Oral Presentation Clinical Oncology Society of Australia 2014 Annual Scientific Meeting

Health literacy in relation to cancer: Addressing the silence about and absence of cancer discussion among Aboriginal people, communities and health services (#20)

Carla Treloar 1 , Rebecca Gray 1 , Loren Brener 1 , Clair Jackson 1 , Veronica Saunders 1 2 , Priscilla Johnson 1 3 , Magdalena Harris 1 4 , Phyllis Butow 5 , Christy Newman 1
  1. National Centre in HIV Social Research, The University of New South Wales, Sydney, NSW, Australia
  2. Cancer Council NSW, Sydney, NSW, Australia
  3. Aboriginal Mental Health Unit, Camperdown Community Health Centre, Sydney, NSW, Australia
  4. The Centre for Research on Drugs and Health Behaviour, London School of Hygiene and Tropical Medicine, London, UK
  5. Centre for Medical Psychology & Evidence-based Decision-Making, The University of Sydney , Sydney, NSW, Australia

Introduction and Aims
Cancer outcomes for Aboriginal Australians are poorer when compared with cancer outcomes for non-Aboriginal Australians despite overall improvement in outcomes. One concept used to examine inequities in health outcomes between groups is health literacy. Recent research and advocacy has 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.

Methods
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 health care workers (eight Aboriginal and eight non-Aboriginal health workers).

Results
Awareness, knowledge and experience of cancer was 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 serviced to silence discussion about 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.

Discussion and Conclusions
These results were characterized by a silence about cancer, an absence of discussions of cancer and acknowledgement 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 specialty cancer services, with a particular focus on programmes to bridge community-based primary care and tertiary level cancer services.