Original Research

'We just don’t talk about it’: Aboriginal and Torres Strait Islander peoples perceptions of cancer in regional Queensland

AUTHORS

Judith A Meiklejohn1 MAppSci, Research Assistant

Brian D Arley2 BA, Scientific Officer

Gregory Pratt3 BSc (Applied Psych), Manager of Aboriginal and Torres Strait Islander Health Research

Patricia C Valery4 PhD, Associate Professor

Christina Maresch Bernardes5 PhD, Research officer *

AFFILIATIONS

1, 3, 5 QIMR Berghofer Medical Research Institute, Locked Bag 2000, Royal Brisbane Hospital, Queensland, Australia

2 QIMR Berghofer Medical Research Institute, Locked Bag 2000, Royal Brisbane Hospital, Queensland, Australia; and Wellbeing and Preventable Chronic Diseases Divison, Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia

4 QIMR Berghofer Medical Research Institute, Brisbane, QLD, Australia; and Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia

ACCEPTED: 17 March 2019


early abstract:

Introduction: Disparities in cancer outcomes between Indigenous and non-Indigenous people are well reported. Some Australian Indigenous communities beliefs about cancer may influence health behaviours, support for those with cancer and ultimately, treatment outcomes. This project was instigated by request of a cultural adviser from a regional Queensland community and aims to make community perceptions of cancer visible; facilitate development of resources representing these perceptions; and briefly evaluate the project from the community’s perspective.   

Methods: The project was guided by qualitative, participatory and visual research methodology.  Community participation was engaged by identifying community champions who helped recruit interested community members and continued project momentum. The project was defined and driven by community and a consensus decision making approach was used to select resources or activities to represent community perceptions of cancer and raise cancer awareness.  Qualitative data were collected from yarning groups at two community forums and subsequent group sessions to explore and define community perceptions of cancer. Informed consent was obtained prior to audio-taped yarning groups. Data was also included from publicly available interviews broadcast on radio and television. All data about community perceptions of cancer and of the project were thematically analysed. Photovoice using cameras was the visual method chosen to capture images and stories representing community cancer beliefs.

Results: Three main themes were derived from thematic analysis of data collected about community perceptions of cancer, identified by participants as important to improving cancer outcomes:(i) Silence in the community, (ii) Support is important for survivorship, and (iii) Awareness of cancer and the importance of sharing positive stories.  A consensus decision-making approach resulted in the community choosing two resources to stimulate community discussion about cancer, raise awareness and reduce stigma. These were creating a community quilt with each quilt square representing community perceptions of cancer and producing a community calendar with messages promoting healthy behaviours and cancer screening.

The overall project was viewed as valuable for facilitating and improving the conversation about cancer with family, friends, the broader community and health professionals. Group sessions were considered important for providing a shared, safe space for support, for asking health related questions and as an instigator to share cancer-related knowledge and stories with others.

Conclusion: Silence around cancer may influence awareness and discussion about cancer, screening participation and help seeking behaviour in this community. In this project, engaging with the community created a safe space for conversation around a previously taboo topic that could potentially lead to improved screening and help seeking behaviour. The role of primary health care in reducing health disparities by partnering with community to conduct awareness and prevention activities and by providing culturally appropriate care for Indigenous people is emphasised.