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Help & Support Circles

QOL Tree Help & Support Support Circles Participants Facilitators Guide

Overview

Native American Cancer Research Corporation (NACR) started conducting cancer support circles in different settings in 1997.

What is an American Indian Cancer Survivor Support Circle?

  • A place where
    • AI/AN cancer survivors can share their experiences with someone like them who has been there.
    • You can learn more about your cancer, your treatment, your recovery, and life after.
    • Your culture is respected and valued.
      • What is culture?
        • A way of life that includes foods, clothing, language, music, beliefs, religion, lodging, customs and art.
      • What is respect?
        • To honor others, to treat others as you would like to treated. 
  • The 1st American Indian survivorship support groups were created by Mary P. Lovato, Santo Domingo Pueblo Tribe, with assistance from the Indian Health Service ~1996 and called, A Gathering of Native Support

How does a Circle Work?

  • NACR started its Circles with a series of 8-12 meetings that were set up with dates, locations, and topics. Its Circles have been ongoing since 1999

  • Survivors like to have breaks (periods of weeks or months) when they attend or take part in multiple Pow Wows, Ceremonies, holidays, etc.)

  • Meeting dates are posted around the AI/AN community, in newsletters, and flyers are shared with American Indian community members

  • Native American Support Circles initially were refined implemented in California by Terrie Restivo (Cherokee Nation), consultant to NACR

  • NACR's Circles usually are facilitated by a member of the staff or a local volunteer through NACR

  • Circle members  (AI/AN survivors) tell NACR staff what they want, how often to meet, when, etc.  The facilitator makes it happen

  • NACR Staff /volunteer provides

    • Meeting handouts and materials 

    • Healthy foods

      • Many groups do this as a potluck

      • "Healthy food" is the guideline (so many of our members also are diabetic or overweight, the foods provided need to support their desires for a healthier lifestyle)

      • Speakers on topics requested by the Circle members when feasible

      • Most local speakers volunteer their time to talk with the Circle

What are benefits for members? 

Circle Members:

  • Receive support and caring from other members and the facilitator

  • Learn more about their cancer, treatment, and recovery so they can improve their quality of life during and after cancer

  • Receive support and caring from other members and the facilitator

  • Learn more about their cancer, treatment, and recovery so they can improve their quality of life during and after cancer

  • Learn how to handle the side effects of treatments through diet, herbal teas, and new behaviors

  • Find they are not alone

  • Learn to have fun again and make plans for the future

  • Learn about resources in the community that can help them

  • Build new relationships and friendships with other Circle members

  • Learn more about themselves and their strengths

How do AI/AN Support Circles differ from non-Native Support Groups

  • AI/AN Support Groups:

    • Build strongly on our cultural beliefs

    • Integrate body, mind, emotions and spirituality

      • Frequently promote healing and wellness through the Medicine Wheel or Circle of Life

    • Include and respect Traditional Indian healers, spiritual leaders and/or elders

      • Guide and pray with members

      • Explain “cancer” in relation to our ancestors’ challenges and our histories (overcoming difficulties in a good way)

      • Help us find the good lessons that we should learn from the cancer experience

What are some ways that NACR's AI/AN Circles are unique?

  • Started with 4 to 12  (~2 hour) weekly sessions (eventually met as frequently as requested by survivor participants)

  • Tailored for Native cultures

  • Spirituality incorporated throughout the sessions

  • One of the few support programs that have been evaluated for effectiveness (both nationwide and multi-racial)

Participant Handouts

Most of the detailed cancer topics are available throughout the NACES / Survivors tab

  • Handouts within these "Support Circle" pages are less detailed and easier-to-understand versions (such as, how to pronounce many cancer medical terms)
  • You are welcomed to review these either online or to print them out for you or others to read at their leisure.
  • All of the AI/ANs  who share their stories within these handouts gave their permission to use their names, tribal affiliations, and information about the type of cancer and when they were diagnosed.
    •  They provided their stories  to help others who are going through a cancer experience.
    •  Some of these people have passed on.
    •  But that does not mean that they died from their cancer.
      • Most did not.  
      •  For example, Some died heart conditions, other from accidents

 

  • The handouts included the Support Circle pages are from templates developed in the latter 1990s for local American Indian / Alaska Native  (AI/AN)    support circles.
    •  You are encouraged to tailor the information so that it is relevant to your local AI/AN cancer survivors support circle.
    •  We ask that you acknolwedge NACR for creating these templates 
    • All of the phone / fax numbers within these templates no longer work (Jared, I can edit the PDFs to correct those issues)
Circle Topic:  Cancer 100 

 JARED, please add this document to the Resource Tab but include a link here so that the reader can get to the document.   RESOURCE_SUPPORT_HND_Overview_Cancer.pdf 

  • Begins with a general description of cancer
  • Answers common questions like what ...
    • Is cancer (CAN-sir)
    • Types of cancer are having success with treatment
    • Are "risk factors"
    • Are examples of common behavioral risk factors
    • Are "hereditary" types of cancer
    • Are examples of behaviors that help to protect your health
    • Are common cancer terms and how do you pronounce them
      • Biopsy (bye-OP-see)
      • Diagnosis" (die-egg-NOH-sis)
      • Metastasis (ma-TAS-sta-sis)
      • Types of tumors (TOO-mer)
    • is cancer treatment
    • How are most cancers treated
  • Then it describes some common myths of providers about cancer in AI/ANs as well as some common myths AI/ANs have about cancer
  • The section ends with a brief description of the increasing problem of cancer among Native people
Circle Topic: Breast Cancer 100

JARED, please add this document to the Resource Tab but include a link here so that the reader can get to the document.  RESOURCES_Cancer_Support_HND_Breast_Cancer.pdf

  • Provides an overview of breast cancer in AI/ANs
  • Explains why "early diagnosis" so important for breast cancer
  • Describes different types of breast cancer, including "hereditary" forms of breast cancer and "Triple Negative" Breast Cancer
  • NOTE:  all of the data are out-dated
Circle Topic:  Radiation

JARED, please add this document to the Resource Tab but include a link here so that the reader can get to the document.  RESOURCES_Cancer_Support_HND_Radiation.pdf

  • Provides an overview of radiation with some background information
  • Side effects
  • Things your family can do to help you before, during, and following your radiation treatments
  • Several AI/ANs cancer patients share their experiences with radiation treatments
Circle Topic:  Chemotherapy
  • Provides a brief background of how chemotherapy
  • Ideas of ways loved ones can help you (the cancer patient before, during and following the chemotherapy
  • General guidelines about supportive care throughout chemo
  • Several AI/ANs cancer patients share their experiences with chemotherapy
  • The section ends with an excerpt from the Morra and Potts book, Choices, that describes common side effects to chemo drugs.

Participant Handbook and Worksheets

JARED, please add this document to the Resource Tab but include a link here so that the reader can get to the document.   RESOURCE_SUPPORT_CIRCLE_Participants_HND.pdf 

  • Native American Cancer Survivors' Support Circles
  • Acknowledgements
  • Introduction
  • Topics
  • Explanation of Components within the Circle
  • Circle Ground Rules
  • My Circle Journal
  • Written Journal
  • My Circle Journal
  • Picture / Drawing / Paint / Collage Journal
  • Contract
  • Topic Survey
  • Personal Inventory List
  • My Family and Other Loved Ones
  • Circle Opening Prayer
  • Circle Topics: Emotional Purging/Personal Reactions
  • Living with cancer is a challenge

Facilitator's Guide includes

  • A “Ground Rule” is a set of directions for conduct and processes throughout your Circle.

    • “Ground Rules” refer to how participants should behave with one another during and after the support circle

    • Circle participants need to develop and agree to a set of ground rules

    • Examples of Circle Ground Rules

      • Every session begins with a spiritual blessing or prayer.
      • Show respect for others...allow them to tell their story without interruptions.
      • Family members and loved ones are welcomed to the group
      • No Smoking in the building or during the Circles.
      • Whatever is said in the Circle stays in the Circle
      • Positive supportive comments should take place while arts & crafts are being worked on (i.e., no negativity toward others or ourselves; spiritual pain could feed into our and others= artwork).
      • Circle participants, or their “designee,” determine whether or not to invite a speaker to stay for the rest of the Circle.
      • No cussing or bad words used during the Circle
      • Nutritious foods & beverages only (i.e., fruits, vegetables, juices, occasionally sandwiches and other healthy snacks to promote health, healing and good tastes.  Please do not bring sodas, burgers, fast-foods, etc. (Remind diabetics to watch their exchanges)
      • Circle participants, or their “designee,” determine whether or not to invite a speaker to stay for the rest of the Circle
    • Circle survivors/participants need to make some decisions

      • Should there be a limit as to the number of participants in each Circle

        • Most agreed that even if 3 people wanted to meet, the Circle should continue

        • But what if the Circle expands to 25? At what number does the Circle become more than one?

      • How deal with constant influx of new survivors to the group?
        • No one ever wanted to exclude a survivor from support!

        • But some members felt uneasy allowing “new” people into the Circle after the 3rd or 4th session. Why? 

          • They felt the previous members had already created a bond and needed it to strengthen

          • They felt that the bonds that had been developed were helping them learn how to better cope or deal with their cancer

          • They wanted one-on-one counseling available for newly diagnosed or new members of the Circle

        • Some wanted new Circles to be started when at least 3 people were newly diagnosed or new to the Circle
        • Other survivors felt they had evolved sufficiently through the cancer experience that they were ready to help and sponsor the members who were newly diagnosed or new to the Circle (i.e., roles of Aunties and Uncles)
      • Do the Circle members want the group to have both men and women in the same Circle, or should they be separated by gender or only separated for specific sensitive topics (e.g., sexual intimacy)?
      • Should family members who are caregivers be included in the same Circle, or should they have their own?
      • It is the AI/AN cultural norm to bring children to any AI/AN event
        • Should the Circle provide a babysitter to entertain the children
        • How should children be protected when upsetting, emotional topics are raised in the Circle?

  • Survivors' inventory list; Survivors organize their paperwork and documents for family members who may also be caregivers

    • Birth Certificate

    • Driver’s License

    • Social Security Card

    • Tribal Card / Roll #

    • Military Papers / Military documentation

    • Doctor Name / Phone

    • Social Workers Name / Phone

    • Medicine Person

    • Herbalist

    • List of Prescriptions and dosage

    • Hospital Name/Location

    • Spiritual Advisor/Clergy

    • Vehicle Registration and Ownership Slip

    • Medical Insurance/Card

    • Life and Accident Insurance/Card

    • Durable Power of Attorney for Health Care & Living Will

    • Credit Cards

    • Real Estate or Rental Papers

    • Written Will

    • Advanced Directives

  • Examples of Topics and Handouts from NACR Survivor Support Circles

    • Dietary concerns
    • Spirituality and healing
    • Chemotherapy  
    • Radiation therapy
    • Surgery
    • Pain control  
    • Intimacy and sexuality 
    • Outlook on life
    • being a survivor and becoming a thriver
    • financial issues (how to get help to pay bills)
    • Benefits of physical therapy
    • Benefits of physical activity
    • Emotional purging and healing
  • Personal Journalling
    • Write thoughts, feelings, poems…
    • Draw, cut or paste pictures
    • Compose a song
    • Arts or crafts using stones, shells, beads
  • Personal Contracts
    • Focus on your own needs at least 15 minutes per week  
      • Contract is a weekly commitment
      • American Indian people always take care of their community / family before themselves
      • Contract is between the participant and his or her God / Creator
      • ​​​​​​​Example:  I, ______ do hereby promise my God/Creator that I will take 15 minutes strictly for myself this next week; I will take a few minutes to watch a butterfly dance or listen to the beautiful songs of a bird, or look up and see the stars looking down on me.
  • Challenges
    • Find a convenient location that will allow the Circle to meet
      • Such as, NACR's were held in local Churches' meeting rooms free-of-cost
    • Participants need to agree on how frequently to meet and when to take breaks (e.g., Ceremonies, PowWow schedules)
    • How to handle disruptive / angry member of the group
    • When and how to disband a Circle
    • But, overall, the biggest challenge is getting the Circle started and then maintaining it!