Weaving yarns : the lived experience of Indigenous Australians with adult-onset disability in Brisbane

Indigenous Australians have lower levels of health than mainstream Australians and (as far as statistics are able to indicate) higher levels of disability, yet there is little information on Indigenous social and cultural constructions of disability or the Indigenous experience of disability. This research seeks to address these gaps by using an ethnographic approach, couched within a critical medical anthropology (CMA) framework and using the “three bodies” approach, to study the lived experience of urban Indigenous people with an adult-onset disability. The research approach takes account of the debate about the legitimacy of research into Indigenous Australians, Foucault‟s governmentality, and the arguments for different models of disability. The possibility of a cultural model of disability is raised. After a series of initial interviews with contacts who were primarily service providers, more detailed ethnographic research was conducted with three Indigenous women in their homes and with four groups of Indigenous women and men at an Indigenous respite centre. The research involved multiple visits over a period extending more than two years, and the establishment of relationships with all participants. An iterative inductive approach utilising constant comparison (i.e. a form of grounded theory) was adopted, enabling the generation and testing of working hypotheses. The findings point to the lack of an Indigenous construct of disability, related to the holistic construction of health among Indigenous Australians. Shame emerges as a factor which affects the way that Indigenous Australians respond to disability, and which operates in apparent contradiction to expectations of community support. Aspects of shame relate to governmentality, suggesting that self-disciplinary mechanisms have been taken up and support the more obvious exertion of government power. A key finding is the strength of Indigenous identity above and beyond other forms of identification, e.g. as a person with a disability, expressed in forms of resistance by individuals and service providers to the categories and procedures of the mainstream. The implications of a holistic construction of health are discussed in relation to the use of CMA, the interpretation of the “three bodies”, governmentality and resistance. The explanatory value of the concept of sympatricity is discussed, as is the potential value of a cultural model of disability which takes into account the cultural politics of a defiant Indigenous identity.

Deadly Choices or deadly choices? An ethnography of health promotion practice with Indigenous Australians

This presentation provides an overview of my PhD research, which links with the Institute for Urban Indigenous Health (IUIH) and its Deadly Choices team. In the presentation, I introduce my critique of mainstream health promotion practice, highlighting the need for decolonisation of health promotion and the opportunity to learn from health promotion practice that acknowledges Indigenous knowledge, skills and perspectives. I also overview my ethnographic research methodology, which enabled me to be a participant observer with IUIH health promotion practitioners. I canvas some of my findings to date, according to two key areas: the unique way Deadly Choices applies leadership as its model of health promotion practice; and the range of innovative engagement strategies they employed, including the Deadly Choices brand and social media. I conclude by highlighting the counter-narrative and contrast that Deadly Choices provides compared to traditional health promotion approaches with Indigenous people, and identify lessons for decolonisation of heath promotion more broadly.

Navigating Grounded Theory:A critical and reflective response to the challenges of using grounded theory in an education PhD

This paper offers a critical reflection upon the use of a grounded theory approach within a doctoral study. As well as providing an outline of grounded theory, it begins by noting the existence of some powerful critiques of a grounded theory approach, in particular around the key concepts of ‘theory’, ‘discovery’ and ‘ground’. It is argued that, in some cases, grounded theory struggles to counter these challenges, especially in its ‘purist’ forms. However, with reference to research carried out as part of a PhD study of sharing education in Northern Ireland which employed a grounded theory approach, a case is made for an open and critical grounded theory based upon three principles: pragmatism; research as practice; and reflexivity. It is concluded that a reasonable case can be made for grounded theory where: grounded theory researchers maintain a balance between belonging to and critique of the grounded theory community; where there is an emphasis upon theorizing rather than the discovery of theory; and where the strengths of grounded theory as 'practice' and 'craft' are maximised.

Grounded theory and leadership research: a critical realist perspective

The methodology of grounded theory has great potential to contribute to our understanding of leadership within particular substantive contexts. However, our notions of good science might constrain these contributions. We argue that for grounded theorists a tension might exist between a desire to create a contextualised theory of leadership and a desire for scientifically justified issues of validity and generalizable theory. We also explore how the outcome of grounded theory research can create a dissonance between theories that resonate with the reality they are designed to explore, and the theories that resonate with a particular yet dominant 'scientific' approach in the field of leadership studies - the philosophy of science commonly known as positivism. We examine the opportunities provided by an alternative philosophy of science, that of critical realism. We explore how conducting grounded theory research informed by critical realism might strengthen researchers' confidence to place emphasis on an understanding and explanation of contextualised leadership as a scientific goal, rather than the scientific goal of generalization through empirical replication. Two published accounts of grounded theory are critiqued candidly to help emphasise our arguments. We conclude by suggesting how critical realism can help shape and enhance grounded theory research into the phenomenon of leadership. © 2010.

Negotiating disability and colonisation : the lived experience of Indigenous Australians with a disability

Disability among Indigenous Australians lies at a nexus between the ongoing impact of European settlement from 1788 and the social effects of living with a disability. Colonisation, with its political, social, economic and cultural concomitants, continues to impact on Indigenous experience, extending to the institutions and services concerned with disability. There is little attention paid to Indigenous Australian disability in general, and the need to decolonise disability has recently been emphasised. Ethnographic research in Brisbane, Australia among Indigenous people with a disability (mostly related to diabetes) confirms the ongoing impact of colonisation. While this experience pervades all aspects of their lives, it also moderates their experience of living with a disability in positive ways. However, while individuals can negotiate their personal experience of disability, the decolonisation of disability services presents challenges that need to be addressed.

After three strikes-the continued discriminatory impact of the sentencing system against indigenous Australians: suggested reform

Three strikes laws are discriminatory but not for previously advanced reasons. The three strikes laws are merely an acute example of a fundamentally flawed sentencing system that discriminates against economically and socially disadvantaged people, particularly the group that is the focus of this article – Indigenous Australians. The repeal of the Northern Territory's mandatory sentencing laws has not remedied the unfair manner in which sentencing law and practice operate against Aboriginals; either in the Northern Territory or generally. Criminal punishment systems around the world punish a disproportionate number of socially deprived people. In Australia, Indigenous Australians were grossly over-represented in Australian jails prior to the three strikes laws and will remain so unless steps are taken to address their disadvantage. The obvious solution to redress the over-representation by Indigenous Australians is to provide them with the same social opportunities and resources as the rest of the community. This is overly ambitious – at least in the short term. This article suggests a more attainable change in sentencing law to remedy some of the disadvantages experienced by Aboriginals. It suggests that far less weight should be accorded to prior convictions in the sentencing calculus.

Health, Death, and Indigenous Australians in the Coronial system

This paper details research conducted in Queensland during the first year of operation of the new Coroners Act 2003. Information was gathered from all completed investigations between December 2003 and December 2004 across five categories of death: accidental, suicide, natural, medical and homicide. It was found that 25 percent of the total number of Indigenous deaths recorded in 2004 were reported to, and investigated by, the Coroner, in comparison to 9.4 percent of non-Indigenous deaths. Moreover, Indigenous people were found to be over-represented in each category of death, except in death in a medical setting, where they were absent.

Making sense of dementia : understanding amongst indigenous Australians

Dementia is a growing health and social concern for all Australians. Whilst the prevalence of dementia amongst Australia's indigenous people is unclear, there is some evidence that dementia rates are five times that of the general Australian population. To date no studies have examined dementia knowledge levels in indigenous communities. Purpose of the study: This paper aims to explore indigenous Australians' understanding, knowledge and misconceptions of dementia. Design and methods: Hundered and seventy-four indigenous adults participated in a cross-sectional survey using a modified version of the Alzheimer's Disease Knowledge Test (ADK). The survey included demographic information, two open-ended questions and 20 multiple choice questions. Each ADK item was examined to identify responses that revealed commonly held correct beliefs, knowledge gaps and misconceptions. Results: The overall level of understanding of dementia was poor. Younger participants were significantly more likely to have no knowledge of Alzheimer's Disease, whereas the other age groups were most likely to have at least some knowledge. It was also revealed that there are common misconceptions about Alzheimer's Disease held by both indigenous and non-indigenous communities. Implications: Culturally appropriate awareness campaigns and targeted educational interventions need to be implemented to improve the general level of understanding of dementia in indigenous communities.

I sang Amazing Grace for about 3 hours that day : understanding Indigenous Australians’ experience of seclusion

Research shows that Indigenous Australians suspicion and fear of being ‘locked up’ may influence mental health service avoidance. Given this, the aim of this study was to explore, by qualitative analysis of in depth interviews (N = 3), how three Indigenous people experienced the controversial practice of seclusion Hans-Georg Gadamer’s phenomenology guided analysis of the material, and allowed narrated experiences to be understood within their cultural and historical context. Participants viewed seclusion negatively: police involvement in psychiatric care; perceptions of being punished and powerless; occasions of extreme use of force; and lack of care were prominent themes throughout the interviews. While power imbalances inherent in seclusion are problematic for all mental health clients, the distinguishing factor in the Indigenous clients’ experience is that seclusion is continuous with the discriminatory and degrading treatment by governments, police and health services that many Indigenous people have experienced since colonisation. The participants’ experiences echoed Goffman’s (1961) findings that institutional practices act to degrade and dehumanise clients whose resulting conformity eases the work of nursing staff. While some nurses perceive that seclusion reduces clients’ agitation (Meehan, Bergen & Fjeldsoe, 2004; Wynaden et al., 2001), one must ask at what cost to clients’ dignity, humanity and basic human rights.

Study protocol : establishing good relationships between patients and health care providers while providing cardiac care. Exploring how patient-clinician engagement contributes to health disparities between indigenous and non-indigenous Australians in South Australia

Abstract Background: Studies that compare Indigenous Australian and non-Indigenous patients who experience a cardiac event or chest pain are inconclusive about the reasons for the differences in-hospital and survival rates. The advances in diagnostic accuracy, medication and specialised workforce has contributed to a lower case fatality and lengthen survival rates however this is not evident in the Indigenous Australian population. A possible driver contributing to this disparity may be the impact of patient-clinician interface during key interactions during the health care process. Methods/Design: This study will apply an Indigenous framework to describe the interaction between Indigenous patients and clinicians during the continuum of cardiac health care, i.e. from acute admission, secondary and rehabilitative care. Adopting an Indigenous framework is more aligned with Indigenous realities, knowledge, intellects, histories and experiences. A triple layered designed focus group will be employed to discuss patient-clinician engagement. Focus groups will be arranged by geographic clusters i.e. metropolitan and a regional centre. Patient informants will be identified by Indigenous status (i.e. Indigenous and non-Indigenous) and the focus groups will be convened separately. The health care provider focus groups will be convened on an organisational basis i.e. state health providers and Aboriginal Community Controlled Health Services. Yarning will be used as a research method to facilitate discussion. Yarning is in congruence with the oral traditions that are still a reality in day-to-day Indigenous lives. Discussion: This study is nestled in a larger research program that explores the drivers to the disparity of care and health outcomes for Indigenous and non-Indigenous Australians who experience an acute cardiac admission. A focus on health status, risk factors and clinical interventions may camouflage critical issues within a patient-clinician exchange. This approach may provide a way forward to reduce the appalling health disadvantage experienced within the Indigenous Australian communities. Keywords: Patient-clinician engagement, Qualitative, Cardiovascular disease, Focus groups, Indigenous

Associations between area-level disadvantage and DMFT among a birth cohort of Indigenous Australians

Background Individual-level factors influence DMFT, but little is known about the influence of community environment. This study examines associations between community-level influences and DMFT among a birth cohort of Indigenous Australians aged 16–20 years. Methods Data were collected as part of Wave 3 of the Aboriginal Birth Cohort study. Fifteen community areas were established and the sample comprised 442 individuals. The outcome variable was mean DMFT with explanatory variables including diet and community disadvantage (access to services, infrastructure and communications). Data were analysed using multilevel regression modelling. Results In a null model, 13.8% of the total variance in mean DMFT was between community areas, which increased to 14.3% after adjusting for sex, age and diet. Addition of the community disadvantage variable decreased the variance between areas by 4.8%, indicating that community disadvantage explained one-third of the area-level variance. Residents of under-resourced communities had significantly higher mean DMFT (β=3.86, 95% CI 0.02¬, 7.70) after adjusting for sex, age and diet. Conclusions Living in under-resourced communities was associated with greater DMFT among this disadvantaged population, indicating that policies aiming to reduce oral health-related inequalities among vulnerable groups may benefit from taking into account factors external to individual-level influences.

"We don't tell people what to do": An ethnography of health promotion with Indigenous Australians in South East Queensland

This thesis contributes to the decolonisation of health promotion by examining Indigenous-led health promotion practice in an urban setting. Using critical ethnography, the study revealed dialogical, identity-based approaches that centred relationship, community control and choice. Based on the findings, the thesis proposes four interrelated principles for decolonising health promotion and argues that Indigenous-led health promotion presents a way to bridge the rhetoric and practice of empowerment in Australian mainstream health promotion practice.

Race, genetic determinism and the media: an exploratory study of media coverage of genetics and Indigenous Australians

Social scientists and Indigenous people have voiced concerns that media messages about genetics and race may increase the public's belief in genetic determinism and even increase levels of racism. The degree of genetic determinism in media messages has been examined as a determining factor. This study is the first to consider the implications of this area of scholarship for the indigenous minority in Australia. A search of the last two decades of major Australian newspapers was undertaken for articles that discussed Indigenous Australians and genetics. The review found 212 articles, of which 58 concerned traits or conditions that were presented in a genetically deterministic or antideterministic fashion. These 58 articles were analysed by topic, slant, and time period. Overall, 23 articles were anti-deterministic, 18 were deterministic, 14 presented both sides and three were ambiguous. There was a spike in anti-deterministic articles in the years after the Human Genome Diversity Project, and a parallel increase in deterministic articles since the completion of the Human Genome Project in 2000. Potential implications of the nature of media coverage of genetics for Indigenous Australians is discussed. Further research is required to test directly the impact of these messages on Australians.

Carotid artery intimal medial thickness, brachial artery flow-mediated vasodilation and cardiovascular risk factors in diabetic and non-diabetic indigenous Australians

Background: Indigenous Australians are at high risk for cardiovascular disease and type 2 diabetes. Carotid artery intimal medial thickness (CIMT) and brachial artery flow-mediated vasodilation (FMD) are ultrasound imaging based surrogate markers of cardiovascular risk. This study examines the relative contributions of traditional cardiovascular risk factors on CIMT and FMD in adult Indigenous Australians with and without type 2 diabetes mellitus. Method: One hundred and nineteen Indigenous Australians were recruited. Physical and biochemical markers of cardiovascular risk, together with CIMT and FMD were meausred for all subjects. Results: Fifty-three Indigenous Australians subjects (45%) had type 2 diabetes mellitus. There was a significantly greater mean CIMT in diabetic versus non-diabetic subjects (p = 0.049). In the non-diabetic group with non-parametric analyses, there were significant correlations between CIMT and: age (r = 0.64, p < 0.001), systolic blood pressure (r = 0.47, p < 0.001) and non-smokers (r = -0.30, p = 0.018). In the diabetic group, non-parametric analysis showed correlations between CIMT, age (r = 0.36, p = 0.009) and duration of diabetes (r = 0.30, p = 0.035) only. Adjusting forage, sex, smoking and history of cardiovascular disease, Hb(A1c) became the sole significant correlate of CIMT (r = 0.35,p = 0.01) in the diabetic group. In non-parametric analysis, age was the sole significant correlate of FMD (r = -0.31,p = 0.013), and only in non-diabetic subjects. Linear regression analysis showed significant associations between CIMT and age (t = 4.6,p < 0.001), systolic blood pressure (t = 2.6, p = 0.010) and Hb(A1c) (t = 2.6, p = 0.012), smoking (t = 2.1, p = 0.04) and fasting LDL-cholesterol (t = 2.1, p = 0.04). There were no significant associations between FMD and examined cardiovascular risk factors with linear regression analysis Conclusions: CIMT appears to be a useful surrogate marker of cardiovascular risk in this sample of Indigenous Australian subjects, correlating better than FMD with established cardiovascular risk factors. A lifestyle intervention programme may alleviate the burden of cardiovascular disease in Indigenous Australians by reducing central obesity, lowering blood pressure, correcting dyslipidaemia and improving glycaemic control. CIMT may prove to be a useful tool to assess efficacy of such an intervention programme. (c) 2004 Elsevier Ireland Ltd. All rights reserved.