Native American Cancer Research (NACR) staff has been actively involved in the development and implementation of Native American cancer survivors’ support resources and services since 1993. Early work resulted in culturally appropriate and Native-specific breast cancer survivors’ support resources and materials, and Native-male-specific cancer support resources (print and video) developed using motivational and personal experiences shared during interviews with numerous Native cancer survivors from across the country. In recent years, NACR has added twelve cancer support circle module resources and an entire "Clinical Trials Education for Native Americans" curriculum (in partnership with Mayo’s Spirit of EAGLES and Krebs of the University of Colorado Health Sciences Center). Late June 2003, "Get on the Path to Breast Health", multi-session program, MS PowerPoint presentations specific to Native women, is being added to our web site.
NATIONAL NATIVE AMERICAN CANCER SURVIVORS’ SUPPORT NETWORK (P.I. Burhansstipanov) Supported by: Department of Defense (DAMD17-99-1-9310), the National Susan G. Komen Breast Cancer Foundation (99-3091), Mayo Clinic’s, "Spirit of E.A.G.L.E.S." (U01CA86098), and Native American Cancer Initiatives.
This community of survivors, which currently consists of 380 members, helps men and women survive cancer and improve their quality-of-life after diagnosis. The "network" created a cohort of Native breast cancer survivors and evaluated the survivor’s database to determine patterns of disease and care. The study chapter for this NCI R01 application will be drawn from this Network. Network members are Native American cancer patients, both genders, ages 20 and older, living on the North American continent. The project addresses various support issues and includes several unique and innovative programmatic components. The network continues to grow and evolve in its effectiveness assisting American Indian and Alaska Native (AI/AN) breast cancer survivors. Preliminary findings have been used to prioritize the unmet needs and issues related to accessing quality cancer care. We anticipate having over 500 enrolled members (both genders, multiple cancer sites) by spring 2004. Findings from this study are included in the "research design" section.
SUPPORT GROUP: NATIVE AMERICAN CANCER SURVIVOR SUPPORT CIRCLES (P.I. Restivo) Supported by: the California Community Foundation (1999-2001) and Native American Cancer Initiatives (2001-2003)
This is a culturally-specific cancer survivors’ support program based on the successful model developed by Zora Brown for African-American women. The Circles are twelve weekly sessions held in southern California. Each weekly session has a topic (e.g., "traditional Indian medicine and western medicine"), resource materials, includes journaling, and artwork. The support Circles are designed to provide direct support to Native American cancer patients, helping them access quality care, receive support via telephone, and receive culturally relevant survivor resources. The Circles also provided informational, emotional, and spiritual support for the loved ones of cancer patients. The Circle notebook contents are available online for free download as Adobe PDF files on the NACR web page.
TRAINING WORKSHOPS FOR NATIVE AMERICAN CANCER SUPPORT GROUP FACILITATORS (P.I. Restivo) Supported by: Mayo Clinics, "Spirit of E.A.G.L.E.S." (2002) (U01CA86098).
Although the 12-week series of support sessions for the Native American Cancer Support Circles are available on our web site, people still needed and requested training programs on how to best implement this program within their page2 community. Thus, Restivo created a comprehensive train-the-facilitator’s program through this grant. This project developed, implemented and evaluated a training program for intertribal cancer survivor support Circles/chapters which have been implemented in diverse, intertribal settings (e.g., Cherokee Nation (included five tribal programs), Hopi Nation, Denver urban Indian community, southern California reservation communities). This is one of multiple projects implemented by NACR which emphasizes workshop participant interactivity integrated throughout the training to increase participant skills to conduct support Circles in their local communities. Selected components of the Circle content will be integrated within the proposed study’s interventions.
NATIVE AMERICAN CANCER SURVIVORS’ QUALITY OF LIFE PROGRAM (P.I. Burhansstipanov) (POP0202135), May 2003 through April 2005) is supported by the National Susan G. Komen Breast Cancer Foundation
The purpose of this grant is to develop four interactive education modules: (a) patient-provider communication specific to QOL issues, (b) management of diabetes and cancer comorbidity, (c) unmanaged cancer-related pain, and (d) access to quality care clinical trials (e.g., brachytherapy for stage 1 and 2 breast cancer). This project will create the model for subsequent module development and will directly relate to the formatting implemented through the proposed NCI grant. However, there is no overlap on the topics and survey items to be developed through the NCI grant (see Table 4). UK PRC, staff from IDEA, and selected consultants are also partners on the Komen study.
CLINICAL TRIALS EDUCATION: CLINICAL TRIALS EDUCATION FOR COLORADO PROVIDERS (P.I. Linda U. Krebs, Ph.D.). Supported by: National Cancer Institute (R25CA82714).
This project has the goals of increasing provider referrals of women and minorities into cancer care trials and providing clinical trials educational materials that promote cultural competence to assist health care providers in these referrals. It was loosely based on the National Cancer Institute’s (NCI) Cancer Clinical Trials Education Program (CCTEP) designed to educate providers and consumers about cancer care trials. "Cancer Care Trials" (CCT) includes screening, prevention, treatment, and supportive care cancer trials. This project shows the research team’s experience working with clinical trials education resources and one of the modules is on quality of life clinical trials. UK PRC, NACR, and staff from IDEA are also partners on this grant.
CLINICAL TRIALS EDUCATION FOR NATIVE AMERICANS (P.I. Linda U. Krebs, Ph.D.). Supported by: the Cancer League of Colorado, the Spirit of EAGLES (Mayo Clinic) ( U01 CA86098), and Native American Cancer Initiatives (Pine, CO).
This curriculum evolved from the previous project and modified or created modules that were culturally relevant for Native Americans. It developed easy-to-understand, interactive educational workshops to increase Native American community members’ comprehension of clinical trials and subsequently to assist individuals with resources to help them determine whether or not they wish to participate in cancer clinical trials. During fall 2002 the twelve objectives and PowerPoint presentations that comprise this curriculum were released for dissemination (free-of-charge) on the NACR web site. Related to this clinical trials project is the video produced through Mayo’s Native Programs, "Native Americans and Clinical Trials," to which NACR was a partner. The first intertribal training of facilitators to implement the curriculum is scheduled for August 6-7, 2003 in Denver. Training faculty include NACR, staff from IDEA, Bradley Consulting and Krebs, all of whom are partners on this proposed NCI R01 application.
NATIVE-SPECIFIC CANCER EDUCATION MATERIALS (print and video). (P.I. Burhansstipanov) Supported by: Graham Foundation (Colorado Springs, CO), the Avon Breast Health Leadership Award (New York, NY), and Native American Cancer Initiatives (Pine, CO).
NACR develops, pretests, refines, then disseminates culturally specific cancer education and support resources. Most items are available free-of-charge through downloading the product from our web site. But in addition, Mayo Clinic’s Native CIRCLE has widely distributed NACR-produced materials. Survivor support resources are limited to those who enroll in the Network due to limited numbers of copies. For the survivor support resources, NACR staff interviewed 44 cancer survivors representing 27 different tribes. Using this footage, we produced several stories, such as the personal stories of 5 Native women diagnosed with breast cancer and how they overcame that diagnosis to continue living a vibrant, productive life. Other video stories included 22 Native Americans describing both their own and their family’s reaction to the breast cancer diagnosis, and 7 Native men discussing their pre-diagnosis, and their personal and family reactions to diagnosis. These videos have been warmly received by the community, despite their relatively modest technical quality. They also provided the focus of Krebs’ dissertation completed in 1997.
