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.

Towards the development of a wellbeing model for aboriginal and Torres Strait islander peoples living with chronic disease.

BACKGROUND: Re-defining the way in which care is delivered, to reflect Aboriginal and Torres Strait Islander peoples' needs and values, is essential for improving the accessibility of primary healthcare. This study focused on developing a Framework to support the quality of care and quality of life of, as well as treatment for, Aboriginal and Torres Strait Islander peoples living with chronic disease. METHODS: A team of researchers, including thirteen experienced Aboriginal healthcare professionals, came together to undertake this important work. Using a Participatory Action Approach, this study actively engaged people with local knowledge to ensure that the Framework was developed by and for Aboriginal people. RESULTS: The final Wellbeing Framework consists of two core values and four elements, each supported by four principles. Importantly, the Framework also includes practical examples of how the principles could be applied. National Reference Group members, including community representatives, policy makers and healthcare providers, reviewed and approved the final Framework. CONCLUSION: The outcome of this collaborative effort is a Framework to guide primary healthcare services to develop locally relevant, flexible approaches to care which can respond to communities' and individuals' varied understandings of wellbeing.

Facilitating engagement through strong relationships between primary healthcare and Aboriginal and Torres Strait Islander peoples.

OBJECTIVE: Given the high prevalence of chronic disease, it is of concern that access to and sustained engagement with primary healthcare services by Aboriginal and Torres Strait Islander Australians is often far lower than would be expected. This study sought to explore ways in which relationships can support sustained engagement with healthcare services. METHODS: Semi-structured interviews were conducted with 126 Aboriginal and Torres Strait Islander participants with and without chronic disease and 97 Aboriginal and Torres Strait Islander and non-Indigenous healthcare providers, healthcare service managers or administrative staff. RESULTS: Our findings indicate that when faced with acute health issues, Aboriginal and Torres Strait Islander participants did prioritise care, provided that the service was both physically and emotionally welcoming. Trustworthiness of healthcare providers and strong relationships with patients were the most important factors for encouraging sustained engagement overtime. CONCLUSIONS: Responsibility for sustaining relationships does not rest solely with Aboriginal and Torres Strait Islander patients. Rather, healthcare providers need to commit to the process of building and maintaining relationships. IMPLICATIONS: First and foremost healthcare providers should take time to establish and then maintain relationships. Healthcare services can also contribute by ensuring facilities are welcoming for Aboriginal and Torres Strait Islander peoples.

What keeps you strong? A systematic review identifying how primary health-care and aged-care services can support the well-being of older Indigenous peoples.

AIM: The objective of this systematic review was to identify primary health-care or aged-care strategies that have or could support the well-being of older Indigenous peoples. METHODS: A search was undertaken of primary databases including Medical Literature Analysis and Retrieval System Online and Cumulative Index to Nursing and Allied Health Literature. Papers which reported on the perspectives of older Indigenous peoples, community members and provider participants were included. Findings were pooled using a meta-aggregative approach. RESULTS: Three high-level synthesised findings - maintaining Indigenous identity, promoting independence and delivering culturally safe care - were believed to be important for supporting the well-being of older Indigenous peoples. CONCLUSIONS: As physical independence often diminishes with age, having the support of culturally safe primary health-care and aged-care services that understand the importance of maintaining an Indigenous identity and promoting independence will be crucial for the well-being of older Indigenous peoples.

Characteristics of Indigenous primary health care models of service delivery: a scoping review protocol.

REVIEW OBJECTIVE: The objective of the scoping review is to identify and describe within the existing literature the characteristics (values, principles, components and suggest practical applications) of primary health care models of service delivery for Indigenous people. More specifically, the review question is:What are the characteristics (values, principles, components and suggested practical applications) of primary health care models of service delivery for Indigenous people?Findings from this scoping review will inform two systematic reviews. One of these will explore the acceptability and the other the effectiveness of identified characteristics. METHODOLOGY: The scoping review will follow the JBI Scoping Review methodology as outlined in the 2015 Joanna Briggs Institute Reviewers' Manual. BACKGROUND: Indigenous populations in colonized countries experience worse health outcomes relative to their non-Indigenous counterparts. In Australia, in the period 2010 to 2012 the estimated gap in life expectancy between Aboriginal and Torres Strait Islander Australians compared to non-Indigenous Australians was 10 years Similar gaps in life expectancy between Indigenous and non-Indigenous have been demonstrated in other countries, such as New Zealand, Canada and the United StatesThe gap in life expectancy and the health disadvantage experienced by Indigenous people is in part the result of mainstream health services not adequately meeting the health needs of Indigenous people and Indigenous people's inability to access mainstream services Part of the solution has been the establishment of primary health care services for and in many cases run by Indigenous people. Indigenous primary health services have been developed to provide culturally appropriate services that meet the needs of local Indigenous communities.In Australia, the first Aboriginal medical service was established in 1971 in Redfern, New South Wales, by "community activists in response to ongoing discrimination against Aboriginal people within mainstream health services to address the poor health and premature deaths of Aboriginal people, and to provide a culturally appropriate system of health care". There are now over 150 Aboriginal Community Controlled Health Services in Australia. Aboriginal Community Controlled Health Services are underpinned by common values such as culture, cultural respect, integrity, inclusion, self-determination, community control, sovereignty and leadership.Similar models of Indigenous health services exist in other countries, such as Maori health providers in New Zealand, First Nations and Inuit Health Authorities in Canada, and the Indian Health Services in the US. In New Zealand, Maori health providers deliver health and disability services to Maori and non-Maori clients. The difference between Maori health providers and mainstream services in New Zealand is that Maori health services are based on kaupapa, a plan or set of principles and ideas that informs behavior and customs, and the delivery framework which is distinctively Maori. First Nations and Inuit Health Authorities in Canada coordinate and integrate health programs and services to achieve better health outcomes for First Nations people. These community-based services largely focus on health promotion and prevention. First Nations and Inuit Health Authorities work under a unique health governance structure that includes local First Nations' leadership, based on the philosophy of self-governance and self-determination, which represent and address the health needs of First Nation communities. The Indian Health Service (IHS) in the US is responsible for providing comprehensive health services to American Indians and Alaska Natives. The IHS aims to raise the physical, mental, social and spiritual health of American Indians and Alaska Natives to the highest level, and its goal is "to ensure that comprehensive, culturally acceptable personal and public health services are available and accessible to American Indian and Alaska Native people". The IHS "grew out of a special government-to-government relationship between the federal government and Indian Tribes".Evidence suggests that "a strong primary health care sector is essential to the health and wellbeing of a population, and that a strong primary health care sector is associated with better population health, reduced costs of health care provision, and greater efficiency within the system". A study of Aboriginal Canadians shows that poor access and ineffective primary health care services were directly related to increased avoidable hospital admissions. In addition, a recent study in Australia focusing on the costs and the health outcomes associated with primary care use by Indigenous people with diabetes in remote communities in the Northern Territory demonstrates that improved access to primary health care which is responsive to the needs of Aboriginal and Torres Strait Islander people is both cost-effective and associated with better health outcomes.Given the strong link between primary health care and health outcomes and the significant contribution Indigenous health services make towards reducing the health disadvantage experienced by Indigenous people, it is important to understand the characteristics that support the delivery of health provided by Indigenous health services and their unique models. While there is not a clear definition in the literature about what a model of care or model of service delivery is, for the purpose of this review, it will encompass all factors involved in the delivery of care including but not limited to the vision, values and strategies that underpin the delivery of care, healthcare services and programs, governance and leadership, workforce, organization and supply, and infrastructure and other resources.The aim of this scoping review is to determine the characteristics of Indigenous primary health care models of service delivery by drawing on existing literature that look at the way in which services are delivered in this setting.An initial search of literature was conducted to establish whether there are studies with findings available to answer the review question, and whether there is a systematic or scoping review addressing the knowledge gap currently underway or published. There are no systematic or scoping reviews published or underway that address the question proposed by this review.

Using Indigenist and Indigenous methodologies to connect to deeper understandings of Aboriginal and Torres Strait Islander peoples' quality of life.

The lack of a common description makes measuring the concept of quality of life (QoL) a challenge. Whether QoL incorporates broader social features or is attributed to health conditions, the diverse range of descriptions applied by various disciplines has resulted in a concept that is multidimensional and vague. The variety of theoretical conceptualisations of QoL confounds and confuses even the most astute. Measuring QoL in Aboriginal and Torres Strait Islander populations is even more challenging. Instruments commonly developed and used to measure QoL are often derived from research methodologies shaped by Western cultural perspectives. Often they are simply translated for use among culturally and linguistically diverse Aboriginal and Torres Strait Islander peoples. This has implications for Aboriginal and Torres Strait Islander populations whose perceptions of health are derived from within their specific cultures, value systems and ways of knowing and being. Interconnections and relationships between themselves, their communities, their environment and the natural and spiritual worlds are complex. The way in which their QoL is currently measured indicates that very little attention is given to the diversity of Aboriginal and Torres Strait Islander peoples' beliefs or the ways in which those beliefs shape or give structure and meaning to their health and their lives. The use of Indigenist or Indigenous methodologies in defining what Aboriginal and Torres Strait Islander peoples believe gives quality to their lives is imperative. These methodologies have the potential to increase the congruency between their perceptions of QoL and instruments to measure it.

Enablers and barriers to the implementation of primary health care interventions for Indigenous people with chronic diseases: a systematic review.

BACKGROUND: Access to appropriate, affordable, acceptable and comprehensive primary health care (PHC) is critical for improving the health of Indigenous populations. Whilst appropriate infrastructure, sufficient funding and knowledgeable health care professionals are crucial, these elements alone will not lead to the provision of appropriate care for all Indigenous people. This systematic literature review synthesised international evidence on the factors that enable or inhibit the implementation of interventions aimed at improving chronic disease care for Indigenous people. METHODS: A systematic review using Medical Literature Analysis and Retrieval System Online (MEDLINE) (PubMed platform), Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Excerpta Medica Database (EMBASE), ATSIHealth, Australian Indigenous HealthInfoNet via Informit Online and Primary Health Care Research and Information Service (PHCRIS) databases was undertaken. Studies were included if they described an intervention for one or more of six chronic conditions that was delivered in a primary health care setting in Australia, New Zealand, Canada or the United States. Attitudes, beliefs, expectations, understandings and knowledge of patients, their families, Indigenous communities, providers and policy makers were of interest. Published and unpublished qualitative and quantitative studies from 1998 to 2013 were considered. Qualitative findings were pooled using a meta-aggregative approach, and quantitative data were presented as a narrative summary. RESULTS: Twenty three studies were included. Meta-aggregation of qualitative data revealed five synthesised findings, related to issues within the design and planning phase of interventions, the chronic disease workforce, partnerships between service providers and patients, clinical care pathways and patient access to services. The available quantitative data supported the qualitative findings. Three key features of enablers and barriers emerged from the findings: (1) they are not fixed concepts but can be positively or negatively influenced, (2) the degree to which the work of an intervention can influence an enabler or barrier varies depending on their source and (3) they are inter-related whereby a change in one may effect a change in another. CONCLUSIONS: Future interventions should consider the findings of this review as it provides an evidence-base that contributes to the successful design, implementation and sustainability of chronic disease interventions in primary health care settings intended for Indigenous people.