“I call this quilt my ‘Eagle at Rest.’ This is me, new and improved after going through cancer. I have the creativity now. I feel really connected to who I am again.”
Karen’s words and her quilt convey her feelings of strength and her experience of transformation after breast cancer. The ‘Eagle at Rest’ was the final quilt she discussed during a sharing session associated with our study. As Karen discussed her collection of quilts, she described the challenges she faced from diagnosis onward. All of her quilts contained elements of spirituality. Strengths such as spirituality, along with various challenges, represent key themes of our interdisciplinary team’s qualitative exploration of cancer experiences among First Nations and Métis peoples in Canada.
Over time, First Nations, Inuit and Métis peoples have experienced increased cancer rates compared to non-Indigenous peoples.[1,2] Cancer care support is also lacking for Canada’s Indigenous peoples; less than 50% of First Nations communities have cancer programs or services. In the healthcare system, Indigenous peoples often struggle with racism, financial disadvantages, and mistrust founded upon historical trauma and discrimination. Yet those who participated in our study also showed how various strengths and community resources helped with healing.
Our program of research began with a study with First Nations and Métis breast cancer survivors in Saskatchewan. Along with the scope of the study, our team then expanded. Researchers and collaborators from the Universities of Ottawa, Saskatchewan, and New Brunswick, and Saint Elizabeth’s First Nations, Inuit and Métis Program developed a research partnership to better understand common challenges, barriers, and strengths in relation to Indigenous cancer survivorship. A related goal was to understand and document the systemic factors affecting survivors’ physical, mental, social, and spiritual well-being. Our team used personal interviews and group sharing sessions along with participatory, arts-based research methods including photovoice and reflective writing to address our study objectives. In total, 87 people (survivors and caregivers) participated across five communities in Quebec, Ontario, and British Columbia.
Not surprisingly, each community was unique in its culture, traditions, location, and size. Yet, many of the challenges people spoke about were similar across the communities. Some of the major themes of the project address Indigenous perspectives on healing (e.g., emotional healing, spirituality, traditional medicines), sources of community support, and structural barriers to accessing cancer care (see Pamela’s photo). Based on participants’ words, photos, and writing, we prepared a poster to summarize these themes. We then shared the poster with participating communities and key stakeholders. We integrated their feedback on the poster’s content, design, and message into an updated poster. Participants’ recommendations highlighted the importance of hope and holistic healing in reducing the stigma and fear of cancer within their communities. Based on this feedback, we also compiled the stories and photos that were shared with us into a video that is freely available on YouTube.
At this time, our team is still working on the interpretation of the findings from the study. One initial and important finding is connected to the complex issue of Indigenous people’s silence around cancer. Participants revealed social, historical and institutional barriers to speaking about cancer and finding/providing support; many participants had to leave their families for extended periods of treatment. Even in urban settings, participants discussed gaps in culturally respectful care. Practices of colonization were also linked to silence, which for some participants was rooted in residential school experiences.
However, participants also illustrated their resourcefulness in the face of systemic and historically rooted challenges. These examples of strength and resilience included subtle forms of communication, community caregiving, and resistance to colonization. For instance, some participants said it was important not to treat silence solely as a barrier to care, as Indigenous peoples, particularly Elders, often say a lot in a few words. As another example, telling their stories in community settings helped many participants overcome silence and benefit from the sharing of experiences (see Brenda’s photo). Community members also found non-verbal ways of supporting people with cancer, like delivering food to families and making cash donations to relieve the financial burdens of cancer. These examples show that silence is a complex topic, connected both to barriers in supportive care, but also to strengths. Some participants suggested that health practices might be improved if caregivers and healthcare practitioners understood the role of silence.
Research shows that the integration of cultural safety into healthcare may help to address the impacts of colonization, displacement, and racism on Indigenous health. Our research shows that silence around cancer reflects gaps in culturally safe health care, as well as the impact of oppression, but that silence may also be understood in positive ways that could foster further developments in culturally safe care.
- Canadian Partnership Against Cancer. First Nations, Inuit, and Métis Action Plan on Cancer Control. Toronto, ON: CPAC 2011.
- Marrett LD, Chaudhry M. Cancer incidence and mortality in Ontario First Nations, 1968–1991 (Canada). Cancer Causes and Control 2003; 14: 259-268.
- Saint Elizabeth First Nations, Inuit, and Métis Program. “Walk a Mile in My Moccasins”, Foundations for Action in First Nations Cancer Control. Winnipeg, MB: Saint Elizabeth Health Care 2012.
- Poudrier J, Thomas R. “We’ve fallen into the cracks”: A photovoice project with Aboriginal breast cancer survivors. Nursing Inquiry 2009; 16: 306-317.
- Thomas R, Gifford W, Poudrier J et al. First Nations, Inuit, and Métis women’s experiences of cancer survivorship: Protocol for the National Picture Project. International Journal of Qualitative Methods 2015; 14: 98-120.
- Hammond C,Thomas R, Gifford W, Poudrier J, Hamilton R, Brooks C, Morrison T, Scott T, and Warner D. Cycles of silence: First Nations women overcoming social and historical barriers in supportive cancer care, Psycho-Oncology, (accepted), doi: 1002/pon.4335.
- Smye V, Browne AJ. ‘Cultural safety’and the analysis of health policy affecting aboriginal people. Nurse Researcher 2002; 9: 42-56.
Wendy Gifford (Co-PI), Assistant Professor, School of Nursing, University of Ottawa