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I am my Sister's Keeper: A Community-Engaged Research Project to Explore Perceptions of Hereditary Cancer Risk
Crystal Lumpkins1,2, Paula Smith1, April Law2
1University of Utah, USA.
Abstract:
Black American (BA) women continue to experience cancer disparities in the US. These disparities warrant innovative ways to prevent cancer. Hereditary Cancer Risk Assessment (HCRA) is a cancer prevention approach that is available but not well known among BA. This pilot study aimed to explore attitudes, perceptions, and beliefs about cancer and HCRA among BA women in the Mountain West and to inform a future health promotion trial. A community-based participatory research approach was employed to engage with predominately Black organizations that have served the region for several years. Women (N=24) participated in one of five focus groups between September 2023 and April 2024. In a pre-survey, nearly half of participants responded 'yes' to a question about whether they were at risk for cancer; however, the majority responded that they had never talked to a medical provider about an HCRA akin to a family health history. Focus group discussions were guided by health behavior and communication theory but grounded in participants' cancer experiences. Themes included: (1) Limited Awareness about HCRA (2) Centering Faith When Experiencing Cancer; (3) Social Support when Experiencing Cancer (4) Limited Control to address Cancer Risk Factors (particularly Breast Cancer), and (5) Racialized Healthcare Experiences. Black organizations that are community-service oriented and accessible in these communities are well-positioned to serve as trusted conduits of HCRA information dissemination among BA women in the Mountain West. Finally, more must be explored in HCRA and cancer prevention promotion to increase cancer screening and reduce inequities among BA women.
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