Colonial legacy and the experience of First Nations women in cervical cancer screening: a Canadian multi-community study

Abstract

Regular Papanicolaou (Pap) screening has dramatically reduced cervical cancer incidence in Canada since the 1950s. However, Indigenous women’s rates of cervical cancer remain disproportionately high, a factor which is not acknowledged in national media or in educational materials reporting Canada’s new cervical cancer screening guidelines. Here, we present findings from a cervical cancer screening initiative in Northwestern Ontario. Based on participatory action research, we worked with 10 First Nations communities in the Robinson Superior Treaty area to increase awareness of cervical cancer risk, develop culturally sensitive tools for screening and education and test the efficacy of human papillomavirus (HPV) self-sampling as an alternative to Pap cytology. We conducted 16 interviews with health care professionals and 9 focus groups with 69 women from the communities. A central theme for both health care providers (HCPs) and community members was the colonial legacy and its influence on women’s experiences of cervical cancer screening. This was evidenced by a strong sense of body shyness, including shame related to sexuality and sexually transmitted infections, concerns about confidentiality in clinical encounters and distrust or caution around HCPs. Reaffirming women’s traditional caregiving and educational roles, enhancing mother and daughter communication, improving cultural sensitivity in health care and education and adoption of HPV self-sampling to increase women’s privacy and control of the cervical cancer screening experience were endorsed. We argue that education and screening initiatives must reflect the cultural preferences of Indigenous women, empowering them to take control of their experiences of health and body in cervical cancer screening.

Keywords:

• cervical cancer screening
• First Nations women
• gender and embodiment
• colonial legacy
• participatory action research

Acknowledgements

Our sincerest thanks are conveyed to all HCP interviewees and focus group participants for their insight and for sharing their knowledge with the ACCSS research team as well as to the health directors, the chiefs and council members of the Robinson Superior First Nations communities for continuous support of our work. We also acknowledge the contributions of Dr Marion Maar (NOSM) to earlier phases of the ACCSS project and the interview and focus group data collection. Finally, we thank the other members of the ACCSS group (Ann N Burchell, Nicholas Escott, Ian Graham, Julian Little, Gina Ogilvie, Pauline Sameshima, Alberto Severini), our community reviewers and Dr Kristin Burnett (Lakehead University) for their critical reading and helpful comments on the manuscript as well as Ms Lisa Boesch (NOSM) and Ms Mary Young (University of Toronto) for the verbatim transcriptions of focus groups and interviews.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The ACCSS was initially funded by the Northern Cancer Fund, Thunder Bay Regional Health Sciences Centre and is currently funded by the Canadian Institutes of Health Research [MOP-119344]. The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript. LU REB approval [#038 11–12/ROMEO #1462079 and 12–13/ROMEO #1463139].