Community based participatory research with underserved African-American women with breast cancer: lessons learned

Introduction and Purpose: It is well documented that breast cancer that African American women have the lowest breast cancer survival rate among any ethnic group. Higher mortality rates attribute, at least in part, to the lower rate of mammography screening among African American women. Current research suggest there are a variety of factors why socio-economically underserved women do not seek mammograms: 1) lack of referral for physician, 2) lack of insurance, 3) financial concerns, 4) difficulty scheduling appointments, and 5) lack of culturally responsive programs aimed at education and prevention. Traditional health promotion models do not take into account the importance of shared socio-cultural backgrounds, beliefs, and experiences unique to this population when designing community-based cancer screening and prevention activities for underserved women. The purpose of this study was increase awareness for breast cancer screening in underserved populations by providing culturally appropriate social support and information. The key to providing culturally appropriate support and information to medically underserved woman began with the recognition and respect for a diverse group. Competence was dependent upon a strong social and cultural connection and understanding between outreach workers and women in the community. Methods: This study utilized Community Based Participatory Research (CBPR) to develop and test the effectiveness of providing a breast cancer educational program to underserved African American women. A 45 minute skit, Hats off to Cancer, was developed by key stakeholders in the community and used storytelling to honor and incorporate five different cultural experiences with breast cancer prevention and diagnosis. The program was evaluated using a pre-test questionnaire and 3 month follow-up telephone questionnaire regarding breast cancer attitudes, knowledge, and behavior. The culturally sensitive approach to this program took into account the socio-economic and psychosocial barriers impeding a woman’s access to breast health information and services. To appropriately address the issues, testimonials and stories ranged from personal experiences dealing with self-breast examinations (SBE), clinical breast examinations (CBE), early detection, diagnosis and survivorship with an emphasis on early detection. A total of 496 African American women completed the program and pre/post test questionnaires. Results: Findings revealed significant changes in pre and post test breast cancer attitudes, knowledge, and behavior (p=.01). Results also showed that 99% of participants strongly agreed or agreed they would recommend the Hats off to Cancer program to a friend. Similarly, over 98% strongly agreed or agreed they enjoyed and learned something new from the program. Implications: Identifying and engaging key stakeholders and community leaders is essential in the success of providing services and conducting CBPR in underserved, minority communities. The current project involved an agency that had worked many years to establish respect and trust among community leaders in providing culturally relevant health promotion programs. The early commitments of the agency, to provide education and support to empower women to better understand and practice appropriate breast care, have evolved into a “shared ownership” with surrounding communities