Community-Based Participatory Research to Address the Disproportionate Burden of Breast Cancer in Black Women.

Abstract

Objective: Black/African American women with breast cancer have disproportionately higher mortality rates and report experiencing a lower quality of life during survivorship compared to non-Hispanic white women. Despite support for the integration of peer navigation in cancer care and survivorship to address these inequities, Black/African American women often have limited access to culturally tailored peer navigation programs. We aimed to investigate the unique needs and strengths of Black/African American women with breast cancer and survivors to inform the development of a culturally tailored peer navigation program for Black/African American women.

Methods: We developed a community-university partnership based on best practices of community-based participatory research. The partnership conducted storytelling sessions with Black/African American survivors of breast cancer and their caregivers and key informant interviews with community partners and applied thematic analysis.

Results: A total of 14 survivors and 4 caretakers took part in storytelling sessions and 6 community partners took part in key informant interviews. Themes from the storytelling sessions included spirituality, social support, information seeking, and relationship with care team. These themes were then incorporated into developing the theoretical basis, structure, and content of the BLACC peer navigation program. The key informant interviews were instrumental in building new partnerships to support the implementation of the peer navigation program.

Conclusions: The community-university partnership successfully identified the unique needs and strengths of Black/African American women who either had breast cancer or were survivors of breast cancer, identified valuable resources, and secured buy-in from community leaders to develop a comprehensive peer navigation program.