Clive Aspin

Achieving a balanced life in the face of chronic illness

The increasing prevalence of chronic disease is a driver of health system reform in most economically advanced nations. A consistent theme within these reforms is building greater patient-centredness into the health care delivery. This study aims to develop an in-depth understanding of the experience of patients and family carers affected by chronic illness that will be the basis on which to propose policy and health system interventions that are patient-centred. Participants struggled with the ongoing tasks of balancing their lives with the increasing demands and intrusion of chronic illness. Their attempts to achieve a balance were seriously hampered by fragmented services, complexity in navigating health services, relationships with health professionals and others, and co-morbidity. Future policy directions include designing models of care and infrastructure that enable patients and their family carers to balance life and illness, and aligning patient-centred care not only within health services but also with community and social support services.

A patient-centred approach to health service delivery: improving health outcomes for people with chronic illness

BackgroundThe Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers.MethodWe interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease.ResultsPatients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes.ConclusionsIn order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case.

Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study

BackgroundAboriginal and Torres Strait Islander people with chronic illness confront multiple challenges that contribute to their poor health outcomes, and to the health disparities that exist in Australian society. This study aimed to identify barriers and facilitators to care and support for Aboriginal and Torres Strait Islander people with chronic illness.MethodsFace-to-face in-depth interviews were conducted with Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease (n-16) and family carers (n = 3). Interviews were transcribed verbatim and the transcripts were analysed using content analysis. Recurrent themes were identified and these were used to inform the key findings of the study.ResultsParticipants reported both negative and positive influences that affected their health and well-being. Among the negative influences, they identified poor access to culturally appropriate health services, dislocation from cultural support systems, exposure to racism, poor communication with health care professionals and economic hardship. As a counter to these, participants pointed to cultural and traditional knowledge as well as insights from their own experiences. Participants said that while they often felt overwhelmed and confused by the burden of chronic illness, they drew strength from being part of an Aboriginal community, having regular and ongoing access to primary health care, and being well-connected to a supportive family network. Within this context, elders played an important role in increasing people’s awareness of the impact of chronic illness on people and communities.ConclusionsOur study indicated that non-Indigenous health services struggled to meet the needs of Aboriginal and Torres Strait Islander people with chronic illness. To address their complex needs, health services could gain considerably by recognising that Aboriginal and Torres Strait Islander patients have a wealth of cultural knowledge at their disposal. Strategies to ensure that this knowledge is integrated into care and support programs for Aboriginal and Torres Strait Islander people with chronic illness should achieve major improvements.

Effective communication is crucial to self-management: the experiences of immigrants to Australia living with diabetes

Objectives: Ageing immigrant populations now pose problems for the management of chronic illness in Australia. This article asks questions about the experiences of immigrants in Australia with type II diabetes mellitus (DM). What impact, if any, have health policies had on the lives of immigrants? How do their experiences of living with DM compare with those of people with DM who were born in Australia? Methods: Semi-structured interviews were conducted with 32 participants who had DM (n = 25) or cared for someone with DM (n = 7). Fifteen participants had migrated to Australia and English was not their first language. Participants were asked to describe their experience of managing diabetes. Results: Immigrants to Australia confront linguistic and cultural barriers that create an extra layer of problems not experienced by Australian-born people. Older people who were born overseas face obstacles to effective engagement with the health system that weaken their ability to take an active part in the management of their conditions. Conclusions: Chronic disease policy is failing immigrants to Australia. Health professionals and services must recognize the central role that cultural diversity plays in self-management and the impact that this can have on health outcomes for immigrants with chronic illness.

Health policy responses to rising rates of multi-morbid chronic illness in Australia and New Zealand

Objective: To examine current health policy in Australia and New Zealand and assess the extent to which the policies equip these countries to meet the challenges associated with increasing rates of multi‐morbid chronic illnesses.

Who's afraid of sex at school? The politics of researching culture, religion and sexuality at school

This paper explores the methodological politics of researching at the intersections of sexuality, culture and religion in secondary schools. It draws on experiences during a project concerned with how to address cultural and religious diversity in sexuality education in Australia and New Zealand. The paper focuses on two methodological sticking points, one occurring inside academia and the other outside, in schools. The first coheres around the process of gaining ethics approval from multiple institutional committees and the second accesses schools for participation. These sticking points are conceptualized as effects of a set of discursive and material constraints which are idiosyncratic to school-based sexualities research. We argue that discourses of sexuality and young people are mobilized in both spaces and intersect with a social moment of ‘risk anxiety’ in ways that shape the methodological possibilities of the research. These discourses serve to constitute sexualities research as ‘risky’ and ‘controversial’, an image which impedes the generation of new knowledge in the field. By rendering challenges of this research visible and discursively deconstructing the reasons for them, we refuse to dismiss school-based sexualities research as ‘too hard’. Instead, we aim to keep this topic firmly on the educational research agenda by alerting researchers to its challenges so they may prepare for them.

HIV diagnoses in indigenous peoples: comparison of Australia, Canada and New Zealand

In industrial countries, a number of factors put indigenous peoples at increased risk of HIV infection. National surveillance data between 1999 and 2008 provided diagnoses for Aboriginal and Torres Strait Islanders (Australia), First Nations, Inuit and Métis (Canada excluding Ontario and Quebec) and Māori (New Zealand). Each country provided similar data for a non-indigenous comparison population. Direct standardisation used the 2001 Canadian Aboriginal male population for comparison of five-year diagnosis rates in 1999-2003 and 2004-2008. Using the general population as denominators, we report diagnosis ratios for presumed heterosexual transmission, men who have sex with men (MSM) and intravenous drug users (IDU). Age standardised HIV diagnosis rates in indigenous peoples in Canada in 2004-2008 (178.1 and 178.4/100 000 for men and women respectively) were higher than in Australia (48.5 and 12.9/100 000) and New Zealand (41.9 and 4.3/100 000). Higher HIV diagnosis rates related to heterosexual contact among Aboriginal peoples, especially women, in Canada confirm a widening epidemic beyond the conventional risk groups. This potential of a generalised epidemic requires urgent attention in Aboriginal communities; available evidence can inform policy and action by all stakeholders. Although less striking in Australia and New Zealand, these findings may be relevant to indigenous peoples in other countries.

Crafting the Normative Subject: Queerying the Politics of Race in the New Zealand Health Education Classroom.

This article explores the potential of queering as a mode of critique by problematising the ways in which liberal politics of race shape normative understandings of health in a high school classroom. Drawing on findings from an Australian and New Zealand (NZ) research project designed to respond to religious and cultural difference in school-based sexuality education programmes, we critically queer how the Māori concept of hauora is deployed in the intended and operational NZ Health curriculum to shape the raced subject. Despite the best intentions of curriculum developers and classroom teachers to utilise Māori ways of knowing to meet their obligations within a bicultural nation, we argue that the notion of hauora is domesticated by being aligned with normalising individualistic notions of well-being that reflect the Eurocentric neoliberal individual enterprise subject. Palatable notions of Māori epistemologies as cultural artefacts and iconography drive that ‘inclusion’. The ‘cunning politic’ of (bicultural) recognition legitimates Māori ways of knowing in ways which privilege whiteness – reproducing rather than disrupting networks of power and dumbing down Māori epistemologies.

It hinges on the door: Time, spaces and identity in Australian Aboriginal Health Services

Abstract 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.

In Search of Critical Pedagogy in Sexuality Education: Visions, Imaginations, and Paradoxes.

This article is about the purposes and the processes of teaching comprehensive sexuality education to diverse communities. We argue that establishing an educational response to addressing diversity in sexuality education involves challenging and interrupting current dominant forms of authority, subordination, and systems of hegemony prevalent in the teaching practices of this subject. We argue that critical pedagogy (influenced by the Frankfurt school of thought and developed by Freire 1974, 1973; Giroux 1988, 2003; and Kincheloe 2004) is a vehicle to explore and expand existing teaching pedagogies and cultural investments in sexuality education, as well as a way to contribute toward more effective teaching and student learning in this subject area. The turn to critical pedagogy in this article is an acknowledgement that the dilemmas of the secondary classroom and the questions of what becomes of sexual knowledge in that space are too big to ignore. Conservative pedagogies still reign in school-based sexuality education. Educational standards in this subject area are still strictly associated with risk knowledge (McWilliams 1996) and normative ideals of sex, sexuality, and gender are pervasive in the teaching practices of this subject (Allen 2007; Rasmussen 2006).