Sister Survivor: Evaluating Best Practices in Social Support

Institution: Beckman Research Institute of the City of Hope
Investigator(s): Kimlin Ashing, Ph.D. - Carolyn Tapp,  -
Award Cycle: 2009 (Cycle 15) Grant #: 15BB-1000 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-1001 -

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.

Symposium Abstract (2010)

Tracy Hardy, Fred Mosbey

Rushing for Life's purposeis to bridge the gap of inequalities between breast cancer patient's care treatment and the healthcare system by identifying the disproportions in our society and finding adequate solutions to resolve them appropriately. This particular study conducted by Rushing For Life is called "Follow Up and Follow Through".  We will facilitate the study utilizing our Measurement Outcome Studies Research System and Methodologies that will result in a Matrix which consist of pertinent data studies we will use to populate.  (Basically, a template with a documented plan of action). This system will provide adequate accountability that allows the Medical staff to track and update pertinent information on the patient as well as follow up on their progress.  They can also perform friendly extraction queries as needed to provide them with crucial data about the patient.

The first phase will start by tracking and identifying these patients with Breast Cancer and/or they might be high risk, have family history etc.,  We use resources by way of Government, Medical Facilities, Communities, Cancer Agencies, etc., starting by State and region. 

The Matrix will have close to real time accessibility and can be used for identifying purposes and very versatile queries which will allow medical professionals to review and follow up with thier patients based on the storing of critical information, thus Follow up - Follow through is administered. As mentioned earlier, there will be a period of criteria gathering and studies from Patients, in coordination with  Medical, Government, Cancer Agencies and other resources available which will identify these high risk patients in various ways. All permissible parties will have access to data for quality assurance purposes and other general purposes.

The goal is promoting a positive interaction between Patient and Doctor starting with a healthy communication between the parties. It also introduces patients to understanding how important it is that they take their health serious and feel comfortable consulting  doctors as necessary.  It also promotes best practices with Doctors and their at risk patients and leaves a trail of the interactions.

This system helps reduce disparity gaps as it pertains to breast cancer patients by promoting early detection and prevention, as well as helping to restore integrity into the medical profession.

The first phase study begins in California since it is in the top five with breast cancer rates. Upon success we'll branch into rural areas and areas that have high risk populations. We have already started data collection and research for several. The matrix "Follow up Follow Through" can be utilized widespread in other territories and can be a template for other major diseases.

Fact is when it comes to cancer deaths, breast cancer is the second cause of cancer deaths among black women with lung cancer being first.  Even though black women have a lower rate of cancer compared to whites, they seem to have a much higher incidence rate - (at risk for death more) and we haven't taken into consideration other minority populations besides black women. Early detection can help save lives, but lives are still being needlessly lost and so it is not enough.  Communication is one of the keys to prevention.

The future is bright and this big gap of people with health disparities can be reduced using "follow up - follow through" which will work well with the new healthcare reform. California gaps could be reduced within the next two years with this system in place if studies are continued throughout 2010/11 and the action plan is implemented. California will also serve as the catalyst for other states with similar issues.

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: African American representation and participation in cancer research in California is declining. Using community-based participatory research (CBPR) to address disparities in the engagement of ethnic minorities in research and inequities in health outcomes is held as a promising approach. Engaging underrepresented communities can take various forms, one approach is to employ the conference format as a multi-foci strategy to connect, co-educate, train and stimulate community scientific partnerships.

Approach and Purpose: A Joining Forces conference was designed to bring together broad stakeholders including advocates and researchers to share ideas about advancing the breast caner research agenda of African Americans. The conference, “Increasing the Voice of African Americans in Breast Cancer Research - A Dialogue between Advocates” was held by the Center of Community Alliance for Research and Education (CCARE) at the City of Hope National Medical Center (COH).

The objectives of the conference were to: (1) Bring together breast cancer survivor advocate organizations and researchers to dialogue and exchange ideas to generate CBPR proposals; (2) Conduct educational and preliminary training presentations on the purpose and elements of CBPR; (3) Provide appropriate resources including funding to facilitate collaborative research projects.

Methods: The planning committee for the conference included advocacy organizations, breast cancer survivors, researchers and policy makers. The conference leadership included African American breast cancer survivor-advocacy organizations representing Los Angeles, Riverside, and San Bernardino Counties. The 1-day conference agenda included: (1) An overview of the State of Breast Cancer within the African American community focusing on epidemiology, prevention via lifestyle practices, treatment, and survivorship; (2) survivorship and advocacy presentations by breast cancer survivors, (3) discussion about funding opportunities, (4) presentations about facilitators and barriers to community-research partnerships; (5) breakout sessions were researchers met with advocates, (6) culturally appropriate affirmations (e.g., singing, poetry), and (7) call to actions and future directions.

Results: In total, 77 individuals attended the conference. The conference participants consisted of researchers (25%), advocates (40%), and survivors (35%). The types of cancer-related services that participants were involved in consisted of education, information, resources (38%), support (36%), and access to care/navigation (20%). Conference benefits reported by participants included an increased capacity for utilizing research in advocacy (94%), increased urgency for research on African-Americans (89%), and increased knowledge about community-participatory research (86%). In addition, 71% reported they planned to work on a community-research partnership to develop a research proposal in the next year. The follow-up data documents that 6 agencies reported significant increases in participating in breast cancer programs and funding (10-100% increases). These benefits were attributed in part due to the conference and partnering with a scientific investigator.

Conclusion: Conference outcomes indicate that the African American survivor-advocate community is ready and available to collaborate with researchers to engage in the research process. In addition, there is a need for further training within both the advocacy and scientific communities to better prepare these constituents to collaborate. However, this conference helped to initiate collaborations among researchers and community organizations to generate the next set of CBPR proposals with direct benefit for California underserved communities