AIHREA

The American Indian Health Education is important and we we have established an academic Research & Education Alliance want to increase the number of pipeline to improve the educational (AIHREA) is an alliance of organi- American Indians entering the attainment of all American Indians. zations whose mission is to partner health professions and conducting We have scholarships available and collaborate with American health research. To meet this goal, to help! Indian peoples, Nations, communi- ties, and organizations to improve the physical, mental, emotional, and spiritual wellbeing of American Indians throughout the United States through quality participatory research and education. The two primary organizations involved are the Center for American Indian Community Health (CAICH) at the University of Kansas Medical Center and the Center for American Indian Studies (CAIS) at AIHREA Collaborators: Johnson County Community American Indian Council, Inc. College. We partner and collabo- Cheyenne River Sioux Tribe Title 1 Program rate with numerous other organiza- Chickasaw Nation tions, conducting research with and Children's Mercy Hospital Center for Environmental Health providing services to the American Choctaw Nation of Oklahoma Indian community in the Denver Indian Health and Family Resources Heartland and around the country. First Nations Student Association (University of Kansas) We use community-based partic- Haskell Indian Nations University Iowa Tribe of Kansas and Nebraska ipatory research (CBPR) in all of Kansas City Indian Center our studies. CBPR is a type of Kickapoo Diabetes Coalition research that involves community Kickapoo Head Start members in all parts of the research Kickapoo Tribe in Kansas process. Almost 80% of our team Minnesota Indian Women's Resource Center members are American Indians Oglala Lakota Nation from many different Nations across Omaha Tribe of Nebraska Ponca Tribe of Nebraska the United States. We are among Prairie Band Potawatomi Boys and Girls Club the largest American Indian Prairie Band Potawatomi Early Childhood Education Center research teams in the country. We Prairie Band Potawatomi Nation also have four community advisory Nakota Designs, Inc. boards (CABs) comprised of Sac & Fox Nation of Missouri in Kansas and Nebraska American Indians from the com- Salish Kootenai College munities of Lawrence, the four Seminole Nation of Oklahoma Shoshone and Arapaho Tribes of Wyoming tribes in Kansas, Haskell Indian Show Your Logo Nations University, the Kansas City Southwest Oklahoma Intertribal Health Board Metro, Wichita, and Topeka, who Turtle Mountain Band of Chippewa Indians guide all of our activities. University of Oklahoma Health Sciences Center Winnebago Tribe of Nebraska

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 1 From the Director

As always, we have had an incredibly busy year here at AIHREA! Here are some high- lights of our work in the areas of Research, Education, and Service, along with some information about where we are going in the next year:

RESEARCH This year marked the end of our 5-year grant to bring the All Nations Breath of Life quit smok- ing program to urban American Indian communities. Our early results look very promising, with quit rates over 30% after 6 months. In the scientific literature, quit rates for American Indians at 6 months range from 8-10%. We are very excited to have such a successful program and credit its success to our fantastic group facilitators and the huge amount of input from previous participants that made the program better. We are still run- ning the program in collaboration with several tribes on reservations in multiple states. This year we will be starting development of an Internet-based version of the pro- gram tailored specifically to tribal college students, who have some of the highest smoking rates. We are Kickapoo Nation Treasurer Bobbi Darnell introduces her sister, Kristy, our proud to be working with Salish breast cancer survivor speaker at our first annual Steps to Saving Lives Breast Kootenai College in Montana to Cancer Awareness Walk. develop this program. Our Native American Weight Loss Movement is a weight loss group we run is a little different test the program. program designed specifically for based on input from previous We are currently running the American Indians. We have spent groups. Thanks to the hard work largest study of ethnic identity or the year running groups and getting of our group facilitators and partici- “what it means to be American feedback from people about what pants in the different versions of Indian” ever done. We are inter- we need to do to make the program the program we now have a pro- viewing nearly 650 people from the best it can be. We have run six gram that is ready for testing to around the country to show the groups in four locations and are determine if it works. We will be diversity of what it means to be currently running two more. Each submitting a large grant shortly to American Indian. This is a very

2 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE exciting study that we hope to fin- already gearing up for this year’s ish in the next year. internship and have an excellent pool of applicants from whom to EDUCATION choose! AIHREA is proud to be able to provide educational scholarships to SERVICE students in the University of Kansas The AIHREA team at the Center Medical Center’s Master of Public for American Indian Studies at Health (MPH) program. We cur- Johnson County Community rently have six students who are College led development of a one- receiving full scholarships to the hour video highlighting the life of program, three Center for one of the few remaining Navajo American Indian Community Code Talkers from World War II, Health (CAICH) Scholars (Charley Mr. Samuel Sandoval. Mr. Lewis, Julia Soap, and Chandler Sandoval worked closely with the Williams), who all focus their stud- team, who traveled to Navajo ies on reducing health disparities Nation to interview him, and the among American Indians, and three result was a video of which he was Susan G. Komen for the Cure very proud. Read on in this report Scholars (Ruth Buffalo, Joseph to learn more about it. Pacheco, and Tara Hammer), who Our GreeNation team has been focus on reducing breast cancer dis- extremely busy this year, focusing Kickapoo Tribal Chairman Steve parities among American Indians. on providing Healthy Home assess- Cadue (right) and others watch as Our Komen Scholars organized the ments to any American Indian fam- Kristy Darnell delivers an inspiring first annual Steps to Saving Lives ily (home owner or not) who wants speech. Breast Cancer Awareness Walk, them. These assessments can tell held in October 2012, on the you if there are any dangers in your Haskell Indian Nations University home. The team comes out and of our future directions. campus. It was a highly successful does the assessment within a few Throughout this annual report, you event, with an inspiring speech hours and, after doing some analy- will learn more about what we do from breast cancer survivor Kristy sis on the data, will provide a full and how we try to help American Darnell of the Kickapoo Tribe in report. The team is made up nearly Indian communities. We hope that Kansas and over 150 participants. entirely of students in our MPH you will come out to some of our Several of our MPH students will be program who are learning about events to learn more about us and graduating this year and we have an environmental health and hoping maybe participate in some of what additional CAICH Scholar starting to be able to make a difference for we do! this fall! Look to our newsletters American Indian families by help- this year to learn more about our ing them to live in safer environ- Scholars. ments. Our summer internship was Our free health screening clinic in its third year in 2012 and had another successful year, provid- included 13 students. Based at ing service at events in urban and CAICH, students are exposed to reservation locations. You can read our research and service activities at more about what they do later in various AIHREA partners. You can this annual report. read all about their successes later These are just a few highlights in this annual report. We are about our work in 2012 and some

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 3 RESEARCH RESULTS

Tribal College Tobacco and Behavior Survey TCTABS, the Tribal College Tobacco and Behavior Survey, is a web-based, 5-year survey that looks at why some tribal college students smoke and why others do not. TCTABS also examines things that are related to smoking, such as social support, diet and exercise, drinking, etc. The information gathered from TCTABS will be used to create future programs to help tribal college students quit smoking. We are currently working with two tribal colleges and are hop- ing to add another college in 2013. We completed our second year of TCTABS in October 2012 and present some of our initial findings here. A total of 607 students have participated in TCTABS so far. The majority of TCTABS participants were female (64.7%) and most of our participants are in a 4-year bachelor degree program (70.8%). About 66% of TCTABS partici- pants attend college in a different state than where they went to high school. A small percentage (27.4%), work while attending college. One of the questions on ABOVE: Students take the TCTABS survey. BELOW. TCTABS Project TCTABS asks, “Not including cere- Manager Christina Pacheco, Esq. and CAICH Scholar and GreeNation monial or sacred smoking, have you Project Manager Joseph Pacheco advertise TCTABS and GreeNation at ever smoked a cigarette, even one a college event. or two puffs?”, and the vast majority (76.1%) answered, “Yes” to this question. When asked if they had the time that they took the survey. TCTABS includes questions ever used smokeless tobacco, such This is more than double that of about a range of behaviors that are as chewing tobacco, snuff or snus, the general U.S. college student related to smoking. Students were 30.2% answered, “Yes”. The aver- population, whose smoking rate is asked how many servings of fruits age age of our participants when around 20%. The average number and vegetables they consumed in a they smoked their first cigarette was of cigarettes smoked by TCTABS day. About 68% of students said about 14 years old. Slightly more participants who were current that they consume 1-2 servings of than 40% were current smokers at smokers was 2.5 cigarettes per day. fruit a day and almost 64% of

4 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE students said they consumed 1-2 servings of vegetables a day. Close to 35% of TCTABS participants meet the recommended guidelines of 2.5 hours or more of moderate exercise a week. We asked students how they felt about their body or size, about 40% responded that they were satisfied with their body image most of the time or always. Ninety two point five percent (92.5%) of students responded that alcohol use was a minor problem or greater, on their college campus. With the information gathered from this survey, we are creating a web-based, individually tailored quit smoking program for tribal college students.

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 5 RESEARCH RESULTS (continued)

All Nations Breath of Life (ANBL): An American Indian Smoking Cessation Program

All Nations Breath of Life (ANBL) is a culturally-tailored smoking cessation program for the American Indian community. It is different from other smoking cessa- tion programs because it was created with input, at all stages, from the American Indian community and unlike many other quit smoking programs, ANBL respects traditional use of tobacco while working to help American Indians quit using tobacco for recreational purposes.

What Makes ANBL Different: • All participants are American Indian. • All group facilitators are Traditional tobacco grew naturally in the US long before commercial American Indian. tobacco existed. • Groups consisted of 15 people or less. participate in the 12-week groups • All educational materials for the that provided support and encour- program were designed specifical- agement. Over 40% of the people ly for American Indian people. who started the program had quit • There is a focus on traditional use smoking by the end of 12 weeks. of tobacco, and respect for its More than 30% of all participants cultural and ceremonial use. were still quit when we followed up • Telephone sessions discuss indi- with them at 6 months. Other vidual’s concerns and issues relat- quit-smoking programs only have ed to quitting and staying quit. about 8-10% of American Indians • Quit smoking medication (gum, staying quit at 6 months. This sug- patch, lozenge, Zyban® or gests that ANBL works and shows restaurants, workplace break rooms Chantix®) is available to partici- that culture must be considered and, when needed, people’s homes. pants free of charge if they would when creating health programs for The flexibility of the ANBL facili- like it. specific groups. tators to meet the needs of the par- • Family members or friends are ANBL was offered at several dif- ticipants resulted in high retention encouraged to participate in some ferent locations, including the rates. Over 85% of participants group sessions. Kansas City Metro Area; Denver, stayed in the program through 6 CO; Detroit, MI; Wichita, KS; weeks into the program and over We recently completed a 5-year Dallas, TX; Lawrence, KS; and sev- 75% completed the program. We study of ANBL in urban areas to eral small cities in Mid-Missouri. are very appreciative of our facilita- determine how effective the pro- ANBL groups met in American tors and of the hearts and spirits of gram is. Over 300 people chose to Indian centers and churches, local the people who participated.

6 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE Body Image among and ideal body shape using a series question asked, “Which of these American Indians of images. Each image is given a body types do you consider to be The term, “body image” is used number from 1 – 9 with 1 being the the ideal body type?” Most partici- to refer to a person’s feelings about smallest and 9 being the largest. The pants selected images 2 – 4 to rep- how attractive his or her body is. difference between these two values resent the “ideal” female or male Body image can be a product of is the measure of body satisfaction. body. personal experiences and social and We conducted a one-year survey We also found that fast food con- cultural forces. The perception of with American Indians across the sumption and smoking status one’s body image can have a wide Heartland. A portion of that survey effected American Indian women’s range of effects, both psychological looked at body image among perception of their own body and physical. For example, a person American Indian adults. We had image. Additionally, for both men with a negative body image may try 299 men and 457 women respond and women, trying to lose weight to alter his or her body in some to the body image questions. affected their perceptions of their way, such as dieting, steroid use, For the most part, when asked, own body image. Many American undergoing cosmetic surgery, etc. “Which of these body types do you Indian men and women considered Additionally, negative body images consider to be your body type?”, their bodies to be in accordance can also lead to depression or eating both American Indian women and with their vision of the “ideal” disorders. men tended to self-identify with body type. Body image is often measured by images 2 – 5 on the scale. There asking people to rate their current was not a major change when the

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 7 RESEARCH RESULTS (continued)

Diabetes: A Devastating Disease for American Indians We surveyed 756 self-identified American Indians/Alaska Natives at community events, health fairs, and pow wows in the Midwest region about diabetes. The survey results show that 16.4% of respondents had been told they have Type II diabetes and19.8% pre-diabetes, a condition characterized by having blood sugar levels that are higher than normal, but not high enough to be diagnosed as Type II diabetes. This is important because with proper diet and exercise, pre-dia- betes is reversible. Of our survey participants who had been told that they had Type II diabetes, 25% took insulin and 65% took blood sugar lowering pills to control their diabetes. 14% had not tested their HbA1c in Additionally, 36% report taking the past 12 months. Approximately their blood sugar measurements at half of participants reported that least once per day, and 27% report they had HbA1c testing done 1-4 that they take their blood sugar times in the past year. measurements more than once per day. An HbA1c score of 7% or less Standards of care recommend can prevent or delay complications daily self-monitoring of blood sugar of Type II diabetes, such as foot and doing the Hemoglobin A1c sores, vision problems (diabetic (HbA1c) test at each diabetes med- retinopathy), and numbness or tin- diabetes (16.1% from the Centers ical appointment, which should gling in the hands and feet (diabetic for Disease Control in 2011), but occur every 3 months. HbA1c test- neuropathy). Twenty percent (20%) our respondents were behind on ing measures a person’s average daily of participants reported that they self-management practices (such as blood sugar levels over the past 2-3 had sores on their feet that took daily blood sugar monitoring and months. Good blood sugar control more than 3 weeks to heal, and foot checks) and HbA1c testing. occurs when a person has an HbA1c 29% have been told that their dia- We hope to develop programs that below 7%. The survey results indi- betes has affected their eyes. About will help people better manage their cate that not all people who half of the people with diabetes diabetes. responded that they have Type II reported having an eye exam that diabetes are getting their HbA1c included dilating their pupils in the tested 4 times per year as recom- past year, and more than half mended. Five percent (5%) of dia- reported doing a daily foot exam. betic respondents reported not The rate of diabetes among our being familiar with or never hearing survey participates aligns with of HbA1c testing; 15% did not national data on American know if they had been tested; and Indians/Alaska Natives with Type II

8 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE SERVICE RESULTS

Health Screening Clinic measure of how “fit” you are. based on your family and personal We performed over 1,900 health However, it does not take into medical history. assessments in 2012. These assess- account how muscular you are. ments are specifically selected to For example, a trained athlete can Lung health: Lung health is address the health needs of the have an “unhealthy” BMI because assessed by a spirometer (spahy- American Indian community. Here he or she is “heavy” due to a lot of rom-i-ter). Spirometry measures are just a few of the screenings we muscle mass. A body composition airflow. By measuring how much provide: test requires a special scale or hand- air you exhale, and how quickly held device that will estimate your you exhale it, spirometry can evalu- Diabetes screening: We screen actual Lean Body Mass (percent ate a broad range of lung diseases, for early signs of blood sugar prob- muscle) using a tiny electrical cur- such as asthma, bronchitis, and lems, or for those with diabetes or rent that you will not feel. Because emphysema. It can also tell you pre-diabetes. We do the 3-month it estimates your fitness level more how old your lungs are based on blood sugar test called Hemoglobin accurately than the BMI, it is more function! A1C. This test is a more accurate useful in guiding diet and exercise measure of how high your blood activities. We provide both BMI Early childhood screening: We sugar is day-to-day, including at and Lean Body Mass. provide Early Head Start screening night when people do not normally and immunizations for children. test it. We also offer foot checks Heart health: Heart disease is and test the nerves for signs of the leading cause of death in the Ask-A-Doc: All our screening damage to prevent foot ulcers that US, including for American events have at least one physician can lead to surgery. Indians. People with diabetes are at available to review screening results an even higher risk of heart disease. and discuss any health-related Fitness assessment: Body mass We measure blood pressure and questions. index or BMI is calculated from blood cholesterol, and screen for your height and weight and is a your individual risk of heart disease

AIHREA summer interns help out at screening clinic events.

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 9 SERVICE RESULTS (continued)

GreeNation: Helping You Keep asthma, can be inflamed by an home occupants. These assessments Your Home Safe unhealthy home. Healthcare offer personalized education to the GreeNation is an environmental providers are great at treating home occupants on the condition program that helps educate these issues but should be able to of their home. Reports are given to American Indians about the impact properly educate their patients on the home occupants to teach them that their indoor environment can how to ensure they have a healthy ways they can improve the overall have on their health. GreeNation home. GreeNation has trained 30 health of their home and to has been able to provide the healthcare providers. encourage good habits. American Indian community with We are available to provide more Healthy Homes training and home Home assessments are another education and home assessments. assessments. service that GreeNation provides. If you would like to learn more, We provide three types of We offer two types of home assess- please visit our website at: Healthy Homes training: commu- ments, based on the health of the www.caich.org/greenation. nity, facility, and healthcare provider.

• Community Trainings - cover steps to keep a healthy home. Many of us do not realize how much time we spend inside our homes. This can lead to health problems if our home is unhealthy. Simple things like blocked air flow can cause our homes to make us ill. Other problems within homes, such as mold and pollen, can be more complicated. GreeNation has trained 190 American Indian community members about how to make their homes healthier.

• Facility Trainings - cover how to keep a healthy indoor working environment. A major part of this training teaches how commonly used chemicals can harm those who use them and others who are exposed to them. GreeNation has trained 24 facility workers.

• Health Care Provider Trainings - educate providers about indoor environmental triggers (usually from patient homes) that may TOP: AIHREA team member Lance Cully learns about how to do home result in patients getting sick. assessments from Chandler Williams. BOTTOM: Charley Lewis tests out Upper respiratory issues, like equipment while getting ready to do a home assessment.

10 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE ONGOING RESEARCH PROJECTS

Native 24/7: Understanding Ultimately, if possible, we would health disparities. The information What it Means to Be “Native” like to create a scale that will be gained from this can inform our Native 24/7 is a research project used in multiple studies to identify efforts and help us to better tailor our that looks at culture and ethnic which communities are dispropor- interventions for each community. identity of American tionately affected by particular Indians/Alaska Natives. The hope is that from working directly with community members and using their words, stories and experi- ences, a meaningful view of identi- ty will emerge. Participation involves a phone interview that lasts approximately 15-20 minutes and a brief on-line demographic survey. Participants are asked ques- tions about whom or what has influenced their identity and what being American Indian/Alaska Native means to them. We have interviewed over 250 community members and are hop- ing to reach 400 more. In March, several team members attended the Native 24/7 team members will be talking to American Indians in each of the Denver March Pow wow in areas on this map. Each area is called a “culture area” and helps us to ensure Denver, Colorado, where they con- that we get a diversity of opinions on our questions. ducted over 100 interviews! We are actively seeking opportunities to attend and recruit at other cultural events throughout the nation. We also have an active website (www.native247.org), where you can find out more information and sign up to be part of this study. We have a dedicated phone line for Native 24/7 (1-855-55CAICH or 1-855-552-2424, extension 247). With your help, we hope to have all interviews completed in the next year. We hope to use this knowledge to inform others about the differ- ences among American Indians in different regions of the country and the variations even within those regions based on things like age, gender, and whether you grew up in an urban or reservation area.

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 11 ONGOING RESEARCH PROJECTS (continued)

Native Touch to Screen age of 60, no history of certain We are currently recruiting at the The Native Touch to Screen proj- kinds of polyps, etc. Kansas City Indian Center in ect aims to improve colon cancer As part of the study, eligible indi- Kansas City, MO, on culture nights screening rates among American viduals are given information about on the first Wednesday of every Indians. Colon cancer is a leading colon cancer screening and their month from 6:00pm until 9:00pm. cause of death among American screening options. Half of the par- We are also recruiting through the Indians, but if it is found early, it is ticipants will make a step-by-step Kickapoo Tribe in Kansas and the 90% curable. American Indians plan to get screened for colon cancer Iowa Tribe of Kansas and Nebraska receive the fewest number of colon and half will be given additional and will be working at local pow cancer screening tests of any ethnic information about healthy living, wows and health fairs. We are dis- group and suffer from higher death nutrition, and exercise. All partici- cussing the potential to bring the rates. pants will be offered the screening project to several other locations We are recruiting self-identified test of their choice free of charge. and are actively looking for addi- American Indian men and women Participants will also receive a $20 tional recruitment locations. who are between the ages of 50 and gift card for completing the com- If you have any questions, please 75 who are not currently up-to-date puter information session. do not hesitate to contact Angela on their colon cancer screening. Approximately 90 days after Watson, the study’s project manager, This means they have not had a participants complete the computer at 913-945-6675 or by email at colonoscopy in the last 10 years or training they will be contacted by a [email protected]. She would like a fecal occult blood test in the last member of the study team and to thank the Tribal Councils who year. Individuals must meet other asked to complete a 15-20 minute have agreed to participate in this inclusion criteria as well, including telephone survey. They will receive study for their assistance and no use of blood thinners, no family another $20 gift card via mail for patience. history of colon cancer before the completing the survey.

12 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE Introducing Our 2012 Youth Ambassadors

Youth Ambassadors are young people who help promote our health and educational programs throughout the country, giving presentations and representing AIHREA’s mission and values. Youth Ambassadors receive a yearly stipend. The 2012 Youth Ambassadors are:

Byllye Clendon Holly Dunn (White Mountain Apache) (Muscogee Creek Nation of – Haskell Indian Nations Oklahoma) University – University of Oklahoma

Curt Pahmahmie Jason Hale (Citizen Band Potawatomi) (Prairie Band Potawatomi) – Haskell Indian Nations – University of Kansas University

Tanner Mihesuah (Comanche Nation) – Baker University

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 13 2012 Building Healthy Communities Grantees

Building Healthy Communities is a grant opportunity We define health broadly and funded projects in provided by AIHREA for American Indian tribes, four areas of health in 2012: organizations, schools, and other community organiza- • Physical Health tions. These $5,000 grants are possible because of a • Mental or Emotional Health Center of Excellence grant from the National Institute • Cultural or Spiritual Health on Minority Health and Health Disparities. The • Community Health Building Health Communities grants are given out We encourage applications from urban and reservation through a competitive process on an annual basis. areas and from organizations serving both individual AIHREA strives to fund organizations around the and multi-tribal communities. We are proud to country who want to improve the health of American announce our 2012 grantees: Indian communities.

Kiikapoa Youth Trail (Kickapoo Boys and Girls Club-Kickapoo Tribe in Kansas): This project constructs a walking trail called the " Kiikapoa Youth Trail". The trail will be approximately 1/2 mile, will start from the back of the Kickapoo Boys and Girls Club, and will end at the Kickapoo Pow-wow Park. The trail will be used for spiritual and cultural wellbeing.

American Indian Chamber of Commerce of Kansas (Native American Veterans Community Health Outreach Pow wow): The American Indian Chamber of Commerce of Kansas grant helps fund their second annual Veterans Community Health Outreach Pow wow. The central goal for this community event is to provide outreach and education to the Native American veteran community within Kansas and its surrounding areas.

Central Oklahoma American Indian Health Council, Inc. dba Oklahoma City Indian Clinic (Cooking Fresh): For the past 10 years, the OKCIC has sponsored a nationally recognized health promotion and disease prevention program aimed at American Indian children in central Oklahoma (TURTLE Camp), as well as various fitness and nutrition- centered family activities throughout the year. Through this grant, the OKCIC builds on these programs through a series of cooking demonstra- tions and classes. The goals of the program are to introduce fresh foods as part of a healthy diet and teach children (and their parents) how to have fun cooking and eating these foods.

Native American Community Health Center (The Weaving Project): This is a breast health awareness and education program that targets American Indian women, 13 years of age and older that reside in North- Central Phoenix. It uses an intervention model designed for American Indian audiences that was developed by the Seattle Indian Health Board, Urban Indian Health Institute. The Weaving Project educates participants about breast, cervical and colorectal health, self-examinations, importance of mammograms, and resources for needed services.

14 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE Four Winds Native Center (Native Youth Mentoring and After School Program): The Four Winds Native Center is developing a Native youth mentoring and after school tutoring program for youth ages 11-18 in Lawrence, KS. The youth mentoring program connects Native youth with volunteer mentors in the Native community. With the support of positive role models, Native youth are empowered to make healthy choices and grow into strong, capable adults.

American Indian Child Resource Center (Native Trails to healthy Living: Promoting Health and Culture through Traditional Food of California Indians): This project consists of four days of programming that includes local Native guest speakers, educational field trips, and food collecting and preparation activities for participating youth. The program focuses on the traditional foods of California American Indians. The main objective is to give students the skills and knowledge they need and pro- mote their cultural and physical health while reducing their chances of becoming obese and/or their susceptibility to related chronic conditions and diseases.

Native Pride Arts (Native Pride presents… Wee Chaa!): This project creates an exercise DVD entitled, Wee Chaa!, that incorporates Native American style dancing with Native dancers, traditional Native songs, and modern beats created by (a) Native artist(s). This is an unheard of concept that is greatly needed to reach Native communities in order to provide a tool to assist in preventing the Native health disparities that are running rampant in Native populations.

South Brown County, USD #430 (Youth Understanding Diabetes): This project provides a program in our schools that educates Native stu- dents on issues related to diabetes. USD #430 works closely with the Kickapoo Tribe of Northeast Kansas. The basic objective of this project is to provide instruction in a grade based education setting that covers the health problems related to diabetes. This project will be molded into the curriculum for all grades K-12.

Haskell Upward Bound (Building Native Wellness Today for Tomorrow): Haskell Upward Bound is committed to preparing students for successful entry into and the completion of college. “Building Native Wellness Today for Tomorrow” is a successful summer program not only for current Haskell Upward Bound students and their families, but also for future youth. Students are provided with key tools to understand the benefits of a healthy lifestyle and bringing awareness to health problems within the Native community.

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 15 OUR ADVISORY BOARDS

Executive Community Advisory Board Our Executive Community Advisory Board (ECAB) is comprised of 10 community leaders representing Lawrence, the Kansas City Metro Area, Wichita, Haskell Indian Nations University, Prairie Band Potawatomi Nation, Kickapoo Nation of Kansas, Sac-n-Fox Nation of the Missouri, and the Ioway Tribe of Kansas and Nebraska. The ECAB provides guidance to the Center for American Indian Community Health (CAICH) and meets monthly with our research team to guide CAICH’s overall activities. Our current ECAB members are:

Rita Bahr (Sac and Fox) Neil Lawhead (Ottawa tribe of Oklahoma) Charlene Flood-Johnson (Kickapoo) Matthew Rutledge (Rosebud Sioux Tribe) Bobbi Darnell (Kickapoo) Patricia Negonsott (Kickapoo) Lester Randall (Kickapoo) Ponka-We Victors Joshua Mihesuah (Comanche) (Tohono O'odham, Ponca Tribe of Oklahoma) Virginia LeClere (Potawatomi)

Community Advisory Board Our Community Advisory Board (CAB) meets quarterly to discuss research and is made up of 24 community members. The members are representatives from the Kansas City Metro Area, Lawrence, Northeast Kansas, and Wichita. At each meeting we discuss upcoming projects and give updates on existing initiatives. CAB members ask questions and give advice on the projects such as recruitment ideas. We have 45-minute breakout sessions during which CAB members provide feedback on topics of their choice. Our current CAB members are:

Patty Battese (Turtle Mountain Chippewa) Robert Marley (Cherokee) Nancy Blue Chris Molle (Cherokee) Gaylene Crouser (Standing Rock Sioux) Julie Moore (Seminole) Gail DuPuis-Cheatham (Kickapoo & Prairie Band Arlene Negonsott (Kickapoo) Potawatomi) Rose Pacheco (Cherokee) Deloris Fisher (Northern Cheyenne) Laurie Ramirez (Turtle Mountain Chippewa) Daniel Fisher (Northern Cheyenne) Marlene Stuart (Confederated Tribes of Siletz Indians) Dana Gaydusek (Choctaw) Thomas Stuart (Confederated Tribes of Siletz Indians) Nori Gaydusek (Choctaw) Juan Victors (Tohono O’odham) Cheyanne Ingram (Rosebud Sioux) Sandra Victors (Ponca) Christina Jim (Kickapoo) Candace Wishkeno (Kickapoo) Denise Lawrence (Kiowa & Comanche) Arlene Wahwausuk (Prairie Band Potawatomi) Shawna Longhorn (Northern Arapaho & Absentee Shawnee)

16 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE “I thoroughly enjoy your meetings and feel “As a CAB member, it means I can bring your group truly listens to ideas and are awareness of my community health care sincerely interested in Native American needs to the academic setting. I can also health issues.” — Patty Battese bring awareness of barriers that make health care unavailable to community “I like being on the [CAB] to keep up members, such as driving distance, lack about Indian health issues and research.” of transportation, addictive behaviors — Robert Marley like overeating, cigarette smoking, etc.” — Arlene Wahwasuck

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 17 2012 Summer Internship

For the past three years, AIHREA has offered its Summer Internship Program to high school and college stu- dents. This internship is a paid, eight-week opportunity that offers students a chance to gain public health and research experience. It is led by the Center for American Indian Community Health (CAICH). We had a total of 13 interns last summer:

Veronica Bruesch (Wichita), Haskell Indian Nations University

Melvin Calls Him (Ponca Nation of Oklahoma), Haskell Indian Nations University

Tashunka Cook (Minnecounju Lakota), Penn Foster High School

Aaron Edenshaw (Haida/Northern Arapaho), University of Kansas

Brady Fairbanks (Crow), Haskell Indian Nations University

Matthew Frank (Diné), University of Missouri Kansas City

Bobbi Frederick (Crow/Creek/Sioux), Haskell Indian Nations University

Jordyn Gunville (Cheyenne River Sioux), University of Kansas

Tanner Mihesuah (Comanche/Choctaw/Chicasaw), Baldwin High School

Bo Schneider (Assinaboine), Haskell Indian Nations University AIHREA interns partici- pate in the First Annual Tomoe Urano, AIHREA Olympics, Shawnee Mission South a day of good-hearted competition in events like Raymond Whiteshield kayaking, trivia, and (Kiowa/Cheyenne), Haskell Indian photography Nations University

Keenan World Turner (Yankton Sioux), Haskell Indian Nations University

18 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE During the summer intership Role Models – Our new website Health Literacy - We are working program, each intern is paired with will include a series of pages devoted on a health literacy project examin- a mentor who offers guidance and to people who are good role models ing Medicaid forms from all 50 assistance through the internship for youth. Interns who chose this states. We examined the forms for program. During the 8 weeks, option identified role models and readability in an effort to show how interns worked on two different obtained pictures and biographies difficult it can be to fill out these projects, each for three weeks, and from them. You can vote for role forms in order to access Medicaid were exposed to many other projects. models to appear on our website at benefits. Interns who chose this 2012 projects included All Nations our annual pow wow! project learned about different liter- Breath of Life, GreeNation, Native acy assessment tools and conducted 24/7, and the Native American GIS (Geographical Information assessments of some states’ forms Weight Loss Movement (all discussed Systems) Mapping - We are con- using a method we have developed. elsewhere in this report), as well as ducting a GIS study in Lawrence, the following: KS, focusing on food outlets, places where people buy cigarettes and/or Community Service – Our 2012 alcohol, places where people exer- interns working on community cise, bus routes, and more. We will service chose to create a health fair compare the resources surrounding for Haskell Indian Nations University Haskell Indian Nations University students. It was held when students and the University of Kansas. went back to school in August. It Interns who chose this option spent was a very successful event that will time in Lawrence assessing loca- hopefully become annual! tions around the city.

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 19 Heart of a Warrior: The Story of Navajo Code Talker Samuel F. Sandoval

Heart of a Warrior is a one-hour documentary about the life of Diné Code Talker Samuel F. Sandoval. Sandoval was part of the second group of Diné men recruited by the United States Marine Corps during WWII to develop a code using the Diné bizaad, or Navajo language. Sandoval served at Guadalcanal, Bougainville, Guam, Okinawa, and Pelelui. More than 300 Diné were recruited for this purpose. After the war, they were sworn to secrecy should the United States need their services again. In 1969, the code work on the project. They arrived was declassified. Many Code with decades of family photos, Talkers had taken their secret into home movies, and documents that the afterlife; their families did not were archived at JCCC. Sam and know what they had accomplished Malula spent an entire week in the until much later. The Code Talkers recording studio sharing stories and were later credited with winning memories of his childhood, time as the war and awarded Congressional a Code Talker, and his life after the Medals of Honor nearly 50 years Marines. In June, the JCCC staff after the war. went to New Mexico for 10 days to AIHREA team members participate film Samuel at his home in in the filming of Heart of a Warrior. This project came about after Shiprock, NM. He took the crew Samuel Sandoval, one of the few Samuel was invited to speak at to Window Rock, AZ, capital of remaining Navajo Code Talkers. Johnson County Community the Navajo Nation and to Nageezi College (JCCC) by the Veterans (Nah-yee-zee), the area in the Affairs Office during its Veterans checkerboard region of the reserva- after the two-year anniversary of Day activities in November of tion where he was raised. the start of the project for the pre- 2010. During his visit, Samuel met miere of Heart of a Warrior. the faculty and staff of the Center The following year the JCCC for American Indian Studies team worked on writing a script, This project was fueled by the (CAIS). That evening at dinner, he editing, and recreating key dream of a Navajo Code Talker. It expressed a desire to work on a moments in Samuel’s life for the was not initiated by JCCC, CAIS, video documentary with Paul Kyle, documentary. Staff members from CAICH or AIHREA; this was an Dean of Student Services. Kyle the Center for American Indian opportunity for us to use our skills approached Dr. Sean Daley, Community Health (CAICH) as a research team to make that Director of CAIS, about working helped with translation, narration, dream happen. In the end, it was on the project and plans to move and reenactment of some of the the tears in Sam’s eyes after the forward quickly began. The follow- scenes. On November 14, 2012, screening on November 14, 2012, ing spring, Sam and his wife Sam’s dream came alive. Sam and that let us know we had helped Malula returned to JCCC to begin Malula returned to JCCC just days Sam realize his dream.

20 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE CRF Powwow & AIHREA Powwow Winners

2012 COMMUNITY Women’s Jingle Women’s Buckskin Jr. Girls Fancy/Jingle RESEARCH FORUM 1st Sharon Eagleman 1st Jamie Jon Whiteshirt 1st Brennah Wahweotten POWWOW WINNERS 2nd Ryanne White 2nd Alva Fiddler 2nd Rose Goodeagle 3rd Yvette Goodeagle 3rd Denise Haury 3rd Lenore Pushetonequa Cloth/Buckskin 4th Alaina Barnes Jamie Jon Whiteshirt Men’s Traditional Women’s Fancy Shawl Juwiki 1st BJ Haury 1st Bobbi Lyn Frederick Jr Boys Grass/Fancy Amy Big Eagle 2nd Tony Wahweatten 2nd Jocy Bird 1st Sonny Demarce 3rd Darrell Frank 3rd Taylor McCauley 2nd Jamisen Wolfleader Grass/Fancy 3rd Haga Pelky Freddy Gipp Men’s Grass Men’s Straight 4th Chaske Frank Alex Pelkey 1st Freddy Gipp 1st Eagleboy Whiteshield CC Whitewolf 2nd DJ Whitehouse 2nd Thomas Goodeagle Jr. Boys 3rd Marshall (MJ) 3rd Dave Madden Traditional/Straight Junior Girls DeMarce 1st Donovan Haury Alaina Barnes Men’s Chicken 2nd Brycen Whiteshirt Kellie Pulliam Men’s Fancy 1st Isaiah Stewart 3rd Brendan (Pnut) 1st White Coyote 2nd Luke Swimmer Young Fancy Shawl/Jingle HolyBull 3rd Seavert Sheridan 4th Brady Johnson Brittany Pelkey 2nd Graham Primeaux Sharon Eagleman 3rd Alden Spoonhunter Jr Girl’s Cloth/Buckskin Drum Contest Shaundeen Smith 1st Latesha Robertson 1st Meskwaki Nation Men’s Golden Age 2nd Haley Madden 2nd Omaha Traditional/Straight 1st Royce Kingbird 3rd Alden Spoonhunter Standing Eagle BJ Moses 2nd Wayne Pushetonequa 3rd Kingbird Singers Trilby Wahwasuck 3rd Bobby Wildcat Ira Toshavik

Junior Boys Brycen Whiteshirt Canyon Toshovik Jerome Barnes

2012 AIHREA POWWOW WINNERS

Women's Golden Age 1st Annamae Pushetonequa 2nd Karen Wahwasuck 3rd Mary Antelope

Women’s Cloth 1st Randi Bird 2nd Charlsie Rose Cunningham 3rd Kelly Walker

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 21 2012 CRF & AIHREA Powwows

When conducting community- based participatory research, shar- ing the results with both the scien- tific community AND the commu- nity with whom you are working is mandatory. The use of scientific posters and journal articles for shar- ing research results is not commu- nity friendly. AIHREA has devel- oped a method of sharing results that brings more community mem- bers to the table and provides a voice for them in future research, a Community Research Forum (CRF).

CRFs consist of two basic features, sharing results through not-so-aca- demic posters and presentations and breakout sessions where com- munity members can provide input on current and future projects. Our first CRFs followed this basic format, but attendance lagged. We have now developed them further to bring more community members to them. We hold CRFs in con- have found that community mem- junction with pow wows, dissemi- bers learn far more about us when nating information with posters we use this format than when we and announcements from the use standard methods like academic emcee. In addition, throughout the journal articles. day, we have team members give 5 minute updates from the emcee Our CRF in August 2012 was table. We also have “passports” that held with a pow wow and a healthy attendees bring to poster presenters food contest. We had over 200 to sign as they learn about posters. American Indian community mem- Once someone has a certain num- bers attend our event. We had sev- ber of signatures, he or she earns a eral entries for our healthy food TOP: 2012 Community Research t-shirt. Each signature also comes contest; our youngest contestant Forum was held in combination with with a raffle ticket. Throughout the was only five years old! a competition pow wow. day, mini discussion groups about different topics are on-going and Our healthy food contest winners BOTTOM: AIHREA team member community members can stop by were Kevin Pacheco (Quechua from Baljit Kaur explains some of our any discussion and provide input. Bolivia and Cherokee) with Peanut research results to community In return, participants receive either Soup and Freddy Pacheco members. raffle tickets or a small incentive (Quechua from Bolivia and (first aid kit, umbrella, etc.). We Cherokee) with Pumpkin Soup.

22 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE TOP LEFT: Our screening clinic was very successful at this year’s pow wow, providing well over 1000 free health screenings.

TOP RIGHT: Winners of our First Annual Healthy Food Competition (left to right): Freddy Pacheco (win- ner, Best Use of Traditional Foods), Shelby and Sarah Bointy (runners- up), and Rose Pacheco (mother of overall winner Kevin Pacheco)

BOTTOM RIGHT: Community Research Forum competition pow wow.

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 23 WHERE DOES THE MONEY GO?

We are often asked where all of Johnson County Community AIHREA. The other 20% of them the grant money we get goes and College, 15% goes to the Kansas are used for things like phone bills, we do not want to hide this infor- City Indian Center, and 50% goes Internet connections, photocopy mation. There are several cate- to the University of Oklahoma machine rental, etc., by AIHREA. gories of funding, as follows: Health Sciences Center. The two These overhead costs that go direct- • Personnel Salaries – faculty and graphs on this page represent the ly to institutions are typical of most staff (including fringe and benefits) percent of our total $2,519,945 grants, including all grants funded • Consultant Costs – Honorariums that goes to each category. The by the National Institutes of and travel expenses for first graph shows how our total dol- Health, our primary funder. The Community Advisory Board lars are spent, which includes 25% second graph shows our budget members and scientific consultants overhead. This 25% goes directly after the overhead and how we • Subcontracts – money that goes to KUMC for overhead costs; 80% spend the money. outside of KUMC of these dollars are never seen by • Travel – conferences (registration fees & travel expenses), commu- nity events, health screening events (rental vehicles, mileage) • Supplies – research project sup- plies or health screening items, projectors, postage, computers, AV equipment • Scholarships – books, tuition, educational training, software • Community Grants – Building Healthy Communities, It Pays to Be Healthy (grants provided to AI student organizations) • Community Events – Powwows, booth rental, youth events, com- munity give-a-ways • Other – building rentals for events, postage, website fees, etc. • Participant Incentives – gift cards, research participant payments • Research Materials – quit smok- ing medicine, health screening equipment • Overhead Costs – administration cost, lights, phone, copier, etc. The majority of our grant dollars go to KUMC through their Research Institute, who manages the money. 16% of our money is subcontracted to other organizations. Of that money, 10% goes to the Children’s Mercy Hospital Health Sciences Center, 25% goes to

24 Annual Report - AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE Academic Presentations and Publications

Presentations at Academic Conferences Kaur B, Daley C, Choi W. All Nations Daley CM, Filippi M, James AS, et al. Buffalo R, Pacheco J, Hammer T, Filippi Breath of Life--A Randomized Clinical American Indian community leader and M, Daley C. Development of Culturally- Trial. National Conference on Tobacco or provider views of needs and barriers to Tailored Breast Cancer Brochures for Health (NCTOH); August 15-17, 2012; mammography. J Community Health. Apr American Indian Communities in Kansas Kansas City Convention Center, Kansas 2012;37:307-315. and Missouri. 5th American Association of City, Missouri. Cancer Research Conference on the Science Filippi MK, Braiuca S, Cully L, et al. of Cancer Health Disparities in Filippi M, Cully A, Cully L, et al. CBPR American Indian Perceptions of Colorectal Racial/Ethnic Minorities and the Medically Recruitment among American Indians: Cancer Screening: Viewpoints from Adults Underserved; October 27-30, 2012; San Lessons Learned. Community Networks Under Age 50. J Cancer Educ. Oct 20 2012. Diego, California. Program Centers (CNPC) Program Meeting; July 30-31, 2012; Bethesda, Filippi MK, McCloskey C, Williams C, Daley C, Cully A, Cully L, Smith T, Maryland. et al. Perceptions, Barriers, and Suggestions Choi W. Training American Indian for Creation of a Tobacco and Health Community Members to be Active Filippi M, Hammer T, Buffalo R, et al. Website Among American Indian/Alaska Participants in the Research Process. 2012 Breast and Colorectal Cancer Brochure Native College Students. J Community Summit on the Science of Eliminating Development Using CBPR. 8th Biennial Health. Nov 13 2012. Health Disparities: Building a Healthier Conference - Culture, Cancer, and Literacy: Society. Integrating Science, Policy, and Advancing Communications; May 17-20, Filippi MK, Young KL, Nazir N, et al. Practice; December 17-19, 2012; Gaylord 2012; Clearwater, Florida. American Indian/Alaska Native willingness National Resort and Convention Center, to provide biological samples for research National Harbor, Maryland. McCloskey C, Daley S, Talawyma M, et purposes. J Community Health. Jun al. Challenges and Successes of a Multi- 2012;37:701-705. Daley C, Daley S, Cully A, et al. Tribal American Indian CBPR Research Community Research Forums: Team. Community Networks Program Greiner KA, Geana MV, Epp A, et al. A Disseminating Research Results in a Centers (CNPC) Program Meeting; July computerized intervention to promote col- Community-Friendly Atmosphere. 2012 30-31, 2012; Bethesda, Maryland. orectal cancer screening for underserved Summit on the Science of Eliminating populations: theoretical background and Health Disparities: Building a Healthier Pacheco C, Faseru B, Daley C, et al. algorithm development. Technol Health Society--Integrating Science, Policy and Tobacco Use among American Care. 2012;20:25-35. Practice; December 17-19, 2012; Gaylord Indian/Alaska Native Tribal College National Resort and Convention Center, Students. National Conference on Tobacco Geana MV, Greiner KA, Cully A, National Harbor, Maryland. or Health; August 15-17, 2012; Kansas Talawyma M, Daley CM. Improving City Convention Center, Kansas City, Health Promotion to American Indians in Daley C, McCloskey C, Daley S, Smith Missouri. the Midwest United States: Preferred T, Choi W. Overcoming Recruitment Sources of Health Information and Its Use Challenges for Smoking Cessation Pacheco C, Nazir N, Brown T, et al. for the Medical Encounter. J Community Programs for American Indians. National Baseline Smoking Characteristics from the Health. Apr 5 2012. Conference on Tobacco or Health Tribal College Tobacco and Behavior (NCTOH); August 15-17, 2012; Kansas Survey. American Public Health Association Geana MV, Daley CM, Nazir N, et al. City Convention Center, Kansas City, 140th Annual Meeting & Expo; October Use of Online Health Information Missouri. 27-31, 2012; San Francisco, California. Resources by American Indians and Alaska Natives. J Health Commun. May 29 2012. Daley S, Smith T, McCloskey C, Choi Pacheco J, Hammer T, Buffalo R, W, Daley C. Traditional and Recreational Pacheco C, Filippi M, Daley C. Spreading Filippi M, James A, Brokenleg S, et al. Tobacco Use Among American Indians. the Knowledge: Strengthening Survival Views, Barriers, and Suggestions for National Conference on Tobacco or Health Rates for American Indian Women with Colorectal Cancer Screening among (NCTOH); August 15-17, 2012; Kansas Breast Cancer through Culturally Tailored American Indian Elder Women Over Age City Convention Center, Kansas City, Brochures. American Public Health 50 in the Midwest. Journal of Primary Care Missouri. Association 140th Annual Meeting & and Community Health. 2012. Expo; October 27-31, 2012; San Francisco, Kaur B, Choi W, Daley C. Research California. Daley C, James A, Filippi M, et al. Partnerships with American Indians using American Indian Community Leader and Community-based Participatory Research. Academic Publications Provider Views of Needs and Barriers to National Conference on Tobacco or Health; Berg CJ, Daley CM, Nazir N, et al. Colorectal Cancer Screening. Journal of August 15-17, 2012; Kansas City Physical activity and fruit and vegetable Health Disparities Research and Practice. Convention Center, Kansas City, Missouri. intake among American Indians. J 2012;5. Community Health. Feb 2012;37:65-71.

AMERICAN INDIAN HEALTH RESEARCH & EDUCATION ALLIANCE - Annual Report 25 CONTACT INFO:

Center for American Indian Center for American Indian Community Health Studies University of Kansas Johnson County Medical Center Community College Toll free 1-855-552-2424 913-469-8500 or 913-588-0866 Ex. 4570 americ americ or an or an f art of i f on co i e h n ns u n r h e r h n e e a d e o t d t l t y h i j i i a a n t n n

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www.AIHREA.org