Sister Survivor: Evaluating Best Practices in Social Support

Institution: Women of Color Breast Cancer Survivors Support Project
Investigator(s): Carolyn Tapp,  - Kimlin Ashing, Ph.D. -
Award Cycle: 2009 (Cycle 15) Grant #: 15BB-1001 Award: $5,000
Award Type: CRC Full Research Award
Research Priorities
Community Impact of Breast Cancer>Disparities: eliminating the unequal burden of breast cancer

This is a collaboration with: 15BB-1000 -

Initial Award Abstract (2009)

Introduction: Quality of life (QOL) among African American Breast Cancer Survivors (AABCS) has been overlooked. African Americans are diagnosed at a later stage, survival rate is lower and more illnesses and deaths; and lower perceptions, physical and functional well-being (Ashing-Giwa et. al., 2008). These negative outcomes indicate that the support needs of AABCS are great.

Question(s) or hypotheses for the Full Award: 1) why do support group settings matter? 2) Can peer-based support groups built on the foundation of structure and process from the African American BCS coalition’s Pilot Award preliminary findings –“the Culturally-Informed, Peer-based Breast Cancer Support Group Guidebook” create an effective infrastructure for peer-based support in underserved areas?

Preliminary findings from the Pilot Award:
1. Creation of preliminary Breast Cancer Support Group Guidebook.
2. African American women have a history of leadership within our church. Our commitment to worship and service is where we often draw our strength from. To have a place were we can come together to combine our spirituality as leaders in a support group setting is essential to survivorship. A Support group is a place you can go to feel protected and where you can let your guard down and feel comforted that you are not alone in the fight to survive. Thus, having broader understanding and appreciation of the role of spirituality and spirituality with the support groups is vital . Lack of adequate follow-up BC and overall medical care exists: 4% indicated that they receive no regular follow-up care; and 12% had not had a mammogram, 40% had not had a pap test and 55% had not had colon cancer screening within the past year. The disparities that exist are alarming and need to be addressed. There is concern for the lack of support groups and services available to AABCS in the Inland Empire. Since most support groups are located in the greater L.A. area, it may be difficult for women residing in this region to attend support groups. Therefore, there is a need to develop support resources in Inland Empire (IE). During this pilot we have solidified and expanded our African American Cancer Coalition to include 7 advocacy groups in Los Angeles (Women of Color, Women of Essence, Celebrate Life cancer Ministries, Sisters, Support Sisters, Faith Hope and Charity and Women in Action), 3 advocacy groups in the Inland Empire (Kommah Serray Breast Cancer Organization, The witness Project and Healthy Heritage), and The Green Foundation in Orange County. Our partnering organizations also include the ACS, Partnered for Progress, Wellness Community and Komen Foundation.

Collaborative Activities: A series of collaborative activities were undertaken during the planning, implementation and dissemination of this research study (see Table 3). These activities included 10 face to face planning or training meetings planning (e.g., discuss roles, study implementation) and 2 training meetings (e.g., focus groups), and a community findings report conference held on December 1, 2008. This Pilot Award and the Increasing the Voice JFCA resulted in 7 grant development consultation with Dr Ashing-Giwa providing technical assistance to: 1)Carolyn Tapp -WOC: National Breast Cancer Coalition (NBCC) “Each One Teach One”; 2) Advocacy in Action Kommah McDowell -Kommah Serray Breast Cancer Foundation: Komen “Breast cancer Screening in African American Women 3)Vickie Race- Faith Hope and Charity Cancer Ministries: Catholic Charities Spirituality and Breast Cancer 4)Rhonda Holbert Celebrate Life Cancer Ministries: Exploring Funding Sources “Electronic Cancer Support”5)Eudora Mitchell – Witness Project: Avon “Emotional Wellbeing in BCS” 6)Tracy Mosbey – Rushing for Life: Entertainment Industry “Using Media to Improve Outcomes” 7)Lucy Young – Herald Cancer Association: Komen “Joy Luck Club. ”For the planning grant, Women of Color (WOC), along with Dr. Ashing-Giwa at the City of Hope Center of Community Alliance for Research and Education (CCARE), will implement a comprehensive support group and research methodology training and complete the data analysis of the pilot data for this planning grant. These two aims will provide valuable information to inform and strengthen the Full Award resubmission and these aims are responsive to the reviewers’ comments.

Community involvement:, we also propose to train 12 coalition members identified as emerging leaders and support group leaders. All trainings will be conducted using a team approach by the leadership of the coalition Carolyn Tapp, Vickie Race, Nettie Almada, Rhonda Holbert, Virginia Martin and Dr. Ashing-Giwa; all have conducted community trainings in their advocacy work.

Innovative elements: The findings have the potential for translation into broad community benefit and community clinical practice through: 1) a better understanding of a support group setting, 2) the utility of the guidebook to inform the development of support groups for African Americans and other underserved survivors, 3) research

Future Plans: Women of Color (WOC) and Dr. Ashing-Giwa (CCARE), will submit a Full Award application to carefully study and compare the QOL changes among AABCS who participate in support groups and those who do not.

Final Report (2010)

A Brief Overview of the Topic Being Studied: A planning grant was awarded to Carolyn Tapp of Women of Color Breast Cancer Organization (WOC) and Kimlin Ashing-Giwa at City of Hope’s Center of Community alliance for Research and Education (CCARE). Together with the Sister Survivor: African-American Breast Cancer Coalition, they worked on devising a plan for developing a culturally appropriate study informed by the Pilot Award. The specific aims were to bring together members from the African-American Breast Cancer Coalition to (1) Finalize analysis and develop manuscripts and presentations based on the qualitative data from the CRC Pilot, (2) Identify potential sites and partners in the Inland Empire, specifically in San Bernardino and Riverside Counties for expanding the Sister Survivor Coalition, and (3) Discuss ideas for the next phase of this on-going research program by developing an evidence-based, intervention study rooted in CBPR, that builds on the strengths of the Sister Survivor Coalition and addresses unmet needs identified by the Pilot Award.

Degree to Which the Projected Aims Were Successfully Completed: WOC and CCARE were successful in achieving their aims with the collaboration of the AABCC. The qualitative data from the CRC Pilot Award was analyzed and summarized. Further the AABCC met several times, in person and over the phone, to discuss what steps to take towards accomplishing the most recent research project. Based on the discussion from these meetings, the “Guidebook for Creating Peer-based Breast Cancer Support Groups” was revised and updated. Two new agencies, located in the Inland Empire and Northeastern Los Angeles joined the Sister Survivor Coalition. Furthermore, we plan to submit a grant proposal for consideration for a full CRC Award with Carolyn Tapp and Kimlin Ashing-Giwa as Co-PIs in 2011. The grant proposal suggests the implementation of a support group intervention for AABCS and evaluating its effectiveness in a randomized trial.

Barriers That Were Overcome/Not Overcome: No significant barriers were encountered.

Summary of Major Accomplishments: Our collaborations capitalize on the mission and strengths of WOC and the other community-based organization partners who have worked to provide important supportive care services to African-American breast cancer survivors. Major accomplishments include finalizing the “Guidebook” and putting together the resubmission grant proposal for the CRC Full Award. Also, the AABBC has expanded to include new partners and will continue to work to expand the AABCC between Los Angeles and the San Bernardino and Riverside Counties (Inland Empire) to encourage new research and support services. In addition, two organizations have committed to organizing and implementing support groups. Since research on peer-based support groups for African-Americans is lacking, our project will contribute new and valuable information to our understanding of the psychosocial needs of African-American breast cancer survivors and to the body of knowledge on this issue including methodological, clinical, and translational implications.