ABSTRACT
Place and health are deeply interconnected for Indigenous people, and place-based services have been established to better meet people's needs. The meaning of place, however, remains difficult to define, an issue compounded by non-Indigenous settler attempts to erase people's association with place. This paper argues that we must understand place as something more than a geographical locality, and consider the histories, experiences and feelings that connect people to place in the south coast of New South Wales (NSW), Australia. The paper focuses on the role of Aboriginal Community Controlled Organisations (ACCOs) as place-based entities which deliver a range of health and social services to local Aboriginal communities across Australia. This study was undertaken during a period of crisis when places and people's capacity to remain connected to them was perilous due to the 2019/20 bushfires, named in the media as the Black Summer Bushfires. The experience of living through this disastrous period elevated the importance of ACCOs and their unique and deep engagement with the communities they serve.
ABSTRACT
OBJECTIVES: This study aimed to determine the proportion of older Aboriginal and Torres Strait Islander peoples participating in cultural events and activities and determine the demographic and sociocultural characteristics associated with participation. METHODS: The Australian Bureau of Statistics National Aboriginal and Torres Strait Islander Social Survey (2014-2015) was used to measure the prevalence of participation in cultural events and activities. Multivariate logistic regression models were used to measure associations. Sociocultural factors were selected by matching survey items to the 12 sociocultural factors described in the Good Spirit Good Life Framework, a culturally validated quality-of-life tool for older people. RESULTS: The majority (62.0%) of survey respondents 45 years and older participated in cultural events (e.g., ceremonies, funerals/sorry business, NAIDOC week activities, sports carnivals, festivals/carnivals) or were involved in organizations. Many (58.5%) also participated in activities (e.g., fishing, hunting, gathering wild plants/berries, arts/crafts, music/dance/theater, writing/telling of stories). In regression models including demographic and cultural variables, participation in cultural events was highest among people living remotely (odds ratio [OR]â =â 2.71), reporting recognition of homelands (ORâ =â 2.39), identifying with a cultural group (ORâ =â 3.56), and those reporting having a say in their communities (ORâ =â 1.57), with similar odds seen for participation in activities. Participation was inversely proportional to increasing age, with a greater proportion of females participating in events and males in activities. DISCUSSION: The social lives of older Aboriginal and Torres Strait Islander people were characterized by widespread participation in cultural events and activities. These findings provide important insights into services as they support older people to live a good life.
Subject(s)
Australian Aboriginal and Torres Strait Islander Peoples , Social Participation , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Australia , Culture , Social Participation/psychologyABSTRACT
BACKGROUND: Aged-care programs that are based in First Nations worldviews are believed to translate to improved quality of life for First Nations Elders. First Nations perspectives of health and well-being incorporates social and cultural determinants in addition to traditional Western biomedical approaches. This is exemplified by the Good Spirit Good Life (GSGL) framework, which comprises 12 strength-based factors determined by First Nations Elders as constituting culturally appropriate ageing. Our objective was to conduct a systematic review of existing aged care models of practice to determine the degree of alignment with the GSGL framework. Recommendations of the national Australian Royal Commission into Aged Care Quality and Safety informed this work. METHODS: We conducted a systematic search of academic and grey literature in the PubMed, Scopus, Ovid Embase, and Informit online databases. Inclusion criteria comprised English language, original research describing the implementation of First Nations culturally appropriate aged care models, published before August 2022. Research that was not focused on First Nations Elders' perspectives or quality of life was excluded. We subsequently identified, systematically assessed, and thematically analyzed 16 articles. We assessed the quality of included articles using the Aboriginal and Torres Strait Islander Quality Assessment Tool (ATSIQAT), and the Joanna Briggs Institute (JBI) critical appraisal tool for qualitative research. RESULTS: Most studies were of medium to high quality, while demonstrating strong alignment with the 12 GSGL factors. Nine of the included studies detailed whole service Models of care while 7 studies described a single program or service element. Thematic analysis of included studies yielded 9 enablers and barriers to implementing models of care. CONCLUSIONS: Best-practice First Nations aged care requires a decolonizing approach. Programs with strong adherence to the 12 GSGL factors are likely to improve Elders' quality of life.
Subject(s)
Australian Aboriginal and Torres Strait Islander Peoples , Health Services for the Aged , Quality of Life , Aged , Humans , Australia/epidemiology , Qualitative Research , Quality of Health CareABSTRACT
During 2013-2017, the mortality rate ratio for rheumatic heart disease among Indigenous versus non-Indigenous persons in Australia was 15.9, reflecting health inequity. Using excess mortality methods, we found that deaths associated with rheumatic heart disease among Indigenous Australians were probably substantially undercounted, affecting accuracy of calculations based solely on Australian Bureau of Statistics data.
Subject(s)
Rheumatic Heart Disease , Humans , Australia/epidemiology , Rheumatic Heart Disease/mortality , Health InequitiesABSTRACT
BACKGROUND: Effective communication between health care clinicians and Aboriginal patients is critical to delivering high quality, accessible, culturally secure health care. Despite this, ineffective communication is a well-documented barrier, and few studies have reported interventions to improve communication. Clinical Yarning is a patient centred communication framework for Aboriginal health care. Building on this framework, this study reports the development and evaluation of a Clinical Yarning education program. METHODS: A Clinical Yarning education program was developed, underpinned by the principles of cultural security and adult learning, informed by a behavioural skills approach. The program was delivered in five health/education settings in one rural Western Australian region. Mixed-methods evaluation included a retrospective pre/post questionnaire to ascertain changes in participants' knowledge, confidence, competence and their perceptions about communication in Aboriginal health care, and the program. Qualitative semi-structured interviews were undertaken with health service managers who oversaw each health care setting and who had not participated in the education program, to explore perceptions about the program and implementation considerations. RESULTS: Twenty-eight health care clinicians and six students completed training and the evaluation survey. There were significant improvements in self-rated communication skills, ability, confidence, knowledge, and perceived importance of communication training from pre to post-program. Participants strongly recommended the program to others, and most commonly valued the simulation/interactive learning activities. Health service managers acknowledged the limitations in most existing cultural training, and felt Clinical Yarning addressed a need; both the concept of Clinical Yarning and the education program provided were valued. Considerations identified for future implementation included: building multilevel partnerships within health services, offering alternate training options such as eLearning or train-the-trainer approaches, and integrating into existing development programs. Workforce transiency and availability were a barrier, particularly in remote areas. CONCLUSIONS: This study offers preliminary support for the Clinical Yarning education program and provides a foundation for further development of this training approach. A future priority is implementation research to investigate the impact of the Clinical Yarning education program on health care and patient outcomes.
Subject(s)
Health Services, Indigenous , Adult , Humans , Australia , Communication , Delivery of Health Care , Pilot Projects , Retrospective Studies , Australian Aboriginal and Torres Strait Islander Peoples , Western AustraliaABSTRACT
Indigenous perspectives of quality of life (QoL) are different to that of non-Indigenous populations. Determining how to identify and value what is important to QoL for people from diverse cultural backgrounds is crucial for assessing effective outcomes for quality assessment and health economic evaluation to guide evidence-based decision making. This is particularly important for older Indigenous people who have complex care and support needs within health and aged-care systems. This scoping review aims to assess the existing literature in this field by firstly identifying preference based instruments that have been applied with older Indigenous peoples and secondly, exploring the extent to which existing preference based instruments applied with older Indigenous peoples encompass older Indigenous peoples QoL perspectives in their design and application. The inclusion criteria for the review were studies using preference based QoL instruments with an Indigenous population where the cohort was aged 50 years or over. This resulted in the critical analysis of 12 studies. The review identified that preference based QoL instruments have rarely been applied to date with older Indigenous populations with most instruments found to be designed for non-Indigenous adults. Typically, instruments have not incorporated Indigenous worldviews of QoL into either the content of the descriptive system or the elicitation techniques and corresponding value sets generated. To encapsulate Indigenous cultural perspectives accurately in economic evaluation, further research is required as to how QoL domains in preference based instruments for Indigenous peoples can be reflective of Indigenous perspectives. It is imperative that the QoL preferences of older Indigenous peoples are adequately captured within preference based QoL instruments applied with this population.
Subject(s)
Culture , Quality of Life , Adult , Humans , Indigenous Peoples , Population GroupsABSTRACT
INTRODUCTION: Dementia is highly prevalent in older Aboriginal Australians, with several modifiable risk factors. Currently, there is limited evidence on how to prevent cognitive decline in Aboriginal Australians. METHODS: Based on our Theory of Change (ToC) framework, we co-developed the Dementia risk management and prevention program for Aboriginal Australians (DAMPAA) aged over 45 years in partnership with Aboriginal community-controlled organizations (ACCOs) and Elders. Qualitative data were collected through ACCO staff workshops, Elders yarning, and governance groups to inform the protocol. Additionally, we conducted a small pilot study. RESULTS: Expected DAMPAA ToC outcomes are: (1) improved daily function, (2) better cardiovascular risk management, (3) falls reduction, (4) improved quality of life, and (5) reduced cognitive decline. Attendance enablers are social interaction, environment, exercise type/level, and logistics. DISCUSSION: Findings suggest that ToC is an effective collaborative approach for co-designing Aboriginal health programs.
Subject(s)
Dementia , Health Services, Indigenous , Aged , Humans , Australia , Australian Aboriginal and Torres Strait Islander Peoples , Dementia/prevention & control , Pilot Projects , Quality of Life , Risk Management , Middle AgedABSTRACT
OBJECTIVES: To generate contemporary age-specific mortality rates for Indigenous and non-Indigenous Australians aged <65 years who died from rheumatic heart disease (RHD) between 2013 and 2017, and to ascertain the underlying causes of death (COD) of a prevalent RHD cohort aged <65 years who died during the same period. METHODS: For this retrospective, cross-sectional epidemiological study, Australian RHD deaths for 2013-2017 were investigated by first, mortality rates generated using Australian Bureau of Statistics death registrations where RHD was a coded COD, and second COD analyses of death records for a prevalent RHD cohort identified from RHD register and hospitalisations. All analyses were undertaken by Indigenous status and age group (0-24, 25-44, 45-64 years). RESULTS: Age-specific RHD mortality rates per 100 000 were 0.32, 2.63 and 7.41 among Indigenous 0-24, 25-44 and 45-64 year olds, respectively, and the age-standardised mortality ratio (Indigenous vs non-Indigenous 0-64 year olds) was 14.0. Within the prevalent cohort who died (n=726), RHD was the underlying COD in 15.0% of all deaths, increasing to 24.6% when RHD was included as associated COD. However, other cardiovascular and non-cardiovascular conditions were the underlying COD in 34% and 43% respectively. CONCLUSION: Premature mortality in people with RHD aged <65 years has approximately halved in Australia since 1997-2005, most notably among younger Indigenous people. Mortality rates based solely on underlying COD potentially underestimates true RHD mortality burden. Further strategies are required to reduce the high Indigenous to non-Indigenous mortality rate disparity, in addition to optimising major comorbidities that contribute to non-RHD mortality.
Subject(s)
Rheumatic Heart Disease , Humans , Australia/epidemiology , Cross-Sectional Studies , Retrospective Studies , Rheumatic Heart Disease/mortality , Australian Aboriginal and Torres Strait Islander Peoples , Infant, Newborn , Infant , Child, Preschool , Child , Adolescent , Young Adult , Adult , Middle AgedABSTRACT
OBJECTIVE: The aim of this study was to understand and describe the lived experience of Aboriginal and Torres Strait Islander people with osteoarthritis. METHODS: Qualitative study guided by cultural security, which ensures that research is conducted in a way that will not compromise the cultural values, beliefs, and expectations of Aboriginal and Torres Strait Islander people. Participants were purposively sampled through the networks of project staff. Research yarns (a cultural form of conversation used as a data gathering tool) were conducted with 25 Aboriginal and Torres Strait Islander adults with self-reported osteoarthritis in Western Australia and Victoria, Australia. Data were analyzed using a framework approach and presented through composite storytelling (hypothetical stories representing an amalgam of participants' experiences). RESULTS: Two composite stories were constructed to reflect themes relating to beliefs and knowledge, impact, coping, and health care experiences. Common beliefs held by participants were that osteoarthritis is caused by previous physically active lifestyles. Many participants feared for their future, increasing disability and needing a wheelchair. Pain associated with osteoarthritis impacted daily activities, sleep, work, family, and social life and cultural activities. Multidimensional impacts were often experienced within complex health or life circumstances and associated with increased anxiety and depression. Most participants reported negative health care experiences, characterized by poor patient-provider communication. CONCLUSION: Our findings highlight that osteoarthritis is a multidimensional issue for Aboriginal and Torres Strait Islander people that permeates all aspects of life and highlights the need for integrated, multidisciplinary care that is culturally informed and individualized to patient need.
Subject(s)
Australian Aboriginal and Torres Strait Islander Peoples , Osteoarthritis , Adult , Humans , Native Hawaiian or Other Pacific Islander , Victoria , Indigenous Peoples , Osteoarthritis/diagnosis , Osteoarthritis/therapyABSTRACT
OBJECTIVE: Improving the quality of life (QoL) of older people is a key priority for governments, clinicians, researchers and service providers worldwide. However, the lack of culturally appropriate QoL tools for First Nations people is a major barrier to such efforts. The purpose of this study was to evaluate the psychometric properties of the Good Spirit, Good Life (GSGL) QoL tool for older Aboriginal Australians. METHODS: One hundred and twenty older Aboriginal people living in Perth and Melbourne, Australia, were administered the GSGL tool, along with several other instruments assessing cognition (KICA-Cog), depression (KICA-Dep), anxiety (GAI-SF), health and well-being (EQ-5D-5L and ICECAP-O) and resilience (ARRQ-25). Associations between these instruments and the GSGL tool were explored to determine concurrent and known-groups validity. Internal consistency was assessed with split-half reliability and Cronbach's alpha. Exploratory factor analysis was performed to investigate construct validity. RESULTS: GSGL scores were positively correlated with ICECAP-O and ARRQ-25 scores, and negatively correlated with EQ-5D-5L score. GSGL scores differed significantly between participants with a probable anxiety disorder or depression, but not those with cognitive impairment. The Spearman-Brown prophecy estimate was 0.83 and Cronbach's alpha was 0.75. Principal component analysis identified two factors, which were labelled foundation and external. CONCLUSIONS: The GSGL tool is a valid tool to assess quality of life in older Aboriginal Australians. The tool demonstrates acceptable convergent, concurrent and known-groups validity. It was co-designed at all stages with older Aboriginal people contributing to its strong face and content validity.
Subject(s)
Australian Aboriginal and Torres Strait Islander Peoples , Mental Health , Quality of Life , Aged , Humans , Australia , Australian Aboriginal and Torres Strait Islander Peoples/psychology , Quality of Life/psychology , Reproducibility of Results , Surveys and Questionnaires , Psychometrics , Cultural Competency , Mental Health/ethnology , Mental Health/statistics & numerical dataABSTRACT
BACKGROUND: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) disproportionately affect Aboriginal and Torres Strait Islander people in Australia, with devastating impacts on morbidity, mortality and community wellbeing. Research suggests that general practitioners and primary care staff perceive insurmountable barriers to improving clinical outcomes, including the need for systemic change outside their scope of practice. OBJECTIVE: The aim of this article is to identify constructive, micro-level strategies that primary healthcare clinicians can consider, adopt and sustainably use to improve care for people with ARF and RHD in their routine clinical practice. DISCUSSION: Through skilled clinical care, reflection and culturally safe practices, individual primary healthcare clinicians have substantial capacity to improve care experiences and outcomes for Aboriginal and Torres Strait Islander people and communities affected by ARF and RHD.
Subject(s)
General Practitioners , Rheumatic Fever , Rheumatic Heart Disease , Humans , Rheumatic Heart Disease/therapy , Rheumatic Fever/therapy , Australia , Primary Health CareABSTRACT
BACKGROUND: Indigenous academics have advocated for the use and validity of Indigenous methodologies and methods to centre Indigenous ways of knowing, being and doing in research. Yarning is the most reported Indigenous method used in Aboriginal and Torres Strait Islander qualitative health research. Despite this, there has been no critical analysis of how Yarning methods are applied to research conduct and particularly how they privilege Indigenous peoples. OBJECTIVE: To investigate how researchers are applying Yarning method to health research and examine the role of Aboriginal and Torres Strait Islander researchers in the Yarning process as reported in health publications. DESIGN: Narrative review of qualitative studies. DATA SOURCES: Lowitja Institute LitSearch January 2008 to December 2021 to access all literature reporting on Aboriginal and Torres Strait Islander health research in the PubMed database. A subset of extracted data was used for this review to focus on qualitative publications that reported using Yarning methods. METHODS: Thematic analysis was conducted using hybrid of inductive and deductive coding. Initial analysis involved independent coding by two authors, with checking by a third member. Once codes were developed and agreed, the remaining publications were coded and checked by a third team member. RESULTS: Forty-six publications were included for review. Yarning was considered a culturally safe data collection process that privileges Indigenous knowledge systems. Details of the Yarning processes and team positioning were vague. Some publications offered a more comprehensive description of the research team, positioning and demonstrated reflexive practice. Training and experience in both qualitative and Indigenous methods were often not reported. Only 11 publications reported being Aboriginal and/or Torres Strait Islander led. Half the publications reported Aboriginal and Torres Strait Islander involvement in data collection, and 24 reported involvement in analysis. Details regarding the role and involvement of study reference or advisory groups were limited. CONCLUSION: Aboriginal and Torres Strait Islander people should be at the forefront of Indigenous research. While Yarning method has been identified as a legitimate research method to decolonising research practice, it must be followed and reported accurately. Researcher reflexivity and positioning, and Aboriginal and Torres Strait Islander ownership, stewardship and custodianship of data collected were significantly under detailed in the publications included in our review. Journals and other establishments should review their processes to ensure necessary details are reported in publications and engage Indigenous Editors and peer reviewers to uphold respectful, reciprocal, responsible and ethical research practice.
Subject(s)
Indigenous Peoples , Native Hawaiian or Other Pacific Islander , Humans , Qualitative Research , Racial Groups , Research DesignABSTRACT
BACKGROUND: Despite bearing a higher burden of osteoarthritis, little research has examined disparities in the access, utilisation and surgical outcomes associated with total joint replacement (TJR) among Aboriginal and Torres Strait Islander people. METHODS: We conducted a retrospective cohort study to compare the sociodemographic and clinical characteristics of all Aboriginal and Torres Strait Islander and non-Aboriginal patients who underwent primary hip and knee replacement at St Vincent's Hospital Melbourne between 1996 and 2019. RESULTS: A total of 10 277 primary total knee or hip replacements were performed in the 1996-2019 study period, of which 49 (0.5%) patients identified as either Aboriginal and/or Torres Strait Islander. Aboriginal and Torres Strait Islander patients were younger (61.7 ± 11.8 vs. 68.3 ± 10.3 years; P < 0.001), recorded higher Body Mass Index scores (median (IQR), 36.0 (29.5-41.4) vs. 30.8 (27.0-35.3); P < 0.001) and were more likely to experience multiple co-morbidities at the time of surgery. Despite these findings, Aboriginal and Torres Strait Islander patients did not experience higher complication rates and experienced comparable, clinically meaningful quality of life improvements 12-months post-surgery. CONCLUSIONS: TJR appears to be a valuable treatment option for Aboriginal and Torres Strait Islander people with end-stage osteoarthritis. Our study was limited by the small number of procedures conducted in patients who identify as Aboriginal and Torres Strait Islander. Further research is needed to understand why uptake of TJR by Aboriginal and Torres Strait Islander people is low.
Subject(s)
Arthroplasty, Replacement , Health Services, Indigenous , Osteoarthritis , Humans , Native Hawaiian or Other Pacific Islander , Osteoarthritis/surgery , Quality of Life , Retrospective StudiesABSTRACT
BACKGROUND: Community engagement or community involvement in Aboriginal health research is a process that involves partnering, collaborating and involving Aboriginal and Torres Strait Islander people or potential research participants to empower them to have a say in how research with Aboriginal communities is conducted. In the context of Aboriginal health, this is particularly important so that researchers can respond to the priorities of the community under study and conduct research in a way that is respectful of Aboriginal cultural values and beliefs. One approach to incorporating the principals of community engagement and to ensure cultural oversight and guidance to projects is to engage a community reference group. The aim of this study was to describe the process of establishing an Aboriginal community reference group and terms of reference. The community reference group was established to guide the research activities of a newly formed research collaboration aiming to to develop osteoarthritis care that meets the needs of Aboriginal and Torres Strait Islander people in Australia. METHODS: Adopting a Participatory Action Research approach, this two-phase study was conducted in Victoria, Australia. In phase one, semi-structured research yarns (a cultural form of conversation used as a data gathering tool) were conducted collaboratively by Aboriginal and non-Aboriginal co-investigators to explore Aboriginal health stakeholder perspectives on establishing a community reference group and terms of reference. In phase two, recommendations in phase one were identified to invite members to participate in the community reference group and to ratify the terms of reference through a focus group. Data were analyzed using a framework analysis approach. RESULTS: Thirteen people (eight female, four male) participated in phase one. Participants represented diverse professional backgrounds including physiotherapy, nursing, general practice, health services management, hospital liaison, cultural safety education, health research and the arts. Three themes were identified in phase one; Recruitment and Representation (trust and relationships, in-house call-outs, broad-spectrum expertise and Aboriginal majority); Purpose (community engagement, research steering, knowledge dissemination and advocacy) and; Function and Logistics (frequency and format of meetings, size of group, roles and responsibilities, authority, communication and dissemination). In phase two, six Aboriginal people were invited to become members of the community reference group who recommended changes which were incorporated into the seven domains of the terms of reference. CONCLUSION: The findings of this study are captured in a 10-step framework which describes practical strategies for establishing a community reference group and terms of reference in Aboriginal health research.
Community engagement or community involvement in Aboriginal health research is a process that involves partnering with Aboriginal and Torres Strait Islander people or potential research participants to empower them to have a say in how research with Aboriginal communities is carried out. In the context of Aboriginal health, this is particularly important so that researchers can respond to the priorities of the community and conduct research in a way that respectful of Aboriginal cultural values and beliefs. One approach to community engagement in research is to form a community reference group to provide input to the research project. Although using a community reference group is considered to be an effective way to involve community members in research, often there are practical challenges in setting up and sustaining such a group. In this paper, we set out to describe an approach used to set up a community reference group for a new Aboriginal health research project exploring joint pain in Aboriginal and Torres Strait Islander people. This involved interviewing 13 health professionals and researchers (12 who identified as Aboriginal and one who identified as Aboriginal and Torres Strait Islander) about how to best go about setting up a community reference group. We used recommendations from these participants to inform who we approached to be members of the group and how the group would function. In describing the process we used to establish a community reference group, we were able to design a 10-step practical guide which may help other research groups who are looking to conduct new, ethical Aboriginal health research projects.
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OBJECTIVE: To examine the views of senior health system knowledge holders, including Aboriginal experts, regarding the spaces where elimination strategies for rheumatic heart disease take place: Aboriginal and Torres Strait Islander ways of knowing, being and doing; and biomedical healthcare models. We aimed to support the implementation of the RHD Endgame Strategy by providing some of the 'how'. METHODS: In-depth interviews were undertaken with 23 participants. The design of the interview questions and analysis of the data used strengths-based approaches as directed by Aboriginal researchers. RESULTS: Given the dominance of the biomedical worldview, and the complex trajectory of RHD, there is significant tension in the intersection of worldviews. Tensions that limit productive dialogue are juxtaposed with suggestions on how to reduce tension through reflexivity, power shifting and endorsing Aboriginal leadership and governance. Evidence supported cultural safety for RHD care, prevention and elimination as the key action. CONCLUSIONS: Recommendations include addressing power imbalances between dominant and minority populations throughout the health system; reform that both supports and is supported by Non-Indigenous and Aboriginal and Torres Strait Islander leadership. IMPLICATIONS FOR PUBLIC HEALTH: Increased understanding of and support for Indigenous leadership and cultural safety will enable implementation of the new RHD strategy.
Subject(s)
Health Services, Indigenous , Rheumatic Heart Disease , Australia , Delivery of Health Care , Humans , Indigenous Peoples , Native Hawaiian or Other Pacific Islander , Rheumatic Heart Disease/prevention & controlABSTRACT
Rheumatic heart disease (RHD) significantly impacts the lives of First Nations Australians. Failure to eliminate RHD is in part attributed to healthcare strategies that fail to understand the lived experience of RHD. To rectify this, a PhD study was undertaken in the Northern Territory (NT) of Australia, combining Aboriginal ways of knowing, being and doing with interviews (24 participants from clinical and community settings) and participant observation to privilege Aboriginal voices, including the interpretations and experiences of Aboriginal co-researchers (described in the adjunct article). During analysis, Aboriginal co-researchers identified three interwoven themes: maintaining good feelings; creating clear understanding (from good information); and choosing a good djalkiri (path). These affirm a worldview that prioritises relationships, positive emotions and the wellbeing of family/community. The findings demonstrate the inter-connectedness of knowledge, choice and behaviour that become increasingly complex in stressful and traumatic health, socioeconomic, political, historical and cultural contexts. Not previously heard in the RHD domain, the findings reveal fundamental differences between Aboriginal and biomedical worldviews contributing to the failure of current approaches to communicating health messages. Mitigating this, Aboriginal co-researchers provided targeted recommendations for culturally responsive health encounters, including: communicating to create positive emotions; building trust; and providing family and community data and health messages (rather than individualistic).
Subject(s)
Health Services, Indigenous , Rheumatic Heart Disease , Humans , Indigenous Peoples , Native Hawaiian or Other Pacific Islander , Northern TerritoryABSTRACT
Research remains a site of struggle for First Nations peoples globally. Biomedical research often reinforces existing power structures, perpetuating ongoing colonisation by dominating research priorities, resource allocation, policies, and services. Addressing systemic health inequities requires decolonising methodologies to facilitate new understandings and approaches. These methodologies promote a creative tension and productive intercultural dialogue between First Nations and Western epistemologies. Concurrently, the potential of critical theory, social science, and community participatory action research approaches to effectively prioritise First Nations peoples' lived experience within the biomedical worldview is increasingly recognised. This article describes learnings regarding research methods that enable a better understanding of the lived experience of rheumatic heart disease-an intractable, potent marker of health inequity for First Nations Australians, requiring long-term engagement in the troubled intersection between Indigenist and biomedical worldviews. Working with YolÅu (Aboriginal) co-researchers from remote Northern Territory (Australia), the concept of ganma (turbulent co-mingling of salt and fresh water) was foundational for understanding and applying relationality (gurrutu), deep listening (nhina, nhäma ga Åäma), and the use of metaphors-approaches that strengthen productive dialogue, described by YolÅu co-researchers as weaving a 'mat we can all sit on'. The research results are reported in a subsequent article.
Subject(s)
Health Services, Indigenous , Rheumatic Heart Disease , Health Services Research , Humans , Native Hawaiian or Other Pacific Islander , Northern Territory , Qualitative ResearchABSTRACT
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.
Subject(s)
Caregivers , Population Groups , Adult , Aged , Child , Empowerment , Family , Female , Humans , Middle Aged , Racial Groups , Young AdultABSTRACT
In common with colonized Indigenous people worldwide, many Australian Aboriginal people experience inequitable health outcomes. While the commitment and advocacy of researchers and health practitioners has resulted in many notable improvements in policy and practice, systemic and structural impediments continue to restrain widespread gains in addressing Indigenous health injustices. We take Rheumatic Heart Disease (RHD), a potent marker of extreme health inequity, as a case study, and critically examine RHD practitioners' perspectives regarding the factors that need to be addressed to improve RHD prevention and care. This study is an important explanatory component of a broader study to inform new clinical practices, and health system strategies and policies to reduce RHD. A decolonising, critical medical anthropology (CMA) analysis of findings from 22 RHD practitioner in-depth interviews conducted in May 2016 revealed both practitioners' perceptions of health system shortcomings and a sense of hopelessness and powerlessness to transform existing health system inequities, the negative impacts of which were subsequently confirmed in a separate study of RHD patients' lived realities. We reveal how biomedical dominance, normalized deficit discourses and systemic racism influence the current policy and practice landscape, narrowing the intercultural space for productive dialogue and reinforcing the conditions that cause disease. To counter biomedical approaches that contribute to existing health inequities in health care, we recommend localized, strength-based, community-led research projects focused on actions that use critical decolonizing social science approaches to achieve system change. We demonstrate the importance of integrating biological and social sciences approaches in research, education/training, and practice to: 1) be guided by Indigenous strengths, knowledges and worldview, and 2) adopt a critical reflexive stance to examine systems, structures and practices. Such an approach facilitates productive cross-cultural dialogue and social transformation; providing direction and hope to practitioners, enhancing their knowledge, skills and capacity and improving Aboriginal health outcomes.