Evaluation of the Deadly Liver Mob program: insights for roll-out and scale-up of a pilot program to engage Aboriginal Australians in hepatitis C and sexual health education, screening, and care.

BACKGROUND: Deadly Liver Mob (DLM) is a peer-driven, incentivised health promotion program aimed at increasing understanding of hepatitis C, promoting harm reduction in relation to injecting drug use, and linking participants to screening for hepatitis C, other blood borne viruses and sexually transmissible infections among Aboriginal people in Western Sydney, NSW. This paper presents the evaluation of a pilot study examining the acceptability of the program as a first step of a scalability assessment. METHODS: Deadly Liver Mob operated in co-located needle and syringe programs and sexual health clinics in two sites: (Site 1: two and a half years for 2 days/week; Site 2: 1 year for 1 day per week). Comparisons were made of the proportion of Aboriginal clients (Site 1) and occasions of service provided to Aboriginal clients (Site 2) in the 12 months prior and post-introduction of DLM. Interviews were conducted with 13 staff involved in delivery of DLM and with 19 clients. RESULTS: A total of 655 and 55 Aboriginal clients, respectively, attended Site 1 and Site 2 for health education. The proportion of Aboriginal clients attending both sites was significantly higher during the DLM compared with prior to its implementation. Of those attending for health education, 79 and 73%, respectively, attended screening following education. DLM clients strongly endorsed the program. Some staff were concerned about workforce capacity to effectively engage Aboriginal clients with multiple and complex needs, managing the differing aims of the participating services involved, and about offering of incentives for attendance at health services. CONCLUSION: While acceptability was high among staff and clients and preliminary results show high engagement with Aboriginal communities, this evaluation of a pilot program raises some issues to consider in scale up of DLM to other sites. The initiation of additional DLM sites should address issues of alignment with governing strategies and workforce capacity.

HCV knowledge among a sample of HCV positive Aboriginal Australians residing in New South Wales.

Australian Aboriginal and Torres Strait Islanders are overrepresented in both the prevalence and incidence of the hepatitis C (HCV). HCV knowledge has been associated with a range of positive health behaviours. HCV knowledge has previously been investigated as a single construct; however examining different knowledge domains (i.e. transmission, risk of complications, testing and treatment) separately may be beneficial. This study investigated whether having greater HCV knowledge in different domains is associated with self-reported positive health behaviours. 203 Aboriginal people living with HCV completed a survey assessing HCV knowledge, testing and care, lifestyle changes since diagnosis and treatment intent. Respondents' knowledge was relatively high. Greater knowledge of risk of health complications was associated with undertaking more positive lifestyle changes since diagnosis. Respondents testing and treatment knowledge was significantly associated with incarceration, lifestyle changes since diagnosis and future treatment intentions. This study illustrates the importance of ensuring that knowledge is high across different HCV domains to optimise a range of positive health behaviours of Aboriginal people living with HCV. Future health promotion campaigns targeted at Aboriginal people living with HCV could benefit from broadening their focus from prevention to other domains such as testing and treatment.

"I Had a Little Bit of a Bloke Meltdown But the Next Day, I Was Up": Understanding Cancer Experiences Among Aboriginal Men.

BACKGROUND: Although cancer in indigenous populations is receiving increased research attention, there is a gap in understanding the particular experiences of Aboriginal men. OBJECTIVE: The aim of this study is to integrate a range of primary and secondary accounts of the experiences of Aboriginal men in engaging with a cancer diagnosis and treatment in Australia. METHODS: Secondary analysis of qualitative interviews (n = 54) conducted between 2008 and 2011 revealed recurrent themes regarding the cancer experiences of Aboriginal men in a subset of participant interviews (n = 23). The analysis reports themes that spanned the accounts of Aboriginal men with cancer (n = 6) and those of their carers (n = 12) and clinicians (n = 5). RESULTS: Recurrent beliefs about the cancer experiences of Aboriginal men included that they "avoid seeking help" for health matters, including cancer symptoms, and to "get on with it," "not talk about it," and "manage without fuss" after a cancer diagnosis. Although some men described having to "accept vulnerability," emphasis was placed on appreciating men's desire to "protect cultural roles" and "connect with family and culture" throughout care and treatment, including through humor. CONCLUSIONS: Men's accounts of the experiences of cancer diagnosis and care reveal more than simply individual challenge, extending to encompass the very real social and economic implications of illness and vulnerability for Aboriginal men today. IMPLICATIONS FOR PRACTICE: Aboriginal men could be better engaged with cancer diagnosis and treatment if greater attention was paid to recognizing preferred approaches, including pragmatism and humor, and supporting connections to family and culture throughout the cancer journey.

Care and treatment of hepatitis C among Aboriginal people in New South Wales, Australia: implications for the implementation of new treatments.

INTRODUCTION: Despite Aboriginal Australians being over-represented in populations of people living with hepatitis C (HCV), there is a dearth of research to guide policy and programme development in the area of care and treatment, particularly relating to new HCV treatments. METHOD: In-depth interviews were conducted with 39 people identifying as Aboriginal Australians and living with HCV in New South Wales. RESULTS: Participants' experiences were characterised by a lack of detailed or appropriate information provided at diagnosis, high levels of stigma associated with HCV and low overall knowledge of HCV as reported for themselves and their communities. Despite poor diagnosis experiences, participants had undertaken changes to their lifestyle, especially in relation to alcohol use, in order to promote liver health. Concerns about treatment side effects and efficacy impacted participants' decisions to undertake treatment. Eleven participants had undertaken HCV treatment in a variety of care models with a peer worker and in prison. CONCLUSIONS: The similarities between concerns and experiences of Aboriginal people and other populations living with HCV do not suggest that services and strategies to engage these populations should also be the same. These results suggest that further engagement of the primary care sector in HCV care is important as well as increasing Aboriginal community knowledge of HCV. A variety of service models should be available to meet individuals' preferences, including those offered within Aboriginal community controlled health services emphasising holistic notions of health, and supported by information and communication programmes using principles of health literacy relevant to Aboriginal people.

Experiences of diagnosis, care and treatment among Aboriginal people living with hepatitis C.

OBJECTIVE: Aboriginal Australians are disproportionately affected by hepatitis C (HCV). There are a range of barriers to HCV care, often beginning with poor diagnosis experiences. Little research exists on the experiences of Aboriginal Australians living with HCV. This study aimed to describe their patterns of HCV care and treatment with specific emphasis on the impact of their being informed of their diagnosis in a culturally sensitive manner. METHODS: A total of 203 Aboriginal people living with HCV were recruited to complete a survey assessing experiences of HCV testing and care, HCV knowledge, lifestyle changes after diagnosis, perceived stigma and discrimination. RESULTS: Of the sample, 58% were male and 96% identified as Aboriginal, with a mean age of 28 years. Correlation analysis revealed that satisfaction with the cultural appropriateness of the diagnosis was associated with: being offered pre- and post-test counselling; satisfaction with HCV care; decreased feelings of HCV-related stigma; lower scores on the medical mistrust scale; and greater intentions to access HCV treatment. CONCLUSIONS: These findings confirm the importance of providing a HCV diagnosis in a culturally appropriate way for Aboriginal people. IMPLICATIONS: Satisfaction with HCV diagnosis appears essential in establishing patterns of greater engagement with HCV care and treatment for this group.

The role of Aboriginal community attachment in promoting lifestyle changes after hepatitis C diagnosis.

This research assessed whether greater attachment to an Aboriginal community buffers against the negative effects of stigma and promotes positive health outcomes. Aboriginal Australians (n = 203) living with hepatitis C completed a survey assessing community attachment, stigma, resilience, quality of life, treatment intent, hepatitis C knowledge and positive lifestyle changes. A stronger sense of community attachment was associated with greater resilience, increased quality of life, less hepatitis C-related stigma and with increased lifestyle changes after diagnosis. Hence, community attachment can buffer against the negative health effects of stigma and may promote the resources to engage in positive behaviour changes, ultimately increasing long-term health outcomes.

"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.

OBJECTIVES: Social 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. METHODS: Qualitative interviews were conducted with 22 Aboriginal people with cancer, 18 carers of Aboriginal people and 16 health care workers. RESULTS: Participants' 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. CONCLUSIONS: These 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.

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 people's 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.

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.