Sister Survivor: African American Breast Cancer Coalition
|Institution:||Beckman Research Institute of the City of Hope|
Kimlin Ashing-Giwa , Ph.D. -
|Award Cycle:||2007 (Cycle 13)||Grant #: 13AB-1100||Award: $169,000|
|Award Type:||CRC Pilot Award|
|Disparities>Disparities: eliminating the unequal burden of breast cancer|
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.
Progress Report 1 (2008)
Few investigations and interventions have focused on addressing needs for African American breast cancer survivors (AABCS). The goal of the Sister Survivor study is to assess: 1) the benefits and unmet needs of participants from five AABCS support groups, 2) identify and assess the elements of structure and process, and the most culturally-appropriate paradigm for developing a peer-led AABCS support group, 3) develop a preliminary guide for organizing and implementing a peer-based support group for African American BCS. The progress for this Award is on target. Toward achieving Aim 1; we conducted 7 focus groups with a total of 53 African American breast cancer survivors (AABCS) and 13 key informant interviews. This study received COH-IRB approval and all participants were fully informed and consented to participate. The key informant interviews lasted about 1 hour. The practical arrangements for the focus groups were done by the support group’s leadership, and the interviews lasted about 2-3 hours. The mean age of the AABCS participates was 59.4 with about half of the AABCS being over 60 years of age. Educationally, a majority reported having an Associate Degree or Vocational Certificate with a total family income over $75, 000. These survivors were fairly educated, and diverse in terms of age and income. All the survivors received surgery and about 60% received adjuvant therapies. Ninety-six percent were diagnosed within stages 1-3, 2 out of 3 received breast conserving surgery and most of the survivors who received a mastectomy (33%) received reconstructive surgery (30%). Our preliminary findings regarding the support groups suggest that the groups are critically important to the survivors’ family functioning (60%) and emotional well-being (83%). African American women commonly participate in worship, services and social association within the church. The support groups are the extension of this way of life with the added focus on the breast cancer experience. Thus, a fuller appreciation and examination of the role of spirituality in survivorship is necessary. Lack of adequate follow-up medical care exists: 6% indicated that they receive no regular follow-up care; and 14% had not had a mammogram, 46% had not had a pap test and 56% had not had colon cancer screening within the past year. Our plans for continuation of this project include: 1) completing the qualitative interviews and preparing findings for reports and manuscripts; 2) developing a preliminary guide for developing peer-based AABCS support groups; and 3) submit a full award to further develop the guide and prospectively assess the efficacy of AABCS peer-based support groups to improve survivorship outcomes. Our findings from this and the full Award can inform behavioral interventions designed to reduce the psychosocial burden of BCA. The findings have the potential to benefit the broader community through coalition building between the African American breast cancer survivor-advocate and the scientific community.
Symposium Abstract (2010)
Kimlin Ashing-Giwa, City of Hope; Carolyn Tapp, Women of Color Breast Cancer Survivors Support Project; Gloria Harmon, Women of Essence Monica Rosales, City of Hope; Koko McDowell, Kommah Seray Inflammatory Breast Cancer Foundation; Virginia Martin and Jewell Williams, Sisters Breast Cancer Survivors Network; Rhonda Holbert-Santifer, Celebrate Life Cancer Ministry; Vickie Race, Faith, Hope, and Charity; Mark Race, Faith, Hope, and Charity, Phyllis Clark, Healthy Heritage Movement; Angela Agbasi, Women of Color Breast Cancer Survivors Support Project; Joy Steward, The Wellness Community; Leah Lewis, ACS; Eudora Mitchell, Southern California Witness Project
Introduction: Support groups play a positive role in improving breast cancer and quality of life outcomes. However, there is limited research on the role of support groups among African American breast cancer survivors (AABCS). AABCS have expressed preference for support groups that are culturally sensitive.
Purpose: Eleven advocacy grassroots organizations and Dr. Ashing-Giwa (COH) formed the African-American Breast Cancer Coalition (AABCC). The coalition implemented this study using the CBPR framework and qualitative methodology with the following objectives: (1) identify the elements of structure and process for African American support groups and (2) the most culturally-appropriate paradigm for developing AABCS support groups.
Methods: AABCS were interviewed in focus groups (5 with support group members, 4 with non-support group members) to get a clear idea of the structure and process of the groups. A preliminary guide on ‘how to’ develop AABCS support groups was developed. The coalition was involved in all study activities including study planning, instrumentation, study implementation and dissemination of findings.
Results: 75 AABCS participated. The qualitative analysis unveiled 3 themes: (1) Emotional Impact of Breast Cancer, (2) Emotional Distress, and (3) Emotional Boosters. Support group provide culturally and linguistically competent informational, navigational, supportive and spiritual care. The findings suggest the groups are critically important to the survivors’ family functioning and emotional well-being. Specifically, groups are critically important to the survivor’s family functioning (67%) and emotional well-being (84%). Further, the support groups had a positive impact on outlook on life (83%), spirituality or religious faith practices (83%), and their ability to talk about cancer (80%). The importance of support groups becomes more evident in the post-treatment/survivorship phase when emotional and social support from family, friends and medical providers dwindles. The themes of acceptance, belonging, and validation were woven throughout the interviews.
Conclusion: These support groups function as an extension of a culturally prescribed way of life waving a fictive kin network with a spiritual base through the lens of the breast cancer experience. Our findings and overall Coalition outcomes demonstrate the potential of community-research partnerships to address health disparities through coalition building, prioritizing direct community benefit, training/capacity building among community members and infusing cultural and socio-ecological dimensions into the process.