Talking it up! Project report : Aboriginal voices in the formulation of health policy that works : short report

Initially, there were three separate strands to the work of the project: a series of forums involving group interviews/discussions with community members; a policy analysis that reviewed policies relating to Aboriginal health at federal and state level; and a literature review. The results of these three separate strands of analysis were then brought together in a fourth strand to the work, a process involving community members to discuss and agree the overall recommendations contained in this report.

Through this structure, the project employed a participatory methodology as the basis for individual and collective empowerment in relation to health outcomes. As mentioned above, the need for the project was identified by Aboriginal people, through their own processes of healing. The need was presented by appropriate figures within their communities, namely community elders. They invited other Aboriginal people to take part through their own communication channels, thus ensuring that responsibility for engagement in the project, and in formulating action for improvement, remained with Aboriginal people and their families. However, the project design also recognised that Aboriginal people exist within broader structural and policy constraints which impact on their ability to manage their own lives successfully or otherwise. Thus the project sought to combine indigenous and non-indigenous knowledge through bringing together the three strands of work in the way described.

A Community Reference Group guided the work of the project at all stages, endorsed the findings and drafted the recommendations. The two elders who had identified the need for the project formed the core of the group, and worked on the project from start to finish. At different times during the project, other community members joined the group to assist in its work, including training Aboriginal researchers, letting others know about the forums, discussing findings and drafting recommendations.

Talking it up! Project report : Aboriginal voices in the formulation of health policy that works : full report

Initially, there were three separate strands to the work of the project: a series of forums involving group interviews/discussions with community members; a policy analysis that reviewed policies relating to Aboriginal health at federal and state level; and a literature review. The results of these three separate strands of analysis were then brought together in a fourth strand to the work, a process involving community members to discuss and agree the overall recommendations contained in this report.

Through this structure, the project employed a participatory methodology as the basis for individual and collective empowerment in relation to health outcomes. As mentioned above, the need for the project was identified by Aboriginal people, through their own processes of healing. The need was presented by appropriate figures within their communities, namely community elders. They invited other Aboriginal people to take part through their own communication channels, thus ensuring that responsibility for engagement in the project, and in formulating action for improvement, remained with Aboriginal people and their families. However, the project design also recognised that Aboriginal people exist within broader structural and policy constraints which impact on their ability to manage their own lives successfully or otherwise. Thus the project sought to combine indigenous and non-indigenous knowledge through bringing together the three strands of work in the way described.

A Community Reference Group guided the work of the project at all stages, endorsed the findings and drafted the recommendations. The two elders who had identified the need for the project formed the core of the group, and worked on the project from start to finish. At different times during the project, other community members joined the group to assist in its work, including training Aboriginal researchers, letting others know about the forums, discussing findings and drafting recommendations.
Initially, there were three separate strands to the work of the project: a series of forums involving group interviews/discussions with community members; a policy analysis that reviewed policies relating to Aboriginal health at federal and state level; and a literature review. The results of these three separate strands of analysis were then brought together in a fourth strand to the work, a process involving community members to discuss and agree the overall recommendations contained in this report.

Through this structure, the project employed a participatory methodology as the basis for individual and collective empowerment in relation to health outcomes. As mentioned above, the need for the project was identified by Aboriginal people, through their own processes of healing. The need was presented by appropriate figures within their communities, namely community elders. They invited other Aboriginal people to take part through their own communication channels, thus ensuring that responsibility for engagement in the project, and in formulating action for improvement, remained with Aboriginal people and their families. However, the project design also recognised that Aboriginal people exist within broader structural and policy constraints which impact on their ability to manage their own lives successfully or otherwise. Thus the project sought to combine indigenous and non-indigenous knowledge through bringing together the three strands of work in the way described.

Folate fortification : a case study of public health policy-making

Introducing Evidence Based Health Policy: Problems and Possibilities, Section 1: What is the Problem?, 1: Competing Rationalities: Evidence based Health Policy, 2: Beyond Two Communities, Section 2: What does Evidence Mean?, 3: Evidence based Medicine - The Medical Profession and Health Policy, 4: Mind The Gap: Assessing the Quality of Evidence for Public Health Problems, 5: Health Policy and Normative Analysis: Ethics, Evidence and Politics, 6: What is New in Health Information? Evidence for Health Consumers and Policy Making, 7: From Evidence based Medicine to Evidence based Public Health, Section 3: Policy Case Studies, 8: The Viagra Affair: Evidence as the Terrain for Competing Partners, 9: Folate Fortification: A Case Study of Public Health Policy-Making in a Food Regulation Setting, 10: The Supply and Safety of Blood and Blood Products - Evidence, Risk and Policy, 11: The Development of Nurse Practitioner Policy, 12: Creating Healthy Public Policy for Oral Health: How was the Evidence Used?, 13: Regulation of Traditional Chinese Medicine in Victoria, 14: The Victorian Primary Health Care Reforms: A Case Study of Evidence-based Policy Making, 15: Evidence-based Practice in the Australian Drug Policy Community, 16: Challenging the Evidence - Women's Health Policy in Australia, 17: Evidence and Aboriginal Health Policy, 18: The Limits to Technical Rationality in the Health Inequalities Policy Process, 19: Evidence-based policy: A Technocratic Wish in a Political World, Section 4: Is the transfer of evidence into policy possible?, 20: The Community Model of Research Transfer, 21: Getting Research Transfer into Policy and Practice in Maternity Care, 22: Improving the Research and Policy Partnership: An Agenda for Research Transfer and Governance, 23: Framing and Taming 'Wicked' Problems

Addressing migration-related social and health inequalities in Australia: call for research funding priorities to recognise the needs of migrant populations

Objective Migrants constitute 26% of the total Australian population and, although disproportionately affected by chronic diseases, they are under-represented in health research. The aim of the present study was to describe trends in Australian Research Council (ARC)- and National Health and Medical Research Council (NHMRC)-funded initiatives from 2002 to 2011 with a key focus on migration-related research funding.Methods Data on all NHMRC- and ARC-funded initiatives between 2002 and 2011 were collected from the research funding statistics and national competitive grants program data systems, respectively. The research funding expenditures within these two schemes were categorised into two major groups: (1) people focused (migrant-related and mainstream-related); and (2) basic science focused. Descriptive statistics were used to summarise the data and report the trends in NHMRC and ARC funding over the 10-year period.Results Over 10 years, the ARC funded 15 354 initiatives worth A$5.5 billion, with 897 (5.8%) people-focused projects funded, worth A$254.4 million. Migrant-related research constituted 7.8% of all people-focused research. The NHMRC funded 12 399 initiatives worth A$5.6 billion, with 447 (3.6%) people-focused projects funded, worth A$207.2 million. Migrant-related research accounted for 6.2% of all people-focused initiatives.Conclusions Although migrant groups are disproportionately affected by social and health inequalities, the findings of the present study show that migrant-related research is inadequately funded compared with mainstream-related research. Unless equitable research funding is achieved, it will be impossible to build a strong evidence base for planning effective measures to reduce these inequalities among migrants.What is known about the topic? Immigration is on the rise in most developing countries, including Australia, and most migrants come from low- and middle-income countries. In Australia, migrants constitute 26% of the total Australian population and include refugee and asylum seeker population groups. Migrants are disproportionately affected by disease, yet they have been found to be under-represented in health research and public health interventions.What does this paper add? This paper highlights the disproportions in research funding for research among migrants. Despite migrants being disproportionately affected by disease burden, research into their health conditions and risk factors is grossly underfunded compared with the mainstream population.What are the implications for practitioners? Migrants represent a significant proportion of the Australian population and hence are capable of incurring high costs to the Australian health system. There are two major implications for practitioners. First, the migrant population is constantly growing, therefore integrating the needs of migrants into the development of health policy is important in ensuring equity across health service delivery and utilisation in Australia. Second, the health needs of migrants will only be uncovered when a clear picture of their true health status and other determinants of health, such as psychological, economic, social and cultural, are identified through empirical research studies. Unless equitable research funding is achieved, it will be impossible to build a strong evidence base for planning effective measures to reduce health and social inequalities among migrant communities.

Meeting art with art : arts-based methods enhance researcher reflexivity in research with mental health service users

This paper presents a rationale for arts-based practices in music therapy research, and provides an example of using ABR techniques in research. Arts-based materials are increasingly demonstrated to have the capacity to extend processes of reflexivity and analysis in a range of qualitative health research studies. By comparison, music therapy research studies have rarely employed arts-based methods or techniques. There is a need for more studies in music therapy that employ arts-based research to demystify and elaborate a wider range of creative approaches within music therapy inquiry. In the study described in this paper, ABR was used to reflect on the contribution of a service user in a community mental health context who participated in a focus group about his experiences of music therapy. ABR was found to offer a creative way to engage service users, and to deepen and extend the researcher's reflexivity when responding to materials created by research participants.

Chronic condition management and self-management in Aboriginal communities in South Australia : outcomes of a longitudinal study

OBJECTIVES: This paper describes the longitudinal component of a larger mixed methods study into the processes and outcomes of chronic condition management and self-management strategies implemented in three Aboriginal communities in South Australia. The study was designed to document the connection between the application of structured systems of care for Aboriginal people and their longer-term health status. METHODS: The study concentrated on three diverse Aboriginal communities in South Australia; the Port Lincoln Aboriginal Health Service, the Riverland community, and Nunkuwarrin Yunti Aboriginal Health Service in the Adelaide metropolitan area. Repeated-measure clinical data were collected for individual participants using a range of clinical indicators for diabetes (type 1 and 2) and related chronic conditions. Clinical data were analysed using random effects modelling techniques with changes in key clinical indicators being modelled at both the individual and group levels. RESULTS: Where care planning has been in place longer than in other sites overall improvements were noted in BMI, cholesterol (high density and low density lipids) and HbA1c. These results indicate that for Aboriginal patients with complex chronic conditions, participation in and adherence to structured care planning and self-management strategies can contribute to improved overall health status and health outcomes. CONCLUSIONS: The outcomes reported here represent an initial and important step in quantifying the health benefits that can accrue for Aboriginal people living with complex chronic conditions such as diabetes, heart disease and respiratory disease. The study highlights the benefits of developing long-term working relationships with Aboriginal communities as a basis for conducting effective collaborative health research programs.

Considering Aboriginal palliative care models: the challenges for mainstream services

This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care centres. Over the last two decades only two models of palliative care focusing on and developed in Aboriginal communities have been implemented. The seminal contribution to Aboriginal Palliative Care was in the form of a resource kit developed to support palliative care providers to examine their practice for cultural appropriateness for Aboriginal and Torres Strait Islanders. The "living model" coming from this project is adaptive and flexible, enabling implementation in different Aboriginal country as a participative process with community input. The Australian government"s National Indigenous Palliative Care Needs Study similarly indicated that Australian empirical research on Aboriginal palliative care service provision is in its infancy, and comprehensive data on the rates of Aboriginal access to palliative care services did not exist. What literature does exist is drawn together in an argument for the development and need for culturally specific Aboriginal palliative care models, which are culturally appropriate, locally accessible and delivered in collaboration and partnership with Aboriginal controlled health services. This is essential because Aboriginal people are a minority cultural group who are disconnected from mainstream health service delivery, and have a sense of cultural isolation when accessing mainstream services. It is preferable that palliative care is delivered in a collaboration between Aboriginal Controlled Health Service and mainstream palliative care services to ensure a dignified end of life for the Aboriginal person. These collaborations and partnerships are fundamental to ensure that a critical mass of Aboriginal clinicians are trained and experienced in end of life care and palliation. Developing palliative care programs within Aboriginal communities and training Aboriginal Health Workers, promoted and developed in partnership with the Aboriginal community, are important strategies to enhance palliative care service provision. Further partnerships should be championed in this collaborative process, acknowledging a need for palliative care models that fit with Aboriginal peoples" community values, beliefs, cultural/ spiritual rituals, heritage and place.

Chronic disease self-management in Aboriginal communities : towards a sustainable program of care in rural communities

The Chronic Disease Self-Management (CDSM) strategy for Aboriginal patients on Eyre Peninsula, South Australia, was designed to develop and trial new program tools and processes for goal setting, behaviour change and self-management for Aboriginal people with diabetes. The project was established as a one-year demonstration project to test and trial a range of CDSM processes and procedures within Aboriginal communities and not as a formal research project. Over a one-year period, 60 Aboriginal people with type-2 diabetes in two remote regional centres participated in the pilot program. This represents around 25% of the known Aboriginal diabetic population in these sites. The project included training for four Aboriginal Health Workers in goal setting and self-management strategies in preparation for them to run the program. Patients completed a Diabetes Assessment Tool, a Quality of Life Questionnaire (SF12), the Work and Social Adjustment Scale (WASAS) at 0, 6 and 12 months. The evaluation tools were assessed and revised by consumers and health professionals during the trial to determine the most functional and acceptable processes for Aboriginal patients. Some limited biomedical data were also recorded although this was not the principal purpose of the project. Initial results from the COAG coordinated care trial in Eyre suggest that goal setting and monitoring processes, when modified to be culturally inclusive of Aboriginal people, can be effective strategies for improving self-management skills and health-related behaviours of patients with chronic illness. The CDSM pilot study in Aboriginal communities has led to further refinement of the tools and processes used in chronic illness self-management programs for Aboriginal people and to greater acceptance of these processes in the communities involved. Participation in a diabetes self-management program run by Aboriginal Health Workers assists patients to identify and understand their health problems and develop condition management goals and patient-centred solutions that can lead to improved health and wellbeing for participants. While the development of self-management tools and strategies led to some early indications of improvements in patient participation and resultant health outcomes, the pilot program and the refinement of new assessment tools used to assist this process has been the significant outcome of the project. The CDSM process described here is a valuable strategy for educating and supporting people with chronic conditions and in gaining their participation in programs designed to improve the way they manage their illness. Such work, and the subsequent health outcome research planned for rural regions, will contribute to the development of more comprehensive CDSM programs for Aboriginal communities generally.

Amalgamation of health services in South-West Victoria: reinvention or survival?

In Australia 'the hospital' has long been considered the cornerstone of small, rural health services. However, this premise has been altered significantly by the introduction of casemix loading and diagnostic-related groups that promote a rationalised output-based model of management. In the light of these changes, many rural health services have struggled to reinvent themselves by establishing a range of service models such as Multi-purpose Service (MPS) and Health Streams, while maintaining traditional models (i.e. bush nursing centres, nursing homes and aged-care facilities). These changes are about survival. This paper analyses one such case in south-west Victoria, the Macarthur and District Community Outreach Service, and compares the outcomes with other similar Victorian rural health research projects. Particular attention is paid to the nature of the health services, the management of change and the proposed health outcomes for the local rural communities. In conclusion, it is argued that this study adds to the body of knowledge surrounding the construction of models of community health and development programming, These models impact upon future rural and remote area initiatives throughout Australia.

The role and theoretical evolution of knowledge translation and exchange in public health

Background There is an increased emphasis in public health research on effective models and strategies to support knowledge translation (KT), the exchange, synthesis and ethically sound application of research findings within a complex set of interactions among researchers and knowledge users. In other words, KT can be seen as an acceleration of the knowledge cycle—an acceleration of the natural transformation of knowledge into use (Canadian Institutes of Health Services Research. Knowledge Translation Strategy, 2004). The most recent conceptualizations consider the complexities of public health decision-making. The role of practitioners and communities is increasingly considered.

Methods We identify, describe and discuss the theoretical underpinnings of KT and recommend a way forward to build the evidence for more effective practice.

Results Theoretical perspectives increasingly influence research on KT in public health. A range of innovative work is being conducted to explore methods for KT using practical tools, often with the support of government.

Conclusions KT describes a crucial and to date under-developed element of the research process. There is an important gap in theoretically informed empirical studies of effectiveness of proposed approaches in public health, health promotion and preventive medicine, and thus much of the debate remains abstract. There is clearly an urgent policy need to establish the effectiveness of KT models in a range of contexts. This must include both the consideration of development and the utilization of knowledge.

The health and well-being of adolescents: a school-based population study of the self-report child health questionnaire

Purpose: To evaluate a new generic measure of adolescent health status, the self-report version of the Child Health Questionnaire (CHQ), and provide population-based data. Furthermore, we aimed to examine the impact of common adolescent illness and health concerns on their health and well-being.

Methods: A stratified, two-stage, random cluster sampling design was used to obtain a cross-sectional sample of subjects through schools. A written questionnaire included the 80-item 12-scale self-report CHQ and items measuring health concerns, illnesses/health conditions, and sociodemographics.

Results: A total of 2361 adolescents participated (response rate of 70%). Reliability was high: Tests of internal consistency and discriminant validity reported 90% of item-scale correlations >.4; all scales had Cronbach alpha coefficients >.7. Adolescents with illnesses/conditions or health concerns reported lower scores and larger differences for content-related scales, supporting content and construct validity. Statistically significant age and gender trends were observed for Mental Health, Self-Esteem, General Health, and Family Cohesion scales. Health status worsened as health concerns increased (X2 linear trend, p = .00) with deterioration in health of 5–20% on all scales for emotional health concerns (40% of sample).

Conclusions: The self-report CHQ is a reliable and seemingly valid measure of health and well-being for adolescent health research, although additional measures may be required where scales have high ceiling values. The significantly lower scores reported by adolescents with illness and/or health concerns lend support to the use of standardized health measures and longitudinal research to further examine the impact of adolescent comorbidities and their causal determinants.

New money for mental health : will it make things better for rural and remote Australia?

New Australian government funding for the Better Outcomes in Mental Health Care initiative is a significant step forward for mental health, with general practitioners now able to offer direct referrals to psychologists, social workers, occupational therapists and Aboriginal health workers. Incentives for better teamwork between GPs and other mental health professionals have been introduced, but may have unintended consequences, including an exacerbation of workforce shortages in rural and remote areas. Possible solutions to these shortages include rural scholarships for students in the mental health professions; recruitment and retention of students coordinated by university departments of rural health; better access to continuing professional development; and federally funded rural positions and additional financial incentives for rural mental health practitioners.

Cervical cancer services for Indigenous Women: Advocacy, Community-Based Research and Policy Change in Australia

Collaborative research undertaken in the state of Queensland, Australia, resulted in major changes in cervical cancer screening and treatment for Indigenous women. Guided by an Indigenous statewide reference group and with an Indigenous researcher playing a lead role, qualitative data were collected using interviews, focus groups, and larger community meetings; and case studies were conducted with health workers and community members from diverse rural, remote and urban communities, to explore the different cultural and structural factors affecting understanding and awareness of cervical cancer and Indigenous women's use of and access to health services for screening, diagnosis and treatment. These data were supplemented by an analysis of clinical data and health service checklists. We discuss the methodology and summarize the key social and structural factors that discourage women from presenting for screening or returning for follow-up. These include women's misunderstanding of cervical cancer screening, fear of cancer, distrust of health services, poor recall and follow-up systems, and the economic and social burden to women presenting for treatment. We describe how the research process and subsequent activities provided Indigenous women with a vehicle for their own advocacy, resulting in important policy and program changes.