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Circle of Life Initiative. Rebecca Cowens-Alvarado, MPH Director of Cancer Strategy, Principal Investigator Octavia Vogel, MPH Program Coordinator. Objectives. Introduce the American Cancer Society Introduce Circle of Life Initiative - PowerPoint PPT Presentation
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Rebecca Cowens-Alvarado, MPH
Director of Cancer Strategy, Principal Investigator
Octavia Vogel, MPHProgram Coordinator
Circle of Life Initiative
Objectives
Introduce the American Cancer Society
Introduce Circle of Life Initiative
Review impact of historical events on AIAN health care beliefs and access
Review background and need
Review Year 01 (2008-09) objectives and progress to date
Review potential objectives for Years 02-05 (2009-2013)
American Cancer Society Mission
• Live Well: We educate an empower people to reduce their risk of cancer.
• Get Well: We help patients and their loved ones make decisions and overcome obstacles in their personal fight
• Find Cures: We invest in research that yields groundbreaking discoveries into cancer’s causes and cures
• Fight Back: We help pass laws that fight cancer and keep families healthy
Every day, The American Cancer Society saves lives. Together, we are helping people:
A Few FactsFounded in 1913 as the American Society for the Control of Cancer (ASCC)
Reorganized in 1945 the American Cancer Society
Nationwide
Volunteer-driven
Hope Lodge
Business Support
ACS Leadership Roles
Circle of Life – An Ideal Fit
2015 Nationwide Challenge Goals • 50% Reduction in Age-Adjusted Cancer Mortality Rates• 25% Reduction in Age-adjusted Cancer Incidence Rates• Measurable Improvement in Quality of Life
ACS Leadership Roles
• Information• Research
• Quality of Life• Prevention & Detection
AdvocacyAdvocacy DisparitiesDisparities
Disparities Goals• Increase trust, credibility in target populations• Ensure effective practices through strategic
guidance & resources• Strengthen capacity in diverse communities• Diversify volunteer, staff, leadership & donor base
Disparities Goals• Increase trust, credibility in target populations• Ensure effective practices through strategic
guidance & resources• Strengthen capacity in diverse communities• Diversify volunteer, staff, leadership & donor base
Circle Of
Life
Circle Of
Life
Circle of Life – ACS
National Level
• Circle of Life Advisory Group
• Native American Cancer Research
• AI/AN Leadership Initiative on Cancer (Spirit of Eagles and Native Circle)
• Indian Health Service
State / Division Level
• State and Tribal Comprehensive Cancer Control Plans
• Various Tribal Consortiums, such as:
Alaska Native Tribal Health Consortium
South Puget Intertribal Planning Agency
Northwest Tribal Cancer & Diabetes Project
Inter-Tribal Council of Michigan
Northeastern Inter-Tribal Council
•Community Health Orgs.
•Tribal Councils Community Presence
Division Configurations
Diversity
Marketing
Advocacy(ACS Cancer
ActionNetwork)
VoluntarismCorporate
Communications
Disparities
Research
Income Development
Health Promotions
CIRCLE OF LIFE
Circle Of
Life
Circle Of
Life
*NHO – National Home Office
Internal Collaborations at NHO*
• Grants• Cancer Control
Science• Epidemiology• Behavioral Research• Statistics &
Evaluation Center
• Strategy Development
• Comprehensive Cancer Control
• Program Delivery & Evaluation
• Hope Lodges• Content – Web-
based, brochures, etc.
• Books & Journals• National Cancer
Information Center
Indian Health
Services
AmericanCancerSociety
Divisions
AmericanCancerSocietyLocal
Offices
TribalConsortiums
TribesRepresented
ByAdvisory
Group
InterculturalCancerCouncil
Tribal CCCPrograms
CentersFor Disease
Control &Prevention
AI/ANLeadershipInitiative on
Cancer
NativeAmerican
CancerResearch
AmericanCancerSocietyNHO*
CIRCLE OF LIFE
Circle Of
Life
Circle Of
Life
External Collaborations – Beyond NHO*
*NHO – National Home Office
Circle of Life Goal
The goal of Circle of Life is to decrease cancer mortality and
improve the quality of life of AIAN populations.
Circle of Life Objectives
Utilize existing and develop new resources to train AIAN community health workers and volunteers to educate community members on:
the importance of yearly mammography and other cancer screenings;
the link between maintaining a healthy diet and staying physically active to reduce the risk of cancer and other chronic diseases;
the Society’s Cancer Resource Network (CRN) which connects constituents to cancer prevention, detection, and quality of life information and resources.
Background and Need
There are more than 500 federally recognized American Indian/ Alaska Native (AIAN) tribes in the U.S.
These tribes speak more than 217 different languages, live on more than 300 reservations located in 33 states
AIAN populations live in all 50 states, thus making it difficult to provide acceptable and adequate health care services
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Over the last 30 years, cancer has become the third leading cause of death among all AIAN’s
Among AIAN 45 years and older cancer is the second leading cause of death
Breast cancer is the first leading cause of death among Alaska Native women and the second leading cause of death among American Indian women
Background and Need
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Cancer Data for AIANs
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
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
Cancer Incidence in AIAN Women
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
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
Cancer Incidence in AIAN Men
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Haverkamp D, Espey D, Paisano R, Cobb N., Cancer Mortality among AIAN: RegionalDifferences, 1999-2003, IHS, Rockville, MD 2008
Cancer Mortality Rates in Men & Women
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Racism/PovertyPost Traumatic
Stress DisordersBoarding Schools
Addiction
Depression
Children never parented so never learned to parent
Neglect/Abuse of Children
“Inadequate Mirroring”
Unresolved GriefCoping:
Unhealthy Behaviors
Long histories of subjugation, historical trauma, unresolved grief and the challenges of changing cultures, poor economics, and
lack of opportunities are negative and destructive
Culture-wide Multiple Traumas
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Example: distrust = avoid Western medicine
What are specific examples related to cancer?
Cancer clinical trials (especially treatment trials)
Cancer genetic studies
How May Historical Trauma Affect AIANs Use of the Healthcare System?
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
The rate of cancer incidence among AIAN is about half that of whites, but the mortality rate for cancer is 70% of whites
AIAN have the lowest survival rate from all cancers combined compared to all other racial/ethnic groups
Cancer Disparities
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Cancer services not being delivered as a continuum of care
Lack of prevention, screening, follow-up, adequate training, timely initiation of treatment, end-of-life care
Cancer service providers allowing racism and other biases to affect their job performance
Community’s distrust of cancer prevention and early detection services when received from those not within their own community
Cultural, religious and traditional tribal beliefs that are not always compatible with evidence-based or best-available medical practices
Barriers to Cancer Care
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Cost lack of or under-insured lack of ability to take time off work
Physical geographic isolation lack of transportation inconvenient hours of clinical services frailty or physical disability
Barriers to Cancer Care
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Barriers to Cancer Care
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Competing life demands Lack of awareness or ability to derive
benefit from available services (due to language differences, low literacy, or impairments).
The need for social support -- defined as emotional, informational, appraisal, and instrumental support
Lack of clear communication about differing understandings of health and disease between patient and provider
Barriers to Cancer Care
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Fear Lack of language, education and
acculturation Perceived racial, economic and gender
bias Lack of having a regular doctor Lack of cultural competence on the part of
healthcare providers
Administrative Barriers
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Access to care, including screening services and referral to quality treatment
Funding for services Staff Turnover and/or Lack of Qualified
Native Staff to carry out grant(s) Reservations not supporting enrolled tribal
members who live in urban areas; and/or Tribal Jealousy
Administrative Barriers
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Lack of support for treating state-recognized; non-US-federally recognized tribal members
Patients who are Canadian Aboriginals and need BCC programs
Long Travel Distances to cancer treatment IHS interference with urban Indian clinics
operations
Administrative Barriers
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Leadership issues in Indian health programs including needing to prioritize tribal funds
Title V relevant to NBCCEP Small numbers living in diverse regions Providing services to AIAN homeless people or
medically underserved Natives who have been treated poorly in the past and refuse to return to healthcare system
Dealing with Natives who refuse western medicine and solely rely on traditional Indian medicine (Indians who seek help from bogus self-proclaimed, Spiritual Healers).
1991
2000
2001
Circle of Life program launched in Oklahoma
Educational materials developed
Train the trainer focused on BSE
ACS reviews program
Program emphasis shifted toward mammography
Funding to support tribal Breast Cancer Screening Programs supports emphasis of mammography promotion and outreach
Program field tested in five communities
Updated training and program materials focus on mammography screening
ACS re-branded the Circle of Life to meet new corporate branding guidelines
This “update” marked the decline in the use of the program due to lack of culturally appropriate materials
2008
ACS received CDC grant (September) to revise and expand program
Divisions engaged (October / November) to identify external and internal experts to serve on Circle of Life Advisory Group
2009
Advisory Group members convene in Atlanta (January) to discuss program status and identify program areas to be updated and revised
Circle of Life History
In 2007, the University of Oklahoma Health Sciences Center findings:
The continued relevance of Circle of Life
A need to revise the materials
A need to target the specific cultural values of the AIAN population
The need to improve the health care system interface
Recent Circle of Life Research
Recommend existing resources that are evaluated and effective
Identify gaps in resources and partner with AIAN communities to develop tools and materials to address the gaps
Provide support and training opportunities for AIAN community
Strengthen and expand nation wide and local collaborations to help sustain the Circle of Life initiative and meet the ongoing needs of AIAN communities
Potential Opportunities
Source: Native American Cancer Research, 2008 (http://www.natamcancer.org)
Convene a multi-tribal AIAN Advisory Group with nationwide representation
Seek guidance from the Advisory group to identify priorities for the Circle of Life
Identify and include existing resources that have been evaluated and are effective
Identify gaps in resources and develop new or enhance existing resources to meet the needs
Conduct “Talking Circles” to test new or revised materials
CDC Grant Objectives – Year 01
Pilot train-the-trainer materials with Oklahoma tribes
Partner with a college or university in Oklahoma to hire an AI intern
Work with an Advisory Group member to mentor the intern
Conduct partnership assessment (intern project)
Ensure that AIAN collaborations are integrated with Society’s overarching priorities (e.g., access to care, addressing disparities)
CDC Grant Objectives – Year 01
Formed AIAN Advisory Group
Held initial face-to-face Advisory Group meeting – January 7-8, 2009 in Atlanta
Year 01 Progress
Turtle Mountain Chippewa Cherokee Nation of OK Cherokee Tribe of Kentucky Fond du Lac Reservation Santee Omaha Navajo-Ute Assiniboine (Fort Belknap Res)
Santa Clara Pueblo Santee Sioux Nisqually Tribe
Seneca Nation of Indians (Irving Res)
Yankton Sioux Comanche Nation Poarch Creek Indians Chippewa Tolowa Hopi Yupik Eskimo (Cook Inlet
Region, Inc.) Pascua Yaqui Gabrielino Tongva
Follow-up with the Spirit of Eagles and Native American Cancer Research along with input from the advisory group members to identify existing resources
Work with the advisory group members to identify gaps in resources and establish priorities for Year 01 development and testing
Develop detailed action plan to achieve Year 01 objectives
Hold monthly conference calls Plan next face-to-face meeting Plan for “talking circles” and training pilot
Year 01 Next Steps
Tribes and Reservations represented by Advisory Group
Turtle Mountain Chippewa Cherokee Nation of OK Cherokee Tribe of
Kentucky Fond du Lac Reservation Santee Omaha Navajo-Ute Assiniboine (Fort Belknap
Res) Santa Clara Pueblo Santee Sioux Nisqually Tribe
Seneca Nation of Indians (Irving Res)
Yankton Sioux Comanche Nation Poarch Creek Indians Chippewa Tolowa Hopi Yupik Eskimo (Cook Inlet
Region, Inc.) Pascua Yaqui Gabrielino Tongva
Engage additional partners
Conduct additional pilots with AIAN tribes around the US Alaska Native Southwestern Northwestern Midwestern Northeastern tribes
Revise materials and trainings as necessary
Monitor the implementation of the initiative in Oklahoma and begin process evaluation
CDC Grant Objectives – Year 02
Deliver regional trainings in partnership with CCC, NBCCEDP, IHS, and other identified partners
Provide technical assistance to Divisions and tribes interested in initiating a Circle of Life program
Continue to monitor and evaluation implementation and dissemination process
Conduct outcomes evaluation
Ensure sustainability of program
CDC Grant Objectives – Years 03 - 05
Thank You!