Sister Survivor: African American Breast Cancer Coalition
Creators: name: University Of California Office Of The President
Publisher: name: University of California Office of the President
publisherIdentifier: https://ror.org/00dmfq477
publisherIdentifierScheme: ROR
Year: 2024

description: 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.