Addressing the silence about and absence of cancer discussion among Aboriginal communities in NSW
Treloar C, Gray R, Brener L, Jackson C, Saunders V, Johnson P, Harris M, Butow P & Newman C. E. (2013) Health and Social Care in the Community, 21(6), 655-664.
This paper examines individual, social and cultural aspects of health literacy in relation to cancer among Aboriginal people, communities and Aboriginal community controlled health organisations in NSW.
Health literacy refers to how people understand health and health care information, apply that information to their lives, use it to make decisions and act on it. It is important because it helps shape peoples health, the quality of their health care and their health outcomes, with lower levels of health literacy seen to contribute to poorer health outcomes.
Why is this research important?
Cancer is the second most common cause of death for Aboriginal people, with Aboriginal people 60% more likely to die from their cancer than non-Aboriginal people. Despite this difference, there has been little previous research into Aboriginal people’s experience of cancer.
Health literacy is one way of looking at differences in health outcomes between groups. By examining Aboriginal people’s understanding of cancer and cancer care, this research will provide important insights into their cancer screening, treatment and support decisions. These insights could be used to inform future Aboriginal health programs and communication strategies, which could more effectively engage Aboriginal communities and people in cancer care and treatment.
How was this research done?
This research formed the qualitative arm of the Aboriginal Patterns of Cancer Care Project (APOCC) and was conducted by a team of Aboriginal and non-Aboriginal researchers with expertise in qualitative health research. Qualitative research gathers in depth understanding of human behaviour and investigates the ‘why’ and ‘how’ of decision making.
For this research Aboriginal interviewers invited participants to talk at length about their understanding and thoughts about cancer as well as their personal and/or professional experiences of cancer. Interviews were conducted with 22 Aboriginal people who had experienced cancer, 18 carers of Aboriginal people (14 identified as Aboriginal) and 16 health care workers (8 identified as Aboriginal) with a range of professional roles in cancer care and Aboriginal health. The interviews were conducted through visits to a number of Aboriginal Medical Services, Hospital Oncology (cancer) and Palliative (end of life) services across NSW.
To ensure that appropriate cultural protocols were followed, an Aboriginal Elder was employed to act as cultural advisor and mentor to the research team.
What were the results?
Limited cancer awareness, knowledge and experience was a common theme among all the people interviewed. Many described cancer as new to their community, and said that they did not expect to experience cancer in their lifetimes. These beliefs and a strong community fear of cancer as a ‘death sentence’ silence discussion of cancer in Aboriginal communities, and act as barriers to screening, treatment and support. Discussions around cancer were further silenced by the commonly held view that other health conditions, such as diabetes and heart disease, were a higher priority for Aboriginal communities.
Recognising susceptibility to cancer
It was identified that the absence of Aboriginal people in public cancer campaigns suggests it is not a high priority health issue. This also acts as a barrier to screening, treatment and support. Cancer awareness campaigns have developed an understanding among many Australians that cancer will touch their lives, either through their own experience or within their family. However, Aboriginal people felt that those messages were not directed at their communities and were therefore not relevant to them. Many interviews described cancer as a ‘big silent word.’ This silence around cancer allows myths to quickly develop, making people hesitant to have surgery or get treatment.
Opportunities to learn from each other
Myths are powerful as they influence the way we think about things of which we might not have direct experience. It is hoped that this research can be used to inform future health communication strategies to raise awareness of the causes, symptoms, available services and ways to support people living with the disease. This research also provides opportunities for health workers to understand the psychological barriers that may prevent Aboriginal people accessing proper cancer care.
- Promoting health literacy in relation to cancer would require grass-roots education within community settings to redress misunderstandings equating cancer with death
- Education for health workers in both Aboriginal community-controlled health organisations and speciality cancer services about how to better engage with Aboriginal communities
- Programmes to bridge community-based primary care and tertiary level cancer services
- The notion of screening as detecting cancer before it occurs requires clarification and better promotion
Read the full article
Addressing the silence about Health literacy (PDF 150Kb)
This work was produced by the Centre for Social Research in Health, University of New South Wales as part of the Aboriginal Patterns of Cancer Care Project (APOCC) which was funded by a National Health and Medical Research Council Health Services Research grant.