The intersection of oral storytelling traditions and technology has given way to a compelling breast cancer research initiative that raises awareness and informs the co-design of health care services and supports, as well as empowering people with lived experiences to share their own unique stories. Through one remarkable project co-led by Dr. Elizabeth Mansfield, a Scientist at Trillium Health Partners’ Institute for Better Health (IBH), digital storytelling shines a light on seven personal and community experiences and touchpoints of breast cancer treatment and recovery.
This initiative brought together breast cancer survivors and advocates from Black and South Asian communities in the Peel Region in 2021 to develop short video narratives of personally significant moments in their health care and recovery journeys. Exploring breast cancer through an intersectionality lens recognizes that access to services, supports, resources and care experiences are informed by multiple and interacting social locations and identities (i.e. race, ethnicity, religion, age, sexuality, socioeconomic, linguistic, immigration status, housing, transportation).
For Andrea Hylton, one of the digital storytelling co-researchers, her hope in telling her story was to reach other Black women, as well as inform the understanding that Black women experience breast cancer differently than non-Black women. “There aren’t many resources, supports and services tailored to Black women,” she says. “Many health and social programs do not cater to our own unique experience.” Learning about barriers and opportunities for more inclusive and equitable breast cancer treatment and recovery services and supports was the impetus for this initiative. “The improvement and co-design of resources, services and systems supporting breast cancer screening, treatment and recovery must take place in partnership with Peel’s ethnoculturally diverse and racialized communities,” says Dr. Mansfield.
Digital storytelling offers a participatory approach to empower and support community members as they curate their own stories in collaboration with trained facilitators and project team members. “If even one of my words made a difference in someone’s life, I’ll feel as though I have achieved everything,” adds Nadia Aamir, a co-researcher from the South Asian community. Nadia, Andrea and the other community co-researchers met weekly over a two-month period to create videos capturing moments in their treatment and recovery.
Taking place through series of group workshops and individual and small group meetings, these inclusive group-based participatory methods are reported as prioritizing individual voices, lived experiences and community perspectives in research and knowledge translation initiatives. Importantly, this approach supports collaboration and agency as the community co-researchers own their digital stories and are decision-makers in sharing their stories through project-related opportunities, as well as their personal and professional networks. Nadia tells about sharing her digital story with a co-worker: “Her way of looking at me changed – she said she could feel my strength,” she says.
Through these first-person narrated digital stories, the co-researchers with lived experience explored themes related to systemic racism, strengths-based recovery, family support and community advocacy, shared decision-making, gendered and family friendly service preferences and cultural stigma associated with breast cancer. “It is crucial that women from diverse ethnocultural communities can see themselves alongside the services they access. This includes greater representation within the service provider sector, culturally responsive resources and services that are co-designed with community members,” says Dr. Mansfield. “Screening, education, treatment and recovery services need to be flexible and innovative and meet women in their communities so that they can be inclusive and equitable.”
Socially inclusive arts-based methods such as digital storytelling are strengths-based approaches that can support community engagement, advocacy and networking. By opening their hearts and sharing their experiences, Nadia, Andrea, and their fellow co-researchers, support pathways for community members with lived/living experience to shape and direct health and social care reform agendas that are embedded in local knowledge. “It cracked my heart wide open. I would definitely do it again,” says Nadia, remarking on the experience of meeting her amazing co-researchers and making beautiful life-long connections. “We are a sisterhood,” adds Andrea. “Although we all had different experiences with breast cancer, it feels good to have people who can understand what you’ve been through, and who can relate to your worries and what-ifs.” Those involved in the initiative continue to collaborate and work together, as well as looking ahead to creating a Peel Women’s Health Storytelling Collective.
The Project was supported by Trillium Partners Foundation with the guidance and leadership of Dr. Robert Reid, Hazel McCallion Research Chair in Learning Health Systems and Chief Scientist, IBH, and Senior Vice President Science, THP. Dr. Elizabeth Mansfield and Dr. Nafeesa Jalal co-led this initiative with the support of Chelsea D’Silva and community co-researchers June Buckle, Maxine Thompson, Debbie Pottinger, Nadia Amir, Geeta Shetty, Andrea Hylton and Shakeela Azmat. The team collaborated with Rani Sanderson and Denise Gantt, digital storytelling facilitators with StoryCentre Canada. Dr. Susan Law and Dr. Michelle Marcinow supported the creation of project webpages on the Health Experiences Canada website.