Ethical Space for a Sensitive Research Topic: Engaging First Nations Women in the Development of Culturally Safe Human Papillomavirus Screening

• Main Authors: Zehbe, Ingeborg, Maar, Marion, Nahwegahbow, Amy J., Berst, Kayla SM, Pintar, Janine
• Format: Article in Journal/Newspaper
• Language: English
• Published: Waakebiness-Bryce Institute for Indigenous Health 2013
• Subjects: Cervical cancer screening; Pap smear; HPV test; participatory action research; ethical space; First Nations women; Canada; First Nations
• Online Access: https://jps.library.utoronto.ca/index.php/ijih/article/view/29013; https://doi.org/10.3138/ijih.v8i1.29013

Human papillomavirus (HPV) is a sexually transmitted infection (STI) and the main risk factor for cervical cancer. Cervical cancer is highly preventable with regular screening, especially when using HPV testing. In Canada, an up to 20-fold higher rate of this cancer has been reported in First Nations women compared to the mainstream population, possibly associated with under-screening, barriers to follow-up treatment, and a pervasive lack of access to culturally safe screening services. As a foundation for the development of culturally safe screening methods in First Nations communities in northwest Ontario, we have developed a participatory action research approach based on respectful and meaningful collaboration with First Nations women, community health care providers, and community leaders. Being mindful of the schism that exists between Western public health approaches to cervical cancer screening and First Nations women’s experiences thereof, we adopted Ermine’s interpretation of ethical space to initiate dialogues with First Nations communities on this sensitive topic. We used an iterative approach to continuously widen the ethical space of engagement through several cycles of increasing dialogue with First Nations stakeholders. This approach resulted in a rich exchange of knowledge between community stakeholders and our research team, leading to the development of a shared plan for First Nations HPV research. Because of this successful engagement process, a pilot study in one First Nations community in northwest Ontario has been completed and there is support from ten First Nations communities for a large-scale study involving up to 1,000 women. Ethical space served as the foundation for a meaningful dialogue in this participatory action research approach and can be adapted to fit other research projects in similar settings.