Cervical cancer services for Indigenous women: advocacy, community-based research and policy change in Australia

Abstract

Collaborative research undertaken in the state of Queensland, Australia, resulted in major changes in cervical cancer screening and treatment for Indigenous women. Guided by an Indigenous statewide reference group and with an Indigenous researcher playing a lead role, qualitative data were collected using interviews, focus groups, larger community meetings; and case studies were conducted with health workers and community members from diverse rural, remote and urban communities, to explore the different cultural and structural factors affecting understanding and awareness of cervical cancer and Indigenous women's use of and access to health services for screening, diagnosis and treatment. These data were supplemented by an analysis of clinical data and health service checklists. We discuss the methodology and summarize the key social and structural factors that discourage women from presenting for screening or returning for follow-up. These include women's misunderstanding of cervical cancer screening, fear of cancer, and distrust of health services, poor recall and follow-up systems, and the economic and social burden to women to presenting for treatment. We describe how the research process and subsequent activities provided Indigenous women with a vehicle for their own advocacy, resulting in important policy and program changes.