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.

"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.