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 consi...

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Bibliographic Details
Published in:Supportive care in cancer 2023-09, Vol.31 (9), p.511, Article 511
Main Authors: Wigginton, B, Reeves, M M, DiSipio, T
Format: Article
Language:English
Subjects:
Analysis
Australians
Cancer
Cancer research
Cervical cancer
Endometrial cancer
Genital cancers
Gynecological cancer
Gynecology
Human subjects
Marketing research
Medical research
Medicine
Medicine & Public Health
Metastasis
Nursing
Nursing Research
Oncology
Oncology, Experimental
Ovarian cancer
Pain Medicine
Participation
Qualitative research
Rehabilitation Medicine
Uterine cancer
Women
Womens health
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Summary: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.
ISSN:0941-4355
1433-7339
1433-7339
DOI:10.1007/s00520-023-07979-x