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.

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.

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.

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.

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.