Priority setting: Development of the South Australian Aboriginal Chronic Disease Consortium RoadMap for Action.

ISSUES ADDRESSED: Aboriginal and Torres Strait Islander (Aboriginal) people in South Australia are overburdened by cardiovascular disease, diabetes and cancer. The South Australian Aboriginal Chronic Disease Consortium (Consortium) was established in June 2017 as a collaborative partnership to lead the implementation of three state-wide chronic disease plans using a strategic approach to identifying key priority areas for action. METHODS: In 2017-2018, the Consortium Coordinating Centre facilitated a priority setting process, which involved extensive consultation, including a prioritisation survey and stakeholder workshops. The Consortium's Aboriginal Community Reference Group was instrumental in leading the identification of priorities for action. RESULTS: The Consortium RoadMap for Action identified seven across-plan priorities and six condition-specific priorities. It acknowledged that: strengthening social and emotional well-being is central to improving health outcomes; prevention and early detection, acute management and ongoing management are all components of the continuum of care; and improving access to services, strengthening the workforce, and monitoring and evaluation are required across the continuum of care. CONCLUSION: Widespread implementation failure in the past across the health system and health services implementation and research translation highlights the value of the Consortium approach and its commitment to implementing the state-wide chronic disease plans in a collaborative manner. The Consortium relies on and fosters cross-sectoral alignment, with all key players including all public, private and Aboriginal Community Controlled health services, to progress its priorities and aspirations to improve health outcomes for Aboriginal people using evidence-based strategies. SO WHAT?: Rigorous and transparent priority setting processes that bring together research, clinical practice, health services operations, policy and community perspectives can foster intersectoral collaboration and partnership and support the implementation of shared priorities.

An Aboriginal-led consortium approach to chronic disease action for health equity and holistic wellbeing.

ISSUE ADDRESSED: The Wellbeing Economy, which places human and ecological wellbeing at the centre of policy making, aligns with holistic Aboriginal and Torres Strait Islander conceptualisations of health and wellbeing. In order to address chronic diseases in South Australian Aboriginal and Torres Strait Islander populations, the South Australian Aboriginal Chronic Disease Consortium (Consortium) is fostering action in ways that align both with the Wellbeing Economy and with Health in All Policies (HiAP) approaches. METHODS: In June 2017, the Consortium was established as a collaborative partnership between government and non-government organisations, researchers, Aboriginal organisations and communities to lead the effective implementation of three state-wide chronic disease plans. A coordinating centre was funded to support and progress the work of the Consortium. RESULTS: During its first 5 years, the Consortium has developed a foundation for sustained system reform through partnering with stakeholders, leading projects and initiatives, advocating for key priorities, leveraging existing infrastructure and funding, supporting services, and coordinating delivery of priority actions using innovative approaches. CONCLUSIONS: Through the Consortium governance structure, Aboriginal and Torres Strait Islander community members, policy actors, service providers and researchers oversee, drive, influence and support the implementation of priority action initiatives. Sustained funding, competing priorities of partner organisations and project evaluation are constant challenges. SO WHAT?: A consortium approach provides direction and shared priorities, which foster collaboration across and between organisations, service providers and the Aboriginal community. Aligning with HiAP approaches and the Wellbeing Economy, it harnesses knowledge, networks and partnerships that support project implementation and reduce duplication.

Understanding culturally safe aged care from the perspectives of older Aboriginal Australians in rural and remote communities.

ISSUE ADDRESSED: Aboriginal and Torres Strait Islander peoples face challenges in accessing aged care and are less likely to use some services than their non-Indigenous counterparts. Culturally safe care is increasingly recognised as an enabler to improve access and quality of care. This study explored older Aboriginal peoples' perceptions and experience of culturally safe aged care. METHODS: We conducted semi-structured interviews with sixty-three older Aboriginal people, purposively sampled from three rural and remote geographic locations in South Australia, between April and October 2018, with participants who were both receiving and not receiving aged care services. We asked participants how organisations do or could meet their aged care needs. We analysed interview data inductively into themes. These themes were incorporated into six principles of culturally safe aged care which were subsequently endorsed by participants and study stakeholders. RESULTS: Participants described culturally safe aged care services as those which facilitated or maintained connection to participants' culture, traditional lands and community. Five themes were identified: maintaining cultural identity, culturally informed service delivery, culturally competent workforce, culturally supportive environments and partnerships and collaboration within the aged care service system. CONCLUSION: Addressing cultural safety in aged care will require organisations to adapt their policies, service delivery, environments and work practices to meet the needs of older Aboriginal peoples. SO WHAT? Identifying culturally safe aged care from the perspectives of older Aboriginal and Torres Strait Islander peoples provides timely insight to how services may be better designed and implemented to promote quality of life.

Assessing the quality of health research from an Indigenous perspective: the Aboriginal and Torres Strait Islander quality appraisal tool.

BACKGROUND: The lack of attention to Indigenous epistemologies and, more broadly, Indigenous values in primary research, is mirrored in the standardised critical appraisal tools used to guide evidence-based practice and systematic reviews and meta-syntheses. These critical appraisal tools offer no guidance on how validity or contextual relevance should be assessed for Indigenous populations and cultural contexts. Failure to tailor the research questions, design, analysis, dissemination and knowledge translation to capture understandings that are specific to Indigenous peoples results in research of limited acceptability and benefit and potentially harms Indigenous peoples. A specific Aboriginal and Torres Strait Islander Quality Appraisal Tool is needed to address this gap. METHOD: The Aboriginal and Torres Strait Islander Quality Appraisal Tool (QAT) was developed using a modified Nominal Group and Delphi Techniques and the tool's validity, reliability, and feasibility were assessed over three stages of independent piloting. National and international research guidelines were used as points of reference. Piloting of the Aboriginal and Torres Strait Islander QAT with Aboriginal and Torres Strait Islander and non-Indigenous experts led to refinement of the tool. RESULTS: The Aboriginal and Torres Strait Islander QAT consists of 14 questions that assess the quality of health research from an Aboriginal and Torres Strait Islander perspective. The questions encompass setting appropriate research questions; community engagement and consultation; research leadership and governance; community protocols; intellectual and cultural property rights; the collection and management of research material; Indigenous research paradigms; a strength-based approach to research; the translation of findings into policy and practice; benefits to participants and communities involved; and capacity strengthening and two-way learning. Outcomes from the assessment of the tool's validity, reliability, and feasibility were overall positive. CONCLUSION: This is the first tool to appraise research quality from the perspective of Indigenous peoples. Through the uptake of the Aboriginal and Torres Strait Islander QAT we hope to improve the quality and transparency of research with Aboriginal and Torres Strait Islander peoples, with the potential for greater improvements in Aboriginal and Torres Strait Islander health and wellbeing.

Aboriginal experiences of cancer and care coordination: Lessons from the Cancer Data and Aboriginal Disparities (CanDAD) narratives.

BACKGROUND: Aboriginal people with cancer experience worse outcomes than other Australians for a range of complex and interrelated reasons. A younger age at diagnosis, higher likelihood of more advanced cancer or cancer type with poorer prognosis, geographic isolation and cultural and language diversity mean that patient pathways are potentially more complex for Aboriginal people with cancer. In addition, variation in the quality and acceptability of care may influence cancer outcomes. OBJECTIVE: This study sought to understand how care coordination influences Aboriginal people's experiences of cancer treatment. METHODS: Interviews with 29 Aboriginal patients or cancer survivors, 11 carers and 22 service providers were carried out. Interviews were semi-structured and sought to elicit experiences of cancer and the health-care system. The manifest content of the cancer narratives was entered onto a cancer pathway mapping tool and underlying themes were identified inductively. RESULTS: The practice of cancer care coordination was found to address the needs of Aboriginal patients and their families/carers in 4 main areas: "navigating the health system"; "information and communication"; "things to manage at home"; and "cultural safety". CONCLUSIONS: The CanDAD findings indicate that, when the need for cancer care coordination is met, it facilitated continuity of care in a range of ways that may potentially improve cancer outcomes. However, the need remains unmet for many. Findings support the importance of dedicated care coordination to enable Aboriginal people to receive adequate and appropriate patient-centred care, so that the unacceptable disparity in cancer outcomes between Aboriginal and non-Aboriginal people can be addressed.

Supporting best practice in the management of chronic diseases in primary health care settings: a scoping review of training programs for Indigenous Health Workers and Practitioners.

Background To improve diabetes management in primary health care for the Aboriginal and Torres Strait Islander peoples population, training programs that are culturally and contextually relevant to the local context are required. Using a scoping review methodology, the aim of this review was to describe the characteristics of chronic disease management training programs for Aboriginal Health Workers and Practitioners, their effectiveness on knowledge and skills, and client-related outcomes, and the enablers, barriers to delivery and participation. Methods Following protocol parameters, a systematic search was conducted in relevant databases and grey literature. Two independent reviewers screened the title and abstract of each paper to determine if the study met the inclusion criteria. Results Of the 23 included studies, most were developed with stakeholders, profession facilitated and delivered by cultural facilitators. All training programs included content knowledge, two included a professional support network, four provided on-the-job support and six had follow-up support post-training. Modes of delivery ranged from didactic, storytelling and hands-on learning. Two studies reported significant improvement in participants' knowledge and confidence; one reported improvement in knowledge (12.7% increase pre-post training), and an increase in confidence in both clinical and non-clinical skills. Enablers (relevance, modes of learning, power of networking, improved knowledge, confidence and clinical practice) and barriers (adult learning capabilities, competing work-family commitments) were reported. Few studies reported on knowledge transfer into clinical practice and client-related outcomes. Conclusions Multifaceted training programs for Aboriginal health workers are well received and may improve workforce capability.

Translation of culturally and contextually informed diabetes training for Aboriginal primary health care providers on Aboriginal client outcomes: Protocol of a cluster randomized crossover trial of effectiveness.

BACKGROUND: Indigenous populations globally have significantly high rates of type 2 diabetes compared to their non-Indigenous counterparts. This study aims to implement and evaluate the effectiveness of a culturally and contextually informed Aboriginal Diabetes Workforce Training Program on Aboriginal primary health care workforce knowledge, attitude, confidence, skill and practice relating to diabetes care. METHODS: A Cluster Randomised Crossover Control Trial with two arms (Group A and Group B) will be conducted with Aboriginal primary health care services in South Australia. These services primarily provide primary health care to Aboriginal and Torres Strait Islander people. All healthcare service sites will be randomised into groups A and B to receive the training program. The training program consists of three components: 1) Peer support network, 2) E-Learning modules and 3) onsite support. Aboriginal Health Workers of participating sites will be invited to participate in the monthly online peer support network and all chronic disease staff are eligible to participate in the E-Learning modules and onsite support. The Peer Support Network runs for the entirety of the study, 17 months. Training components 2 and 3 occur simultaneously and are 2.5 months in length, with a six-month washout period between the two randomised groups undertaking the training. All primary outcomes of the study relate to diabetes management in a primary health care settings and measure participants' knowledge, attitude, confidence, practice and skills. These will be collected at seven time points across the entire study. Secondary outcomes measure satisfaction of the peer support network using a survey, interviews to understand enablers and barriers to participation, health service systems characteristics through focus groups, and medical record review to ascertain diabetes patients' care received and their clinical outcomes up to 12 months post training intervention. DISCUSSION: The findings will explore the effectiveness of the training program on Aboriginal primary health care provider knowledge, attitude, confidence, skill and practice relating to diabetes care. The final findings will be published in 2027. TRIAL REGISTRATION: The study was prospectively registered in The Australian New Zealand Clinical Trials Registry (ANZCTR), with registration number ACTRN12623000749606 at ANZCTR - Registration. Universal Trial Number (UTN) U1111-1283-5257.

Health System Enablers and Barriers to Continuity of Care for First Nations Peoples Living with Chronic Disease.

Introduction: Failings in providing continuity of care following an acute event for a chronic disease contribute to care inequities for First Nations Peoples in Australia, Canada, and Aotearoa (New Zealand). Methods: A rapid narrative review, including primary studies published in English from Medline, Embase, PsycINFO, and Cochrane Central, concerning chronic diseases (cancer, cardiovascular disease, chronic kidney disease, diabetes, and related complications), was conducted. Barriers and enablers to continuity of care for First Nations Peoples were explored considering an empirical lens from the World Health Organization framework on integrated person-centred health services. Results: Barriers included a need for more community initiatives, health and social care networks, and coaching and peer support. Enabling strategies included care adapted to patients' cultural beliefs and behavioural, personal, and family influences; continued and trusting relationships among providers, patients, and caregivers; and provision of flexible, consistent, adaptable care along the continuum. Discussion: The support and co-creation of care solutions must be a dialogical participatory process adapted to each community. Conclusions: Health and social care should be harmonised with First Nations Peoples' cultural beliefs and family influences. Sustainable strategies require a co-design commitment for well-funded flexible care plans considering coaching and peer support across the lifespan.

Exploring self-determined solutions to service and system challenges to promote social and emotional wellbeing in Aboriginal and Torres Strait Islander people: a qualitative study.

Introduction: Many Aboriginal and Torres Strait Islander people living on Kaurna Country in northern Adelaide experience adverse health and social circumstances. The Taingiwilta Pirku Kawantila study sought to understand challenges facing Aboriginal and Torres Strait Islander communities and identify solutions for the health and social service system to promote social and emotional wellbeing. Methods: This qualitative study applied Indigenous methodologies undertaken with Aboriginal and Torres Strait Islander governance and leadership. A respected local Aboriginal person engaged with Aboriginal and Torres Strait Islander community members and service providers through semi-structured interviews and yarning circles that explored community needs and challenges, service gaps, access barriers, success stories, proposed strategies to address service and system challenges, and principles and values for service design. A content analysis identified the breadth of challenges in addition to describing key targets to empower and connect communities and optimize health and social services to strengthen individual and collective social and emotional wellbeing. Results: Eighty-three participants contributed to interviews and yarning circles including 17 Aboriginal community members, 38 Aboriginal and Torres Strait Islander service providers, and 28 non-Indigenous service providers. They expressed the need for codesigned, strengths-based, accessible and flexible services delivered by Aboriginal and Torres Strait Islander workers with lived experience employed in organisations with Aboriginal and Torres Strait Islander leadership and governance. Community hubs and cultural events in addition to one-stop-shop service centres and pre-crisis mental health, drug and alcohol and homelessness services were among many strategies identified. Conclusion: Holistic approaches to the promotion of social and emotional wellbeing are critical. Aboriginal and Torres Strait Islander people are calling for places in the community to connect and practice culture. They seek culturally safe systems that enable equitable access to and navigation of health and social services. Aboriginal and Torres Strait Islander workforce leading engagement with clients is seen to safeguard against judgement and discrimination, rebuild community trust in the service system and promote streamlined access to crucial services.

Aboriginal community-controlled aged care: principles, practices and actions to integrate with primary health care.

AIM: To identify: 1) best practice aged care principles and practices for Aboriginal and Torres Strait Islander older peoples, and 2) actions to integrate aged care services with Aboriginal community-controlled primary health care. BACKGROUND: There is a growing number of older Aboriginal and Torres Strait Islander peoples and an unmet demand for accessible, culturally safe aged care services. The principles and features of aged care service delivery designed to meet the unique needs of Aboriginal and Torres Strait Islander peoples have not been extensively explored and must be understood to inform aged care policy and primary health care planning into the future. METHODS: The research was governed by leaders from across the Aboriginal community-controlled primary health care sector who identified exemplar services to explore best practice in culturally aligned aged care. In-depth case studies were undertaken with two metropolitan Aboriginal community-controlled services. We conducted semi-structured interviews and yarning circles with 46 staff members to explore key principles, ways of working, enablers and challenges for aged care service provision. A framework approach to thematic analysis was undertaken with emergent findings reviewed and refined by participating services and the governance panel to incorporate national perspectives. FINDINGS: A range of principles guided Aboriginal community-controlled aged care service delivery, such as supporting Aboriginal and Torres Strait Islander identity, connection with elders and communities and respect for self-determination. Strong governance, effective leadership and partnerships, Aboriginal and Torres Strait Islander workforce and culturally safe non-Indigenous workforce were among the identified enablers of aged care. Nine implementation actions guided the integration of aged care with primary health care service delivery. Funding limitations, workforce shortages, change management processes and difficulties with navigating the aged care system were among the reported challenges. These findings contribute to an evidence base regarding accessible, integrated, culturally safe aged care services tailored to the needs of Aboriginal and Torres Strait Islander peoples.

Exploring barriers to and enablers of adequate healthcare for Indigenous Australian prisoners with cancer: a scoping review drawing on evidence from Australia, Canada and the United States.

BACKGROUND: International frameworks supported by national principles in Australia stipulate that prisoners should be provided with health services equivalent to those provided in the general community. However, a number of barriers unique to the prison system may hinder the provision of equitable healthcare for this population. In Australia, Indigenous people carry a greater burden of cancer mortality, which the Cancer Data and Aboriginal Disparities (CanDAD) project is seeking to address. During the course of recruiting participants to the CanDAD study, Indigenous Australian prisoners with cancer emerged as an important, under-researched but difficult to access sub-group. METHODS: This scoping review sought to identify barriers and facilitators of access to adequate and equitable healthcare for Indigenous Australian prisoners with cancer in Australia. This review demonstrated a lack of research and, as such, the scoping review was extended to prisoners with cancer in Australia, New Zealand, the United States and Canada. This approach was taken in order to summarise the existing body of evidence regarding the barriers and facilitators of access to adequate and equitable healthcare for those who are incarcerated and suffering from cancer, and highlight areas that may require further investigation. RESULTS: Eight studies or commentaries were found to meet the inclusion criteria. This limited set of findings pointed to a range of possible barriers faced by prisoners with cancer, including a tension between the prisons' concern with security versus the need for timely access to medical care. CONCLUSION: Findings identified here offer potential starting points for research and policy development. Further research is needed to better elucidate how barriers to adequate cancer care for prisoners may be identified and overcome, in Australia and internationally. Furthermore, given Indigenous Australians' over-burden of cancer mortality and over-representation in the prison system, further research is needed to identify whether there are a unique set of barriers for this group.

Cancer Data and Aboriginal Disparities (CanDAD)-developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol.

INTRODUCTION: In Australia, Aboriginal and Torres Strait Islander People carry a greater burden of cancer-related mortality than non-Aboriginal Australians. The Cancer Data and Aboriginal Disparities Project aims to develop and test an integrated, comprehensive cancer monitoring and surveillance system capable of incorporating epidemiological and narrative data to address disparities and advocate for clinical system change. METHODS AND ANALYSIS: The Advanced Cancer Data System will integrate routinely collected unit record data from the South Australian Population Cancer Registry and a range of other data sources for a retrospective cohort of indigenous people with cancers diagnosed from 1990 to 2010. A randomly drawn non-Aboriginal cohort will be matched by primary cancer site, sex, age and year at diagnosis. Cross-tabulations and regression analyses will examine the extent to which demographic attributes, cancer stage and survival vary between the cohorts. Narratives from Aboriginal people with cancer, their families, carers and service providers will be collected and analysed using patient pathway mapping and thematic analysis. Statements from the narratives will structure both a concept mapping process of rating, sorting and prioritising issues, focusing on issues of importance and feasibility, and the development of a real-time Aboriginal Cancer Measure of Experience for ongoing linkage with epidemiological data in the Advanced Cancer Data System. Aboriginal Community engagement underpins this Project. ETHICS AND DISSEMINATION: The research has been approved by relevant local and national ethics committees. Findings will be disseminated in local and international peer-reviewed journals and conference presentations. In addition, the research will provide data for knowledge translation activities across the partner organisations and feed directly into the Statewide Cancer Control Plan. It will provide a mechanism for monitoring and evaluating the implementation of the recommendations in these documents.

Culturally appropriate methodology in obtaining a representative sample of South Australian Aboriginal adults for a cross-sectional population health study: challenges and resolutions.

BACKGROUND: The considerably lower average life expectancy of Aboriginal and Torres Strait Islander Australians, compared with non-Aboriginal and non-Torres Strait Islander Australians, has been widely reported. Prevalence data for chronic disease and health risk factors are needed to provide evidence based estimates for Australian Aboriginal and Torres Strait Islanders population health planning. Representative surveys for these populations are difficult due to complex methodology. The focus of this paper is to describe in detail the methodological challenges and resolutions of a representative South Australian Aboriginal population-based health survey. METHODS: Using a stratified multi-stage sampling methodology based on the Australian Bureau of Statistics 2006 Census with culturally appropriate and epidemiological rigorous methods, 11,428 randomly selected dwellings were approached from a total of 209 census collection districts. All persons eligible for the survey identified as Aboriginal and/or Torres Strait Islander and were selected from dwellings identified as having one or more Aboriginal person(s) living there at the time of the survey. RESULTS: Overall, the 399 interviews from an eligible sample of 691 SA Aboriginal adults yielded a response rate of 57.7%. These face-to-face interviews were conducted by ten interviewers retained from a total of 27 trained Aboriginal interviewers. Challenges were found in three main areas: identification and recruitment of participants; interviewer recruitment and retainment; and using appropriate engagement with communities. These challenges were resolved, or at least mainly overcome, by following local protocols with communities and their representatives, and reaching agreement on the process of research for Aboriginal people. CONCLUSIONS: Obtaining a representative sample of Aboriginal participants in a culturally appropriate way was methodologically challenging and required high levels of commitment and resources. Adhering to these principles has resulted in a rich and unique data set that provides an overview of the self-reported health status for Aboriginal people living in South Australia. This process provides some important principles to be followed when engaging with Aboriginal people and their communities for the purpose of health research.