Aboriginal community-controlled art centres: Keeping Elders strong and connected. Articulating an ontologically situated, intergenerational model of care.

OBJECTIVE: To articulate how Aboriginal community-controlled art centres support the role of Elders and older people within an ontologically situated, intergenerational model of care. METHODS: In this paper, we draw on stories (data) generated through interviews involving 75 people associated with three Aboriginal community-controlled art centres and field notes taken during a Participatory Action Research (PAR) study. The study was undertaken in collaboration with three community-controlled art centres and two aged care providers over almost 4 years, in diverse Indigenous sovereignties, all located in geographically remote Australian locations. RESULTS: Engaging with decolonising and Indigenous theoretical frameworks, our analysis identified three interwoven meta-themes. These include connection to law and culture; purpose; and healing. Each theme had important subthemes, and all were central to upholding the well-being of older people and their families, as well as the art centre workforce, Country, and their broader communities. CONCLUSIONS: Our analysis articulates an ontologically situated model of care within Aboriginal community-controlled art centres. The model sees that older people receive care from art centres and provide care to each other, to younger generations, to art centre staff, to Country, and to their broader communities. In this model, those in receipt of care, many of whom are older people, art centre directors, and important artists, govern how care is conceptualised and delivered.

Art centres supporting our Elders - 'old people, that's where our strength comes from' - results from a national survey of Australian Aboriginal and Torres Strait Islander community controlled art centres.

INTRODUCTION: There are approximately 90 Aboriginal and Torres Strait Islander community controlled art centres across Australia, the majority in geographically remote locations. This survey explored how these centres are supporting older people, including people living with dementia, if and how they are collaborating with aged care services and what challenges and opportunities they identify in these arrangements. METHODS: An online survey was developed by a team of Aboriginal and non-Aboriginal researchers, art centre staff and art centre consultants. The survey was distributed in 2018 to art centres across Australia via their four art centre peak bodies: Desart; the Association of Northern, Kimberley and Arnhem Aboriginal Artists; the Indigenous Art Centre Alliance - Far North Queensland and Torres Strait Islands; and the Aboriginal Art Centre Hub - Western Australia. The survey was also conducted face-to-face with participants at art centre annual events; and on field trips to North Western and Central Australia, conducted as part of an overarching study. RESULTS: There were 53 completed surveys, with the highest proportion of responses (43%) from art centre managers. The survey generated 330 qualitative responses to the 13 questions that provided this option. The results showed that art centres play a wide ranging and vital role in supporting the health and wellbeing of older artists, many of whom are considered Elders within their communities, and that this reaches far beyond the production of art. The results showed that art centres are a safe place providing older people with the purpose and means to generate income, to enact governance, and to share cultural knowledge through intergenerational connection. Additionally, the results indicate that art centres provide a significant amount of direct care for older people, and that relationships are fundamental to delivering this social, emotional, spiritual and physical care. Furthermore, they showed a great deal of collaboration between art centres and aged care services, although little of this is formally documented or resourced. CONCLUSION: The survey results demonstrate that art centres play a significant and previously unexplored role in supporting the wellbeing of older people and people living with dementia in remote Aboriginal and Torres Strait Islander communities across Australia. Respondents shared diverse examples of providing physical, social, emotional, spiritual and cultural care, assistance with navigating health and aged care systems, as well as examples of collaborations with aged care and health providers. The results demonstrate opportunities to recognise and resource this vital work. These findings are particularly important in the context of Australia's recent Royal Commission into Aged Care Quality and Safety, which found that systemic change is urgently required. Additionally, Indigenous scholars have called for a swell of system reform to address inequities in health and aged care systems. They advocate for a fundamental shift from biomedical and siloed models of care to integrated models that centralise culture, intergenerational connection and the cultural determinants of health. The results show that art centres could bring their expertise to this conversation.

Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities.

INTRODUCTION: Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers. METHODS: This was a cluster randomised controlled trial to compare the effect of a carer support program developed with a community-based participatory action research (PAR) approach to the delivery of information sessions to 100 carers of people aged 45 years or more living in four remote Aboriginal communities in Western Australia. RESULTS: The mean age of carers was 38.3±14.9 years, 76% were female and 77% were children or grandchildren of the care recipient. Carer strain and empowerment measures did not change significantly between baseline and follow-up. A statistically significant decrease in depression scores was observed in the PAR group. However, decreases were observed in both the PAR and control groups, and the change in scores did not differ significantly between groups. Depression scores decreased most in those who had not attended high school. Overall, the proportion of participants meeting criteria for depression decreased from 18.8% at baseline to 8.3% at follow-up. CONCLUSION: A carer support program was of equivocal benefit, although this research demonstrates that the wellbeing of carers in remote Aboriginal communities can potentially be markedly improved by outreach strategies.

The Well-Being of Carers of Older Aboriginal People Living in the Kimberley Region of Remote Western Australia: Empowerment, Depression, and Carer Burden.

Objective: To describe demographic features and well-being of carers of Aboriginal Australians aged ≥45 years in remote Western Australia. Method: Carer burden, empowerment, and depression were assessed in 124 Aboriginal carers in four remote Aboriginal communities. Results: Carers were aged 38.8 ± 15.0 years, 73.4% were female, and 75.8% were children or grandchildren of the person cared for. The mean Zarit-6 score was 3.7 ± 3.6. Attending high school (odds ratio [OR] = 0.3; 95% confidence interval [CI] = [0.1, 0.7]) and feeling empowered (OR = 0.2; 95% CI = [0.1, 0.8]) were inversely associated with carer burden; female carers were less likely to feel empowered (OR = 0.4; 95% CI = [0.2, 0.9]); and empowerment was inversely associated with depression (OR = 0.3; 95% CI = [0.1, 0.7]). Discussion: Aboriginal carers in remote communities are relatively young and most are children or grandchildren. Carer burden was lower than anticipated. However, existing tools may not adequately measure Aboriginal perspectives. Education and empowerment are key factors which support programs must consider.

Role of art centres for Aboriginal Australians living with dementia in remote communities.

OBJECTIVE: To explore the role art centres in remote communities play for Aboriginal and Torres Strait Islander Australians living with dementia. METHODS: A comprehensive literature search was undertaken, with no restrictions on articles regarding year of publication. RESULTS: Art programmes have been found to be of benefit to both people living with dementia and their carers, particularly when programmes are administered in environments that are culturally revered. Findings indicate remote art centres play a key role in maintaining traditions, culture and practices unique to Aboriginal and Torres Strait Islanders, but there is a gap in knowledge regarding how they cater for the needs of people with dementia. CONCLUSION: Addressing this gap will be helpful in remote areas where prevalence of dementia is up to five times that of non-Aboriginal people, and there are limited health and support services. Further research is required to explore strengths and gaps of current practices.

Community care for Indigenous older people: An update.

In this brief paper, we outline some important messages in the literature pertaining to community care for Indigenous older people. Such literature has been scarce until relatively recently. These key messages are particularly important as aged care sector reforms are implemented. We highlight significant research findings concerning health, care preferences and service delivery challenges for the provision of community care for this population group. To be successful, a service needs to be relevant, and to be relevant, services need to take a community development approach in their development and ongoing management.

Contribution of university departments of rural health to rural health research: An analysis of outputs.

OBJECTIVE: To assess the research contribution of eleven University Departments of Rural Health (UDRH) which were established as a rural health workforce program in the late 1990s through analysis of peer-reviewed journal output. DESIGN AND SETTINGS: Descriptive study based on validated publications from publication output reported in annual key performance indicator (KPI) reports to the Commonwealth Department of Health, Australia. MAIN OUTCOME MEASURES: In addition to counts and the type of publications, articles were examined to assess fields of research, evidence of research collaboration, and potential for influencing policy. Funding acknowledgement was examined to provide insight into funding sources and research consultancies. RESULTS: Of the 182 peer-reviewed articles, UDRH staff members were the first and corresponding author for 45% (n = 82); most (69%, n = 126) were original research. Most publications examined included Australian data only (80%, n = 101). Over half (56%; n = 102) of the articles addressed rural health issues; Aboriginal health was the main subject in 14% (n = 26). Thirty-three articles (18%) discussed the policy implications of the research and only half (51%, n = 93) of the articles listed sources of funding. Number of authors per article ranged from 1-19, with a mean of 5 (SD = 3.2) authors per article, two-thirds of articles included authors from 2-5 universities/organisations but only 5% of articles included an author from more than one UDRH. CONCLUSIONS: Staff from UDRHs are regularly publishing peer-reviewed articles, and research productivity demonstrated cooperation with external partners. Better collaboration between UDRH staff and others may help increase the quality and value of Australian rural health research.

The (mis)matching of resources and assessed need in remote Aboriginal community aged care.

AIM: To examine processes of aged-care needs assessment for Aboriginal people in remote central Australia to assist development of appropriate models of aged care. METHOD: A qualitative study involving 11 semistructured interviews with aged-care assessors and two focus groups with Aboriginal community members. RESULTS: This paper reports four major themes concerning how needs assessments relate to realities of service delivery: cultural perspectives on aged care, context of service delivery, equity and access to services, and program (mis)alignments. CONCLUSION: Disparities exist between assessment recommendations and service availability, with a potential mismatch between Aboriginal understandings of needs, interpretations by individual assessment staff and program guidelines. Incorporating a conceptual framework, such as the International Classification of Functioning, Disability and Health, into service guidelines to ensure structured consideration of a person's holistic needs may assist, as will building the capacity of communities to provide the level and type of services required.

Nutrition and older indigenous australians: service delivery implications in remote communities. A narrative review.

OBJECTIVE: To describe the nutritional status of older Indigenous people, barriers to achieving optimal nutrition, and the effectiveness of programs aimed at improving nutrition in older Indigenous people in remote communities. METHODS: A comprehensive literature review was undertaken utilising electronic databases Scopus, CINAHL, Informit, Ovid MEDLINE, ProQuest, Web of Knowledge, PsycINFO, ATSI HealthInfoNet and Google Scholar. Grey literature was also accessed. RESULTS: Findings indicated there is a scarcity of representative data on nutritional status and risk in older Indigenous people, and nutrition support programs have not been evaluated. CONCLUSIONS: Older Indigenous people suffer from poorer overall health and higher levels of overweight and obesity, and are at increased risk of poor nutritional status and malnutrition than the general population. This risk may be higher in remote areas. More representative data are needed to determine the nutritional status of older Indigenous people, including levels of malnutrition. Support programs also need to be evaluated.

What primary health care services should residents of rural and remote Australia be able to access? A systematic review of "core" primary health care services.

BACKGROUND: There are significant health status inequalities in Australia between those people living in rural and remote locations and people living in metropolitan centres. Since almost ninety percent of the population use some form of primary health care service annually, a logical initial step in reducing the disparity in health status is to improve access to health care by specifying those primary health care services that should be considered as "core" and therefore readily available to all Australians regardless of where they live. A systematic review was undertaken to define these "core" services.Using the question "What primary health care services should residents of rural and remote Australia be able to access?", the objective of this paper is to delineate those primary health care core services that should be readily available to all regardless of geography. METHOD: A systematic review of peer-reviewed literature from established databases was undertaken. Relevant websites were also searched for grey literature. Key informants were accessed to identify other relevant reference material. All papers were assessed by at least two assessors according to agreed inclusion criteria. RESULTS: Data were extracted from 19 papers (7 papers from the peer-reviewed database search and 12 from other grey sources) which met the inclusion criteria. The 19 papers demonstrated substantial variability in both the number and nature of core services. Given this variation, the specification or synthesis of a universal set of core services proved to be a complex and arguably contentious task. Nonetheless, the different primary health care dimensions that should be met through the provision of core services were developed. In addition, the process of identifying core services provided important insights about the need to deliver these services in ways that are "fit-for-purpose" in widely differing geographic contexts. CONCLUSIONS: Defining a suite of core primary health care services is a difficult process. Such a suite should be fit-for-purpose, relevant to the context, and its development should be methodologically clear, appropriate, and evidence-based. The value of identifying core PHC services to both consumers and providers for service planning and monitoring and consequent health outcomes is paramount.

"People like numbers": a descriptive study of cognitive assessment methods in clinical practice for Aboriginal Australians in the Northern Territory.

BACKGROUND: Achieving culturally fair assessments of cognitive functioning for Aboriginal people is difficult due to a scarcity of appropriately validated tools for use with this group. As a result, some Aboriginal people with cognitive impairments may lack fair and equitable access to services. The objective of this study was to examine current clinical practice in the Northern Territory regarding cognitive assessment for Aboriginal people thereby providing some guidance for clinicians new to this practice setting. METHOD: Qualitative enquiry was used to describe practice context, reasons for assessment, and current practices in assessing cognition for Aboriginal Australians. Semi-structured interviews were conducted with 22 clinicians working with Aboriginal clients in central and northern Australia. Results pertaining to assessment methods are reported. RESULTS: A range of standardised tests were utilised with little consistency across clinical practice. Nevertheless, it was recognised that such tests bear severe limitations, requiring some modification and significant caution in their interpretation. Clinicians relied heavily on informal assessment or observations, contextual information and clinical judgement. CONCLUSIONS: Cognitive tests developed specifically for Aboriginal people are urgently needed. In the absence of appropriate, validated tests, clinicians have relied on and modified a range of standardised and informal assessments, whilst recognising the severe limitations of these. Past clinical training has not prepared clinicians adequately for assessing Aboriginal clients, and experience and clinical judgment were considered crucial for fair interpretation of test scores. Interpretation guidelines may assist inexperienced clinicians to consider whether they are achieving fair assessments of cognition for Aboriginal clients.

'We don't have anyone with dementia here': a case for better intersectoral collaboration for remote Indigenous clients with dementia.

OBJECTIVE: This paper reports on findings related to intersectoral collaboration stemming from an evaluation of a dementia awareness resource for use in remote Aboriginal communities*. The resource includes a DVD in English and three (3) Aboriginal languages of the Northern Territory. DESIGN: A qualitative evaluation was conducted in four Northern Territory Aboriginal communities/organisations where the resource had been implemented by external dementia educators. The method included five focus groups with Indigenous aged care workers, community members and aged care service users (n = 26), individual interviews with health care professionals and service coordinators (n = 5), and observation. Data were analysed thematically. RESULTS: Specific findings relating to intersectoral collaboration as a key enabling factor of effective dementia awareness and care are discussed in this paper. In addition to context variables such as understaffing and under-resourcing, there might be a lack of knowledge or interest on the part of some health practitioners concerning clients with dementia within remote communities. CONCLUSION: Dementia awareness in remote communities needs to be tackled from a 'whole system' perspective and not be the exclusive domain of the aged care services. Strategies that increase the critical mass of informed caregivers as well as health professionals will contribute to better services.

'Gotta be sit down and worked out together': views of Aboriginal caregivers and service providers on ways to improve dementia care for Aboriginal Australians.

INTRODUCTION: Dementia is five-fold more prevalent among Aboriginal than non-Aboriginal Australians. Despite this, the quality of care available to people living with dementia in remote Aboriginal communities is poor. The objective of this study was to determine ways to overcome factors affecting the successful delivery of services to Aboriginal people with dementia living in remote communities, and to their families and communities. METHODS: This qualitative research took place in the Kimberley Region of Western Australia. Data collection occurred in three stages: (1) interviews with service providers to identify the services available; (2) interviews with the caregivers of Aboriginal people living with dementia and community-based care workers; and (3) focus groups with community representatives and community care staff. Each stage was concluded when no new themes emerged. At each stage the transcribed information was analysed and joint interpretation identified common themes. RESULTS: In total, 42 service providers, 31 caregivers and community-based care workers were interviewed and 3 focus groups were conducted. Obstacles to accessing quality care were mentioned and recommendations on ways to improve care were made. The key themes that emerged were caregiver role, perspectives of dementia, community and culturally-appropriate care, workforce, education and training, issues affecting remote communities and service issues. Detailed information on how each theme affects the successful delivery of dementia care is provided. CONCLUSIONS: These research findings indicate that people living with dementia and their caregivers in remote Aboriginal communities are struggling to cope. They are requesting and require better community care. Implementing a culturally safe model of dementia care for remote Aboriginal communities that encompasses the recommendations made and builds on the strengths of the communities could potentially deliver the required improvements to dementia care for this population.

Assessment staff in home and community care services: issues of learning and professional identity in Australia.

Home and Community Care (HACC) is a funding programme of the Commonwealth and State governments of Australia which supports the vast majority of community care services. Gaining access to basic community care services is via an assessment process undertaken by workers in roles that may be comprised partially or solely of assessment and care planning tasks. Arguably, the role of assessor in the HACC programme has become increasingly professionalised in recent years, and the complexity and demands of the role have increased. However, to date, little information has been available about the composition of this workforce, making initiatives to improve practice difficult to plan and implement. This paper reports findings of research from Victoria in which interviews were conducted with a range of key informants, and staff employed in client assessment roles. Results indicate considerable diversity on issues such as: the professional backgrounds of HACC assessment staff; the education, training and support they receive; how they learn their role; and what they draw upon to assist decision-making. A significant theme to emerge is that the nature of their practice derives substantially from the local contexts in which they work. In the absence of a single profession or narrative that guides their practice, they draw from a diverse range of knowledge sources. The significance of the workplace as a site of professional learning, which may provide the basis for the development of a new qualification for this workforce, is highlighted, as is the need for a professional body for this group of workers.

Assessment of indigenous older peoples' needs for home and community care in remote Central Australia.

The Home and Community Care (HACC) program in Australia provides services which supports older people to live at home. Individual HACC organisations are generally responsible for initial assessment of eligibility and need of clients presenting for services. This paper reports on a project which aimed to develop an understanding of the various approaches to assessment of client needs in Central Australia. The majority of clients in this geographical area are indigenous. The project was initiated in recognition of the primary importance of assessment in determining service access and service delivery and of the particular challenges faced by service providers in remote areas. This paper discusses key project findings including the client group and services provided, initial needs assessment and care planning processes. Evident inconsistencies in practice reflect a variety of complex contextual factors. Staff in remote areas have an inadequate knowledge base to draw upon to assist them with assessment and care planning decisions, and further research and professional development is required.