Sister Survivor: African American Breast Cancer Coalition

Institution: Women of Essence
Investigator(s): Gloria Harmon, BA - Kimlin Ashing, Ph.D. -
Award Cycle: 2007 (Cycle 13) Grant #: 13AB-1101 Award: $62,500
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

This is a collaboration with: 13AB-1100 -

Initial Award Abstract (2007)
Although African Americans bear some of the heaviest burden among all medically underserved breast cancer survivors, few investigations and interventions have focused on addressing the needs of African American breast cancer survivors (AABCS). AABCS are diagnosed with more advanced cancer, experience lower survival and greater morbidity and mortality (ACS, 2006) as well as lower physical and functional well-being (Ashing-Giwa et. al., 2006 in press). These negative outcomes indicate that the support needs of AABCS are extensive (Ashing-Giwa, 1997). However, few to no services exist for AABCS in the Inland Empire, particularly Riverside and San Bernardino Counties, and the Antelope Valley. The long-term goal of this study is to document, characterize, and evaluate support group services for AABCS to underserved areas of the Inland Empire. The immediate goal of this proposed pilot study is to understand and document “what works” among established AA support groups and assess the unmet needs of African American survivors within support groups as well as survivors who live in the underserved areas of the Inland Empire.

The Study Research Questions: 1) What are the benefits and unmet needs of participants from five established peer-led African American support groups?
2) What is the most culturally-appropriate paradigm or best model for developing a breast cancer support group for African American survivors (based on what has worked in the past for the established support groups)?
3) What are the unmet needs of African American survivors in the Inland Empire region and how might a support group meet these needs?

This study will involve two phases. Phase I of the study will attempt to answer the first two research questions through interviews with support group leaders, as well as focus group discussions with breast cancer survivors of five established African American cancer support groups in Los Angeles. The product of phase I will be the development of culturally-responsive “Guide” on how to set up and run a breast cancer support group for African American survivors. Phase II involves conducting three needs assessment focus groups with African American breast cancer survivors and five key informant interviews with leaders in the Inland Empire to assess the needs and resources for starting a support group in that region..

This study is innovative because it has never been done before. The findings will have the potential to benefit the broader community through: 1) an increased understanding about the role and benefits for peer-led support groups in underserved survivors that directly benefit members, 2) the utility of the guide to inform the development of support groups for African American and other underserved survivors, and 3) the coalition building between the African American breast cancer survivors (AABCS) and support groups in LA, and the further expansion of this coalition and network to AABCS in the Inland Empire. Moreover, through our expanded networks from diverse community based organizations and other ethnically diverse breast cancer support groups, we can build multiethnic coalitions. We can partner with other organizations to expand research and support services to other underserved BCS including Latina, Asian and immigrant breast cancer survivors.

In preparing this application, Dr. Ashing-Giwa and the coalition have met several times to discuss and plan for the study. These community leaders are crucial partners in developing culturally appropriate study procedures, recruiting participants, and serving as overall program champions. In fact, the initial program idea belongs to Gloria Harmon, director of Women of Essence (WOE), and the goals and purpose of the proposal have been shared and discussed during numerous meetings between Dr. Ashing-Giwa and the support group leadership over the past 5 years. Additionally, each of the five partner organizations in this project has its own community advisory committee. We will actively involve these community advisory committee members as well as community members from the Wellness Community, American Cancer Society (ACS), Michelle’s Place, and the Community Health Councils, Inc. (CHC) in our research study by meeting with them on a bi-monthly basis (every two months) throughout the study. We will hold strategic planning meetings so that committee members can help guide the direction of the study as well as give us valuable input regarding the appropriateness and salience of study methods, instruments and activities. We will hold meetings both in the Inland Empire and in the LA area to accommodate the different regions and foster coalition building.

Final Report (2009)

A Brief Overview of topic being studied
Despite the positive role of support groups in improving breast cancer and quality of life outcomes (Owen et al., 2007; Taylor et al, 2007), there is limited research on the role of support groups among African American breast cancer survivors (AABCS). AABCS have alluded that some support groups are not culturally sensitive and do not provide adequate emotional support (Henderson et al., 2003; Henderson & Fogel 2003; Ashing-Giwa & Ganz, 1997). Therefore, the goals of this study were to 1) assess the benefits and unmet needs of participants from five peer-based AABCS support groups by identifyng the elements of structure and process, and the most culturally-appropriate paradigm for developing a peer-based AABCS support group, 2) conduct a needs assessment in the Inland Empire and 3) develop a preliminary guidebook for organizing and implementing a peer-based support group for AABCS.

Degree to which the projected aims were successfully completed
The progress of this project reflects its success in completing the projected aims. To achieve aims I and II, AABCS were assessed via focus groups and individual interviews. Six focus groups were conducted with support group members, 4 with non-support group members, and 1 with key informants. Support group leaders were also interviewed to detail structure and process of the support groups. Aim III was achieved through the development of the preliminary guide on ‘how to’ develop AABCS support groups.

Barriers that were overcome/not overcome: No significant barriers encountered

Summary or list of the major accomplishments
A total of 93 AABCS particpated in this study. On average, participants were 60 years old, with the majority being over 60 years of age. These survivors were fairly educated, and diverse in terms of income. Among the survivors, 87% were diagnosed within stages 1-3, all had received surgery, 2 out of 3 received breast conserving surgery, and about 60% received adjuvant therapies. The findings regarding the support groups suggest that the groups are critically important to the survivors’ family functioning and emotional well-being. The importance of support groups becomes more evident in the post-treatment or survivorship phase when emotioanl and social support from family, friends and medical providers dwindles. The findings indicate that the support groups provide practical resources and support relevant to all the facets of survivorship including patient navigation, medical resources, as well as informational, emotional, spiritual and financial support. The themes of acceptance, belonging, and validation were woven throughout these interviews. Support groups provide an emotional safe haven to feel connected, supported, and guided. In summary, these support groups function as an extension of a culturally prescribed way of life that has been specially formulated and adapted through the breast cancer experience. These cultural elements include a fictive kin network (the formation of a familial tie without true familial/blood relations) grounded in a spiritual foundation. Thus, a fuller appreciation and examination of the role of spirituality in survivorship is necessary. The Inland Empire’s needs assessment conducted via a focus group interview with 13 key informants, documents that these AABCS experience isolation along with high familial, functional (work) and practical demands (transportation, commuting). They constitute an underserved and at-risk population. Finally, we have a growing and expanding coalition of 7 advocacy groups that successfully implemented a JFCA titled: “Increasing the Voice of African Americans in Breast Cancer Research”. This conference brought together 77 researchers and advocates to dialogue and plan the next generation of CBPR and projects with AABCS. Additionaly, these findings demonstrate the potential to benefit the broader community through coalition building between African American breast cancer survivor-advocates and the scientific community. As part of our project continuation plan, a CRC full award to further develop the guidebook and prospectively assess the efficacy of AABCS peer-based support groups to improve survivorship outcomes has been submitted.