program that has operationalized the links between empowerment at personal/family, group/organizational and community/structural levels and successful mechanisms to address Indigenous social and emotional wellbeing issues such as family violence and abuse, suicide prevention and incarceration. METHODS: A two-pronged approach, involving the Family Wellbeing Empowerment Program and Participatory Action Research, was used to enhance the capacity of program participants and their communities to take greater charge of issues affecting their health and wellbeing. RESULTS: Key program outcomes include an enhancement of participants' sense of self worth, resilience, problem-solving ability, ability to address immediate family difficulties as well as belief in the mutability of the social environment. There is also evidence of increasing capacity to address wider structural issues such as poor school attendance rates, the critical housing shortage, endemic family violence, alcohol and drug misuse, chronic disease, and over-representation of Indigenous men in the criminal justice system. Participants are also breaking new ground in areas such as values-based Indigenous workforce development and organizational change, as well as issues about contemporary Indigenous spirituality. CONCLUSIONS: The use of a long-term (10-year) community research strategy focussing directly on empowerment has demonstrated the power of this approach to facilitate Indigenous people's capacity to regain social and emotional wellbeing and begin to rebuild the social norms of their families and community.

Rising to the health challenge for Aboriginal and Torres Strait Islander peoples: what will it take?

A united stand from medical professionals and organisations will send a powerful message.