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Aboriginal and Torres Strait Islander people are the Indigenous people of Australia. The prevalence and burden of chronic disease among them is significantly higher than that of non-Indigenous Australians. This paper describes the chronic illness experiences of 19 Aboriginal and Torres Strait Islander people living in urban areas in terms of their strategic representations of self. Participants in this study used techniques of revealing and concealing chronic illness. These strategies were employed in multiple arenas - among family, among broader community, and in specific spaces including health care services. They highlight tensions that arise through the intersection between the desire to preserve family and community life, and the ways in which the physical body manifests chronic illness. In this paper we bring together notions of time (drawing on Zimbardo's time perspectives theory) and biography (drawing on Bury's disrupted biography theory). Through an analysis of shifting boundaries we conduct an exploratory investigation of the ways in which urban Aboriginal and Torres Strait Islander people in this study weave together elements of both past and future perspectives to mobilise modes of self-representation and agency in their management of chronic illness. We then consider some options for primary health care. [ABSTRACT FROM AUTHOR]

This study examines experiences of living with chronic illness for haemodialysis patients. In order to understand these experiences the paper takes an existential-phenomenological approach. Interviews of seven participants (five males, two females) were collected in a haemodialysis clinic. Based upon the participants experiences three core themes emerged: (1) the challenges of living with chronic renal failure; (2) body changes and embodiment; (3) their illness experience and social relationships. The findings suggest that the illness experience of chronic renal failure is an on-going struggle to attain a sense of control. We suggest that where a sense of control is limited this can create a sense of powerlessness. Further, the illness experience was not solely restricted to the individual, but also affected wider social relationships. It is only through taking into account the context of patients experience of illness that clinicians/nurses can meaningfully draw on all aspects of evidence to reach integrated clinical judgement. [ABSTRACT FROM AUTHOR]

This paper explores how the structuring of places and time influence Aboriginal and Torres Strait Islander patient and carer experiences of health services. Face-to-face in-depth interviews were conducted with urban Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease as well as family carers (N = 19). Content analysis was undertaken. Participants report that each element of the time spent in Aboriginal Medical Services is seen as more valuable and worthwhile than in mainstream health services, from social and health sharing experiences in the waiting room to health care in clinical places; and that users feel they can rely on sufficient time and respectful care in their clinical consultation. Purposeful design of both physical and temporal aspects of health services is called for. We suggest re-introducing opportunities for spatiotemporal design in health care that have been limited by the segmented 'person as illness' design features of Australia's current mainstream health system. [ABSTRACT FROM AUTHOR]

The increase of chronic illness as a leading cause of death has given rise to self-care and expert patient initiatives. Caring for chronically ill people places a tremendous economic burden on the health care system, informal carers, the labour market and benefit system (Department of Health 2001, 2004, 2005). Thus, in many countries health policy encourages patients to become ‘experts’ in the self-management of their conditions in the belief that it will help save money and improve health and well-being (Wanless 2002). For example, the notion of ‘expert patients’ has emerged in UK policy and is pivotal to government plans to modernise the National Health Service (NHS) by linking patient expertise to ideas of empowerment, a better quality of life, self-esteem and a user-driven NHS (Department of Health 2001; Fox et al 2005). Self-management and expert patient initiatives aim to encourage chronically ill patients to become more actively involved in decisions concerning their care and well-being (Lorig and Holman 2003; Lorig et al 1985, 1999, 2001). [ABSTRACT FROM AUTHOR]

This paper discusses the perspectives of 18 people who were living with HIV/AIDS in Melbourne, Australia, and who were using complementary and alternative medicine (CAM) alongside biomedicine. I argue that although people may perceive the holistic focus of CAM to be more desirable than the more pathogenic focus of biomedicine, a holistic approach is also associated with limitations. In this study, participants were motivated to use CAM because of the perceived limitations of biomedicine and also because of a desire to have control over how their illness was managed. However the majority of participants were not interested in the philosophical principles of CAM, rather in whether these therapies were effective and manageable. These findings suggest that although people may hold different beliefs about CAM as compared with biomedicine, an approach to healthcare that has a practical focus on both clinical outcomes and patient wellbeing may be acceptable to most people. [ABSTRACT FROM AUTHOR]

Whilst 'biographical disruption' remains important for explaining how people rebuild biography following the onset of chronic illness, it does not self-evidently explain the problem of managing a fluctuating chronic condition such as non-specific low back pain. Chronic illness rarely leads to long-term improvement; the trajectory is not always linear, and sudden or gradual improvements alongside deterioration are commonly experienced. In the case of low back pain, self-management often involves utilisation of non-pharmaceutical approaches, personal resources for accommodating pain and disability, as well as managing symptoms with clinical treatments to relieve pain. Such a multifaceted approach -- not only concerned with the reduction of symptoms -- shifts focus beyond the 'disease' state and a single point of disruption, drawing attention to the use of 'health maintenance actions' to facilitate a proactive response to illness management. We propose this new approach as an alternative way of understanding the experience of patients with fluctuating health conditions such as low back pain. [ABSTRACT FROM AUTHOR]

The ageing of the HIV population is unfolding within the context of a politicised history of medical care, medical breakthroughs changing HIV from a fatal to a chronic illness, and a long-standing treatment partnership between medical professionals and HIV patients. This article draws on in-depth interviews with those living with HIV in later life (aged 50 and over), as well as those working with them, to uncover how these various actors understand the nature and consequences of this new phenomenon, and whether their understandings and approaches vary according to the individual's connection to it. All informants described the interaction between ageing and HIV as complex and incompletely understood, and accounted for their own uncertainties about this interplay as due to a global knowledge gap produced by the novelty of ageing with HIV. In these data, working in the area of, or being personally affected by, ageing with HIV emerged as 'experiments in living,' with those variously involved in the phenomenon forced to take tentative, exploratory steps while navigating 'uncharted territory.' Yet, the poorly-understood nature of the ageing/HIV interplay was framed differently, with clinicians and scientists constructing it as a temporary gap in technical knowledge (a scientific puzzle), and non-medical stakeholders and older people living with HIV describing it as an anxiety-provoking source of chronic uncertainty permeating daily life. These differences and similarities can help us to reformulate what medical sociology has often constructed as a static 'gulf' between the clinical and the lifeworlds as, instead, gravitational pulls towards clinical and experiential dimensions of chronic illness as it unfolds in later life. [ABSTRACT FROM AUTHOR]

I give an account of disquieting experiences in relation to my treatment and those with chronic illness in the acute system during my 5 years' experience as an informal caregiver. People with chronic illness (and their caregivers), particularly stroke survivors face a biased, frustrating and even dangerous acute care hospital system where they are second class. Well-being and stability from rehabilitation and self-management can be undermined. Dow and McDonald's (2007) concept: 'disenfranchised care contractors' within early discharge and 'hospital in the home' programs is generalised more broadly. The studies that initiated Hospital at Home programs are scrutinised. The Australian medical system relies on informal carers in a fundamental way but still does not identify or acknowledge them despite the presence of laws such as the Carers Recognition Act (2005). A new concept argues informal caregivers 'do social bonds' at a deep level, weaving the social fabric into a denser structure. But as part of the private world, the formal system treats them routinely with disrespect and they can be manipulated to obtain their participation in early discharge programs and long term care. [ABSTRACT FROM AUTHOR]