ANAHEIM, CALIFORNIA—African American women have the highest breast cancer mortality rate compared with women of other ethnic groups. In addition, African American women are less likely to undergo genetic counseling if they have a first-degree relative with a premenopausal breast cancer diagnosis. Implications for patient family education needed to be better understood. This project was presented at the Oncology Nursing Society (ONS) 39th Annual Congress.
To test their hypothesis, Julie Griffie, MSN, RN, AOCN, ACNS-BC, and colleagues, Froedtert Hospital in Milwaukee, Wisconsin, conducted a community-based participatory research (CBPR) project using focus group methodology. Four focus groups of first-degree relatives of premenopausal African American breast cancer survivors were conducted, audio recorded, and verbatim transcribed. Utilizing content analysis procedures, focus group data was coded (beginning with line-by-line coding, followed by axial coding) and reviewed to assure rigorous, systematic, and comparative analysis of emerging themes. Focus group moderators assisted to assure content validity. The overriding finding was a lack of knowledge about genetics and its possible impact on personal health care among the participants.
A collaborative group of local health care agency professionals, educational institutions, Sisters’ Network, community health workers, and community members developed a documentary film showcasing the stories of local women who survived breast cancer as an educational tool for the community. The video, “Sharing the Wisdom: The Legacy of Breast Cancer,” also provides information about risk and genetic testing alongside messages about overcoming fear, early detection, body image, and the importance of not keeping it a secret. The film contains segments on reaction to diagnosis, early detection, family history, body image after breast removal and reconstruction, and knowing your options.
A letter was drafted and sent to more than 550 community health workers (CHWs) describing the video and how it could be used in the community with complimentary materials from the American Cancer Society (ACS). The documentary has been disseminated to approximately 300 community members and is available online at http://www.mcw.edu/Our-Living-Legacy-Healthier-Communities/Research-changes-views-on-breast-cancer.htm#video.
Funding support was provided by the American Cancer Society.