Christy E. Newman

Social factors associated with Major Depressive Disorder in homosexually active, gay men attending general practices in urban Australia

Objectives : Social factors associated with Major Depressive Disorder (MDD) were identified among gay men attending high HIV caseload general practices in Sydney and Adelaide.

Emerging future issues in HIV/AIDS social research

Peter Piot (Executive Director of UNAIDS) challenged Bangkok International AIDS Conference attendees to think ahead 10 years or more so we will be prepared to meet the challenges that will face us [1]. Over this next decade, many formidable challenges are likely to stem from the interactions of social, ecological, political, and economic change; existing social structures; the changing HIV epidemic, and changes produced by emerging biomedicine and viral evolution. Although some challenges will be unpredictable, we should plan ahead for those we are able to anticipate. This paper identifies important social research issues regarding the changing global epidemic so funding agencies, journal editors, social science communities, individual researchers and students, non-governmental organizations, communitybased organizations, and the general public can debate them and, hopefully, act on them.

Barriers and incentives to HIV treatment uptake among Aboriginal people in Western Australia

Objective:To examine the barriers and incentives to HIV treatment uptake among Aboriginal people in Western Australia. Methods:In-depth, semi-structured interviews were conducted between February and September 2003 with 20 Aboriginal people who were HIV-positive; almost half the total number of Aboriginal people known to be living with HIV in Western Australia at that time. Results:Despite having access to treatments in both urban and rural areas, only 11 of the 20 participants were on antiretroviral treatment at the time of interview. Four of the women had been prescribed treatment during pregnancy only. The main barriers to treatment uptake were fear of disclosure and discrimination, heavy alcohol consumption and poverty. The incentives were pregnancy and access to services whose approach can be described as broad-based and holistic, i.e. supporting people in the context of their everyday lives by providing psychosocial and welfare support as well as healthcare. Conclusion:For many Aboriginal people, maintaining social relationships, everyday routines and the respect of friends, families and community is a greater priority than individual health per se. Treatment regimens must be tailored to fit the logistical, social and cultural context of everyday life, and be delivered within the context of broad-based health services, in order to be feasible and sustainable.

'I can't do this, it's too much': building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers

ObjectivesSocial inclusion theory has been used to understand how people at the margins of society engage with service provision. The aim of this paper was to explore the cancer care experiences of Aboriginal people in NSW using a social inclusion lens.MethodsQualitative interviews were conducted with 22 Aboriginal people with cancer, 18 carers of Aboriginal people and 16 health care workers.ResultsParticipants’ narratives described experiences that could be considered to be situational factors in social inclusion such as difficulties in managing the practical and logistic aspects of accessing cancer care. Three factors were identified as processes of social inclusion that tied these experiences together including socio-economic security, trust (or mistrust arising from historic and current experience of discrimination), and difficulties in knowing the system of cancer treatment.ConclusionsThese three factors may act as barriers to the social inclusion of Aboriginal people in cancer treatment. This challenges the cancer care system to work to acknowledge these forces and create practical and symbolic responses, in partnership with Aboriginal people, communities and health organisations.

The role of the general practitioner in the Australian approach to HIV care: interviews with ‘key informants’ from government, non-government and professional organisations

Objectives HIV care is provided in a range of settings in Australia, but advances in HIV treatment and demographic and geographic changes in the affected population and general practitioner (GP) workforce are testing the sustainability of the special role for GPs. This paper explores how a group of ‘key informants’ described the role of the GP in the Australian approach to HIV care, and conceptualised the challenges currently inspiring debate around future models of care. Methods A thematic analysis was conducted of semistructured interviews carried out in 2010 with 24 professionals holding senior roles in government, non-government and professional organisations that influence Australian HIV care policy. Results The strengths of the role of the GP were described as their community setting, collaborative partnership with other medical and health professions, and focus on patient needs. A number of associated challenges were also identified including the different needs of GPs with high and low HIV caseloads, the changing expectations of professional roles in general practice, and barriers to service accessibility for people living with HIV. Conclusions While there are many advantages to delivering HIV services in primary care, GPs need flexible models of training and accreditation, support in strengthening relationships with other health and medical professionals, and assistance in achieving service accessibility. Consideration of how to support the GP workforce so that care can be made available in the broadest range of geographical and service settings is also critical if systems of HIV care delivery are to be realistic and cost-effective and meet consumer needs.

‘Everything is okay’: The influence of neoliberal discourse on the reported experiences of Aboriginal people in Western Australia who are HIV‐positive

While Australian Aboriginal conceptions of health have been described as holistic and collective, contemporary approaches to health services and health research are often premised on the rational, reflexive subject of neoliberal discourse. This paper considers how neoliberal conceptions of health and subjectivity arose and were negotiated in the context of a qualitative research project on Aboriginal experiences of HIV in Western Australia. Questions about ‘coping’, ‘future’ and ‘life changes’ stood out in the interview transcripts as examples of neoliberal discourse. This paper explores the reflexive, contextual and deflective responses to these questions and suggests they demonstrate how neoliberal discourse can produce the impression that ‘everything is okay’ despite the difficult social and economic conditions of everyday life experienced by many Aboriginal people. Aboriginal people with a chronic and serious infectious disease such as HIV may utilise the language of self‐management and responsibility when talking about HIV with a non‐Aboriginal researcher for pragmatic and utilitarian reasons. In this way, the responses of the Aboriginal participants in this study provide a valuable opportunity for exploring new approaches to both research methodology and health service delivery.

Health literacy in relation to cancer: addressing the silence about and absence of cancer discussion among Aboriginal people, communities and health services

Cancer outcomes for Aboriginal Australians are poorer when compared with cancer outcomes for non-Aboriginal Australians despite overall improvements in cancer outcomes. One concept used to examine inequities in health outcomes between groups is health literacy. Recent research and advocacy have pointed to the importance of increasing health literacy as it relates to cancer among Aboriginal people. This study examined individual, social and cultural aspects of health literacy relevant to cancer among Aboriginal patients, carers and their health workers in New South Wales. Qualitative interviews were conducted with 22 Aboriginal people who had been diagnosed with cancer, 18 people who were carers of Aboriginal people with cancer and 16 healthcare workers (eight Aboriginal and eight non-Aboriginal health workers). Awareness, knowledge and experience of cancer were largely absent from peoples lives and experiences until they were diagnosed, illustrating the need for cancer awareness raising among Aboriginal people, communities and services. Some beliefs about cancer (particularly equating cancer to death) differed from mainstream Western biomedical views of the body and cancer and this served to silence discussion on cancer. As such, these beliefs can be used to inform communication and help illuminate how beliefs can shape responses to cancer. Participants proposed some practical strategies that could work to fill absences in knowledge and build on beliefs about cancer. These results were characterised by a silence about cancer, an absence of discussions of cancer and an acknowledgement of an already full health agenda for Aboriginal communities. To promote health literacy in relation to cancer would require a multi-layered programme of work involving grass-roots community education, workers and Board members of Aboriginal community-controlled health organisations and speciality cancer services, with a particular focus on programmes to bridge community-based primary care and tertiary level cancer services.

Cancer and Aboriginal people in Australia: A review of the literature

This paper provides a thematic review of the literature on cancer in Aboriginal people in Australia, focusing on experiences in diagnosis, treatment and care as well as addressing sociocultural factors to guide the public health response to poorer treatment outcomes. A search of both medical and social scientific databases for journal articles published between 1995 and 2006 show that cancer incidence and possibly survival and mortality data are likely to be underestimated in Aboriginal people. Aboriginal people are more likely to die from cancer than non-Aboriginal Australians. There are significant differences between the cancer experiences of those living in the city and in rural or remote areas. There is also a relative absence of literature on cancer in Aboriginal men, who are likely to have particular needs during diagnosis, treatment and care. In drawing conclusions from these data, it can be seen that Aboriginal people with cancer have poorer outcomes than non-Aboriginal Australians, and there is a need for further research in the patterns of care and predictors of outcomes in Aboriginal men and women with cancer. Particular attention should be given to the different needs and experiences of Aboriginal people in urban or rural/remote areas. These findings indicate an urgent need to allocate additional resources to the treatment and care of Aboriginal people with cancer, in addition to screening interventions. There is also a continuing need to acknowledge cultural differences in the health beliefs of Aboriginal people and to work in partnership with Aboriginal community controlled health organisations.

One size fits all? The discursive framing of cultural difference in health professional accounts of providing cancer care to Aboriginal people

Objectives. Cancer is the second biggest killer of Aboriginal Australians. For some cancers, the mortality rate is more than three times higher in Aboriginal people than for non-Aboriginal people. The Aboriginal Patterns of Cancer Care Study explored barriers to and facilitators of cancer diagnosis and treatment among Aboriginal and Torres Strait Islander people in New South Wales. Design. Our team – which includes both Aboriginal and non-Aboriginal researchers – conducted in-depth interviews between 2009 and 2010 with Aboriginal people with cancer, their carers and health professionals who care for them. In this paper, we identify recurrent patterns of ‘discursive framing’ in the 16 interviews with health care professionals. We are particularly interested in how these frames assisted participants in constructing a professional position on what ‘cultural difference’ means for the design and delivery of cancer care services to Aboriginal people. Results. Despite geographical, organisational, disciplinary and cultural diversity, these interview participants consistently drew upon six discursive frames, which we have interpreted as either eliding a discussion of difference (‘everyone is the same’ and ‘everyone is different’) or facilitating that discussion (‘different priorities,’ ‘different practices’ and ‘making difference safe’). An additional strategy appeared to actively resist either of these positions but then tended to ultimately prioritise the eliding frames. Conclusions. While none of our participants were dismissive of the idea that cultural identity might matter to Aboriginal people, their reliance upon familiar narratives about what that means for cancer care services has the potential to both symbolically and practically exclude the voices of a group of people who may already feel disenfranchised from the mainstream health care system. Critically unpacking the ‘taken for granted’ assumptions behind how health care professionals make sense of cultural difference can enrich our understanding of and response to the care needs of indigenous people affected by cancer.

When HIV-Positive Children Grow Up: A Critical Analysis of the Transition Literature in Developed Countries

Young people with perinatally acquired HIV are routinely problematized in the research literature as inadequately equipped to manage transition to adolescent sexuality and adult clinical care without comprehensive interventions, partly because of challenges associated with adolescence itself, and partly because of neurocognitive and psychosocial dysfunctions commonly attributed to these children. However, little is actually known about this population, given their recent emergence in the HIV epidemic. Using critical discourse analysis, we argue that several problematic assumptions operate in this literature, hampering the objective of understanding these young people. Our analysis can contribute to a reframing of future research on HIV-positive adolescents, by encouraging greater attunement to the experiences of the adolescents themselves and to the discursive meanings that underpin research agendas, so that different and more productive questions can be asked and answered.