Keeping connected: the lives of young people with ongoing health conditions in Australia

This chapter draws from a three year longitudinal Australian Research Council (ARC) project conducted in Victoria, Australia with 31 young people who were living with ongoing health conditions. The aim of the Keeping Connected project was to elicit the young people’s views of schooling, their relationships with peers and teachers, and their altered educational opportunities, given their ongoing and widely varying health conditions. Elsewhere in the literature these young people are often described as living with chronic illness (Hopkins et al., 2013; Moss, 2012). Victoria, Australia, is home to more than 1.2 million children and young people, representing just under 25% of the national child population. The Royal Children’s Hospital Education Institute (RCHEI), one of the sponsoring research partners for this study is located in Melbourne, the capital city of Victoria. The study makes a unique contribution to our knowledge of chronic illness, or what we prefer to refer to as ongoing health conditions, which affect 12% of school age students in Australia. One of my ongoing observations is that not all research that is produced in the name of social justice or analysing exclusions in schooling is approached through the repositioning of the qualitative research which has occurred over the past two decades. Throughout this chapter I aim to demonstrate how a post qualitative approach can produce a secondary analysis of data once a large scale project is completed. Data can be reworked and represented through networks of the social world, in this case the networks of living with an ongoing health condition as a young person in Australia at the end of the first decade of the twentieth first century.

The ‘r’ word and closure of remote Aboriginal communities in Western Australia; a potential framework for change

AbstractThe latest Australian Commonwealth Government Close the Gap Report reveals the circumstances of many of Australia’s Indigenous Peoples are either stagnant or going backwards. This paper argues that such ongoing injustice is a consequence of systemic racism that has been perpetuated since colonization and sustained in the twenty first century by discussion or mention of racism being taboo. A counter colonial educational framework is then provided that has the potential to address such institutional racism. The paper begins by providing a definition of systemic racism. Following this there is a brief explanation of the unique geographical context and the racist history of colonization in Australia. The nature of remote communities, the link between traditional law, country and identity will be outlined. Based on readily available sources such as media reports, social media links, and public policy announcements by government the paper then reflects on what has been reported about closure of remote communities in Western Australia. Government policy, announcements and events of the past year will be described and critically discussed in light of the definition of racism provided at the beginning of the article. The proposed framework requires self-reflexivity of organisations and individuals with a particular focus on aspects of sovereignty, healing, re-learning history and starting with a focus on agency instead of deficit. Being guided by this framework has the potential to avoid arbitrarily forcing people from their physical, spiritual and ancestral home, though this is likely to be a long term proposition rather than a quick fix.

Measuring community and service provider attitudes to child sexual abuse in remote indigenous communities in Western Australia

This study aimed to evaluate a scale to measure attitudes to child sexual abuse (CSA) in remote Australian Indigenous communities. The scale was developed to gauge attitudes that may be inhibiting the reporting of cases of CSA to police, as well as to evaluate whether interventions that focused on collaborative relationships between community members and police resulted in changes in attitudes. Participants included service providers living outside the community (58%), community members (living within the community; 9%), and service providers who were also community members (33%); 18% of participants identified as Indigenous. Principal components analysis revealed a nonintuitive six-factor solution that did not support the original four concepts. Four intuitive factors emerged from an abridged version of the scale: entrenched issues, personal understanding and knowledge, communication between community and government, and community action. The scale detected significant differences between community status and between Indigenous status groups on some factors.

Complementary medicine use among people living with HIV/AIDS in Victoria, Australia: practices, attitudes and perceptions

There is limited evidence suggesting the underlying reasons for the use of complementary and alternative medicines (CAMs) by people with HIV/AIDS, or individual attitudes and beliefs about the use of CAMs. Using focus groups and a survey with 151 individuals attending the HIV Clinics at The Alfred Hospital, Melbourne, we aimed to provide insights into factors that influence the use of CAMs among people living with HIV/AIDS. Roughly half (49%) of the participants had used CAMs to manage their HIV/AIDs. Users of CAMs utilized a wide range of treatments in managing their condition, but costs of the CAMs meant that users were not necessarily able to use them as much as they might have liked. Use of CAMs was based on a desire to find something beneficial rather than on being dissatisfied with conventional medicine. Further research is needed into (a) the effects of CAMs and (b) the enhancement of communication and collaboration between patients, doctors and complementary medicine practitioners.

In their own hands: can young people change Australia?

In Their Own Hands: Can young people change Australia? documents and celebrates young people’s active participation in social, political and civic life and describes the many ways in which they are leading vital social change. At the same time, it critically examines the barriers to this participation and questions the degree to which the voice of young people is genuinely valued in Australia.Young people are often characterised as disengaged and apathetic. This book challenges that view while providing a set of needed signposts for change at the level of core social institutions and processes. The book draws on the work of The Foundation for Young Australians and its legacy of significant research into the education, wellbeing and participation of young Australians. It also draws on the expertise of renowned commentators in youth research, policy and practice.

Mortality trends among people with type 1 and type 2 diabetes in Australia: 1997-2010

OBJECTIVE: With improvements in cardiovascular disease (CVD) rates among people with diabetes, mortality rates may also be changing. However, these trends may be influenced by coding practices of CVD-related deaths on death certificates. We analyzed trends of mortality over 13 years in people with diabetes and quantified the potential misclassification of CVD mortality according to current coding methods. RESEARCH DESIGN AND METHODS: A total of 1,136,617 Australians with diabetes registered on the National Diabetes Services Scheme between 1997 and 2010 were linked to the National Death Index. Excess mortality relative to the Australian population was reported as standardized mortality ratios (SMRs). Potential misclassification of CVD mortality was determined by coding CVD according to underlying cause of death (COD) and then after consideration of both the underlying and other causes listed in part I of the death certificate. RESULTS: For type 1 diabetes, the SMR decreased in males from 4.20 in 1997 to 3.08 in 2010 (Ptrend < 0.001) and from 3.92 to 3.46 in females (Ptrend < 0.01). For type 2 diabetes, the SMR decreased in males from 1.40 to 1.21 (Ptrend < 0.001) and from 1.56 to 1.22 in females (Ptrend < 0.001). CVD deaths decreased from 35.6 to 31.2% and from 31.5 to 27.2% in males and females with type 1 diabetes, respectively (Ptrend < 0.001 for both sexes). For type 2 diabetes, CVD decreased from 44.5 to 29.2% in males and from 45.5 to 31.6% in females (Ptrend < 0.001 for both sexes). Using traditional coding methods, ∼38 and 26% of CVD deaths are underestimated in type 1 diabetes and type 2 diabetes, respectively. CONCLUSIONS: All-cause and CVD mortality has decreased in diabetes. However, the total CVD mortality burden is underestimated when only underlying COD is considered. This has important ramifications for understanding mortality patterns in diabetes.

Indigenous intermediaries : new perspectives on exploration archives

This edited collection understands exploration as a collective effort and experience involving a variety of people in diverse kinds of relationships. It engages with the recent resurgence of interest in the history of exploration by focusing on the various indigenous intermediaries – Jacky Jacky, Bungaree, Moowattin, Tupaia, Mai, Cheealthluc and lesser-known individuals – who were the guides, translators, and hosts that assisted and facilitated European travellers in exploring different parts of the world.These intermediaries are rarely the authors of exploration narratives, or the main focus within exploration archives. Nonetheless the archives of exploration contain imprints of their presence, experience and contributions. The chapters present a range of ways of reading archives to bring them to the fore. The contributors ask new questions of existing materials, suggest new interpretive approaches, and present innovative ways to enhance sources so as to generate new stories.

Indigenous sustainable land management practices: perspectives from Wadawurrung/Wathaurong Country

This paper discusses the role and potential of ethnobotany in Australian Aboriginal plant knowledge in supporting and enabling sustainable land management practices for land use developments. In particular, it draws upon the Wadawurrung / Wathaurong Country knowledge for the greater Geelong region of Australia, summarises recent investigations and research, offers a deeper insight into the risks of indigenous vegetation deterioration and opportunities relating to plant usage, and highlights the importance of this plant knowledge in sustainable land management practice. The focus of this investigation is upon the Wathaurong Country around the City of Greater Geelong, host city for the ISDRS conference, of which there is little published material and oral distillation.
The purpose of this paper is to demonstrate how the Wadawurrung / Wathaurong people survived for over 60,000 years through sustainable land management techniques, caring & healing themselves by holding deep knowledge of the plants available in this region. Ethnoecology is the governing theoretical framework, with ethnobotany being a subset of this and the primary focus of this paper.
Conclusions arising from this research include: there is limited knowledge as a modern colonised nation; what little knowledge there is left is ageing and will disappear; and, there is an urgent need to better understand what still grows in the region prior to further urban applications and this is also compounded by the driving forces of climate change. Accordingly this paper demonstrates the need to urgently undertake this research. The implications for ‘Tipping Points’ is that we are increasingly at the point of no return is when we forget about the indigenous knowledge base and watch the death of the knowledge holders, and their wisdom and its benefits have not been transposed into contemporary society.

End-of-life care in a rehabilitation centre for older people in Australia

Aim
To investigate processes at the end of life for patients who died in a subacute evaluation and management facility for older people.

Methods
A retrospective chart audit for patients (n = 55) who died in the previous 2 years was undertaken, recording a number of significant variables.


Results
Despite diagnosis of comorbid medical conditions, most participants were admitted for improved functioning or assessment for alternative accommodation. Consistent with this focus, the key contact person was most often an allied health team member. Not For Resuscitation order and/or power of attorney documents on admission were uncommon (<30%) as were referrals to palliative care specialist staff (13%), although an end-of-life discussion was recorded (90%) and often included as a new goal of care (71%).

Conclusion
Factors likely to improve end-of-life care include advance care planning, earlier recognition of short prognosis and staff education.

The comparative cost of food and beverages at remote Indigenous communities, Northern Territory, Australia

OBJECTIVE: To determine the average price difference between foods and beverages in remote Indigenous community stores and capital city supermarkets and explore differences across products.

METHODS: A cross-sectional survey compared prices derived from point-of-sale data in 20 remote Northern Territory stores with supermarkets in capital cities of the Northern Territory and South Australia for groceries commonly purchased in remote stores. Average price differences for products, supply categories and food groups were examined.

RESULTS: The 443 products examined represented 63% of food and beverage expenditure in remote stores. Remote products were, on average, 60% and 68% more expensive than advertised prices for Darwin and Adelaide supermarkets, respectively. The average price difference for fresh products was half that of packaged groceries for Darwin supermarkets and more than 50% for food groups that contributed most to purchasing.

CONCLUSIONS: Strategies employed by manufacturers and supermarkets, such as promotional pricing, and supermarkets' generic products lead to lower prices. These opportunities are not equally available to remote customers and are a major driver of price disparity.

IMPLICATIONS: Food affordability for already disadvantaged residents of remote communities could be improved by policies targeted at manufacturers, wholesalers and/or major supermarket chains.

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research

BACKGROUND: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. OBJECTIVE: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. METHOD: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. RESEARCH OUTCOMES: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. CONCLUSION: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

Mediatisation, marginalisation and disruption in Australian Indigenous affairs

This article considers how changing media practices of minority groups and political and media elites impact on demo-cratic participation in national debates. Taking as its case study the state-sponsored campaign to formally recognise In-digenous people in the Australian constitution, the article examines the interrelationships between political media and Indigenous participatory media—both of which we argue are undergoing seismic transformation. Discussion of constitutional reform has tended to focus on debates occurring in forums of influence such as party politics and news media that privilege the voices of only a few high-profile Indigenous media ‘stars’. Debate has progressed on the assumption that constitutional change needs to be settled by political elites and then explained and ‘sold’ to Indigenous and non-Indigenous Australians. Our research on the mediatisation of policymaking has found that in an increasingly media-saturated environment, political leaders and their policy bureaucrats attend to a narrow range of highly publicised voices. But the rapidly changing media environment has disrupted the media-driven Recognise campaign. Vigorous pub-lic discussion is increasingly taking place outside the mainstream institutions of media and politics, while social media campaigns emerge in rapid response to government decisions. Drawing on a long tradition in citizens’ media scholar-ship we argue that the vibrant, diverse and growing Indigenous media sphere in Australia has increased the accessibility of Indigenous voices challenging the scope and substance of the recognition debate. The article concludes on a cau-tionary note by considering some tensions in the promise of the changing media for Indigenous participation in the national policy conversation.

‘“Glossary Islands” as sites of the “Abroad” in post-colonial literature: towards a new methodology for language and knowledge relations in Keri Hulme’s The Bone People and Melissa Lucashenko’s Mullumbimby.’

The publication of Melissa Lucashenko’s Mullumbimby in 2013 drew attention once more to the issue of how post-colonial scholars might best engage with English-language literary texts also containing a glossary of Indigenous words. This issue emerged first with the publication of Keri Hulme’s The Bone People in 1984. This article argues that, to date, scholars like Simon During and Eve Vincent have perpetuated a binary either/or approach to the interpretation of these glossaries. The result of this approach has been that either the pre-colonial Indigenous language or the colonial/post-colonizing English language has been privileged as the locus of linguistic power in the text. One problem with this approach is that it does not adequately represent the complex historical, cultural and political circumstances of post-colonial and multi-cultural nations like Australia (setting of Mullumbimby) and New Zealand (setting of The Bone People) as these link to matters of language. Another problem is that this binary approach restrains a close reading of the differences between different types of such glossaries, and of the nuanced relationship of a glossary to the text it accompanies. In place of this approach, this article proposes a new methodology that works with Elizabeth M. DeLoughrey’s notion of “tidalectics” as a way of reading island literatures. The neologism “glossary islands” allows another way into considering the function of glossaries in islandic literary texts like Lucashenko’s and Hulme’s. The post-colonial connection between islands and glossaries lies in the fact that they are each an intensified site of knowledge.