Exploring motivations for participating in research among Australian women with advanced gynaecological cancer: a qualitative study

PURPOSE: With global moves to increase research among those living with advanced cancer and legitimise consumers as part of cancer research, this article aims to build an understanding of women’s motivations and reasons for participating in gynaecological cancer research. As a secondary aim, we considered the role of qualitative methods in enabling active involvement of consumers in research. METHODS: We applied thematic discursive analysis to 18 in-depth interviews with women diagnosed with advanced (stage III–IV) gynaecological cancer living in Australia. RESULTS: We found that women viewed research as a vehicle for change in two directions: improving the lives of future generations and improving education and awareness. Underpinning these two framings of research, women spoke about their own role and reasons for participating in this interview study. Women’s stories were painted against a backdrop of social and medical silences around gynaecological cancer. It was from such silence that women chose to speak up and position themselves as participating in service for knowledge production. CONCLUSION: We learned that trust, reciprocity and relationships are central to women’s decisions to participate in cancer research. Legitimising consumers in cancer research requires methods, methodologies and practices that pay careful attention to power, control and representation. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00520-023-07979-x.