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AI Cancer Support Circles Supported and Developed by: AI Cancer Support Circles Supported by: National Center for Minority Health and Health Disparities Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] The original Native American Cancer Survivors’ Support Circles were: Supported by the California Community Foundation Developed and pretested by Terrie Restivo (Cherokee Nation of Oklahoma) … The Cedar Circle Revisions and modifications were: Supported by Mayo Clinic’s “Spirit of E.A.G.L.E.S. SOE)” [NCI U01 CA86098] Developed and modified by Lisa D. Harjo, (Choctaw) and Linda Burhansstipanov (Cherokee Nation of Oklahoma) AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] OBJECTIVES By the end of this segment, the community participant will be able to: OBJECTIVES By the end of this segment, the community participant will be able to: 1. Describe unique features of the NACR Native American cancer support circles. 2. Identify three things that make a cancer support circle successful. 3. Describe how your Support Circle may be organized to be acceptable to your local community. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 2 4. Identify which resources are already in existence and are likely to be included within your local Circle. 5. Describe recruitment strategies specific to your local Circle. 6. Identify which topics are likely to be included as “sessions” within your local Circle. 3 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 4 What is an American Indian Cancer Survivor Support Circle? Overview of NACR Survivor Support Circles A place where American Indian cancer survivors can share their experiences with someone like them who has been there. A place where you can learn more about your cancer, your treatment, your recovery, and life after. A place your culture is respected and valued. AI Cancer Support Circles 6 Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 1 AI Cancer Support Circles What is culture? What are definitions of a “resource”? A way of life that includes foods, clothing, language, music, beliefs, religion, lodging, customs and art. An organization, literature, videos, media, etc. that you can get information from to use to learn about healthy life-skills, quality of care & end of life care information for physical, social, mental, emotional and/or spiritual support What is respect? To honor others, to treat others as you would like to treated. An organization that you can refer a client to An individual you can refer clients to AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 7 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 8 Examples of Available Native Specific Resources Native American Cancer Research (NACR) and the Survivors’ Network 1-800-537-8295 Mayo Clinic’s “Spirit of E.A.G.L.E.S.”, the Native C.I.R.C.L.E. and the Native WEB: 1-877-372-1617 Getting Started Non-Native, Accurate Information National Cancer Institute, Cancer Information Service 1-800-4-CANCER AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 9 How Does A Support Circle Work? How Did NACR’s Circles Start? A series of 8-12 meetings are set up with dates, locations, and topics Meeting dates are posted around the tribal community, in newsletters, and flyers are shared with American Indian community members. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 11 We learned from Terrie Restivo, consultant to NACR, who pretested the Native American Support Circles QUESTION: Where can you find materials for your support circle? Download them free off our webpage at www.NatAmCancer.org AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 2 12 AI Cancer Support Circles How Does the NACR Support Circle Work? NACR staff (Lisa Harjo) serves as the coordinator / facilitator Circle members tell NACR staff what they want, how often to meet, when, etc. She makes it happen AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 13 NACR Staff Provides Meeting Handouts And Materials Provides a notebook (as funding allows) with materials for the participants Provides healthy foods Many groups do this as a potluck, but healthy food is the guideline Provides speakers on topics requested by the Circle members when feasible Most local speakers volunteer their time to talk with the Circle AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 14 What are the benefits for members? Benefits for Participants Circle members receive support and caring from other members and the facilitator. Circle members learn more about their cancer, treatment, and recovery so they can improve their quality of life during and after cancer. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 16 What are the benefits for members? What are the benefits for members? Circle members learn how to handle the side effects of treatments through diet, herbal teas, and new behaviors. Circle members learn about resources in the community that can help them. Circle members find out they are not alone. Circle members build new relationships and friendships with other circle members. Circle members learn to have fun again and make plans for the future. Circle members learn more about themselves and their strengths. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 17 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 3 18 AI Cancer Support Circles How is an American Indian Support Circle different from another support circle? How do NACR Native Circles differ from non-Native support groups? American Indian support circles respect the spiritual beliefs of the members and allow them to bring their spirituality in to the Circle. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] How is an American Indian Support Circle different from another support circle? American Indian Cancer Support Circles American Indian spiritual elders are invited into the Circle to guide members, council members, pray with members, and to share their understanding of the times. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 20 21 Improve the Quality of Life for members Promote healing and wellness through the Medicine Wheel AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 22 What Are Some of the Ways That the Circles Are Unique? Ranged from 4 to 12 (~2 hour) weekly sessions Basics (food, typical agenda) Tailored for Native cultures Spirituality incorporated throughout the sessions One of the few support programs that have been evaluated for effectiveness (both nationwide & multi-racial) AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 23 Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 4 AI Cancer Support Circles Developing the Circles Example of the Typical Agenda Decide on Circle healthy snacks, beverages, arts, crafts, keynote speakers, etc. Opening Prayer and Welcome Pre-session learning Questions: Why would you want to have food & beverages? And why healthy food/drink? How might arts & crafts be used during the Circle? Why would keynote speakers be beneficial? AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 25 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 26 Typically one (3-hour) session per week Topic Discussion (20-45 minutes) Artwork (throughout unless sad or angry stories being shared) Sharing personal stories of grief, joy, humor and information (1 to 1-1/2 hours) Evaluations, contract, journaling (1/2 hour) Support for one another in the Circle Personal Goals / Contracts Journaling Post-Session Learning Closing Prayer 27 Organizing the Circle Agenda for Denver: AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 28 Components (parts) of the Circle Typically one (1½-2 hour) session per week Ranged from 5 week sessions to 12-week sessions Topic Discussion (15 minutes) Sharing personal stories of grief, joy, humor and information (1 to 1-1/2 hours) What topics does the group want for the next session (10 minutes) Evaluations (10 minutes) AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Sharing Healthy snacks Laughter Tears Affection and support Organizing the Circle Agenda for Southern California: Example of the Typical Agenda continued AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Topic or Guest Speaker Personal stories/progress since last week 29 1. Facilitators’ Checklist 2. Facilitators’ Outline 3. Ground Rules 4. Circle Prayer 5. Personal Inventory List 6. Topics Relevant to your Circle AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 5 30 AI Cancer Support Circles Components (parts) of the Circle 7. Keynote Speakers 8. 9. Literature Arts & Crafts 10. Interactions through games or tribal stories Journaling with Natural Mediums (e.g. stones, beads, etc) 11. 12. Facilitator’s Checklists Advertising / Recruitment AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 31 Facilitators’ Checklist Facilitator Qualifications You cannot “make” someone serve as the facilitator who does not want to do it Native American (survivor of family member of survivor preferred Compassion Integrity / honesty / trusted Commitment Want to work with Cancer Survivors / Thrivers and their Loved Ones AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 33 Facilitators’ Checklist ___Matches ___Cedar, Sage and/or Corn Pollen ___Abalone Shell and a holder for the shell ___Healthy Foods and Drinks (e.g. fruits, vegetables, juices) ___Water ___Cups ___Small Plates AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 34 Facilitators’ Checklist Materials to bring to each session continued: ___Napkins ___Eating Utensils (if applicable) ___Name Tents or Badges ___Tissue/Kleenex ___Arts & Crafts Supplies and Accessories ___Pens, Pencils, Notebook Paper ___Facilitator’s Notebook ___Medicine Wheel Forms ___Personal Contracts AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Materials to bring to each session: 35 Materials to bring to each session continued: Journal Paper (My Circle Journey) Copies of 3-hole punched Handouts for each participant for next session Referral Form for the National Native American Cancer Survivors’ Network Business Cards with Business Card Holder Additional items requested by participants AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 6 36 AI Cancer Support Circles Personal Inventory List for My Loved Ones Personal Inventory List ___Birth Certificate ___Driver’s License ___Social Security Card ___Tribal Card/Roll # ___Military Papers/Military ___Doctor Name/Phone ___Medicine Person ___Herbalist AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Personal Inventory List for My Loved Ones (continued) ___List of Prescriptions and dosage ___Hospital Name/Location ___Spiritual Advisor/Clergy ****Other Important Information**** ___Vehicle Registration and Ownership Slip ___Medical Insurance/Card AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 39 38 Personal Inventory List for My Loved Ones (continued) ___Life and Accident Insurance/Card ___Durable Power of Attorney for Health Care & Living Will ___Credit Cards ___Real Estate or Rental Papers ___Burial Papers AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 40 Developing the Circle Ground Rules Set your Circle Ground Rules Question: What is the definition of a “ground rule?” AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 7 42 AI Cancer Support Circles Ground Rules Ground Rules 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. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 43 Please form small groups of about 5 people each. Discuss possible ground rules that you would suggest for a support circle in your community. Groups will be asked to share their ideas and possible ground rules. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 44 Examples of Cedar Circle’s Ground Rules Ground Rules 1. Every session begins with the same Circle spiritual blessing or prayer. No one talks when someone else is talking. 2. Show respect for others...allow them to tell their story without interruptions. Whatever is said in the circle stays in the circle. 3. Family members and loved ones are welcomed to the group No cussing or bad words used during the Circle. 4. 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). AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 45 Examples of Cedar Circle’s Ground Rules 5. No Smoking in the building or during the Circles. 6. 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) 7. Circle participants, or their “designee,” determine whether or not to invite a speaker to stay for the rest of the Circle. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 47 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 46 Organizing the Circles for Southern California: The first (2) sessions are open for anyone to attend. Session #3 and beyond is closed to new participants Newly diagnosed people are referred to one-on-one telephone counseling until the next Circle begins to insure bonding between the current Circle participants AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 8 48 AI Cancer Support Circles Benefits/Drawbacks to Including New People Each Circle Session Benefits/Drawbacks to Including New People Each Circle Session Some communities feel uneasy with not allowing “new” people into the Circle after Session #2. Question: What do you think may happen if new people joined the Circle each Session? Based on discussion with Native survivors in your local Circles, you will need to decide whether or not you should allow new people to join in each week … especially in smaller communities Question: Why do you think this may have been important to the Circle participants to do this? AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 49 Opinion: Do you think your local Circles should be “closed” to allow for bonding and healing after the first few session? 2. Yes 3. Don’t know / not sure AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 51 0 / 75 Opinion: Do you think family (or loved ones) who are the caregivers should take part in the Circles? AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 52 Benefits/Drawbacks to Including New People Each Circle Session Question: If your Circle participants want to keep the Circle “private” after the 2nd session, how can your community provide support to someone who is newly diagnosed? 1. No, they should have their own Circle (i.e., Caregivers’ Circle) 2. Yes, they should be with the survivors EXCEPT when caregiver issues are discussed 3. Yes, they should be together for ALL topics 4. Don’t know / not sure 0 / 75 Opinion: Do you think men and women should be in the same Circle? 1. No, they should have their own Circle (i.e., Men’s Circle, Women’s Circle) 2. Yes, they should be together EXCEPT when sexual or intimate issues are discussed 3. Yes, they should be together for ALL topics 4. Don’t know / not sure 1. No 0 / 75 50 Question: Will your Circle participants be willing to do this? 53 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 9 54 AI Cancer Support Circles Benefits/Drawbacks to Including New People Each Circle Session Benefits/Drawbacks to Including New People Each Circle Session “Those who do not have the opportunity to evolve in their recovery tend to not complete the healing process” Question: If new people continue to join how will you help the group participants bond and move forward in their own recovery? Terrie Restivo AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 55 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 56 Ground Rules: Groups Report 1. List local AIAN community rules here Prayer or Blessing to start and end all sessions AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 57 58 Excerpt from the Cedar Circle’s Prayer Developing the Circles Create a prayer or a spiritual opening that is respectful to your local community Circle participants compose or write thoughts, feelings and drawings, or what they would want included in a prayer AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 59 Creator...thank you for bringing the women and men of the Circle back once more. Special prayers for all who were not able to make it here. Keep them safe in their travels and strong in heart. Special prayers that we remain in good heart and good mind throughout the session. Special prayers for the People of this land that they may continue in their quest to bring back their culture, their heritage, their traditions. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 10 60 AI Cancer Support Circles Excerpt from the Cedar Circle’s Prayer Excerpt from the Cedar Circle’s Prayer Special prayers that we can clear our minds, calm our hearts, strengthen our determination to work for the health of ourselves, Mother Earth and all of Her inhabitants. Special prayers that we have the strength to accept the stories of experiences shared by the women or men here; strength to accept the reality of a situation...both real or imagined; and ears to listen to the stories and to hear the joy or sadness in them. And, Creator, special prayers for patience to stop and listen to others; for the wisdom to understand them both inside and outside of our situations; for eyes to see around us the beauty and ugliness...and to take from that experience information to pass onto the next Circle. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 61 Thank you, Creator, for each breath we take; for the air; the water; the rain; the sun; the win; all that are on Mother Earth; all that is Above and all that is Below. Thank you for another day of living. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 62 Facilitator Outline ~ Session #1 Facilitator’s Outline for Each Session AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 63 OBJECTIVES: 1. Participants can briefly share their personal experience with cancer 2. Participants can identify unique characteristics of cancer in Native Americans 3. Participants can start the Circle opening prayer AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Facilitator Outline ~ Continued Facilitator Outline continued B. MATERIALS FACILITATOR needs to bring to this lesson, in addition to normal meeting supplies: 1. Notebook for each participant 2. Video tape machine and monitor 3. Video #1, #2, #6 4. Handouts: a) b) c) AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 65 64 Seascape Referral Form & Consent Form Introduction to Native American Cancer Survivors / Thrivers Support Circles Circle Ground Rules AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 11 66 AI Cancer Support Circles Facilitator Outline continued d) Personal Inventory List for Family & Other Loved Ones Personal Contract Circle Journal Paper Session Topics Ranking Medicine Wheel Evaluation Answer Sheet Blank paper and a pen or pencil for each participant (for AInote taking) Cancer Support Circles e) f) g) h) i) Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Facilitator Outline ~ continued C. AGENDA: 1. Blessing 2. Self-Introductions, including information such as a) Tribal Affiliation b) Are you a Survivor/Thriver, or are you a Loved One of a cancer patient c) Type of cancer & when diagnosed 67 What you want to get from the Circles 3. The Native Survivors’ Support Circles…[Distribute Notebooks with Intro Section included] a) Introduction (see program hand-out) AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 68 Facilitator Outline ~ continued Facilitator Outline ~ continued d) AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] b) Review Topics 1) Topic Survey is for participants to rank theTopics of Interest 2) Participants may write in additional Topics of Interest 3) The first two (2) sessions of the Circle are open to anyone, but will be closed from Session #3 on 69 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 70 Facilitator Outline ~ continued Facilitator Outline ~ continued 4. Ranking of Discussion Topics c) Review the format for each session (see handout) d) Review the Circle “Ground Rules.” Ask for revisions and/or other changes. (see handout) AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] a. Ask the participants to complete the ranking of Topics of Interest to them and remind them they can add new items to the list. 71 b. Collect those forms at the end of the session. New items added to the list will be shared with all participants of the group to determine if they are topics of AI Cancer Support Circles high interest. 72 Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 12 AI Cancer Support Circles Facilitator Outline ~ continued Facilitator Outline ~ continued 5. *Sharing Stories (ask for volunteer/s who is/are willing to share his/her experiences) *Keep this time approx 1 hour* 6. “Personal Contract” for next session ~ Each participant identifies at least one thing s/he will do between tonight and the next session that is focused to HER/HIS needs. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 73 7. Distribute Handouts for next session: which will be “Dietary Concerns “[you will finish Dietary Concerns ~ Traditional Food Session 10] 8. Evaluation ~ Using the Medicine Wheel Answer Sheet, ask participants to respond to questions 9. Closing Prayer AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 74 Sample Topic List Dietary Concerns Chemotherapy Examples of Topics and Handouts from NACR Survivor Support Circles Radiation Therapy Surgery Pain Control Intimacy and Sexuality Outlook on Life AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 75 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Dorcas Bloom Siberian Yupik Dx 1998 Breast AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 77 76 Cancer had really changed my life around for the betterment AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 13 78 AI Cancer Support Circles IHS Age-adjusted Malignant Neoplasm Death Rates AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 79 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] IHS Trends, 1999, Chart 4.33, p. 116 80 AI/AN cancer rates for all cancers, by region, both sexes, compared to US all race rates, 1999-2002 600 500 400 300 200 100 t So ut hw es P. Co as t t Ea s ns N. Pl ai US Al as ka 0 AI Cancer Support Special thanks to David Espey, MD andCircles Roberta Paisano, MHSA, IHS 81 National Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Epidemiology Program Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 14 AI Cancer Support Circles Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Espey, David K; Wo, Xiao-Chen; Swan Judith; Wiggins, Charles; Jim, Melissa A.; Ward, Elizabeth; Howe, Holly L.; Ries, Lynn A.G.; Miler, Barry A.; Jemal, Ahmedin; Ahmed, Faruque; Cobb, Nathaniel; Kaur, Judith S.; and Edwards, Brenda K. Annual Report to the Nation on the Status of Cancer, 1975-2004, Featuring Cancer in American Indians and Alaska Natives. Cancer [American Cancer Society]: 2007 [11-15-07]; Volume 110: No. 10. GRAPH MODIFIED BY Rick Clark, Native American Cancer Research Haverkamp D, Espey D, Paisano R, Cobb N., Cancer Mortality among AIAN: Regional Differences, 1999-2003, IHS, Rockville, MD 2008 Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 15 AI Cancer Support Circles Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, 1999-2003. Indian Health Service, Rockville, MD, February 2008. GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, 1999-2003. Indian Health Service, Rockville, MD, February 2008. GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, 1999-2003. Indian Health Service, Rockville, MD, February 2008. GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, 1999-2003. Indian Health Service, Rockville, MD, February 2008. GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) Excerpt from “Spiritual Healing” George Hogan III Crow Diagnosed: 1992 lung cancer Haverkamp D, Espey D, Paisano R, Cobb N. Cancer Mortality Among American Indians and Alaska Natives: Regional Differences, 1999-2003. Indian Health Service, Rockville, MD, February 2008. GRAPHS MODIFIED BY: Rick Clark, Native American Cancer Research (note horizontal grid) Oh, my spiritual life. I do a lot of spiritual work before my cancer and even after I had the surgery, I kept on with my spiritual work with the church, and it takes me along and helps me, and I look at it in a positive way. Spiritually I didn't have nothing to worry about, because I still have my life in the hands of God, go on living. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 16 96 AI Cancer Support Circles Excerpt from “Healing / Spirituality / Recovery -- All Cancer Sites Native American Cancer Survivors’ Stories about Healing” Katherine Big Hail Crow Dx 1993 Breast [translated by daughter] ... a lot of people were praying for her and she was in prayer and she even had a dream, a vision that the Lord showed her that she was already healed you know. While she, this happened while she was still real sick and uh and then uh once she seen this vision or dream and then she said well I know I’m gonna be all-right. She said to the other cancer patients, people that have cancer, she said if you’re willing to get healed she said you’re gonna get healed. Even from the help of your doctor, pray for your doctor, you know, work with him, like work with your doctor. (Native tongue) Ya, and then she said just go ahead with the treatment they’re helping you too so work with them, work with the doctor. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 97 Excerpt from “Personal Reaction to Cancer” Bonnie Heavy Runner Craig Blackfoot Diagnosed: 1991 ovarian cancer It was just an amazing experience to sit there and be totally alert, feel good, and have a doctor tell you that that you can't see because it came over the phone. How can this be? Why is this happening to me? What do we do? AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 99 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 98 Excerpt from “Personal Reaction to Cancer” When you first hear about it, to me it was kind of a scary situation, because I never did ever believe that I would ever come to the point where I would have cancer. Abe Conklin Ponca-Osage It kind of put fear into me. I Diagnosed: 1987 prostate cancer knew then that I should have gone earlier. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 100 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 102 Excerpt from “Personal Reaction to Cancer” Sarah S. Allman Oglala Sioux Diagnosed: 1970 cervix cancer I thought it was a killer, you know. I was always so scared of that word “cancer”. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 101 Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 17 AI Cancer Support Circles Excerpt from “Dietary Control during and following Treatment” I changed my diet, I didn't eat red meat. I cut out all kinds of fats, didn't use chocolate or eat fruits that weren't grown in this climate, a very strict regiment. No coffee, so I tried to stick with Angela Russell Crow that for the full year, half of that Diagnosed: 1987 breast cancer year of course I was on chemo, I think that made a difference to my body. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 103 Excerpt from “Chemotherapy” Frank Mercer Tlinqit-Raven Clan Diagnosed: 1992 colon cancer Well, I don't think I got really used to it, but it didn't bother me that much. I think the only discomfort I had from chemotherapy was when they .. inserted a needle … but as time went on, I got a little sensitive, but I got kind of used to it …some cases like my colon cancer, since it was caught in time, it is preventive measures that I went through that therapy. It was just to make sure there was no more cancer cells left in my system so, that is why on early detection, because the quicker they find the cancer in your body and isolate it, the less time you will spend in treatment. Like with me, I spent a little over a year, about 14 months, of chemotherapy. didn't affect me that much. AI Cancer SupportItCircles 105 Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Inactive Activity: Which topics do you feel are of most interest or need for local Native survivors? AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 104 Excerpt from “Chemotherapy -- All Cancer Sites Native American Cancer Survivors’ Stories” Jennie R. Joe Navajo Diagnosed: 1988 breast cancer Chemotherapy consisted of probably three different types of drugs. My treatment took almost a year, because with chemotherapy, they always give you time for your body to re build your blood cells, so I think you know the treatment isn't something that you can go in and have it done within two or three days. My particular cancer had spread through my lymph nodes at least one of them was positive, so I didn't have a choice, I had to have the chemotherapy. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 106 Examples of Session Topics Interactive Activity Dietary Concerns Benefits of Breast/Body Self-exams 1.In groups, please discuss which of the following topics you think your local community may want to have included Chemotherapy Radiation Therapy 2.What additional topics do you feel need to be added to be of most relevance to your survivors’ community? AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 107 Hormonal Therapy Surgery AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 18 108 AI Cancer Support Circles Examples of Session Topics continued Examples of Session Topics continued Pain Control Emotional Purging Economic Issues Follow-up Care Benefits of Physical Therapy Managing Home & Family During Care Intimacy and Sexuality Incorporating Traditional Healing with Modern Medicine Outlook on Life AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Closing Ceremony & Celebration 109 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 110 Advertising & Recruitment Recruitment Strategies for NACR Survivor Support Circles AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 111 How do patients learn about the support circle? How would you let people know about your upcoming Circles? Question: What tribal or Health Board approvals do you need to have in place before you advertise or recruit to your Circles? AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 112 How do patients learn about the support circle? Circle Members invite others who have or have had cancer. Organizations, both Indian and nonIndian, refer individuals to the Circle. Doctors and clinics who provide care for American Indian cancer patients refer circle members. Family members of cancer survivors are also invited to join in the meeting. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 113 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 19 114 AI Cancer Support Circles “Recruitment” of Survivors Advertising the California Circle: An example NACR Website http://NatAmCancer.org Fliers posted in the market Exhibit booth during Pow Wows and Health fairs Information in community newsletter Visit elder’s weekly “craft” gatherings to share information Native Wellness Conferences Community News Medical Center/Doctor/Clinic/I.H.S. Word of Mouth (“Moccasin Telegraph”) Telephone AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 115 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 116 Inactive Activity: For your local Native community, what strategies do you are most likely to spread the word about your Circles? 1. In small groups of about 5 people, please brain storm an additional survivors’ recruitment strategy that would be acceptable to your community. Personal Contracts 2. Now, identify an additional way to advertise the existence of these Circles. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 117 My Circle Journey Interactive Activity AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 118 Personal Health Contract (Weekly Activity) Focus on his / her needs at least 15 minutes per week Write thoughts, feelings, poems… Draw, cut or paste pictures Compose a song Group art using stones, shells, beads American Indian people always take care of their community / family before themselves Contract is between the participant and his or her God / Creator Contract is a weekly commitment AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 119 AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 20 120 AI Cancer Support Circles Weaving a Healthy Life Survivors’ Contract 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. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 121 Tips for Successful Circles Tips for Successful Circles AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 122 Tips for Successful Circles Begin each session with a prayer or silent time for members. Hold sessions at times that are convenient for members, for example evenings, weekends. Allow members to share their experiences during the week. Be flexible with the topics and modify agenda as the needs of the members demand. Survey members to see which topics they want to cover and in what order. Have tissues handy for members. Help to lighten the mood when necessary. AI Cancer Support Circles AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 123 Tips for Successful Circles 124 Tips for Successful Circles Have healthy and appropriate food available for meetings. Encourage circle members to establish rules for interaction and to follow them. Utilize the Medicine Wheel to address the physical, mental, emotional and spiritual aspects of life and survival. Hold meetings in a private, safe place. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 125 Be patient. Successful Circles take time to establish (Sometimes even a year or more.) Be persistent. Set meeting dates, hold meetings, even if only one person comes. And do it again and again. People will come. AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 21 126 AI Cancer Support Circles Tips for Successful Circles Local Artists Donate Artwork Keep the size of Circles reasonable. 610 members is a good number for interaction and trust. A superb way you can acknowledge your local talent is to seek artists from your community that will donate their artwork to your Circles NACR has had groups as small as 2 people. Remember to list your artists in your print materials AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 127 Medicine Wheel evaluations (pre and post-session questions used during development of the Circles) Overall session evaluations (every 4 sessions) Recommend these still be used … 129 The hardest work in holding Support Circles is that they are hard to keep “Continuing the Circle” Question: If or when you have this challenge, what are 3 things you can do to increase the likelihood of the group succeeding? AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] Thank you very much AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 128 Conclusion Evaluation AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] AI Cancer Support Circles Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 131 Native Navigators and the Cancer Continuum (NNACC) [NCMHD R24MD002811] 22 130