Community Based Participatory Research with Underserved African American Women with Breast Cancer: An Example of Communities Driving the Research

Introduction: African American women have the lowest breast cancer survival rate compared to all other groups. Higher mortality rates can be attributed, at least in part, to the lack of mammography screening among African American women. Research has identified various factors contributing this lack of mammography screening: 1) lack of referral for physician, 2) lack of insurance, 3) financial concerns, 4) difficulty scheduling appointments, and 5) lack of culturally responsive prevention programs. Traditional health promotion models often do not take into account the importance of shared socio-cultural backgrounds, beliefs, and experiences unique to this population when designing cancer prevention activities. The purpose of this study was increase awareness for breast cancer screening with underserved African American women by providing culturally appropriate education and information developed and implemented within the community.

Methods:  This study utilized Community Based Participatory Research (CBPR) to implement a breast cancer educational program for 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 around breast cancer prevention. 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 462 African American women completed the program and pre/post test questionnaires.

Results: McNemar’s test was utilized to determine if there were pretest-posttest differences in the reasons for not getting regular mammograms. Significant differences existed in the proportion of women who did and did not indicate that they were concerned about radiation (χ²(1)=8.0, p=.008), the pain associated with mammograms (χ²(1)=10.00, p<.001), being embarrassed about the test (χ²(1)=5.44, p=.039), trusting medical tests (χ²(1)=6.4, p=.021), and having time to get a mammogram (χ²(1)=4.57, p=.047).  Additionally, differences existed in the proportion of women who stated that they had healthy breasts and did not need a mammogram (χ²(1)=8.33, p=.006), previously had a mammogram and did not need another (χ²(1)=8.9, p=.004), or did not think that they would get breast cancer (χ²(1)=10.71, p=.001).  There was no statistically significant change in the proportion of women who responded affirmatively to statements about transportation concerns, religious barriers, childcare, or insurance coverage. Results also showed that 99% of participants would recommend the program to a friend, and over 98% enjoyed and learned something new from the program.

Implications: Identifying and engaging key stakeholders and community leaders is essential in the successful provision of services and conducting CBPR in underserved, minority communities. Services and program developed and delivered from within the community are fundamental to empowering change within communities. The collaboration between researchers and community leaders using CBPR is a model for future social work research.