Enhancing the care experiences of Black women along the breast cancer journey: Meaningfully engaging breast cancer survivors to co-create a targeted, culturally relevant resource hub

Abstract

There is very little tailored and culturally relevant information available for Black women in Canada around breast cancer. For those who are diagnosed, and who undergo their own breast cancer journey, many feel isolated while navigating care programs that centre around whiteness and perpetuate medical and anti-Black racism. Although it is well-documented that Black women in the United States are often diagnosed with more aggressive forms of cancer and at a younger age, the lack of race-based data in the Canadian context makes it difficult to know for certain how women in Canada are affected. In order to provide trusted, reliable and tailored information, The Peter Gilgan Centre for Women’s Cancers at Women’s College Hospital, in partnership with the Olive Branch of Hope, developed a resource hub that was the first of its kind in Canada, and launched during Black Liberation Month in 2022. Presented in the form of a website and disseminated to over 50 cancer centres and hospitals across the country, components of this resource included, a.) a synthesis of all available evidence on breast cancer disparities for Black women in Canada, mapped to actionable steps b.) representative images and videos of Black clinicians explaining concepts in plain language (from risk factors to reconstruction), c.) community resources compiled from the Olive Branch of Hope and d.) a list of relevant research studies and clinical trials. Guided by principles of Black Feminism and Participatory Action Research, this resource was co-created in partnership with four Black women who were breast cancer survivors (‘co-creators’) who channeled their lived experiences into the project direction. This paper aims to highlight our process with co-creators, discuss key reflections to guide future work and highlight the need for ongoing work in this area.