The Shawl Circle – Hoktvke Yekce

1. A collaborative effort between the Bureau of HIV/AIDS, Prevention Section and the Breast and Cervical Cancer Early Detection Program – Florida Department of Health

2. The Shawl Circle – Hoktvke Yekce Main Goals: • Educate American Indian women about HIV, breast and cervical cancer and the importance of prevention • Empower American Indian women to take charge of their health and the health of their family and community • Increase American Indian women’s awareness of health resources available throughout the state • Establish and strengthen relationships between the American Indian community and the Florida Department of Health

3. The Shawl Circle – Hoktvke Yekce What is it? • This is the first project developed specifically for Florida’s American Indian women. The goal was to bring 10 women together – our initial 10 women – from groups across the state, provide them with the HIV prevention and breast and cervical cancer early detection education information. Those 10 women then go back to their communities and educate another 10 women there. As each woman completes the program, they are presented with a specially designed shawl to show their inclusion in The Shawl Circle.

4. The Shawl Circle – Hoktvke Yekce • Why focus on HIV and Breast and Cervical Cancer? • HIV can be transmitted from mother-to-child through breast milk • Cervical Cancer can be caused by the HPV virus – a sexually transmitted disease. HIV is also a sexually transmitted disease.

5. The Shawl Circle – Hoktvke Yekce What is the time frame? • Community assessment began in the Fall of 2009. True implementation of the program began in January 2010. The program will continue through the calendar year.

6. The Shawl Circle – Hoktvke Yekce How did it begin–the Community Assessments • The first step was a community assessment to determine how HIV and breast and cervical cancer is viewed among Florida’s American Indian community. Prevention staff went to various gatherings across the state conducting surveys. The surveys were also distributed by regular mail and e-mail.

9. The Shawl Circle Identification of Community Health Advocates (CHAs) • While the survey was being conducted, women were being identified through tribal leaders and peers to become one of the initial 10 women to attend the Shawl Circle training. • The women were nominated by their communities as being leaders and chosen to represent their tribe/band/clan as a health advocate for the Shawl Circle program. • The initial 10 women were invited to participate in the first ever Shawl Circle American Indian Women’s Conference where their training as a Community Health Advocate (CHA) took place.

10. The Shawl Circle Community Health Advocates Featured: Brandi Yant, Wendy Johns, Deborah Hinote, Pat Easterwood, Shannon Welch, Raven Stanley, Darlene Belanger, Elaine McClure, Mollie McLeod, Debbie Bush

11. Shawl Circle American Indian Women’s Conference January 22-23, 2010 Tallahassee, FL

12. The Shawl Circle Training for the Community Health Advocates (CHAs) • At the conclusion of the training, each CHA was presented with a shawl, certificate, and all educational materials needed to conduct the programs in her area. Department staff remain available to each woman to provide technical assistance throughout the project.

13. Shawl Presentations Presentation of shawls, certificates, and rolling kits to each Community Health Advocate (CHA) at the completion of the conference/training.

14. Contents of Shawl Circle Kits • Komen breast self-awareness shower card • CDC Cervical Cancer Fact Sheet • CDC Breast Cancer Fact Sheet • American Indian Mammogram Facts bookmark • AHRQ (Agency for Healthcare Research & Quality) Screening Guidelines brochure • Heart Disease and Stroke information packet • Native Women and Domestic Violence brochure • HPV Fact Sheets • HPV Poster • Pocket-Minder: HIV Facts • Women and HIV: Think About It brochure • HIV Facts brochure • HIV Testing brochure • STD Facts brochure • HIV: Talking to Your Child brochure • The Shawl Circle Community Health Advocate Training Manual • Breast & Cervical Cancer Education Slides (in binder) • HIV/AIDS Education Slides (in binder) • Condom Training Aide • Condoms • Stress Ball • Emery boards • Self-Stick Paper • Markers • HIV 101 DVD HIV 101: In the News • Flash Drive w/educational presentations • Your Choice for Change (heart disease booklet) • Type-2 Diabetes educational brochure • What with Women with HPV Need to Know (booklet) • Additional Health Resource Materials

15. The Shawl Circle Program Goals- Year One • The CHAs have one year to complete their classes. Their goal is to teach 10 additional women HIV prevention and breast and cervical cancer early detection information (for a total of 100 women reached). At the end of the 1st year, the Department will do a follow-up assessment of the community and more specifically, all the participants to see if there is a better understanding of HIV prevention and breast and cervical cancer early detection.

16. The Shawl Circle Shawl Circle Classes • As each woman conducts a class in her area, shawls for her participants are provided along with any additional educational materials she may need. As part of the woman’s program, the Department helps to arrange for free HIV testing at her event, if she chooses.

17. The Shawl CircleProgram Goals- Year One Accomplishments to date • From January 2010 to date, 55 women have completed a Shawl Circle class • There has been a 10% increase in HIV testing among American Indians in Florida during the first six months of the project compared to the same time frame last year. • During this time, the Breast and Cervical Cancer Early Detection Program has seen an increase of 31 percent.

18. Biggest Belief Changes to Date • During the Community Assessment phase of the project, we immediately noted areas of concern: • Mosquitoes transmit HIV • HIV cannot be transmitted through breast milk • An HIV positive woman will always infect her baby

19. Biggest Belief Changes to Date • Since implementation of the Shawl Circle classes: • Mosquitoes can transmit HIV • At Pre-Test – 68% indicated this was false • At Post-Test – 95% indicated this was false • HIV cannot be transmitted through breast milk • At Pre-Test – 26% indicated this was true • At Post–Test – 0% indicated this was true • HIV medicine can help prevent mother-to-baby transmission • At Pre-Test – 67% indicated this was true • At Post-Test – 82% indicated this was true

20. The Shawl Circle – Hoktvke Yekce Adaptability of the Project: • Simple • Flexible enough to fit a particular community’s traditions • Minimal implementation costs • Has community support

21. The Shawl Circle – Hoktvke Yekce It’s Simple • The Department understands that the community may not be receptive to our staff coming out and discussing prevention messages. However, the information is important – we are taking leaders in the community and educating them to become community health advocates. • The information is being presented in an easy format to understand and to teach.

22. The Shawl Circle – Hoktvke Yekce It’s flexible • The project is designed to allow for each group to present the prevention information within their own traditions. While the health information is standardized, the way the woman chooses to present it – i.e., as part of a larger gathering (such as a Pow Wow) or as part of specially called meeting is the decision of the woman.

23. The Shawl Circle – Hoktvke Yekce It can be implemented with minimal costs • Currently, the project is funded at $20,000. A majority of the cost went to the development and creation of the shawls. We are paid the travel costs for the initial 10 women, production of the educational materials and implementation of the community assessment.

24. The Shawl Circle – Hoktvke Yekce It has community support • While department staff laid the groundwork for the program by conducting surveys and developing the materials, the community took ownership of the project by promoting it at gatherings, nominating women, conducting surveys where departmental staff could not go and being active in coordination of the conference. The project was reviewed and approved by the American Indian Advisory Council, the Southeastern Intertribal Elders Council and other noted and respected American Indians.

25. First Shawl Circle dance, North Bay Pow Wow (Panama City) November 2009 Featured: Sandy DuBose White Sage Woman, Mara Michniewicz, Karen Simons, Wendy Johns Four Dogs, Elaine McClure Big Bear, Raven Stanley

26. The Shawl Circle – Hoktvke Yekce Sustainability • The department has made a long-term commitment to the project. • We do plan to continue to train women to be Community Health Advocates • The community has indicated they have additional women they wish to be trained as Community Health Advocates.

27. The Shawl Circle – Hoktvke Yekce • Sustainability (continued) • Our initial women can now teach as many Native women as they like. • The Department continues to work with our American Indian communities to identify new methods of supporting the project.

28. The Shawl Circle – Hoktvke Yekce • Sustainability (continued) • The Department will also take a more supportive role as the project goes along so that the communities themselves take the lead. • This means that the main concept of self-efficacy will remain.

29. What does the future hold? • American Indian men have voiced a need for a special men’s project through the department to focus on HIV/AIDS and prostate cancer.

30. On July 9, the Florida Department of Health held a day of tribal dialogue. American Indian leaders were invited to Tallahassee, regardless of federal-recognition status, where they all had an opportunity to speak directly with the Surgeon General and the Deputy Secretary for Health. This event was a direct result of being in the communities through work with the Shawl Circle. During the tribal dialogue, the American Indians expressed anger, frustration and hope for a better working relationship with the Department.

31. Contact Information Karen L. Simons Special Projects Coordinator Bureau of HIV/AIDS, Prevention Section Florida Department of Health (850) 245-4444, ext. 2625 Karen_Simons@doh.state.fl.us Thank you!