Community Impact of Breast Cancer: The Social Context

Overview: California is comprised of diverse communities differing by multiple characteristics such as ethnicity, culture, language, sexual identity, immigration history, and socioeconomic status. This diversity offers the unique opportunity to investigate disparities and the unequal burden of breast cancer among underserved groups. Critical questions to be addressed include:

To address these issues the CBCRP solicits applications from community academic partnerships as well as individual investigators.

The CBCRP has been supporting Community-Research Collaborations (CRC) for over 10 years. These partnerships are based on the established principles of community-based participatory research (CBPR) whereby academic and community investigators work together to identify the research question, develop the study design, carry out the research, analyze results, and disseminate information to scientific and lay communities.

The CBCRP offers pre-application workshops and technical assistance to facilitate new partnerships and competitive grant applications. We are encouraged that many CRC grants focus on the underlying disparities of underserved populations through innovative and understudied research areas. For example, Cycle 13 grantees are proposing important research topics including participation in clinical trials, breast education for immigrant women, patient navigation, psychosocial support for rural and African American women, and end of life care. We feel that addressing these gaps in our knowledge will lead to promising solutions for underserved communities disproportionately affected by breast cancer.

In addition to the CRC awards, the CBCRP supports the ”Community Impact” priority issue with IDEA grants, career development awards, and the Joining Forces Conference Award. The CBCRP funded six new grants in 2007 to advance our Community Impact priority issue. Three of the CBCRP’s research topics are represented in this section:

Community Impact Portfolio Summary:

Few research studies focus on the enrollment of ethnic minority women into clinical trials, which provide the best in standard care and test promising new therapies. Minority groups have lower participation rates in clinical trials, partly due to lack of information about clinical trials and their potential benefits. Natasha Riley with Vista Community Clinic and Georgia Sadler of the University of California, San Diego, are conducting a pilot study to create an educational program, entitled Scientific Literacy and Breast Cancer Clinical Trials Education Program, to increase knowledge and awareness about clinical trials among African American and Hispanic American women. The team plans a larger study where they will test whether women in the educational program arm are more likely to enroll in clinical trials and become a “Clinical Trials Ambassador” compared with those in the control group.

Breast cancer risk among immigrant women is another important research area given the cultural, linguistic, and socioeconomic barriers to treatment and care. Joan Bloom with the University of California, Berkeley, and Aida Shirazi with the Afghan Coalition are funded for a pilot study entitled, Breast Health Behaviors of Immigrant Afghan Women. While US-based data are not available, data collected elsewhere suggest that Afghan women are less likely to be screened than other groups and are more likely to have late diagnoses. This project aims to understand more about Afghan women’s concerns, knowledge, attitudes, behaviors and sources of information about breast care, and perceived barriers to care, as well as cultural modifications needed to adapt general education programs for this group. Information learned from the project has the potential to increase breast health awareness among Afghan women and also other groups of Muslim women in California and the US.

Few investigations and interventions have focused on addressing the support needs of African American breast cancer survivors (AABCS) in spite of this group bearing the heaviest burden among all medically underserved breast cancer survivors. While the basic emotional and informational needs of AABCS may be similar to the needs of other breast cancer survivors regardless of their ethnic group, how these needs are met will likely differ depending on cultural and community context. In their pilot study, Sister Survivor: African American Breast Cancer Coalition, Kimlin Ashing Giwa of City of Hope and Gloria Harmon with Women of Essence will answer the following questions: (1) What are the benefits and unmet needs of participants from five AABCS support groups in Los Angeles? (2) What are the elements of structure and process, and the most culturally-appropriate paradigm for developing a peer-led AABCS support group? (3) What are the unmet needs and psychosocial resources of AABCS in the Inland Empire region? The team will develop a preliminary “Culturally-Informed Breast Cancer Support Group Guide” on how to organize and maintain support groups, based on the two sets of qualitative data. Finally, they will conduct needs assessment focus groups and key informant interviews in the Inland Empire to evaluate the psychosocial needs and resources of AABCS. Their goal is to document and disseminate the process and structure of peer led support groups.

Alternative methods to delivering psychosocial support for rural and isolated women are being explored by Cheryl Koopman from Stanford University, Mary Anne Kreshka and Jim Perkins from the Northern Sierra Health Network. This team is conducting a three-year trial to assess the acceptability and efficacy of a video conferencing intervention to provide support groups to women with breast cancer and breast cancer survivors. Their study, Expanding Rural Access: Distance Delivery of Support Groups, hypothesizes that women in the intervention condition will have increases in social support, self-efficacy, knowledge of community resources, emotional expression, and decreases in depression and PTSD symptoms. In the trial, 100 women will be randomized to a video-conference support group or wait-listed for a support group. The intervention consists of eight weekly mediated support groups and a workbook; the latter was previously found to be efficacious in addressing psycho-social variables related to breast cancer.

Patient navigation involves assisting those affected by a breast cancer diagnosis in navigating various systems needed for complete medical care. Patient navigators are in need of a mechanism to bring organizations providing navigation services together to reap the benefits of mutual experiences, explore potential resource sharing, and/or develop ways to measure the benefit and quality of services provided. Lisa Bailey with Alta Bates Summit Medical Center is utilizing a Joining Forces Conference Award for a project entitled, Networking Breast Cancer Navigator Programs in Northern California. A full-day conference is planned to: (1) bring together providers of breast cancer navigation services to encourage networking and resource sharing; and (2) facilitate the documentation and measurement of breast cancer navigation services to serve as a resource for new programs as well as provide evidence-based literature of the value of navigation services. The conference has important implications for facilitating a dialogue between local programs about navigator programs, needs for navigator support, and barriers that navigators encounter as they work to access appropriate health care for patients.

Finally, end of life care is a critical point in the cancer continuum that receives little research attention, especially studies that include underserved women who are often diagnosed at later breast cancer stages and have lower rates of survival. Based on data from a CRC-funded pilot project, Shelley Adler from University of California, San Francisco, and Beverly Burns from the Charlotte Maxwell Complementary Clinic will conduct a three-year, mixed-method, longitudinal study to evaluate the effectiveness of a narrative intervention. This intervention study, Underserved Women with Breast Cancer at End of Life, focuses on the construction of an ethical will (expressing individual values, beliefs, life lessons, hopes, love and forgiveness in a written document to loved ones) among women with metastatic breast cancer. The secondary aim is to construct a conceptual model that reflects the experiences of breast cancer patients at the end of life. One hundred and twenty women with metastatic breast cancer will be enrolled in the study and interviewed four times with a trained interviewer. These four interviews will form the basis for the construction of an ethical will in collaboration with the patient. The goal of the intervention is to reinforce dying women’s sense of meaning of their lives and ease concerns regarding death.

Community Impact Grants Funded in 2007:

Underserved Women with Breast Cancer at End of Life
Shelley Adler, Ph.D. (co-PI)
University of California, San Francisco
Beverly Burns, M.S. (co-PI)
Charlotte Maxwell Complementary Clinic
Award Type: CRC-Full Research
$270,000 (UCSF) / $337,500 (CMCC)

Sister Survivor: African American Breast Cancer Coalition
Kimlin Ashing-Giwa, Ph.D. (co-PI)
Beckman Research Institute of the City of Hope
Gloria Harmon (co-PI)
Women of Essence
Award Type: CRC-Pilot
$169,000 (BRI) / $62,500 (WOE)

Networking Breast Cancer Navigator Programs in Northern California
Lisa Bailey, M.D., F.A.C.S
Alta Bates Summit Medical Foundation
Award Type: Joining Forces Conference
$15,000

Breast Health Behaviors of Immigrant Afghan Women
Joan Bloom, Ph.D. (co-PI)
University of California, Berkeley
Aida Shirazi (co-PI)
Afghan Coalition
Award Type: CRC-Pilot
$70,481 (UCB) / $99,255 (AC)

Expanding Rural Access: Distance Delivery of Support Groups
Cheryl Koopman, Ph.D. (co-PI)
Stanford University
Mary Anne Kreshka, M.A. and Jim Perkins, Dr.P.H.
(co-PIs)
Northern Sierra Rural Health Network
Award Type: CRC-Full Research
$341,100 (SU) / $405,000 (NSRHN)

Science Literacy & Breast Cancer Clinical Trials Education
Georgia Sadler, Ph.D. M.B.A.
University of California, San Diego
Natasha Riley, M.A.
Vista Community Clinic
Award Type: CRC-Pilot
$44,003 (UCSD) / $121,402 (VCC)