Abstract A040: “Don’t tell anybody I have breast cancer, they gonna tell everybody! I don’t want my business in the street”: Patterns of secrecy regarding breast cancer among African American breast cancer survivors

Abstract

Abstract Introduction: African American women suffer disproportionately from breast cancer relative to other women. One potential contributing historic and cultural factor regards a need for privacy and non-disclosure of disease experiences. This study was a first step to characterize the diffusion of personal breast cancer information throughout African American women’s social networks. Methods: This is a secondary analysis of the Offering African Survivors Increased Support (OASIS) study, which compares the survivorship experiences of women who were/were not navigated throughout diagnosis and treatment. To be eligible, participants had to be: 1) diagnosed within 2011-2014 at Advocate Health in Chicago, IL; 2) female; 3) 18 years or older; and, 4) African American. Trained interviewers conducted 60-90 minute interviews in participants’ homes, libraries, or office spaces, wherein they administered a modified version of Burt’s General Social Survey instrument regarding communication during breast cancer diagnosis and treatment. Results: Approximately 27% of our 33 participants were 50-74 years old, 39% had a bachelor’s degree or greater level of education, and 76% were retired. Overall, 157 family and friends identified as individuals with whom survivors were close during the period of diagnosis/treatment. Survivors disclosed their breast cancer diagnosis to 81% of these individuals, of which 81% were female, 31% were relatives, and 44% communicated with survivors on a daily basis. Qualitative analysis suggest: 1) disclosure was not aligned with fear of disease or a lack of self-assurance/ideology as a strong black woman; rather, disclosure was rooted in societal norms and acceptance of vulnerabilities of black women. Qualitative findings also suggested this disclosure led to a syndrome of silence and level of secrecy too difficult to unravel, fostering a lifetime of secrecy. Conclusion: Our preliminary data have important implications regarding how rising breast cancer incidence rates and breast cancer interventions for African Americans may not necessarily result in increased community knowledge and exchange of evidence-based, personally experienced information about breast cancer. Ongoing analyses will explicitly identify family and friends who were not engaged about breast cancer and reasons for non-disclosure. Citation Format: Desmona C Strahan, Nyahne Bergeron, Shaila Strayhorn, Aditya Khanna, Dana Villines, Karriem S WatsonY, Yamilé Molina. “Don’t tell anybody I have breast cancer, they gonna tell everybody! I don’t want my business in the street”: Patterns of secrecy regarding breast cancer among African American breast cancer survivors [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr A040.