Introduction to NACES
Introduction to Native American Cancer Education for Survivors (NACES)

What is "Native American Cancer Education for Survivors" (NACES) and who is it for?

  • An educational program designed to help you improve your quality of life.
  • For Native American breast cancer survivors and those who care for them.
  • A research study to learn:
    • What types of education information are of most use to you.
    • If information can be adapted to fit you based on answers you provide to a number of surveys.
  • Information is available to you in two ways:
    • Directly on the Internet
    • With the help of a Native Patient Advocate
  • Most of the information may be useful to people with other types of cancer.
  • Non-Natives are welcome to use the information.
  • Any information you provide is protected in two ways:
    • It is stored in a separate, encrypted database.
    • The Privacy Broker is the only one who has this information .
Who is this information for?
  • The information is for Native Americans diagnosed with breast cancer. However, all people are welcomed to use these resources and should find them helpful.
What will I find here?
  1. Education information about breast cancer
  2. Surveys:
    1. To adapt the education information to fit you
    2. To develop future education topics
  3. Resources
  4. Examples of questions for you to ask your provider
  5. Stories from Native Survivors
  6. Storytellers talking about surviving and dealing with cancer
Before you go into the educational topics, we really need you to fill out at least the first 3 surveys. This is to help us learn about you, so that the information can be adapted to fit you. It also helps us learn what new topics to develop.
    Reminder:
  • All survey information is confidential
  • It is only identified by your code name
  • Any information that is shared by a report or description only uses code names
  • Your personal information is in a totally separate encrypted database that only the Privacy Broker can get in to
What we would like you to do while you are in the tree.
  • Over the first few visits to the tree, we would like you to answer at least the first three surveys.
    • You can go to any of the limbs or their branches that are ready for you to use.
  • When you are done looking at a topic, we would like you to tell us your opinion about the information. There is a comment box at the bottom of each page.
    • What did you like?
    • What would you like to have changed?
    • What parts were most useful to you?
    • Did you learn something you didn't know before?
    • Was something missing that you wanted?
Cultural issues are integrated throughout the branches and leaves. Traditional Indian Medicine is also a separate topic on the "mind and spirit" branch.

How do you get to this information?
You can get the information directly from the web page. You can also get help from Native Sisters at the toll free number 1-800-537-8295. The Native Sisters will guide you through the information available on the tree.

How can you get help?
You can call a "Patient Advocate" at the toll free number 1-800-537-8295. The Native Sisters will answer your questions and provide help. They are in the office Monday through Friday from about 9 a.m. to 4 p.m. On long holiday weekends, one of the Advocates checks the phone for messages.

How are some words used in this information?
"Healthcare provider" is used to describe all of the members of the Western healthcare team who work with you throughout your cancer experience. This includes doctors, nurses, social workers, dietician, radiologists, and any other member of your healthcare team. The meaning of the term changes within some branches or leaves. For example, on the nutrition leaf, healthcare provider would include the dietician, diabetic nurse educator, or the CHR / CHA / CHAP who is helping you learn how to eat better during and after treatment.

There are several choices for how you refer to yourself: American Indian, Alaska Native, Native American, Aboriginal, First Nation, First Peoples, Indigenous Peoples, and so on. You may select your preferred phrase and whenever possible, your choice will be used. There are some sections where this is not possible. For example, cancer statistics are available only for American Indians, Alaska Natives and Aboriginals of Canada.

Additionally, you can choose whether you want to be called a survivor, patient, thriver, or participant.

What is the value of taking the time to complete the sets of questions (called, "intakes")?
There are four different sets of questions. These are found on the trunk of the tree and we would like you to answer them. You do not have to answer all of them at the same time. The web site will remember which ones you have already finished. These questions help the web site give you information that is personal to your current experience with breast cancer.

These questions include areas such as personal information about you (such as, what region of the country you are from), your personal experience with breast cancer (such as, when you were diagnosed with breast cancer), your current cancer condition (such as, cancer-free), and your quality of life (such as, being able to do the things you want to do). The value of taking the time to complete the questions is to help you see topics that you may want to look at FIRST. Also, your answers to the questions will change words like "his" or "hers" and "him" and "her" so that it is more personal to you.

After you finish the intakes, some leaves on the tree will light up to let you know there is some information available for you based on your answers. This does not limit you from looking at information on other leaves. You are welcomed to look at everything.

What do you need to do to take part?
No money is involved. You can go into the information as often as you would like. You can do this by yourself or with the help of a family member, friend, or the NACR Native Sisters. In order to take part, you will need to get a code name. This is to protect your privacy and make certain your information is not shared with others. Once you go into the tree, there will be directions to help you get your personal code name.

What NACR would like you to do while you are in the tree.
Over the first few visits to the tree, NACR would like you to answer the four sets of questions. We have four large branches ready for you to use: improving patient-provider communication, dealing with breast cancer and diabetes, unmanaged cancer pain, and clinical trials. We are working on 9 more branches, but these will not be ready for a while. When you are done looking at a section, we hope you will take the time to tell us your opinion about the information. What it useful? Did you learn something you didn't know before? Was something missing that you wanted? Please tell us what we still need to add in that section. There will be areas that ask you for your opinions to help us make this more useful for you and others.



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