Abstract A22: Using community-based participatory research to develop a culturally relevant resource for African American women affected by breast cancer

Background: Research indicates that African-American women are more likely to die from breast cancer, be diagnosed at later stages and receive worse care than their white counterparts. In 1997, Living Beyond Breast Cancer (LBBC) wrote the booklet, Getting Connected: African-Americans Living Beyond Breast Cancer to address these issues. Changes over the last decade in breast cancer treatment, research on cancer disparities, and perceptions of breast cancer among African-Americans motivated LBBC to undertake a full revision of Getting Connected. In 2010 LBBC conducted a comprehensive, consumer-driven needs assessment engaging African-American women affected by breast cancer from across the country. Methods/Approach: LBBC engaged stakeholders across the breast cancer continuum in the revision. The process included 1) Convening a national advisory committee of medical and advocacy experts to provide oversight 2) Holding five group interviews Philadelphia, Chicago and Little Rock with 44 African-American women diagnosed recently diagnosed with breast cancer 3) Interviewing eight key community informants who work closely with African-American survivors. Transcripts and notes were analyzed and salient themes were used to revise Getting Connected. The resource was redesigned using “plain language” principles and interactive elements were added. Results: In October 2011, the second edition of Getting Connected was published. This 50 page, plain language, culturally relevant resource is designed to be used by African-American breast cancer survivors, their support network and their healthcare providers. This booklet promotes informed decision-making, while providing support, encouragement, and inspiration. Getting Connected addresses how one can live positively beyond breast cancer through the use of spirituality, developing and maintaining positive connections and reaching out to others. Conclusions: Using a community-based participatory research process ensures that the resource is culturally relevant. This model can be replicated to produce resources for other populations. The personal and direct approach of Getting Connected makes this booklet a valuable resource for healthcare providers working with African-American women affected by breast cancer. Citation Format: Patricia Bradley, Arin Ahlum Hanson, Janine Caplan Guglielmino, Catherine Creme Henry. Using community-based participatory research to develop a culturally relevant resource for African American women affected by breast cancer. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A22.