The National Native American Cancer Survivors' Support Network (The Network) is an educational community-based research study created in 1998 to help improve the quality of cancer care and the quality of life for all American Indian, Alaska Native, and First Nations cancer patients and their loved ones.
The Network is run through Native American Cancer Research (NACR) in collaboration with the National Indian Health Board (NIHB), the Indian Health Services (IHS) in New Mexico, The Native CIRCLE of the Mayo Clinic in Minnesota, and several other American Indian organizations.
This project is supported by: The Department of Defense (DAMD17-99-1-9310), Mayo Clinic's "Spirit of EAGLES" (U01CA86098), The National Susan G. Komen Breast Cancer Foundation, and Native American Cancer Initiatives. Previous supporters have been The Breast Cancer Fund, The Avon Breast Health Leadership Award and The Graham Foundation.
- To learn more about who is getting cancer in Indian Country and what type of care they are receiving
- To help Native cancer patients get the best quality cancer care before and after their diagnosis
- To identify quality of life issues (QOL) from a Native survivor's view point
- To share those cancer/quality of life issues that may influence long-term survival
- To encourage the development of survivor programs in local communities
- To improve communication between survivors, their loved ones, and health care providers.
- Offers social and emotional support
- Provides culturally specific educational materials to survivors and their loved ones
- Conducts one-on-one interviews with survivors to learn more about how they are dealing with their cancer and how their care can be improved.
- Connects members with other Native survivors who have had similar experiences.
- Supports a confidential database to monitor members and to track the types of cancer and cancer care.
- Service Users: Newly diagnosed cancer patients or those you are still going through treatment. We provide informational materials/resources and emotional support.
- Contributors to Native Knowledge: Cancer patients, who have finished their treatment, are in the healing process, and interested in helping us learn more about how cancer is affecting our communities. To help us we ask that you take part in an interview/questionnaire that provides us information about your cancer experience. By sharing your experiences with us you will be helping not only your own community, but all Native people in receiving the quality care and support they deserve. You will also be helping us in creating better Native education materials and cancer survivor programs.
- Loved Ones: Family members, friends, and/or caregivers who want to learn more about how to help their cancer patient.
For the Service Users and Contributors to Native Knowledge:
"Native American Breast Cancer Survivors": A six booklet series that shares stories from Native women breast cancer survivors. Titles include: Breast Cancer Screening, Our Symptoms, Personal and Family Reactions to Diagnosis, Cancer Treatment, and Outlook on Life.
Videos: There are 3 videos from the booklet series: "Stories of Our Diagnosis, Stories of Our Personal Reaction, and Family Reactions to Our Diagnosis". In addition there is also "Clinical Trials for Native Americans" and "Cancer Among Elder Native Americans".
For Loved Ones:
"Caring for a Loved One With Cancer": Ideas and different ways to help your loved one get through their diagnosis, treatment, recovery and healing. Although this book deals with breast cancer, many of the topics can also be useful for other cancers as well. A few of the topics include: coping with own feelings, spiritual healing, surgery, chemotherapy, and daily living skills. This is available on this website.
Men's Materials: There are also stories shared my male cancer survivors.
"Cancer among Native American Men": This booklet and video is from the "Native American Breast Cancer Survivors" series. Men of all ages share their stories about dealing with various forms of cancer. Topics include: symptoms, diagnosis and recovery, spiritual healing, risk factors and screening tests.
"Dream Warrior: My Red Road": A young man's personal journey through oral cancer.
* * * NEW DEVELOPMENTS * * *
While continuing to help new cancer patients and their loved ones, The Network has begun to create Quality of Life (QOL) educational modules that can be access over the Internet. These educational tools will provide information and resources for Native cancer survivors and their families. The topics come directly from the information, concerns and recommendations of our Network participants/members:
- Management of Diabetes and Cancer
- Improving Patient-Provider Communication
- Unmanaged Cancer-related Pain
- Introduction to Clinical Trials
- Nutrition and Cancer Healing
- Physical Activity and Cancer Healing
- Long-term Fatigue
- Radiation Care and Recovery
OUR INVITATION TO YOU...
We would like to invite all American Indian, Alaska Native and First Nations cancer patients and/or their loved ones to join our study. This is open to both adult men and women - whether you are newly diagnosed, in the healing process (completed your treatment and on the road to recovery) or a loved one who wants to help their cancer patient.
You will be helping, not only your own community, but all Native people in receiving the quality of care and support they deserve.
There is no cost to join our study. Simply call our Colorado office at either 303-838-9359 or 1-800- 537-8295. When you call one of our staff members will complete a referral form by asking you basic contact information and just a little bit about you so that we can determine which category best fits you. The contact information will also allow us to send you informational materials.
Because we ask "Contributors" to complete a questionnaire/interview for our research project we ask that they listen to an Informed Consent. This is just to make sure you fully understand our project. The information you share with us will be put into a database so that we collect information and learn more about how cancer is affecting our Native Communities. This information is totally confidential. Your name and contact information will be replaced with a study code in the database.
For more information about our Survivors' Network including our new educational modules, please give us a call at 303-838-9359 or 1-800-537-8295.