African American Women and Breast Cancer: What Works?

Institution: Kaiser Foundation Research Institute
Investigator(s): Carol Somkin, Ph.D. - Priscilla Banks, M.A. -
Award Cycle: 2002 (Cycle VIII) Grant #: 8AB-1800 Award: $131,244
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Health Policy and Health Services: better serving women's needs

Initial Award Abstract (2002)
African Americans, while diagnosed less frequently with breast cancer than whites, continue to have a greater proportion of women diagnosed with late stage disease and greater mortality from breast cancer. The proposed research focuses on low-income African Americans who do not have health insurance and who are especially at risk for the development of late stage disease. Many of the factors hypothesized to account for the high breast cancer mortality among African American women, such as lack of insurance, lower rates of screening, delayed follow-up and/or treatment, lower quality and/or less aggressive treatment can be viewed generally as access barriers.

While uninsured women have initial access to breast-related services through the state and federal BCEDP/BCCCP programs, there is evidence that compared to other ethnic groups African American women are not utilizing them to the same extent. In a qualitative study, whose goal is to generate hypotheses, we will examine in depth the possible effects of secondary access factors (organizational and communication barriers and facilitators) on the use of breast-related services by low-income, uninsured African American women. Our focus will be on discovering what it is about the health care settings and interactions with providers and staff that promotes and inhibits the experience of culturally sensitive care for African American women.

We will use qualitative methods (observation and open-ended interviews) to examine the often subtle access barriers that may inhibit low-income, uninsured, African American women from obtaining timely breast-related services and explore factors that may alleviate these barriers. We will conduct observations in clinics to identify features of culturally appropriate settings from an African American perspective. We will also conduct 80 exploratory interviews with low-income, uninsured, African American women who do and do not obtain care along the continuum from no screening to screening, repeat screening, follow-up of a breast abnormality, and detection of breast cancer.

This pilot study uses an innovative approach to the study of cultural competence. It will be conducted by a diverse community group of African Americans who will be involved in all aspects of the project in collaboration with two traditional researchers. This collaboration will ensure that the findings will be both relevant to the African American community and scientifically sound. We will explore issues of cultural sensitivity in patient-provider/staff communications and the physical and social environment of the health care settings in which the communications take place. This will enable us to develop testable hypotheses not only about each of these areas separately but also about their interrelationships.

Final Report (2006)
Introduction African Americans, while diagnosed less frequently with breast cancer than whites, continue to have a greater proportion of women with late stage disease and greater mortality from breast cancer. Regular mammography and prompt follow-up offer the best opportunity for breast cancer early detection, yet, while the Cancer Detection Programs: Every Woman Counts (CDP: EWC) provides free access to breast cancer screening for low-income, uninsured and underinsured women in California, African American women are not utilizing the program at the same rate as women of other racial/ethnic groups.

Topic Addressed This qualitative Community Research Collaboration pilot study investigated possible reasons why African American women may not take advantage of CDP: EWC screening and diagnostic services.

Progress Toward Specific Aims We conducted telephone interviews with staff at 56 CDP: EWC service delivery sites in the San Francisco Bay and Los Angeles areas to determine the organizational/system-level characteristics that may be associated with a higher utilization of positive breast health and breast cancer behaviors (e.g., initial screening, repeat screening, prompt follow-up and diagnostic services) by African American women. We also conducted face-to-face interviews with 26 African American women who obtained screening or screening and follow-up services at CDP: EWC clinics or who called the program's 800 telephone number seeking a referral for services but who did not obtain the services.

The patient interviews explored- from the African American woman's perspective-secondary access factors such as doctor-patient communication and perceptions of being treated with respect and cultural sensitivity, which have been shown to be associated with the use of breast cancer screening. We found three important secondary access factors in the provider interviews: lack of outreach to women who do not use health services; inability to systematically track women in need of repeat screening and diagnostic services; and logistical hassles, such as waiting time in the clinic for a screening appointment and needing to visit multiple clinics ("too many hoops"). Patient interviews confirmed many of the findings from the provider interviews. In addition, while in general women reported receiving culturally sensitive care, they interpreted the negative aspects of care that they experienced-such as long waiting times in the clinic, receipt of a painful mammogram, not being given any explanation, and not being listened to-as a lack of respect. Historically for African Americans these factors convey racism.

Findings, Future Direction and Impact We developed a number of hypotheses based on our findings that be tested in future studies. Based on the study findings to date we conclude that: 1) more outreach activities are needed, especially to women who do not use health care services; 2) low-income uninsured and underinsured African American women are extremely diverse in terms of educational, employment, cultural and religious background. Therefore different types of outreach interventions are needed to reach these women and meet their needs; 3) a navigator program to provide education and advocacy skills for women who call the 800 number could be helpful in reducing the number of women who fail to obtain screening after inquiring about available services; 4) women interpreted the negative aspects of care that they experienced-such as long waiting times in the clinic, receipt of a painful mammogram,unjsatisfacotry explanations about procedure, and not being listened to as a lack of respect, which historically for African Americans conveys racism; 5) training providers and clinic staff-specifically in showing respect (e.g., tone of voice, choice of words), appropriate listening skills and body language-may help staff interact in a more culturally sensitive way with African American women; and 6) the physical environment of the clinic is important to women. Crowded waiting rooms and lack of signs letting women know where to go are perceived as barriers to screening. A clean facility with culturally relevant pictures on the walls and instructional materials are perceived as facilitators.

Symposium Abstract (2005)
ntroduction: This study represents a collaboration between members of the African American Advisory Committee and traditional researchers who all share involvement in every aspect of the project. The purpose of this qualitative pilot study is to generate rather than test hypotheses about factors associated with breast cancer screening use among, low income African American Women who do not possess health insurance, with the long-term aim of developing interventions to improve breast cancer screening in this population.

Goal Statement: Our desire is to determine—from the African American woman’s perspective—the characteristics of provider-patient and clinic staff-patient communication that promote and/or inhibit positive breast health and breast cancer behaviors among uninsured women who obtain clinical breast exams mammograms through the Cancer Detection Programs: Every Woman Counts (CDP:EWC) breast cancer screening program.

Description of Work: Using open-ended interviews conducted one-on-one with African American women, both face-to-face and by telephone, combined with data from interviews with service providers, investigators are developing a profile of the different types of African American women who use the Every Woman Counts program. The interviews explore women’s’ experiences with various healthcare systems, their personal health care stories, and barriers they encountered, real and/or perceived. These data help identify a set of characteristics that describe “What Works for African American Women” in their interaction with breast cancer screening programs. Preliminary analyses indicate that women who are screened through the CDP:EWC tend to be very knowledgeable about how to get health care. Many women we have interviewed have previously worked in health care organizations and know how to advocate for themselves and others.

Potential Impact: Understanding the various types of African American women who use Every Woman Counts will allow the program to tailor outreach and more effectively target similar groups of women. In addition, and perhaps more importantly, documenting the types of women who currently use the program, along with summarizing the range of their experiences, will enhance the ability to identify those women who currently do not use the program’s services in order to develop ways to better reach them and serve their needs.