Citation
Native patient navigators

Material Information

Title:
Native patient navigators lived experiences along the cancer continuum - identity, community of practice, border crossing and bridge making
Creator:
Santos, Cornelia ( author )
Place of Publication:
Denver, CO
Publisher:
University of Colorado Denver
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Language:
English
Physical Description:
1 electronic file (431 pages). : ;

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Subjects / Keywords:
Patient representatives ( lcsh )
Cancer -- Patients -- Counseling of ( lcsh )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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Review:
Cancer has emerged as a leading cause of premature death for American Indian/Alaska Native (AI/AN) populations. While numerous factors contribute to higher rates of some cancers and cancer deaths among AI/AN populations, access to culturally respectful and responsive cancer education, screening, and treatment plays a significant role. Native Patient Navigators offer an innovative, culturally sensitive and community acceptable intervention to increase the access to cancer screening and treatment for AI/AN , and to lower their disproportionate mortality rate. The term Native Patient Navigator is used to describe a Native American who helps an individual in a Native American community in navigating the complex system of health care along the cancer continuum i.e., the stages of cancer prevention, detection, diagnosis, treatment, and survivorship. Studies are limited on Native Patient Navigator. This study was conducted to examine the lived experiences of Native Patient Navigator with health and cancer and their AI/AN clients. Twenty-six navigators from urban, rural, clinical and non-clinical settings across the United States, representing fifteen tribes, were interviewed. Data consisted of transcribed interviews, field notes, and documents. These were analyzed using a phenomenological lens combined with modified constant comparative method and Nvivo. The findings suggest: 1) Native Patient Navigator use their unique identity to access and communicate to Native clients the potential benefits of Western medicine, cancer diagnosis and treatment options. Their unique identity consists of three parts - Native, Community Servant and Professional: 2) Navigators develop their professional community of practice regarding health and cancer screening based on their understandings of tribal and Western medical ways of knowing and being: 3) Navigators are critical interpreters and translators who decipher and integrate two distinct outlooks and ways of viewing the world in their health education and support work. It is through these two lenses using both Native and Western medicine perspectives, that Navigators use their role as bordercrossers to inform individual and collective choices of those they guide to greater access to health care; finally 4) Native Patient Navigator act as permanent bridgemakers forming a conduit between Western medicine and Native traditional medici
Thesis:
Thesis (Ph.D.)--University of Colorado Denver. Educational leadership and innovation
Bibliography:
Includes bibliographic references.
System Details:
System requirements: Adobe Reader.
General Note:
School of Education and Human Development
Statement of Responsibility:
by Cornelia Santos.

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Source Institution:
|University of Colorado Denver
Holding Location:
|Auraria Library
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All applicable rights reserved by the source institution and holding location.
Resource Identifier:
913786720 ( OCLC )
ocn913786720

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NATIVE PATIENT NAVIG ATORS : LIVED EXPERIENCES ALONG THE CANCER CONTIN UUM IDENTITY COMMU N ITY OF PRACTICE BORDER CROSS ING AND BRIDGE MAK ING b y CORNELIA SANTOS B.S., Biology and Chemistry, Metro politan State University 1995 M.S.E.S. Health Option Un iversity of Colorado 2004 A t hesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Doctor of Philosophy Educational Leadership and Innovation 2015

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2015 CORNELIA SANTOS ALL RIGHTS RESERVED

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iii T his thesis for the Doctor of Philosophy degree by Cornelia Santos has been approved for the Educational Leadership and Innovation Program b y Honorine Nocon Advisor Alan Davis Chair Diane Estrada Donna Langston Martinez Linda B urhansstipanov Febuary 6, 2015

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iv S antos Cornelia (Ph D Educational Leadership a n d Innovation ) Native Patient Navigators : Lived Experiences along the Cancer Conti n uum Identity Community of Practice Border C rossing and Bridge Making Thesis directed by Honorine Nocon Associate Professor ABSTRACT Cancer has emerged as a leading cause of premature death for American Indian/Alaska Native (AI/AN) populations. While numerous factors contribute to higher rates of some c ancers and cancer deaths among AI/AN populations, access to culturally respectful and responsive cancer education, screening, and treatment plays a significant role. Native Patient Navigators offer an innovative, culturally sensitive and community accepta ble intervention to increase the access to cancer screening and treatment for AI/AN populations, and to lower their disproportionate mortality rate. The term Native Patient Navigator is used to describe a Native American who helps an individual in a Nativ e American community in navigating the complex system of healthcare along the cancer continuum i.e., the stages of cancer prevention, detection, diagnosis, treatment, and survivorship. Studies are limited on Native Patient Navigators. This study was conduc ted to examine the lived experiences of Native Patient Navigators with health and cancer and their AI/AN clients. Twenty six navigators from urban, rural, clinical and non clinical settings across the United States, representing fifteen tribes, were inter viewed. Data consisted of transcribed interviews, field notes, and documents. These were analyzed using a phenomenological lens combined with modified constant comparative method and Nvivo. The findings suggest: 1) Native Patient Navigators use their uni que identity to access and communicate to Native clients the potential benefits of Western medicine, cancer diagnosis and treatment options. Their unique identity consists of three parts ---

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v Native, C ommunity Servant and Professional; 2) Navigators develop their professional community of p ractice regarding health and cancer screening based on their understandings of tribal and Western medical ways of knowing and being; 3) Navigators are critical interpreters and translators who decipher and integrate two dis tinct outlooks and ways of viewing the world in their health education and support work. It is through these two lenses using both Native and Western medicine perspectives, that Navigators use their role as bordercrossers to inform individual and collecti ve choices of those they guide to greater access to health care; finally, 4) Native Patient Navigators act as permanent bridgemakers forming a conduit between Western medicine and Native traditional medicine as options for Natives diagnosed with cancer. The form and content of this abstract are approved I re commend its publication Approved: Honorine Nocon

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vi DEDICATION They must aim at the heavens and set themselves standards and goals that in the beginning will seem beyond reach. But they should enjoy t he challenges this brings, and they should not look for perfection. One day they might get close to it. If, on the other hand, they aim low, that is where they will always be. Even failures make a positive contribution. They keep us humble, and they help u s find and fix our mistakes. Failures remind us to practice more until we are better. Things are never automatic in our relationship with Wakan Tank a. He wants us to learn for our selves what we are made of so that we can experience things fully. Quitting i the work aside for awhile if you must, but then come back to it. It is practice that gives us confidence and gets us ready to meet the big tests when they come. We must love everyone, put others first, be moral, k eep our lives in order, not do anything criminal, and have a good character. Doing these things, we will become a hollow bone for the powers, the Higher Powers to work through. Become the one who me. People can do anything they want to do badly enough. After all, Wankan Tanka (God) Tunkashila (He who walked among us, the Son or another way of saying God) and the Helpers (four direction, powers, and mother earth) are the Chiefs of the ages. They hav e always been, and always will be. We come, we go, but the sacred hoop was turning before us, and if we do what Wakan Tanka wishes us to do, it will keep on turning after we are gone. If we want to live a long time, we must give our self to Wakan Tanka and live a spiritual life. We will have peace that frees us from fear. You will know that Wankan Tanka and the Helpers surround you and that nothing can hurt you that you recover from. So there is no fear. You will remain calm and unhurried. Spiritual p eople do not suffer from anxiety as other people do, they do not worry as much about chiefs or pleasing others just to get ahead in life. Instead, the things they do are personally rewarding. They feel good about themselves as they ought to. emember that Wankan Tanka does not ask us to do these things alone? He walks with us along the pathways of life, and He can do for us what we could never do on our own. Thomas E. Mails, from Lakota Holy Man, Fools Crow: Wisdom and Power (1975) Hecel Lena Oyate Ki. Nipi Kte So that the People May Live For my son Popay, it is for him and the future generations of children that I persisted. For my Chiefs Popay, Geronimo and Manuelito For all Ame rican India n and Alaska Native D octoral Students who struggle to find their voices in academia a ll my relations for dreaming my future into reality and putting me on the red road for the beautiful life I have today

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vii ACKNOWLEDGMENTS A Special Thank You T o: M y famil y, my M other Cuca ather Edward, for believing in me and sacrificing s o much for the beauty that surrounds me M y B rothers Edward, Juan, Geron imo and their families, Kyle and Aunt Gidget My dear Nieces and Nephews My Aunt Carol Iron Rope Herr era, Tilo and Family for supporting me always started me on this journey to help find an intervention for cancer in Native people M y committee members, Drs. Honorine Nocon, Alan D avis, Diane Estrada, Donna Langston Martinez and Linda Burhansstipanov for helping to mentor me along the way M y Native Patient Navigator Study P articipants My Co Researchers, without whom there would be no story M y NACR family, Native Cancer Survivor Gr oup and our AI/AN Cancer A llies M y Sundance family at Wanblee, Mr. Richard Movescamp, Mr. Leonard Crowdog, Ms. Troy Lynn Yellow Wood Dr. Susan Yellow Horse Davis and family Mr. Atekpatzin Young Dr. Paul Encinias, Dr. Glenn Morris, Dr. Linda Lucero, Dr. Deborah Hunt Dr. Elyce Yamaguchi Ms. Donna Wetherbe e Ms. Carolyn Elliot Dr. Marge Mistry, Dr. Manuel Espi noza, Drs. Rod and Marcia Muth Dr. Elizabeth Mendoza Ms.Dora Esquibel and family Teocalli Tepeyolohtlan Native American Church Dr. Vivian Delga do and Family Mr. Vine Deloria Jr. and Chief Wilma ManKiller for your belief in my vision

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viii TABLE OF CONTENTS CHAPTER I. INTRODUCTION ................................ ................................ ................................ ........................ 1 Background of Study ................................ ................................ ................................ .................... 2 Social Determinants of Health and AI/AN ................................ ................................ ................... 3 Health Disparities Inequiti es in AI/AN Populations ................................ ................................ .... 4 Cancer in AI/AN Communities ................................ ................................ ................................ .... 7 Statistical Terms ................................ ................................ ................................ ........................... 9 Navigating Cancer: Native Patient Navigators ................................ ................................ ........... 12 The Native Patient Navigators: A Unique Approach to Cancer in Indian Country .................... 14 Research Questions ................................ ................................ ................................ .................... 15 Description of Study ................................ ................................ ................................ .................. 16 Purpose of the Study ................................ ................................ ................................ .................. 16 Areas of Study ................................ ................................ ................................ ............................ 16 Statement of the Problem ................................ ................................ ................................ ........... 17 Definition of Terms ................................ ................................ ................................ .................... 21 Study Hypothesis ................................ ................................ ................................ ....................... 24 Methods ................................ ................................ ................................ ................................ ...... 24 The Phenomenology Approach and Advantages ................................ ................................ ....... 24 Conceptual Framework ................................ ................................ ................................ .............. 26 Native Ways of Knowing/Native Epistemology/ Amerindian Circles of Learning .................... 26 Sociocultural Theory ................................ ................................ ................................ .................. 29 Critical Race Theory ................................ ................................ ................................ .................. 30 Communities of Practice ................................ ................................ ................................ ............ 31 Border Crossing ................................ ................................ ................................ ......................... 32 Findings from the Study ................................ ................................ ................................ ............. 32 Conclusions ................................ ................................ ................................ ................................ 33 Implications ................................ ................................ ................................ ................................ 34 Researcher Role and Assumptions ................................ ................................ ............................. 34 Study Limitations ................................ ................................ ................................ ....................... 37 Relevance of the Study ................................ ................................ ................................ ............... 37 Organization of the Dissertation ................................ ................................ ................................ 38 Summary ................................ ................................ ................................ ................................ .... 39 II. REVIEW OF THE LITERA TURE ................................ ................................ ............................ 40 Problem and Purpose of the Study ................................ ................................ ............................. 40 Patient Navigation: History ................................ ................................ ................................ ........ 41 Nature of work. ................................ ................................ ................................ ...................... 45

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ix Types of navigators/titles. ................................ ................................ ................................ ...... 47 Navigator prof essional roles. ................................ ................................ ................................ 49 Navigators practice. ................................ ................................ ................................ ............... 53 Cancer Continuum ................................ ................................ ................................ ..................... 55 N ative Patient Navigation: History ................................ ................................ ............................ 55 Native patient navigator professional roles. ................................ ................................ ........... 62 Native patient navigator practice. ................................ ................................ .......................... 66 AI/AN Identity and Culture Influences ................................ ................................ ...................... 70 Diversity within. ................................ ................................ ................................ .................... 74 Rural. ................................ ................................ ................................ ................................ ..... 75 Urban. ................................ ................................ ................................ ................................ .... 76 Reservation. ................................ ................................ ................................ ........................... 79 Racism and Relations to Euro Wester ners ................................ ................................ ................. 80 Racial misclassification. ................................ ................................ ................................ ........ 81 Racism: regional differences. ................................ ................................ ................................ 86 Racism: urban differences. ................................ ................................ ................................ .... 87 AI/AN Culture ................................ ................................ ................................ ............................ 88 Native Ways of Knowing and Being ................................ ................................ .......................... 90 Oral tradition and communication. ................................ ................................ ........................ 96 Spirituality. ................................ ................................ ................................ ............................ 98 Sacredness of place ................................ ................................ ................................ ................ 98 Spirituality and its connection to health ................................ ................................ ................ 99 Native self determination ................................ ................................ ................................ .... 100 Kinship. ................................ ................................ ................................ ............................... 102 Health Topics: Overall AI/AN Health ................................ ................................ ...................... 103 Factors affecting AI/AN health. ................................ ................................ .......................... 103 AI/AN health disparities. ................................ ................................ ................................ ..... 107 Barriers to care. ................................ ................................ ................................ .................... 110 Cultural competency. ................................ ................................ ................................ ........... 111 Historical trauma and its effects on AI/AN health. ................................ .............................. 113 AI/AN Cancer ................................ ................................ ................................ .......................... 115 Cancer initiatives for AI/AN ................................ ................................ ............................... 120 Cultural factors and AI/AN cancer. ................................ ................................ ..................... 122 Positive role for culture in cancer studies. ................................ ................................ ........... 126 Native cultural commitment. ................................ ................................ ............................... 128 Being present: accountability and presence in the community. ................................ ........... 129 Communi cation ................................ ................................ ................................ ................... 129

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x Traditional Native Healing ................................ ................................ ................................ ....... 131 Bringing back the harmony. ................................ ................................ ................................ 133 Verbing. ................................ ................................ ................................ ............................... 135 Hzh balance. ................................ ................................ ................................ .................... 135 Western Medicine ................................ ................................ ................................ .................... 136 Co nflicts with Native worldview and practices. ................................ ................................ .. 136 Socialization of medicine. ................................ ................................ ................................ ... 138 Scientism. ................................ ................................ ................................ ............................ 140 Indian Health Service ................................ ................................ ................................ ............... 141 Contract Health Service ................................ ................................ ................................ ........... 146 Indian Self Determination and Education Ass istance Act of 1975 (Public Law 93 638) ........ 148 Study Approach: Phenomenological Approach ................................ ................................ ....... 148 Theoretical Framework ................................ ................................ ................................ ............ 150 Amerindian circles of learning. ................................ ................................ ........................... 150 Sociocultural theory. ................................ ................................ ................................ ............ 150 Critical theor y. ................................ ................................ ................................ ..................... 152 Community of practice. ................................ ................................ ................................ ....... 158 Border Crossing ................................ ................................ ................................ ....................... 162 Border cro ssing education. ................................ ................................ ................................ .. 162 Border crossing translation. ................................ ................................ ................................ 164 Border crossing mediation. ................................ ................................ ................................ .. 165 Border crossing advocacy. ................................ ................................ ................................ .. 165 Cultural border crossing ................................ ................................ ................................ ...... 165 Ethical Considerations for Working with AI/AN Co mmunities ................................ .............. 167 Conclusion ................................ ................................ ................................ ............................... 168 III. METHODOLOGY ................................ ................................ ................................ ................... 170 Patient Navigation and Native Patient Navigators ................................ ................................ ... 171 Purpose of the Study ................................ ................................ ................................ ................ 172 Focus of Inquiry: Research Questions ................................ ................................ ...................... 174 Approach: Qualitative Methodology and Phenomenology ................................ ...................... 175 Research Paradigm ................................ ................................ ................................ ................... 175 Qualitative Re search ................................ ................................ ................................ ................ 175 Phenomenology Approach ................................ ................................ ................................ ....... 177 Context ................................ ................................ ................................ ................................ ..... 179 Setting. ................................ ................................ ................................ ................................ 179 Sample population. ................................ ................................ ................................ .............. 180

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xi Research Design ................................ ................................ ................................ ....................... 182 Data Collection Proced ures ................................ ................................ ................................ ...... 183 Recruitment approach. ................................ ................................ ................................ ......... 183 Supplemental Background Materials ................................ ................................ ....................... 186 Ethnographic Interviewing ................................ ................................ ................................ ....... 187 On going ethnographic investigation. ................................ ................................ .................. 190 Member checking. ................................ ................................ ................................ ............... 190 Cultural appropriateness. ................................ ................................ ................................ ..... 191 Data Analysis ................................ ................................ ................................ ........................... 199 Steps in data analysis. ................................ ................................ ................................ .......... 199 Trustworthiness ................................ ................................ ................................ ................... 203 Limitations to the Study ................................ ................................ ................................ ........... 207 Summary ................................ ................................ ................................ ................................ .. 208 IV. PRESENTATION OF FIND INGS ................................ ................................ ........................... 209 Review of the Problem ................................ ................................ ................................ ............. 212 Review of Research Question s ................................ ................................ ................................ 213 Review of the Conceptual Framework ................................ ................................ ..................... 213 Critical Theory/Critical Race and Tribal Critical Race Theories ................................ ............. 214 Amerindian Circles of Learning ................................ ................................ ............................... 215 Sociocultural Theory ................................ ................................ ................................ ................ 215 Border Crossing ................................ ................................ ................................ ....................... 216 Review of Approach ................................ ................................ ................................ ................ 217 Description of Coding Hierarchy: Emergent and Apriori Codes ................................ ............. 217 Native Patient Navigator Identity ................................ ................................ ............................. 219 Identity Native. ................................ ................................ ................................ .................... 220 Identity community servant. ................................ ................................ ................................ 223 Identity professional. ................................ ................................ ................................ ........... 232 Native Patient Navigators Community of Practice ................................ ................................ ... 239 Nature of work: a blend of both community and professional aspects. ............................... 241 Joint enterprise: a shared domain of interest. ................................ ................................ ....... 242 Mut ual engagement. ................................ ................................ ................................ ............ 244 mutual engagement. ................................ ................................ ................................ ............. 248 Joint interpretation of roles border crossing as a group ................................ ....................... 258 Shared repertoire communal resources. ................................ ................................ .............. 259 Being present. ................................ ................................ ................................ ...................... 262 Blend of Western and Native rules and content. ................................ ................................ .. 267

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xii Navigators as Border Crossers: Travelers between Western and Native Worldviews ............. 270 Native ways of knowing and being. ................................ ................................ ..................... 274 Native worldview. ................................ ................................ ................................ ............... 275 S pirituality. ................................ ................................ ................................ .......................... 280 Ways of talking ................................ ................................ ................................ ................... 282 Self determination. ................................ ................................ ................................ .............. 287 Ki nship: a relational way of being. ................................ ................................ ...................... 288 Navigation as a Native way of helping ................................ ................................ ................ 290 Western Medicine ................................ ................................ ................................ .................... 291 Racism. ................................ ................................ ................................ ................................ 292 Mistrust. ................................ ................................ ................................ ............................... 295 Scientism. ................................ ................................ ................................ ............................ 296 Setting and crossing boundaries. ................................ ................................ .............................. 297 Challenges ................................ ................................ ................................ ................................ 300 Making Bridges between Western and Native Traditional Medicine : ................................ ..... 302 Summary and Chapter Conclusion ................................ ................................ ........................... 307 ................................ ...... 308 V. IMPLICATIONS AND CON CLUSION ................................ ................................ .................. 313 Conclusions and Discussion of Findings ................................ ................................ .................. 316 Facets of identity. ................................ ................................ ................................ ................ 316 317 Navigation: a pragm atic approach of helping AI/AN within the experience of colonization. ................................ ................................ ................................ ................................ ............. 322 .................. 324 Individual self determination of the cancer journey within the collective. .......................... 326 Implications of the Findings ................................ ................................ ................................ ..... 327 For cancer education. ................................ ................................ ................................ ........... 327 For AI/AN people. ................................ ................................ ................................ ............... 328 For western medicine. ................................ ................................ ................................ .......... 328 For navigators in general. ................................ ................................ ................................ .... 329 For the study participants and Native Patient Navigators. ................................ ................... 329 For resear chers and further research. ................................ ................................ ................... 330 Reflecting on Research in Native Communities ................................ ................................ ...... 332 Guiding Process and Cultural Assistance ................................ ................................ ................. 334 Limitations of the Study ................................ ................................ ................................ ........... 339 Conclusion ................................ ................................ ................................ ............................... 340 REFERENCES ................................ ................................ ................................ ................................ 343

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xiii APPENDIX ................................ ................................ ................................ ................................ ....... 389 COMRIB APPROVAL ................................ ................................ ................................ .................... 415

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xiv LIST OF TABLES TABLE 1.1: COMMON CANCERS AI/AN ................................ ................................ ................................ ............ 8 1.2: STATIST I CAL TERMS USED WITH REGARDS TO AI/AN CAN CER STA TISTICS ................. 9 2.1: DIFFERENT NAVIGATOR S TITLES ................................ ................................ ............................. 48 2.2: ROLES AND RESPO NSIBILITIES OF CANCE R PATIENT NAVIGATOR S ............................. 50 2.3: NAVIGATION IN SERVICE TRAINING TOP IC S ................................ ................................ ........ 64 2.4: OVERVIEW OF REQ UIRED QUALIFICATIONS OF NAVIGATOR S ................................ ........ 65 2.5: NNACC NAVIGATIO N ACTIVITES/TASKS ................................ ................................ ................ 68 2.6: URBAN HEALTH CO NCERNS AI/AN ................................ ................................ .......................... 78 2.7: CULTURAL DIFFER ENCES ................................ ................................ ................................ ......... 125 2.8: EXAMPLES OF WAY S TO IMPROVE COMMUNICA TION WITH NATIVE AME RICAN CANCER PATIENT S ................................ ................................ ................................ ............................. 130 2.9: COMPARISON OF W ESTERN MEDICINE AND NATIVE AMERICAN MEDI C IN E ............. 137 3.1: MIR A RATIO FOR UNDERSTANDING SURVIV AL ................................ ................................ 174 3.2 INCLUSION AND EXCLUSION CRITERIA ................................ ................................ ............... 181 4.1: NATIVE PATIENT NAVIG ATORS DEMOGRAPHIC TABLE ................................ .................. 209 A : ABBREVIATION TABLE ................................ ................................ ................................ ................ 389 B : EXAMPLES OF ADVANT AGES AND DISADVANTAG ES OF WHERE NAVIGATOR S WORK ................................ ................................ ................................ ................................ ................................ 390 F : NATIVE PATIENT NAVIG ATORS IDENTITY ................................ ................................ ............. 394 G : PATIENT NAVIGATOR S COMMUNITY OF PRACTIC E ................................ ........................... 395 H : NAVIGATOR S AS BORDER CROSSERS ................................ ................................ ...................... 396 I : NAVIGATOR S BRIDGE MAKING ................................ ................................ ................................ .. 398 L : COMPARISON OF TRAD ITIONAL INDIAN ME DICINE AND MODERN WE STERN MEDICINE ................................ ................................ ................................ ................................ ............. 400 M : SAMPLE QUESTIONS F ROM THE AMERICAN SPI RITUAL HISTORY TO ID ENTIFY AMERICAN INDIANS OR ALASKA NATIVES USING TRADITIONAL INDIAN M EDICINE .... 403

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xv LIST OF FIGURES FIGURE 1.1: MEDICINE WHEEL ................................ ................................ ................................ ............................. 93 C. EXAMPLES OF QUESTION S PREPARED BY NATIVE SISTER AND FAMILY TO ASK THE DOCTOR) ................................ ................................ ................................ ................................ ................... 391 D. STATES AND CONTRA CT HEALTH SERVICE DE LIVERY AREA COUNTIES .......................... 392 E. STUDY INTERVIEW GUID E ................................ ................................ ................................ ............... 393 J. RECRUITMENT FLYER ................................ ................................ ................................ ....................... 399 K. TASKS OF CANCER PATI ENT NAVIGATORS OVER THE CANCER CARE CONT INUUM ..... 400 N. CIRCULAR PAIN MODEL ................................ ................................ ................................ .................. 405 P. DEATH RATES, RANK S, AND RATE RATIOS ................................ ................................ ................. 413 Q. CONCEPTUAL FRAMEW ORK ................................ ................................ ................................ ........... 414

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1 CHAPTER I INTRODUCTION hold no anger hold no hatred think not of yourself nor your own generation Think of the generations yet to come those who are yet to be born whose faces are comin g from beneath the ground Chief Seneca e coming generations of Native Nations This hope is demonstrated amidst great losses for Native Nations Thus the task at hand according to this vision is to commit to the next generations This is the vision for the health and the future survival of Native Nations Cancer once thought to be less of a problem with American Indian and Alaska Native (AI/AN) populations is now emerging as a leading major cause of premature death among AI/AN populations (US Department of Health and Human Services 2011) Research has supported that AI/AN populations have high incidence rates of certain cancers (breast cervix colon lung for Alaska Northern and Southern Plain s regions) and poor survival rates for most cancers (Espey et al 2014 a ; Mayo Clinic Cancer Center, 2014 ) AIs continue to experience the lowest five year relative survival when compared to all other minority and ethnic groups in the US ( N ation al Cancer Inst itute, NCI, 2011 12) a s well as experience an increasing AI/AN cancer burden in their communities ( Burhansstipanov, Dignan Jones, Krebs, Marchionda, & Kaur 2012; Espey, Wu, Swan et al., 2007). Provider and p atient barriers as well as increasingly complex health systems contribute to significant and costly delays in cancer care These delays can come in the form of a decreased quality of care with associated poorer outcomes for p atient s In turn these factors substantially affect the most vuln erable populations such as those who

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2 come from a lower economic status those who have found themselves underinsured or are from racial/ethnic populations (Freund Battaglia Calhoun Dudley et al 2008) Community acceptable and culturally tailored in terventions are necessary to address the cancer incidence mortality and overall cancer burden tha t the AI/AN population continue to experience Cancer patient navigation programs have been shown to increase utilization of care as well as increase access to cancer care for underserved and poor ind ividuals (Braun et al., 2012). The term Native Patient Navigator ( also Native Navigator community [who] undergo training to deliver comprehensi ve and culturally appropriate h iti, Burhansstipanov & Watanabe Galloway, 2012, p.74) Native Patient Navigators along with their roles and lived experiences offer a valuable communi ty centered and culturally responsive intervention to address the increasing affliction caused by cancer that the AI/AN community continues to experience Background of Study Western m edicine has greatly improved the lives of Americans However not all A mericans such as AI/AN have enjoyed the health benefits and the lessening of the burden of disease due to the advances in modern medicine AI/AN death rates saw a decline over most of the 20th century, but this decline has since changed and death rates have stagnated since the 1980s (Kunitz, Vaezie & Henderson, 2014 ). According to the 2010 Census, t he AI/AN population numbers approximately 5 2 million people or about 1 7 percent of the general US population Out of this total

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3 number, 2.9 million people identified as American Indian or Alaskan Native alone. Almost half of the Ame r ican Indian and Alaska Native population, or 2.03 million people, reported in the census as being American Indian and Alaska Native in combination with one or more other races (US Census, 2010). Urban and rural populations today represent more than 565 federal and over 200 state recognized tribes (BIA, 2014; N ation al Conference of State Legislatures NCSL, 2014) AI/AN communities are spread across America, and are not exclusi vely on reservations, and instead continue to grow across urban landscapes. Even as of 2000, t hese urban Indian communit i es were intertribal and represented half of the Native population of the US (Burhansstipanov, 2000). AI/AN populations have persisten tly endured a legacy of injustice and discrimination with regards to inadequate health care and prominent health disparities (Espey et al., 2014 a ). In spite of the remarkable progress made with regards to modern Western medicine and the overall lessening of mortality, strides with the AI/AN population remain far below that of other US citizens. Social Det erminants of Health and AI/AN The Social Determinants of Health are defined by the World Health Organization (WHO) as t he circumstances in which people ar e born, tend to grow up in live, work and age, including the systems put in place to deal with illness ( Galea, Tracy, Hoggatt, DiMag gio, & Karpati, 2011 ; World Health Organization, WHO Final Report of the Commission on Social Determinants of Health 2008 ) Social determinants have greatly influenced health inequities that continue to exist with AI/AN communities. These determinants of health continue to affect AI/AN populations leading to poor er health

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4 outcomes as defined by the WHO, however, despite the se issues being the most challenging problems to change with regards to a whole population, they also have the greatest pote n tial for impact (Galea et al. 2011 ) Health D isparities I nequ i ties in AI /AN P opulations For several years AI/AN have experience d a lower health status when compared with other US populations. Disparities in mortality and health status have persisted historically among AI/AN for many generations when compared to the ge neral population ( Jones, 2006 ). For example, AI/AN have a life expectancy that is 5.2 years lower than all race populations in t he United States (72.6 years to 77.8 years, respectively; 2003 2005 rates). Additionally, infant mortality is high. AI/AN infants die at a rate of 8.0 per 1,000 live births compared with t he national average for all race populations of 6.8 p er 1,000 according to 2004 2006 rates ( US Departmen t of Health and Human Services, Indian Health Servic e, IHS Fact Sheets, 2012). AI/AN on average have a poverty level that is two times th at of the US p opulation and only half of AI/AN are likely to have health insurance. Education levels are also low in AI/AN populations. Education may determine the type of job and opportunities an individual is able to achieve. AI/AN on average are more likely than Wh ites to have attained a lower level of education ( Cobb Espey & King, 2014; Kunitz, Vaezie & Henderson, 2014). Many AI/AN as well, live away from urban centers in rural areas where employment is often infrequ ent and seasonal (Lincoln & Lucas, 2010) In addition AI/AN are more likely to be found working in job environments with unhealthy and unsafe conditions and without job benefits such as health benefits, retirement and

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5 notification or protections from risks (Colorado Cancer Coalition, Colorado Cancer Plan, 2010 2015). Health risks are also noted for AI/AN in the ir home s ; 1 2% of AI/AN homes lack adequate, safe water supplies and waste disposal facilities compared with 1% for general US population households ( Burhansstipanov, 2012; US Depart ment of He alth and Human Services, Indian Health Service, Strategic Plan 2006 2011 ) Additionally, AI/ AN individuals continue to have difficulty accessing time ly, high q uality health care ( Roubideaux & Dixon, 2001 ; Warne & Frizzell, 2014 ). Many AI/AN live rurally Time to treatment can differ for those rural AI/AN who cannot access prehospital care. Limited prehospital care along with rural living helps prolong the time to treatment thereby increasing death rates from acute illness and accidents ( Williams, Ehrl ich & Prescott, 2001). Inadequate funding of Indian Health Services (IHS), a major provider of AI/AN health services, leads to deficiencies and delays in the areas of preventive services, primary treatment and care by specialists (Warne & Fri z zell, 2014 ) Access to care issues may contribute to the disparities observed between White and AI/AN persons in cancer survival (Singh, Ryerson, Wu & Kaur, 2009). Moreover, AI/AN face delays in gain ing t imely, high quality care because of health literacy barriers which may come in many forms. Barriers could include no information or limited information about available services, problems communicating with health care providers, and not be ing able to access efficiently l ocal health care systems (Krebs et al., 201 3). AI/AN on average, tend to have a lower socioeconomic status and live in poverty when compare d to Non Hispanic Whites (NHWs) T hese economic factors, in turn, are

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6 important indicators of less access to cancer control and prevention services ( Espey, W u, Swan et al., 2007). Lower socioeconomic status is associated with many barriers to health care. A mong these are the personal, structural and financial barriers which include inadequate health insurance and limited prevent ive care and treatment servic es (American Cancer Society Cancer Facts and Figures, 2012) Additionally c hronic insufficient funding for Indian Healt h Service (IHS) the government agency charged with providing health services to federally recognized tribes, leads to numerous delays and deficiencies in primary care, specialist care as well as preventive services (Warne & Frizzell, 2014). According to Epsey et al. (2014) in their analysis using Contract Health Service Delivery Area ( CHSDA ) counties, AI/AN all cause death rates are s ubstantially greater than those for Whites. These differences are most pronounced in the Southern and Northern Plains regions of the US. Additionally, t hese differences were most evident in younger age groups especially ages 25 to 44 years. This discre pancy was very pronounced across all IHS regions, and it was particularly prominent in the Northern Plains and Alaska, where all cause death rates for AI/AN persons in this younger age group were more than three times higher than that for Whites (Espey et al. 2014 a ). For the last two decades, the White population has experienced a significant decline in a ll cause death rates; this decline in rates is not shared with the AI/AN pop ulation (Espey et al., 2014 a ) AI/AN adults tend to suffer from high blood pressure, use commercial tobacco and be more obese than whites (Colorado Cancer Coalition, Colorado Cancer Plan, 2010 2015). AI/AN die at higher rates from diabetes (182% higher), unintentional injuries (138% higher), homicide (83% higher), alcoholism (55 2%

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7 higher) and suicide (74% higher) (IHS Fact Sheet, 2013). Death rates continue to be problematic for AI/AN populations including those from cancer the focus of the next topic. Cancer in AI/ A N C ommunities The lack of decline in all cause death rates for AI/AN compared to the White population mirrors a similar lack of progress toward controlling cancer in AI/AN populations Although cancer incidence and mortality for AI/AN persons compared with Whites varied by both type of cancer and region for the last two decades greater progress in controlling cancer was achieved for White populations compared with AI/AN populations ( White, Espey, Swan, Wiggins, Eheman, & Kaur, 2014) These numbers of cancer deaths are also trending upwards For example, Espey et al (2014) also found, in examining CHSDA counties, that cancer was leading cause of death fol lowed second by heart disease. This cancer pattern was gender specific, however, the leading causes of death of AI/AN men were diseases of the heart a nd cancer, similar to Whites (Espey et al., 2014 a ) (See Appendix P for Comprehensive Cancer Death R ate s, R an ks, and Rate Ratios for AI/AN for all Indian Health Service Regions)

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8 Table 1.1: Common Cancer s AI/AN : Incidence Data for Southern and Northern Plai ns American Indians Comprehensive Cancer Death Rates, Ranks, and Rate R at ios for additional AI/AN by Indian Health Service R egions in Appendix P. US a Southern Plains a Northern Plains a AIAN NHW AIAN NHW AIAN NHW All 368.4 475.9 492.6 b 461.2 538.1 464.8 Breast 85.3 134.4 115.7 129.6 115.9 130.3 Cervi x 9.4 7.4 14.1 9.1 12.5 7.4 Colon 46.3 50.8 60.2 51.8 72.5 52.3 Kidney 17.9 11.8 21.3 12.4 23.7 12.1 Lung 48.5 58.6 87.1 82.2 104.3 65.5 Prostate 105.4 154.4 156.7 146.5 174.5 162.2 Abbreviations: AIAN American Indian/Alaska Native; NHW, Non Hispanic White. A Rates are per 100,000 persons. B Bold indicates increased incidence in American Indians. Note. Wiggins CL, Espey DK, Wingo PA, et al. Cancer among American Indians and Alaska Natives in the US, 19 99 2001. Cancer 2008; 113(suppl 5):1142 1152. Edwards BK, Ward E, Kohler B A, et al. Annual Report to the Nation on the Status of Cancer, 1975 2006, featuring C olorectal Cancer Trends and Impact of Interventions to Reduce Future R ates. Cancer 2010; 116:544 573. Adapted from Krebs, Burhannstipanov & Kaur, 2013, p.120 Cancer has emerged as a leading major cause of premature death among American Indian and Alaska Native (AI/AN) populations (US Department of Health and Human Services Health, United States, 2 011, Special Feature on Socioeconomic Status and Health ; Hyattsville, MD: N ation al Center for Health Statistics 2012). AI/AN cancer incidence rates vary among AI/AN populations and are a lso found to be different from non Hispanic Whites (NHWs) when these populations are compared in the same geographic region (Haverkamp et al., 2008 ; Wiggins et al., 2008 ). Regional differences occur for most cancer sites for AI populations residing in the Northern and Southern Plains ; t hese particular populations suffer the highest incidence and mortality when compared to AIs living elsewhere in the US (Haver kamp et al., 2008; IHS, 2008). When comparing AIs to all other ethnic/minority groups in the US, AIs have the poorest five

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9 year relative survival ( N ation al Cancer Instit ute NCI, Cancer T rends P rogress R eport 2011 2012). Moreover, excluding American Indian (AI) women, short term trends in death rates for all cancers combined decreased for all racial/ethnic groups and both genders between the periods of 199 7 2006 ( Edwards Ward, Kohler, Eheman, Zauber, Anderson, & Ries, 2010). P rogress for cancer in AI/AN populations continues to remain elusive With regard to cancer, it is useful to define commonly used statistical terms used with regard to AI/AN cancer statistics : Stat istical Terms Table 1.2 : Statist i cal terms used w ith regards to AI/AN Cancer Sta tistics Term Definition Incidence Refers to the number of new cases of a disease diagnosed in a specific time period Mortality Refers to the numbe r of people who died from a disease in a specific time period Prevalence Refers to the number o f people living with a disease includes both those newly diagnosed and those diagnosed in previous years All cause M ortality Data calculated from death certificates su bmitted by the state s on all r aces to the N ation al Death I ndex Age adjusted R ates Allow for the comparison of data among regions as though th e age distributions were comp a ra ble (per 100,000 population is used for cancer) Standard Population In order for one to compare rates they must be calculated using the same standard population in the formula to calculate age adjusted rates (e.g., age adjusted rates based on 1970 US population cannot be compared to rates based on 2000 US population or compared to 2000 World population) Note. Adapted f rom: Understanding the True Burden of Cancer in American Indian and Alaska Native Communities (Kaur, Burhansstipanov & Krebs, 2013 in Health Disparities, Jackson & Evans (Eds.), 2013, p.45 ) Age adjusted rate are calculated using a nu mber called the Standard P opulation most recent cancer 2000 US Standard P S P opulation, the rates can be compared to one another. This comparison is not possib Population while Standard Population ( Adapted from Ka ur, Burhansstipanov & Krebs, 2013, p.51)

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10 White et al. (2014 ), provided a comprehensive and updated description of cancer mortality and incidence among AI/AN populations. The authors found c ancer death rates for AI/AN men who reside in CHSDA counties for the years fro m 1999 to 2009 varied signifi cantly by geographical regions Comparing AI/AN male populations in CHSDA counties t h e differences were profound; death rates for all cancer sites combined ranged from a low 163 .8 in the Southwest to a high 338 .1 in the Northern Plains a greater than two fold difference. In comparison, t he contrast between regions for White males did not show this great of a difference, an all site rate of 207.1 in the Southwest, compared to 231.7 in the East region. The autho rs also examined AI/AN women death rates for all cancer sites combined. The overall death ra te for all cancer sites combined for AI/AN women in CHSDA counties also varied greatly, from a high value of 246.9 in the Northern Plains to a low of 125.9 in the Southwest. s total cancer deaths varied more than their white male counterparts but still not as much difference as AI/AN with a 164.4 in the Pacific Coast region to 149.9 in the Southwest (White et al., 2014) When examining the data for specific cancers, i n both the Southern and Northern Plains death rates for AI/AN men were higher compared with White men for cancers of higher rates of cervical, colorecta l, and lung cancers in the Southern and Northern Plains Notably regional variation with Alaska AI/AN people experiencing a n increased three fold greater rate than those in the Southwest.

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11 Death rate s for less common cancers, although much less of the overall cancer picture for AI/AN were found to be also high. G allbladder cancer s w ere higher for AI/AN women in the Southwest This rate wa s greater than eight times the rate for White women. Stomach ca ncer death rates for AI/AN men and women were highest in Alaska, followed by the Northern Plains and the Southwest. Also, d eath rates for kidney and liver cancer among AI/AN men and women were very high and greatly exceeded the rates for Whites by more tha n two times in most regions examined (White et al., 2014). Contrary to these higher death rates, AI/AN persons in the Southwest region had lower death rates than those for Whites for colorectal, lung, brain, esophagus (male), bladder (male), and female b reast cancers, but significantly higher death rates than those for Whites for myeloma and cervical cancers (White et al., 2014) Incidence followed mortality in overall geographic patterns for AI/AN populations for both males and females compared to their W hite counterparts Also according to the White et al. (2014) study, the overall cancer inc idence rates ranged from 316.6 in the Southwest to 655.4 in the Southern Plains for men in CHSDA counties. This is contrasted to White men, whose rates ranged from 491.0 in the Southwest to 580.4 in the East. Similarly in examining incidence f or AI/AN women in CHSDA counties, the incidence rates for all cancer sites com bined were much higher compared those among Whites in Alaska, the Southern Plains and the Norther n Plains and lower in other regions The rates for AI/AN females varied from a low 257.5 in the Southwest to a high of 530.5 in Alaska, whereas the rates for White females ranged from a high of 443.1 in the East regions to 393.2 in the Southwest (White e t al., 2014)

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12 Along with the distinctive geographic patterns highlighted by the White et al. (2014) study, the study also highli ghted significant cancer disparities between AI/A N and their White counte r parts as an outcome of their analysis when cancer mort ality and inci dence were examined in their regional analysis Moreover, the analysis indicated a stark lack of reduction in cancer death ra tes for AI/AN. This is in contrast to the steadily declining cancer death rates experienced by Whites For example, for lung, colorectal cancer, and breast cancers, significant and steady declines in death rates have occurred in White populations over the last two decades whereas for these same corresponding death rates for AI/AN populations the rates have remained u nchan ged or increased AIs continue to have the poorest five year relative survival in comparison to all other ethnic and minority groups (National Cancer Institute 2012). Incidence for o ther less common known cancers are also a problem. For instance, incidence for gallbladder cancer is excessive among those American Indians living in New Mexico. American Indians in this area acquire gallbladder cancer at the highest rate of any group ethnicity (Office of Minority Health, 2010) Finally, White et al (2014) commented on these AI/AN cancer statistics and t he future directions for reversing the trend. The most prominent cancers reflected in the ir study could be addressed and are considered amenable to screeni ng measures and treat ment; such as fema le breast, cervix and prostate and colorectal cancer (CRC) ( White et al., 2014) Navigating Cancer: Native Patient Navigators As a way of addressing the cancer burden for tribal communities and specifically targeting cancer mortality resulting from delays in AI/AN cancer diagnosis and treatment

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13 several unique approaches have been explored Culturally appropriate and individually tailored health promotion efforts are at times more effective than a more generalized approach (Kreuter Oswald Bull & Clark 2 000; Skinner Campbell Rimer Curry & Prochaska 1999) Keeping this in mind one of the most promising approaches currently is in the field of patient navigation Patient n avigation was first conceptualized by Harold Freeman in the 1990s while working with African Americans and breast cancer in Harlem New York (Freeman & Chu 2005) Dr. Freeman observed a disconnect between the progress in the field of cancer and the unequal sharing of the benefit of these advances particularly among those populations who are underserved, uninsured or underinsured (Freeman, 2011). The role of Patient Navigator originated by Freeman was developed to reduce health disparities in access to cancer diagnosis and treatment for populations facing health disparit ies and in particular individuals from poorer and uninsured populations Patient n avigation as originally defined by Harold Freeman is the employment of individuals trained to help others in navigating the healthcare system Patient Navigator s throu gh their work help individuals receive needed healthcare services and education It is a process by which the P atient Navigator provides services to individuals who may be at risk of getting cancer or already are diagnosed with cancer P atient n avigatio n serves as a way to mediate health disparities that arise from a complex interplay of cultural, social and economic factors (Freeman, 2011). A C ancer Patient Navigator is a n individual who helps identify and resolve perceived and real barriers to care, thus enab ling p atient s to adhere more closely to care recommendations and improve their cancer out com es (Freeman, 2006a; Freund, 2011;

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14 Freund, Batta glia, Calhoun, et al., 2008). Patient Navigator s provide a variety of services across the cancer continuum. The cancer continuum includes education and outreach screening, d iagnosis and staging, treatment, survivorship, and end of life ( Braun, Kagawa 2012). tasks have the increasing poten tial to make cancer services more understandable, available accessible, affordable, as well as accountable (Braun, et al., 2012) These services, in turn, help ensu re timely access to cancer scree ning exami n ations as well as help with follow up on susp icious cancer screening findings (Freeman, 2004). Thus, p atient navigation programs are particularly of value to individuals who are underserved and of lower economic status (Braun et al., 2012). The Native Patient Navigators : A Unique Approach to C ance r in Indian Country P atient navigation which centers on access to care issues and overcoming barriers has the increasing potential to prevent or mitigate health inequities while increasing access to quality, timely care thereby improving overall health o utcomes ( Battaglia, Burhansstipanov, Murrell, Dwyer, & Caron 2011). The success of patient navigation with cultural groups however often hinges upon whether the intervention is culturally appropriate (Edwards et al 2010) Culturally relevant and com munity sensitive Patient Navigator s hold potential for use in AI/AN populations in the fight against cancer disparities (Eschiti Burhansstipanov, & Watanabe Galloway 2012) Therefore specially trained Navigator s are a way of addressing the ever increa sing cancer burden for Native populations The term Native Patient Navigator ( Native Navigator ) in this paper refers to [who] undergo

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15 training to deliver comprehensive and culturall y appropriate education regarding the full h iti et al. 2012 p 7 4 ) A Native Patient Navigator then assists an individual in the Native American community in navigating the increasingly complicated healthcare system across the cancer continuum (Eschiti et al 2012) Patient Navigator s, especially those with similar cult ural background or who come from the same community have particular i mportance. These Navigator s have the potential to build trust, decreas e literacy barriers, manage logistical obstacles to cancer care, facilitate patient provider communication, provide psycho emotional support, and reduce overall anxiety and fear ( Braun et al., 2012; Natalie Pereira, Enard, & Nevarez 201 1; Wilcox & Bruce, 2010). However there exists a lack of research that captures the lived experiences of these Native Patient Navigators their roles within the cancer continuum and what navigation may look like for these individuals This study explores the distinctive ro les of Native Patient Navigators their work and their lived experiences along the cancer continuum Research Questions The primary research questions guiding this study are: How does this sa mple of Native Patient Navigators experience a nd understand he alth and cancer ? How does this sa mple of Native Patient Navigators see issues of stigma and historical mistrust around these issues? Related questions are: How do Native Patient Navigators experience their roles within their communities and the larger s ociety? What are their beliefs regarding cancer

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16 health and cancer screening? What are their beliefs around stigma and historical mistrust around these issues? How do these beliefs affect their work? Description of Study The design of this research study w as developed to examine the lived experiences of Native Patient Navigators as well as to give voice to Native Patient Navigators their work and their understandings of health and cancer along the cancer continuum The cancer continuum has been described as the medical and non medical trajectory used to capture the experience of cancer which includes the stages of cancer prevention detection diagnosis treatment and survivorship ( N ation al Cancer Institute NCI n d ) Purpose of the Study Native voic es often go unheard when research is conducted in AI/AN communities (Brown 1980) This research study will contribute to the curren t knowledge base of AI/AN health and cancer experiences and understandings through those intimately hearing the voices of A I/AN the Native Patient Navigators ; their voices provide guidance on specific components that could be evolved into model navigation programs that can be implemented throughout the United States that serve Native Americans Areas of S tudy The specific aims of this qualitative research project are through the lived experiences and understandings of Native Patient Navigators : Aim 1: To contribute to a culturally sensitive knowledge base of health and cancer screening experiences for AI/AN

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17 Aim 2: To explor e issues of stigma and historical mistrust surrounding health and cancer screening experiences as they are perceived by AI/AN Aim 3: To qualitatively inform existing health care intervention models for the p revention of cancer among AI/AN Aim 4: To critic ally develop an open and unobstructed channel for the voices of AI/AN as a means of acknowledging a new spirit of inclusion in research on Native people Statement of the P roble m Previous ly, d ata for AI/AN pop ulations which combined across geographic regio ns obscured important distinctions in cancer incidence rates between A I/AN populations and other populations R ecent analysis that has included a r egional focus and other measures has since found cancer i ncidence rates between AI populations and non Hispa nic White ( NHW ) populations to be significantly different ( Becker Espey, Lawson, Saraiya, Jim, &Waxman 2008; Edwards et al., 2010; Henderson Espey, Jim, German, Shaw, & Hoffman, 2008) R esearchers have found r egional geographical data for cancer incide nce rates among AI/AN populations and non Hispanic Whites (NHW) residing in the same area differ and these rates are distinct from other AI/AN populations ( Edwards et al., 2010; Espey et al.2007; Henderson et al., 2008; Wiggins et al., 2008). AIs from the Southern and Northern Plains were also found t o have lower survival rates for most cancer sites than other AI populations ( Cancer.gov, 2013; Fischer, Brown, Blanton, Casper, Croft, & Brownson, 1999 ). Moreover, the c urrent r esearch has supported that AI/A N populations from specific geographic regions not only have high incide nce rates

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18 of certain cancers, but poor survival from most cancers (Mayo Clinic Cancer Center, Nativ e Populations, 2014). The cancer burden continues to rise upwardly among Native A mericans ( Burhansstipanov, Dignan, Jones et al., 2012; Espey Wu, Swan et al., 2007). This burden includes the various and multiple ways cancer affects individuals as well as families. These effects include the potential of loss of employment, the necess ity of family members serv ing as p atient care givers who may need to relocate as a result; as well as unanticipated demands of child ca re costs, expenses and time for transportation, cha nges in relationships and other everyday life burdens ( Burhansstipano v, Dignan, Jones et al., 2012; Espey et al., 2007 ). Although the populations in various regions eve n with AI/AN living in areas known for lower cancer tion of the patient a patient treatment and recovery, appears to be high (Burhannstip anov & Hollow, 2001, p. 207). Therefore, i n essence, recovery from cancer treatment takes support and time ( Steele, 1994). In addition, c ancer is a disease of the elderly and effects more people older than 50 Because elders in tribal societies are the leaders and wisdom keepers, AI/AN populations and their small close knit communities are irrevocably hard hit when an elder succumbs to cancer. Tribal societies are hit with the loss of leadership and knowledge. Burhansstipanov & Krebs, 2013, p.39). This loss, as well, does not seem to have abated in recent times. Ca ncer death rates have declined more than 1% per year for women and

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19 men of every racial/ethnic group with the exception of AI/AN, which have remained stable (Siegel, Naishadham, & Jermal, 2013). Tribal priorities have previously focused on infectious disea ses such as hepatitis and tuberculosis, as well as high infant mortality and the effects of poverty which have now shifted. Changes in AI/AN lifestyles, such as rising obesity, diabetes, high use of tobacco, cancer incidence an d mortality rates have affe cted Native populations (Kaur, Burhannstipanov & Kreb s, 2013). These changes necessitate the reallocation of resources toward cancer among tribal people. Uniq ue and innovative interventions are necessary to address the rising cancer incidence mortality and overall cancer burd en that AI/AN regional population s continue to experience Har jo, Burhansstipanov, and Lindstrom ( 2014) note that, h istorical trauma has resulted in fear of the health care system as well as feelings of futility. As a consequence of this, AIs do not access health care systems until an emergency occurs (p. 414) Patient navigation ce nters on increasing access to health care, ove rcoming barriers the process of which may help prevent or mitigate health inequities ; as well as assistin g to increase access to quality timely care with the ultimate goal of potentially improving health care outcom es (Battaglia et al., 2001) Krebs et al. ( 2013 ) note that p atient navigation may be particularly useful with cancer care where navigation can p lay a role in helping to improve the overall health of al l those affected, such as the patient the family and the com munity in multiple areas. These areas according to the authors include: cancer prevention and early detection, cancer care access and coo rdination,

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20 insurance coverage and continuity, identification and referral to cancer sources and support services, and if necessary, p alliative and end of life care ( p.120 ). Patient Navigator s who have similar or the same background as their clients can he lp to build trust, facilitate patient provider communication, help to provide needed psycho emotional support, help with managing logistical obstacles that frequently arise with cancer care, as well as reduce potential anxiety and fear (Braun et al., 2012; Madore, 2012; Natalie Pereira et al., 2011; Petereit, Molly, Reiner, Helbig, Cina, Miner, & Roberts 2008; Wells, Battaglia, Dudley, Garcia, Greene, Calhoun, ... & Raich, 2008 ; Wilcox & Bruce, 2010 ). Krebs et al. ( 2013 ) also note the advantages of having Patient Navigator s who are not i nvolved in the patient to day care: Patient Navigator s who are not directly involved in the patient to day medical care are patient and family in a manner n ot possible for members of the patient Patients frequently see the Navigator as an insider to the health care system, but not a direct part of the system. The Navigator is able to understand the needs of the patient as well as the requirements of the health care system/team and facilitate coordination between the two while providing both personalized emotional support and comprehensive access to care and resources. Thus, the Navigator serves as a bridge between the patient a nd the health care system and can help both to identify strategies that support survival and quality of life (Native Navigator s and the Cancer Continuum [NNACC] Navigator s, personal communications, July 2012) (Krebs et al., 2013, p.120). Native Patient Na vigators offer an intervention to address the increasing cancer affliction the AI/AN community continues to experience as well as being community sensitive and culturally aware. Patient Navigator Native Navigator ) is the term used to describe a Native American who helps an individual in a Native American community in navigating the complex system of healthcare along the cancer continuum (Eschiti, Burhansstipanov, & Watanabe Galloway, 2012, p.74). Native Patient Navigators can address numerous barriers to care in their AI/AN communities due to personal knowledge of local area history and trauma. Native Patient Navigators address t his fear t hrough navigat ion as well as educat ion (Harjo,

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21 Burhansstipanov & Lindstrom, 2014). N avigators help pati ent s take control of their patient from perceiving her/himself as a victim and to have a proactive voice and choice in all aspects of the health care they Presen tly, Native patient n avigation is in tenuous state Typically grant funded there is discussion and debate regarding who should fund navigation and for example P atient Centered Outc omes Research Initiative as of s ummer 2014 would not fund any applicatio n that used Patient Navigator s W hat contributes to the confusion is the Affordable Care Act (ACA) that uses the phrase Navigator but is actually describing functions of an insurance broker There is a distinction to be made between patient navigation as designed by Harold Freeman (2011) and insurance brokers. In contrast to insurance brokers, patient navigation work focuses on incr easing access to health care, overcoming barriers thereby mitigat ing health inequities ; therefore helping patient s to a c ces s qual ity, timely care thus improving h ealth outcomes ( Battaglia et al., 2011). As well, Patient Navigator s are also distinct from c ommunity h ealth w orker s Specifically, c ommunity h ealth w orkers are culturally appropriate and respected lay health wo rkers who bring the patient to the door or the clinic of the health facility A Patient Navigator and Native Patient Navigator (NPN) role in contrast, does not end at the door and continues within the health facility Definition of Terms 1. Alaska Natives: Native Americans whose ancestry is from tribal members or any federally recognized Indigenous members of Alaska

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22 2. American Indians: Native Americans whose ancestry is from any state or federally recognized tribal or Indigenous members of the lower 48 of the U nited States 3. Bicultural: generally accepted by dominant society; they are simultaneously able to know, accept, and practice both mainstream values and traditional values and beliefs (LaFramboise Trimble, & Mohatt, 1990 p. 638). Native Patient Navigators are generally perceived to be bicultural with respect to Native traditional values and beliefs and Western mainstream values. 4. Continuum of cancer care or the cancer continuum : is the nonmedical and medical trajectory of the experience of cancer, which includes the phases of prevention, detection, diagnoses, treatme nt, and survivorship ( National Cancer Institute NCI, n.d .) 5. st federally recognized tribes prioritize health problems for their local community to determine the conditions that may be referred to medical consultant care elsewhere, 6. Contract Health Service Delivery Area (CHSDA): Indian Hea lth Service (IHS) contract delivery service area 7. 8. Indian Health Service/Tribal/Urban: Clinics serving Native people. Most (Eschiti et al., 2012, p.74).

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23 9. the terms of Native people Indian American Indian Native Indigenous people including Alaska Natives reflecting the different individual preferences among Native people academicians and researchers The researcher use s both the term Native American interchangeably with American Indian and Alaska Native (AN/AN) throughout this thesis Census Bureau for health indicator s and statistical data as well the term currently use d and preferred by many tribal Nations and entities in the United States by a culturally aware student from the American Indian Student Organization of the University of Oklahoma who states simply and profoundly : Being Indian is more than checking the box for ethnic origin It is a way of life a way of being The love for family respect for your elders spirituality self determinatio n integrity pride understanding protecting the environment humor and socialization are all the essence of being Indian (Bennett 1994 p 35) 10. Native Patient Navigator ( Native Navigator ) is the term used to describe a Native America n who helps an individual in a Native American community in navigating the complex system of healthcare along the cancer continuum (Eschiti et al. 2012 p.74 ) 11. N ation al Cancer Institu te Physician Data Query ( http://www.ni.nih.gov http://cancernet.nic,nih.gov/pdq.html www.CancerNet@icic.nci.n ih.gov ).

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24 Study H ypothesis similarly to the slow progress made in reducing AI/AN cancer incidence and mortality overall without Native voices effective cancer interventions will only be achieved in painful increments fo r AI/AN communities Preventative health strategies designed to address the health disparities that exist in the AI/AN communities must take into account previously marginalized AI/AN voices These voices in turn will help reflect the dynamic interactio n and interplay of culture history community and society It is only through these Native voices that critically informed and culturally insightful health interventions will begin to develop as these actions are in turn mediated by medical evidence pr ofessional expertise community resources and Native American healing wisdom/worldviews Methods This study was based in a phenomen ological approach grounded in Indigenous and Native ways of Knowing Socioc ultural and Critical T heories Rather than co ntinue to ask AI/AN questions posed in a purely quantitative inquiry as many previous studies have pursued The Phenomenology Approach and Advantages Interpretive inquiry most fully align s with discovering the meaning beneath a given process of experience (Merriam 1998) Qualitative research or inquiry puts emphases on that , 1998 p 1) Measurement techniques are insufficient to allow insig ht into the human component of the interaction (Moustaska 1994) The research reported here is based on the Native Patient

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25 Navigators The qualitative research tradition supports the focus of this study and its research goals to uncover this meaning s tradition of phenomenology (Moustaskas 1994) A phenomenological mode of inquiry focuses on experience descriptions as sumes that there are common elements among human experiences (Patton 2002 p 106) As a qualitative method Phenomenology examines lived experiences or the meaning of a chosen p henomenon Phenomenology asks is (V an Manen 1990 p. 9) It is a qualitative methodology that is brought into research when close to nothing (or a small amount) is nature (Munhall 1989) The tradition of phenomenology is well suited for focusing on first person experiences and identifying a 1994) The experiences of these Native Patient Navigators rem ain relatively unexplored compared to other Patient Navigator s Qualitative research and phenomenological inquiry are vehicles that can give voice and visibility to the experiences of this group of Native Patient Navigators These methodological approach es were chosen because of their ability to capture study participant experiences Qualitative methods wer e utilized to collect data that were analyzed within a framework of a phenomenology approach Data consisted of in depth ethnographic interviews sup ported by field notes and background documents. Twenty six Native Patient Navigators of b oth genders representing over fifteen tribal Nations were interview ed from states as far away as from each other as Alaska and Florida

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26 These data were analyzed usi ng NVivo 10 a commercially available software for data analysis using apriori and emergent categories to find the shared elements among the responden different experiences These methods of data collection and analysis will be described in detail in C hapter III The conceptual framework described below has informed the discussion of the findings and interpretation of their meaning (See Appendix Q for Conceptual Framework Diagram) Conceptual Framework This study focuses on interpretation and interac tion Highlighted in this study are the elements of Native ways of knowing Amerindian circles of learning sociocultural theory critical race theory Tribal critical race theory communities of practice (Lave & Wenger 1991; Wenger 2000) and the conce pt of border c rossing (Jenkins 1998) Native W a ys of K nowing / Na tive Epistemology / Amerindian Circles of L earning American Indians and Alaska Natives (AI/AN) had systems of education in place long before 1492 with Native scholars and teachers sharing I nd igenous knowledge through circles of learning to instruct both children and adults : T raditional American Indian education historically occurred in a holistic social context that developed the importance of each individual as a contributing member of a soc ial grou p. Tribal education sustained a wholesome life process. It was an educational process that unfolded through l group and the natural world. This g, while providing both personal development and technical skills through participation in community life ( Cajete, 1994, p.25 ) Elders the keepers of sacred knowledge as well as other knowledgeable individuals continue today to educate members in specifi c tribal ideologies and practices around a broad range of subjects that include art historical narrative religious ceremony knowledge of the land zoology botany medicine law political science and a stronomy In these sacred circles of learning th e duty and the responsibility of the tribal community

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27 to educate and share critical knowledge among its members is realized peoples throughout the world have susta ined their unique worldviews and associated B arnhardt & Kawagley 1998, p.2). This critical knowledge continues forward: Indigenous knowledge is not static, an unchanging artifact of a former lifeway. It has been adapting to the contemporary world since contact with others began, and it will cont inue to change (Bielawski, 1990, p. 18) In addition, Amerindian circles of learning are conducted in both formal and informal settings with participants of all ages Circles of learning could possibly be literally structured circles but most likely thes e circles are informally conducted in day to day mentorship pairs or observational learning in daily life For example precisely constructed learning circles can exist within a ceremonially sacred place where knowledge is passed down in a set prescribed manner On the other hand learning circles can consist of an elder or mentor who sensing an opportunity for learning in his or her daily activities spontaneously gathers others around him and passes on sacred wisdom to those present Their [Alaska N ative] traditional education processes were carefully constructed around observing natural processes, adapting modes of survival, obtaining sustenance from the plant and animal world, and using natural materials to make their tools and implements. All of this was made understandable through thoughtful stories and demonstration ( Barnhardt & Kawagley 1998, p. 2) Thus learning circles are conducted within the cycles of life and apprenticeship with a participatory orientation more than a specific spatial ar rangement Learning in these circles is highly revered and respected among AI/AN people; circles remain among the most sacred of all configurations for Native People Woven within these Amerindian Learning C ircles resides a unique view of history where the living changes of the people today contribute to history along with the

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28 ancestral wisdom acquired from the past This view exists contrary to a Euro Western cultural characterization of history defined as a linear chronicle or record of the past even ts History according to Amerindian tradition can be seen as a participatory experience that is spherical and prolapsed In other words learned individuals who have come before contribute to what will go to the next generation along with the current l earning of today It is in this way that both past and present generations simultaneously are receiving from past generations and contributing to the next generations; the reciprocal relationships of Amerindian education thus span from the past to the pr esent and into the future Circles of learning are a well known pedagogy of AI/AN AI/AN people actively participate in these circles daily in their communities These circles of learning reflect a conceptualization of learning that mirrors a Native Wa y of Knowing and B eing for AI/AN people It is an idea of learning that extends beyond an individual to the community to the place to the environment to the tribal nation and indeed to past and future generations It represents a type of learning tha t permeates the society in which the knowledge is acquired , learned individuals or Important to this learning is i nterconnectedness and relationshi p. These ideas of connectiveness are import ant among many AI/AN groups in that as Garrett notes and the whole is considered to be Harper Caldwell & Decora 2003 p 16) An example of the importa nce of this may be found in many Native American origin stories where as Quintero (2000) relates:

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29 Origin stories provide a powerfully effective social vehicle that facilitates and structures this process of integration Origin stories provide accounts of the complex webs of relationships that must be established and maintained in order to p 1041) Webs of relationships needing to be continually established and maintained thus remain critical ly important for many Native Nations Sociocul tural Theory Native ways of knowing have parallels to those ideas put forward by sociocultural theory Current views of sociocultural theory draw mostly on the theorist Vygotsky (1986) as well as other more contemporary theorists such as Rogoff (2003) and Wertsch (1991 1998) The sociocultural perspective according to Tharp and Gallimore (1988) explains that human development specifically higher order functions develop out of social interaction In their view Vygotsky would argue that in order to u nderstand this higher order development we must look outside of the individual and examine the social world in which the individual develops In other words according to a sociocultural perspective learning does not take place without a sociocultural c ontext The individual must participate but learning is not an individual activity Vygotsky according to Kublin et al (1989) would also describe learning as embedded within a social context and as occurring with people objects and events in the su rrounding environment This study will draw on both Amerindian conceptualizations of learning and sociocultural theory to illuminate study findings as Native Patient Navigators share their experiences and understandings of cancer health and cancer screen ing experiences While different in their histories and significantly different in terms of their acceptance both the Native ways of knowing and sociocultural theory suggest that the making of the mind is social historical and situated in cultural cont exts Sociocultural theory and the

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30 related concepts of communities of learners and apprenticeship will be discussed further in Chapter II Critical Race Theory The empowerment of the marginalized and disenfranchised voice gives critical race theory (CR T) its strength and applicability Critical theory the root of CRT is the own power to act on desired social change (Ladson Billings 2004) It also allows empow erment with other voices with the potential for transformation and in turn challenges the mainstream dominant oppressive ideologies that exist in society at large CRT is the critical examination of culture and society and the intersection of law race a nd power Historically Native voices have been absent from the ledgers of history and its related theoretical paradigms not by choice but by patriarchal traditions in place long before the landing of Columbus Strides in opening up a channel for the voices of AI/AN have significant links to the Civil Rights Movement which has directly impacted opportunities in equal employment education science and choice 1920 was the year of but this right to vote was not officially passed on to Native Americans until 1924 and in some cases not until 1954 (Mankiller 1993) With regards to Native healthcare, Indian Health Service (IHS) was i nitiated in 1955 to take over the healthcare of AI/AN, changing hands from the Bu reau of Indian Af fairs ( BIA ) (IHS, 2014) IHS historically has been an increasingly complex and underfunded system tha t provides very limited services to reservation residing AIs and even less available services in urban areas (Harjo, Burhansstipanov & L indstrom, 2014).

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31 Critical race theory analytically examines the structures in place that continue to oppress these AI/AN voices and deny full participation including participation in in their own healthcare Critical race theory is explored further in C hapter II Communities of Practice Communities of practice is a notion developed by Jean L ave and Etienne Wenger (Lave & Wenger 1991; Wenger 2000) A community of practice can be defined as a collection of people who participate on an on going basis i n some common endeavor For example a book club a church convention or the gathering of a bowling league can be a community of practice However an important distinction for a community of practice is that this group does not merely meet on the basis of shared characteristics such as gender or race Communities of practice also are not defined solely by proximity such as a neighborhood grou p. What distinguish es a community of practice is that the members of the group engage in a sustained shared en deavor This on going shared practice is critical to defining a community of practice In the process of sharing in a mutual joint activity the group develops characteristic ways of doing things as well as shared values views power relations and way s of talking Identity for the participant s also plays an important role within the grou p Communities of practice organize themselves around a specific area of activity and knowledge giving the group members a sense of identity and engagement in joint enterprise Participants additionally situate themselves within the group and later in relation to the larger social order (Lave & Wenger 1991) Communities of practice will be discussed further in Chapter II

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32 Border Crossing According to Kurt Lewin ( cited in Rychlak 1981) individuals possess a life space a developing psychological environment that within an individual lives All things encompassed in this evolving dimensi on or life space It is in this life space Lewin notes that individuals organize interpret and may further enact their experience Because of this and can be otherwise composed uniquely and patterned Lewin additionally notes that within this life space there exist various assigned regions These regions are differentiated by borders which in turn can vary in their permeability letting some things in while at times excluding others In a similar way so me regions are isolated from certain other regions and others can be in close and constant contact Clark (2000) gives an example of a person who clearly separates the regions in their life space for religion and work Similarly individuals such as Na tive Patient Navigators who need to negotiate between two worlds and between two worldviews may border crossing will be discussed further in Chapter II Findings from the Study Native Patient Navigators have a deep and insightful understandin g of health and cancer in AI/AN communities This understanding comes from their very personal and intimate experience with cancer and its effects within their tribal communities Native Patient N avigators use their unique three facet identity ( Native, Community Servant and

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33 Pr ofessional) to access and communicate to Native clients the potential benefits of Western medicine and in this situation cancer screening diagnosis treatment and if neces sary, end of life options Based on these different understandings both tribal and Western medical Navigator s develop their professional community of p ractice regar ding health and cancer. Using this practice, Navigator s are critical interpreters and d ecipher two distinct outlooks and ways of viewing the world Navigators work as mediators, advocates, educators and translators between Western medicine and Native people. As well, i t is through these two lenses using both Native and Western medicine per spectives that Navigator s use their role s as border crossers to inform individual and collective choices of those they guide in understanding Native Patient Navigators look through their double but critical lenses to examine colonialism and imperialism ideology directly and address their work within the limitations of Euro Western racism and discrimination Finally Navigator s act as bridge makers between Western medicine and Native traditional medicine Conclusions The legacy of imperialism and colo nization of AI/AN peoples has in the past and continues today to privilege Western medicine and its tenets over Native traditional medicine invalidating Native philosophy and worldview Native Patient Navigators incorporate Native ways of knowing and bei ng such as respect oral tradition kinship spirituality communication norms and the meaning of community into their perceptions understandings and the roles they play. By this action Native Patient Navigators give voice to the perspectives of AI/AN people.

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34 Navigators acknowledge and intimately understand the racism Native people have to deal with as well as their resulting mistrust They also know that there is benefit to overcoming and mitigating the fear and mistrust; by building trust ing relatio nships with others through the actions of presence respect translation and education Navigators use a pragmatic approach to helping AI/AN from within the shared experience of colonization Within their roles and identity as Navigator s, as community o f practice practitioners as border crossers and as bridge makers Native Patient Navigators serve with this deep and heartfelt compassion for the Native people Implications Native p atient n avigation is critical for cancer education within AI/AN popula tions P atient navigation programs found successful today in AI/AN communities may help to provide the foundation for culturally relevant and evidence based models in the future (Eschiti Burhansstipanov & Watanabe Galloway 2012) Cancer education to be effective needs to be customized to the group receiving the information Native p atient n avigation is an important intervention to mitigate cancer deaths in the AI/AN population The con clusions and implications of this Native Patient Navigator study will be discussed in more detail in Chapter V One implication has to do with insider/outsider research This is addressed below and throughout this dissertation Researcher Role and Assumptions I am an insider researcher a Native person trying to st udy and research American Indian and Alaska Native (AI/AN) populations I am also an insider in that I have volunteered and worked i n the field of Native American c ancer and in my Native community for many years

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35 Qualitative researchers have continually engaged in a back and forth debate that considers the merits and drawbacks of insider research (Labaree 2002) Th e merits of insider research can be considered many by some researchers Of particular importance with Native populations is that the resea rcher may have access to the tribal group that s/ he may not have had otherwise and under other situations This access to the group can be heightened deep and in many cases may even be privileged (Labaree 2002; Merton 1972) Other merits and advantage s to insider research are an increased awareness and sensitivity to understand group communication in the form of cues both verbal and nonverbal as well as, communication patterns/ cultural rules (Haniff 1985) and deeper in depth knowledge as well as in creased sensitivity to the community (Swisher 1986) Shared experiences can give some increased methodological advantages to the researcher as well for instance to those working in their communities through shared past experiences (Zinn 1979 p 212) cultural norms and normative rules (Onuki Tierney 1984) An insider researcher may also have a better and increased chance of establishing on going rapport with a community because of a joint shared history (Guevarra 2006) thus knowing the agendas important to t he community and/or the Native N ation For example Barlow (1976) argues that Indian people are at times, He notes that pe opl e (non Indian) come among Native people and let us know what is always (Barlow 1976 ) This perspective is verified by research by Brown (1980): This belief is supported by a review of 962 articles on Indian educational rese arch ( Trimble Goddard & Dinge s 1977) which found that much of the research tended to concentrate on issues and problems of interest to the investigator and not to the Indians ( Brown 1980 p 52)

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36 Insiders might also have specialized or improved ability to d escribe a group in which they are insiders (Onuki Tierney 1984) Also, a n insider can also catch subtle nuances that outsiders frequently may f ail to note (Brayboy & Deyhle 2000) Some drawbacks of the insider position have been stated by Hammersle y and Atkinson (1996) For example over rapport has been stated as a significant drawback to insider research when discussing participant observation within the realm of ethnography Over rapport according to as Hammersley and Atkinson (1996) i nvolves a researcher who grows to identify with the group s / he is studying This identification in turn may lead to taking several things for granted and as a result the s may be partial perspectives (p 111) Thus as Ha mmersley and Atkinson (1996) argue her increased inability to distance him/ herself adequately from group accounts resulting in partial study reporting Brayboy and Deyhle (200 0) qu estion the notion that any researcher is totally objective in reality They note that being objective when researching a group of which one is part is an impossibility and trying to attain this claim to objectivity can be in the end detrimental actually working against the researcher This reach for objectivity note the authors (p 165) Interestingly Brayboy and Deyhle (200 0) also argue that when doing insider research it is their lack of distance that is important in their own research areas In their article recounting their insider status in their studies they note experiences it is our lack of distance that has enhanced our own res 164) The

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37 authors fu rther argue against Hammersley and (1996) position on the drawbacks of insider research and ultimately note the value of this type of research for gaining new knowledge Moreover with regard to insider researc h one must be careful It is especially As Garrick (1999 ) cautions researcher participants w colonizer of the subjects through re telling of their p. 152) theref ore r especting and guarding against adopting this po sition throughout research Despite the potential for complications of being an insider researcher I believe that a study such as this one would not have been completed if I had not been seen as pa rt of the community Being part of the community brought additional strengths, critical detail s and essential understandings that may have been missed by outside participants Study Limitations The limitations of the study were as follows: s population was a convenience sample b) the interviews were self report therefore only one (self) perspective may be presented in each case c) the study used a population specified by a certain criteria and d ) the study lacked Native Patient Navigator representation from the IHS Pacific Coast region Additionally contributed to bias or in the case of using a phenomenological approach to the study a limited ability to step back from the perceptions of st udy participants Relevance of the Study This study will contribute to the current knowle dge surrounding health and cancer in AI/AN populations through the experiences and the understandings of Native Patient

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38 Navigators Similar to other societies man y AI/AN see their views on the world through their culture In numerous Native Nations traditional AI/AN belief systems are contrary to Eurocentric beliefs about health and medicine Native Patient Navigators help to bridge these contrary beliefs to inc rease access of AI/AN populations to greater choices in health care Presently, t here exists very little understanding of the complex cultural elements conditions and circumstances in AI/AN communities that influence Native people Understanding the per ceived experiences of Native Patient Navigators has the potential to provide insight to Native and Western health practitioners and health policy makers as well as health researchers This work may also cont ribute to the acceptance and sustainability of N ative Patient Navigators within healthcare systems Organization of the D issertation In Chapter II I examine more dee ply Native ways of knowing and being and explore Amerindian ways of k nowing sociocultural theory critical race theory Tribal critica l race theory communities of practice and order c rossing A lso review ed is the history and the lite rature on p atient n avigation, as well as Native p atient n avigation as an intervention to improve the health of AI/AN people Additionall y, in this chapter Native ways of k nowing and being and differences between Western and Native traditional medicine are discussed Chapter III contains the detailed methodology which includes the study design the process of iterative analysis and inquir y as well as participant selection methods Chapter IV is the presentation of the findings with discussion and interpretation informed by the conceptual framework of the study Lastly Chapter V includes a discussion of the findings the implications o f the study and overall

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3 9 conclusions for this study inquiry This final chapter also includes future implica tions and suggestions for additional research Summary Despite the advances of modern medicine, AI/AN have not experienced the increased health b enefits and the lessening of the burden of disease that other populations have experienced AI/AN populations have long suffered from a legacy of injustice and discrimination that has resulted in large health disparities and inadequate health care (Espey et al., 2013). For example, for the per i od from 1990 2009, AI/AN did not experience similar decreases in all cause mort ality as seen for Whites (Espey et al., 2013) Despite major databases reporting lower rates of cancer statistics, there are distinctiv e patterns in AI/AN cancer incidence and mortality ( Cobb & Paisano, 1998; Espey et al., 2007; E s p e y, Paisano & Cobb, 2005; Haverkamp, Espey, Paisano & Cobb, 2008; Wiggins, et al., 2008) and substantial cancer disparities between AI/AN and Whites (Espey et al.,2013) Cancer is cited as a leading cause of premature death among American Indian and Alaska Native (AI/AN) populations (US Department of Health and Human Services, Health, United States, 2011). For AI/AN females, cancer is the leading cause of deat h (Espey et al., 2013). Additionally t he substantial progress in reducing cancer death rates experienced over the l ast 20 years by Whites has not been shared by AI/AN persons (Espey et al., 2013). Native Patient Navigators offer an innovative approach t o lessening the cancer burden experienced by AI/AN populations.

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40 CHAPTER II REVIEW OF THE LITERATURE and that is because the Power of the World always works in circles an d everything tries to be round. The sky is round and I have heard that earth is round like a ball and so are all the stars. The wind in its greatest power whirls. Birds make their nest in circles for theirs is the same religion as ours. Even the seasons form a great circle in their changing and always come back again to where they were. The life of a [person] is a circle from childhood to childhood Black Elk Problem and Purpose of the Study Cancer has been cited as the leading cause of premature death among American Indian and Alaska Native ( AI/AN ) populations (US Department of Health and Human Services, Health, United States, 2011). Cancer mortality and incidence rates vary for AI/AN individuals compared with Whit es by each type of cancer and region. Research has supported that AI/AN populations from specific geographic regions have high incidence rates of certain cancers and poor survival from most cancers (Mayo Clinic Cancer Center, Native Populations, 2014). T rends in death rates showed that greater progress in cancer control was achieved for White populations compared with AI/AN populations over the last 20 years (White et al., 2014) The cancer burden continue s to rise among Native Americans (Burhansstipanov Dignan, Jones et al., 2012 ; Espey, Wu, Swan et al., 2007 ). Provider and p atient barriers as well as increasingly complex health systems contribute to significant and costly delays in cancer care; these delays can come in the form of a decreased quality of care with associated poorer outcomes for p atient s Native Patient Navigators provide an important intervention in response to this need The following

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41 sections provide the reader with information about p atient navigation AI/AN culture and heath care needs and the particular contributions of Native Patient Navigators This is followed by a further explanation of phenomenology and the theoretical framework used in this study to analyze the perceived experiences of Native Patient Navigators P atient Navigation: History The conceptualization of navigation can be traced to Dr Harold Freeman a cancer surgeon and the former president of the American Cancer Society from 1988 to 1989 and Chair man 12 years Dr Harold Freeman and his colleagues started the first p atient n avigator programs at an inner city hospital Harlem Hospital Center in New York City (Freeman 2011) According to Dr. Freeman, p atient navigation was originally conceptualized as a strategy to improve outcomes for vulnerable populations by addressing barriers to the timel y diagnoses and subsequent treatment of cancer as well as other chronic diseases. h istory of p atient n avigation (2011), Freeman notes that the development of the concept of p atient n avigation was in turn related to testimony heard at the American Cancer Society N ation al Hearings on Cancer in the Poor occurring at the time (1989) in seven American urban cities. This t estimony was primarily by individuals who were poor and had been diagnosed with cancer (Freeman, 2011) Findings from a subsequent Nations included: 1) Poor people face substantial barriers t o obtaining cancer care and often do not seek care if they cannot pay for it. 2) Poor people endure greater pain and suffering from cancer than other Americans. 3) Poor people and their families often make extraordinary personal sacrifices to obtain and pay for care.

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42 4) Fatalism about cancer is prevalent among the poor and may prevent them from seeking care. 5) Current cancer education programs are often culturally insensitive and irrelevant to many poor people (Freeman, 2011, p.3540) In relation to these hearings, i n the Harlem Hospital Center a p atient navigati on program was begun to help address breast cancer disparities with African American women The program evaluations of this early inner city intervention on this vulnerable p atient population revealed positive results; a significantly decreased time for f ollow up services received for those p atient s using a Navigator was found (Oluwole 2003) Additionally by using an extensive p atient n avigator program the five year survival for p atient s with breast cancer in the intervention increased dramat ically from 39% to 70% thus indicating a striking decrease in cancer mortality This decrease in cancer mortality was achieved through free and low cost screening mammography and the addition of improved outreach and public education These factors led to p atient s presenting themselves at clinics with earlier stages of breast cancer rather than at advanced stages ( Freeman, 1989; Freeman & Payne, 2000) In the original Freeman model the Navigator receives adequate training to provide advocacy and em otional support To this end the Navigator may also accompany p atient s to their follow up appointments and continue to support the p atient The Navigator therefore assists the p atient in obtaining services and follow up while continuing to support the p atient In this model the support of the Navigator initiates at the time of an abnormal cancer test (Freeman Muth, & Kerner, 1995) Navigators can offer p atient n avigation support to individuals when they are at different phases of the cancer continu um As a reminder, the cancer continuum is described as the non medical and medical trajectory of the cancer experience from

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43 screening to survivorship issues i.e. prevention detection diagnosis treatment and survivorship (NCI n d .) Individuals can experience numerous barriers along each phase of the cancer continuum (Burg, Zebrack, Walsh, Marmaldi, Lim, Smolinski, & Lawson 2010; Freeman & Chu 2005; Strzelc z yk & Dignan 2001 ) Patient Navigator s offer an original way of addressing these barriers As time has passed since the original Freeman model there has been considerable investment in p atient n avigation In June 2005 the Patient Navigator Outreach and Chronic Disease Act of 2005 was enacted into law in the United States This law which was a new amendment to the Public Health Service Act made available a sum of $25 million to the Health Resources and Services Administration for the purposes to administering a demonstration grant program The demonstration gr ant program served to empha size Patient Navigator services with the eventual goal of reducing barriers and improving existing health care outcomes for p atient s Funded recipients were required to recruit train and employ Patient Navigator s to provide these services to vulnerable populations experiencing considerable health disparities Funding over the years has continued for p atient n avigation and so has the concept evolved from its original model Alt hough p atient n avigation was introduced as an intervention two decades ago p atient n avigation is still developing There remains a lack of consensus regarding the necessary qualifications of Patient Navigator s and their impact on the continuum of cancer care These topics have been the focus of concern in several studies on p atient navigation. For example, i n 2008, Wells et al (2008) P atient N avigation: Stat e of the Art or is it S reviewed 45 articles identified in the

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44 Navigator at were published or in press as of October, 2007. According to the Wells et al (2008) study these articles supported the efficacy of p atient navigation in some areas. S ixteen of these studies provided data on the efficacy of navigation with regard to improving timeliness and receipt of cancer screening, diagnostic follow up care as well as treatment. Patient navigation services in these articles were further defined and differentiated from othe r similar outreach services. Moreover, the Wells et al. (2008) study found evidence to some degree of the efficacy for p atient navigation in increasing participation in screening for cancer and client adherence to diagnostic follow up care after the detection of an abnormality. The a uthors of these articles r eported increases in screening ranging from 10.8% to 17.1% and increases in adherence to diagnostic follow up care in the range of 21% to 29.2% when compared with control p atient s. However, there was less evidence in the areas of efficacy of p atient navi gation in reducing either late stage cancer diagnosis or in delays in the initiation of cancer treatment as well as less evidence on improving outco mes during cancer survivorship. Most studies reviewed suffered from methodological limitations, for exampl e lack of control groups, small sample sizes, and contamination with other interventions In 2011, Paskett, Harrop, and Wells et al. provided an updated review of the of the Wells et al. (2008) study of p atient P atient Navigation: An Update on the State of the S cience number of studie s that were published up to that year as a follow up from the Wells et al (2008) article Navigator and

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45 keeping the search terms broad to accommodate changing terminology in the field. For example, a s the Freeman model evolved the language did also ; Patient Navigator s have b een referred to in the past as Lay Health A dvisor s Native Sisters, and P atient A dvocate s Thirty three articles published from November 2007 through July 2010 were included Paskett (2011) and colleagues found in their survey of the literature in line with the previous Patient Navigator review that there is buildin g evidence of some degree of efficacy of p atient navigation ( p. 237 ). These increases in efficacy are in terms of increasing cancer screening rates This being the case however there was less evidence that documented the benefit of p atient navigation with r egards to diagnostic follow up and in the treatment setting There was also a s carcity of research that focused on p atient navigation and cancer survivorshi p. The review noted methodological limitations in several of the reviewed studies similar to the original review, which included lack of control groups and small sample sizes In summary, r esearch is needed to determine the efficacy of cancer p atient navigation along all phases of the cancer continuum ( Paskett Harrop & Wells 2011) Nature of w ork A working definition of p atient navigation work in this field was provided by the National Cancer Institute (N CI ) in 2004 In this definition the nature of the work of p atient navigation is referred to as the guidance and support offered to pe rsons with either a new cancer diagnosis or abnormal cancer screening in accessing the cancer care system This p atient navigation work includes overcoming barriers and

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46 facilitating timely quality care that is provided in a culturally sensitive manner ( N a tion al Cancer Institute NCI P atient Navigation Research Program 2004) Because of the racial/ethnic and lower income populations that Patient Navigator s work with it is imperative that they be culturally and linguistically competent Cultural and li nguistic competence in this regard is a set of congruent behaviors attitudes and set policies that help and enable an individual to work effectively given a cross cultural situation ( Cross Bazron Dennis & Isaacs 1989) Patient navigation can exist in a variety of situations; therefore the nature of the work of p atient navigation is best conceptualized by the Principles of P atient Navigation originally defined by Harold Freeman and updated in 2011 These principles are the key to help guide the wo rk of p atient navigation and are periodically accessed to include on going revelations Patient navigation work continues to advance and evolve beyond its original inception in the Harlem model over 20 years ago from the Freeman & Rodriguez (2011) articl e on the istory and P rinciples of P atient N avigation the following Principles of P atient Navigation : 1. Patient navigation is a p atient centric healthcare service delivery model. The focus of navigation is to promote the timely movement of an ind ividual p atient through an often complex neighborhood where he or she lives, to a medical setting where an abnormality is detected, a diagnosis is made, and then treatment rendered. The journey continues from rehabilitation and survivorship to the end of life. 2. P atient navigation serves to virtually integrate a fragmented healthcare system for the individual p atient As p atient care is so often delivered in a fragment ed manner, particularly related to those with chronic diseases, p atient navigation has the potential of creating a seamless flow for p atient s as they journey through the care continuum. P atient navigation can be seen as the guiding force promoting the tim ely movement of the p atient through a complex system of care. 3. The core function of p atient navigation is the elimination of barriers to timely care across all segments of the healthcare continuum. This function is most effectively carried out throug h a one on one relationship between the Navigator and the p atient

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47 4. P atient navigation should be defined with a clear scope of practice that distinguishes the role and responsibilities of the Navigator from that of all other providers. Navigator s sho uld be integrated into the healthcare team to promote maximum benefit for the individual p atient 5. Delivery of p atient navigation services should be cost effective and commensurate with the training and skills necessary to navigate an individual throu gh a particular phase of the care continuum. 6. The determination of who should navigate should be determined by the level of skills required at a given phase of navigation. There is a spectrum of navigation extending from services that may be provided by trained lay Navigator s to services that require Navigator s who are professionals, such as nurses and social workers. Another consideration to take into account is that healthcare providers should ideally provide p atient care that requires their level of education and experience and should not be assigned to duties that do not require their level of skills. 7. In a given system of care there is the need to define the point at which navigation begins and the point at which navigation ends. 8. There is a need to navigate p atient s across disconnected systems of care, such as primary care sites and tertiary care sites. P atient navigation can serve as the process that connects disconnected healthcare systems. 9. P atient n avigation systems require co ordination. In larger systems of p atient care, this coordination is best carried out by assigning a navigation coordinator or champion who is responsible for overseeing all phases of navigation activity within a given healthcare site or system. It is imp ortant to distinguish a system of p atient navigation from the P atient Navigator ( s) who work within the system (p. 35) Types of n avigator s/t itles Since Navigator sites vary and are heterogeneous in nature Navigator titles are also variable Titles of p eople serving in the role of Navigator could be health educators advocates lay community peers and Native Patient Navigators Some Navigator titles follow:

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48 Table 2.1 : Different Navigator Titles Title Definition Community Health Worker Community he alth workers should be members of the communities where they work, should be selected by the communities, should be answerable to the communities for their activities, should be supported by the health system but not necessarily a part of its organization, and have shorter training than professional workers W orld H ealth O rganization Policy Brief, 2007 p.9 Lay Health Worker A lay health worker (LHW) is defined as a health worker who performs functions related to health care delivery and is trained in s ome way in the context of an intervention, but who has not received a formal professional or paraprofessional certificate or ter tiary education degree (WHO, 2013 I ntroduction ) Patient Navigator Dr. Harold Freeman initiated the concept of patient navigat ion and described Navigators as those who work directly with individuals to facilitate timely access to healthcare by eliminating or navigating barriers that may impede care Navigators primarily work in medical settings, but also may work in the communi ty to inform about and provide timely access to recommended examinations In cancer care, a critical function of their role is to eliminate barriers to timely diagnosis and treatment in those who have abnormal or suspicious findings. Navigators may be lay persons (from the community) or clinical (healthcare) professionals (Freeman, 2006 b Journal of Cancer Education, p. 165 PNs) function similarly to Community Health Workers; however, they cross the threshold of introduction to the clinic and continue providing cultural support within clinical departments (i.e., they cross boundaries). i (Burhansstipanov,2015, Global Frontiers, in press, p.1) Native Sister provide emotional support throughout recruitment, cancer screening, and follow up procedures (NAWWA, Burhansstipanov, 1998, p.191). Native Sisters addressed body, mind, emotion al and spirit ual needs of the client. Native N avigators Trusted members of the local Native Ame rican community [who] undergo training to deliver comprehensive and culturally appropriate education regarding the full continuum of cancer prevention and care. (Eschit, et al., 2012 p.74 ) Note. Burhansstipanov, NAWWA, 1998, (p. 191); Burhansstipanov, 20 15, Global Frontier, in press, (p.1); Eschit, et al., 2012 (p.74); Freeman, 2006 J Cancer Education (S11 S14); Lewin, et al., 2006 ; World Health Organization (WHO) Policy Brief, 2007. ( p.9 ) ; World Health Organization (WHO) 2013, (introduction)

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49 Educati onal training also varies with the setting of the N avigator program with cost considerations and whether they are hired and/or work for a community based organization or are hired and/or work from a clinically based setting Community based and clinica l based Navigator s have both their advantages and disadvantages for N avigator programs (Eschiti Burhansstipanov & Wantanabe Galloway 2011) (See c hart on A dvantages and D isadvantages of W here Navigator s W ork A ppendi x B ) Also depending on these varia bles Patient Navigator s will vary in prior training educational background and skill sets Thus Navigator s can be trained as nurses or have backgrounds and training such as medical assistants or social workers The emphasis in this study and a criter ion for selection for the participants regardless of title was those the Principles of P atient Navigation ( Freeman & Rodriguez, 2011). Navigator professional r oles Professional roles for Patient Navigator s d epend on the primary outcomes for the program the navigation model and the setting Because of this Patient Navigator heterogeneity there have been several initiatives to generalize a p atient navigation program and Navigator Krebs et al. (2013) have described many roles and responsibilities of C ancer Patient Navigator s.

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50 Table 2.2: Roles and Responsibilities of Cancer Patient Navigator s Educate about screening guidelines, signs and symptoms of cancer, treatment modalities, side ef fects, follow up care Maintain library of materials and access to online materials Coordinate and serve as support for medical visits Assist with transportation, child and elder care Assist with accessing financial services including obtaining/managing hea lth insurance or public assistance Maintain a directory of services and advocate for needed and additional services Connect p atient to resources and support systems; refer to counselors p atient provider c ommunication Remove structural and cultural barriers to services Track procedures, interventions and outcomes Collaborate with providers to provide culturally sensitive care based on knowledge of p atient community and culture Facilitate local collaboratio ns to expand and improve services and care Assist in obtaining tribal and IRM approvals Collect community data as appropriate Create a friendly healthcare environment Serve as local resource when patient s return home from distant treatment Note. Adapted f rom Krebs et al., 2013; Ref e rences : Braun et al., 2012; Madore 2012; Petereit et al., 2008; Wells et al., 2008 Additionally, t he P atient Navigation Research Program (PNRP) was a nine site initiative by the N ation al Cancer Institute ( NCI ) to design implem ent and evaluate a generalizable p atient navigation program that targets vulnerable populations The PNRP developed a working definition of p atient navigation and the associated metrics to help assess the outcomes and the process of navigation in a vari ety of diverse sites while comparing them with a concurrent control groups (Freund, Battaglia, Calhoun, Dudley, 2008) In conjunction with these assessments the primary outcomes for the patient Navigation Research Prog ram (PNRP) with the goal of overcoming barriers to quality care were: 1) time to diagnostic resolution 2) time to initiation of cancer treatment 3)

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51 p atient satisfaction with care; and 4) cost effectiveness for breast cervical colon/rectum and/ pros tate cancer N ation al Cancer Institute PNRP 2008 (Freund et al., 2008). The primary outcomes of the PNRP study describe d program desired outcomes allude d to the processes that Navigator s are typically charged with and included the goals that Patient Navigator s have in addressing barriers to p atient quality care as a part of their professional roles 2008 (Freund et al., 2008). Navigator s to desired model s of navigation The Canadian Breast Cancer Research Init iative (2002) cites three models of navigation : 1) Active Coordination 2) Facilitating and 3) Shared and/Tacit navigation These models help to clarify a Navigator (or combination thereof ) are used In the Active Coordination model the Navigator primary focus is on detailed activities such as working directly with a p atient physicians and making appointments Using the Facilitation Model the Navigator focuses on working to empower th e p atient while acting as a consultant or resource The Shared Model involves focusing on the sharing of functions across a team; this team would consist of professionals and individuals ( Health Canada, 2002a; Health Canada, Canadian Breast Cancer Researc h Initiative 2002 b ) However these service focused definitions of p atient navigation and primary outcomes and the further alignment of these metrics with a Navigator may have their limitations These definitions lack specificity b ecause of the wide variety of individuals who also help to coordinate p atient care assist with administrative appointments and can provide cancer education and/or emotional support (Bickell & Young 2001) These individuals range from physicians advanc e practice nurses and

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52 case managers within a clinic ( Health Canada, Canadian Breast Cancer Research Initiative, 2002b ; Engelstad Stewart, Nguyen, Bedeian, Rubin, Pasick, & Hiatt 200 1 ) ; while in a community setting they may be lay or peer advisors couns elors community health workers community health advisors as well as promotoras de salud all of wh om may provide all element s of navigation or navigation like services ( Dohan & Schrag 2005) For example in a community setting a navigation program typically utilizes lay or peer navigation (Steinberg 2006 ; Turner et al 2007 ) which, in turn, is provided by non clinicians who have experience with and extensive knowledge of the healthcare system These Navigator s are generally less costly and can be a better fit if the Navigator clinical and more administrative Administrative in this regard refers to familiarity with community resources and relevant cultural issues as we ll as administrative skills such as data management ( Gilbert et al 2010) Conversely in a clinical setting clinicians may act as Patient Navigator s The choice to use clinic or community based Navigator s varies according to the needs of the program According to Gilbert et al. (2010) this may depend on the needs of the p atient those p atient s who require a more in depth and/or clinical intervention physical or psychosocial symptoms may require a healthcare professi p. 234) Thus, N urse Patient Navigator s dif fer from L ay Patient Navigator s A Lay Health Worker (LHW) has been described as an individual, voluntary or paid, who carries out functions related to health care delivery is trained in alignment of

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53 the context of the intervention as well as has no paraprofessio nal training, or degreed tertiary education in a health related field or in the specific focus area of t he intervention ( Lewin Babigumira Bosch Capblanch Aja Van Wyk Glenton ... & Daniels (2006) Mor eover, LHW are usually peer s such as individuals who have a similar social context that is perceived to be comparable, for example, ethnically, culturally, linguistically, and s focus population (Eng, Parker & Harlan, 1997) A N ur s e Patient Navigator in comparison possesses a through comprehensive knowledge base of t h e pat hophysi ology of cancer, various treatment moda lities, cancer disease progression, and systems management (Pedersen & Hack, 2011 ). F urthermore navigation may also be provided by a variety of individuals that compose a team such as healthcare professionals laypersons or clerical staff Examples of teams mi ght include Patient Navigator s who work on a team with program directors (Varga s Ryan, Jackson, Rodriguez, & Freeman 2008) teams with registered nurses working with social workers (Tingen, Weinrich, Heydt, Boyd, & Weinrich 1998) and L ay Navigator s as coache s ( Gilbert, Green, Lankshear, Hughes, Burkoski, & Sawka 2011) Navigat or s professional roles can therefore be defined by any of the above variables including Navigator s who are based in a community setting or a clinical setting Navigator s p ractice As noted above in the P atient Navigation Research Program (PNRP) study Navigator s work in a variety of professional realms These realms translate to a complex practice According to the PNRP study a Navigator involve several areas of focus For example Navigator s can work to provide health literacy and t rain individual p atient s to advocate for themselves in the increasingly

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54 complex healthcare network system They can also be trained to provide emotional support in the stressful period that accompanies a cancer diagnosis As well Navigator s can serve to identify systems issues that may serve as additional barriers to individual p atient s thus working toward reducing the complexity that frequently accompanies the approach to care for cancer p atient s the nature of which tends toward being multidisciplinar y (Freund et al., 2008) Parker et al. (2010), in their study to develop a structured protocol for observing Patient Navigator s which described and characterized various specific activities related to Navigator goals, drew on research in various care se ttings Using the definition of Navigator Navigator s do things for p atient s by working with p atient s and other actors in both the social network of the organization itself and the communit y in which the organization resides (p.518). Accordi ng to Parker et al. (2010), c ategories for tasks with p atient s include : Navigating tasks consist of identifying and mitigating barrier with p atient s. They include telling (explaining when and where biopsy will be done, describing what it will be like); i nquiring (asking about barriers to attending the appointment, exploring the p atient (listening to fears about treatment); and coaching (discussing questions that need to be asked at next appointment and how to ask them). Facilitatin g tasks are performed for a specific p atient They include finding (locating current p atient s and ensuring that they will come to appointments); coordinating team communication (ensuring the entire care team is aware of the next steps); integrating inform ation (ensuring that different types of p atient data are documented and shared as needed); and seeking collaboration (enlisting other providers in addressing the p atient Maintaining systems tasks support all p atient s. They include identifying po tential p atient s (reviewing lab results to note p atient s who need follow up); building networks and referral routines (meeting with clinicians to explain Navigator role and discuss referral criteria); and reviewing cases (checking on ticklers and open issu es). Documenting activities and reviewing information constitute another major Navigator task. They include recording Navigator actions (recording steps taken with or on behalf of the p atient in the p atient gation file); handling test results (retrieving and entering p atient data from labs, radiology, or other sources); and processing other necessary information (recording information or activities relevant to Navigator role). Other activities are those apparently unrela ted to navigation (p. 523 524 ).

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55 The authors defined Navigator actions as those which can be characterized in organizational enti ties with whom the Navigator interacts; the other characterizes the types of tasks carried out by the Navigator s in support of their p atient (See also Appendix B Advantages and Disadva ntages of W here Navigator s W ork, Appendix K Tasks of Cancer Patient Navigator s ) Cancer Continuum The ca ncer continuum has been described as the medical and non medical trajectory used to capture the experience of cancer that includes the stages of cancer prevention detection diagnosis treatment and survivorship (NCI n d ) Although this continuum is g enerally referred to as linear in reality it is the various phases that a person moves through to prevent and control cancer the process of which may overlap and repeat aspects (Braun et al 2012) The adaptation of the cancer continuum used in this st udy is from Braun et al (2012) and the phases are education and outreach screening diagnosis and staging treatment survivorship and end of life A Native Patient Navigator cancer continuum Native P atient Navigat ion: History Effective p atient navigation with cultural groups is often dependent upon if the intervention is deemed to culturally appropriate (Edwards et al. 2010) Thus culturally relevant and community sensitive Patient Navigator s hold potential fo r use in AI/AN populations and other ethno linguistic populations in the fight against cancer disparities (Eschiti Burhansstipanov & Watanabe Galloway 2012) It is the intrin sic flexibility in the Freeman P atient Navigation M odel and its ability to be adapted to become culturally

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56 relevant that has held appeal for many programs that deal with cancer in underserved racial and ethnic populations Underserved and racial and ethnic populations have a need for a Navigator from the local community who is fa miliar with local customs, cultu re and health care systems. D isparities in death rates as well as proxy measures of survival when compared with Whites have emphasized the need for enhanced access to and increased utilization of quality health services for cancer screening, diagnosis, and treatment phases along the cancer continuum (White et al., 2014 ). This forms the basis for the rationale of cultural Native Patient Navigators This rationale for cultural Native Patient Navigators in Indian Country and by extension other communities who have similar historical, social and politic al experiences was addressed in the article ultural Native Patient Navigators in Indian Country (Harjo, Burhannstipanov & Lindstrom, 2014 ) According to the aut hors, a lthough there are numerous reasons for these types of Navigator s some of the most important would include i ssues of trust due to prior history of mistreatment and its impact on health care access, such as AI s experience based distrust of researche rs and health care systems (Burhansst ipanov, Bemis & Petereit, 2007) and the effect of histo rical trauma as a cumulative, collective phenomena manifesting itself emotionally and psychologically in cultural groups (Brave H eart, 1995, 1999, 2003 ; Brave Heart Jordan, 1996 ) In addition, c ommunication is unique to culturally specific tribal p opulations, such as Muscogee (Creek) N ation versus Dakota N ation as well as c ultural pe rceptions tend to be common to a specific tribal nation, b and, or c lan rather than common across all groups Likewise, logistical issues are unique to Indian H ealth Service and Contract

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57 Health Services. In addition, there are differences on views on the incorporation of s pirituality with healing, such as Traditional Indian medicine ve rsus modern Western medicine and/or complementary m edicines unique to specific tribal Nations or g eographic regions (Harjo, Burhansstipanov & Lindstrom, 2014) From these needs and others Native Patient Navigators were first initiated (Harjo, Burhanssti panov & Lindstrom, 2014). The Wanae Coast Cancer Control Project modified the Freeman Navigator being asked ) resulting in a more culturally r elevant and community sensitive Navigator model for their population (Banner Decambra, Enos, Gotay, Hammond, Hedlund, ... & Tsark, 1995 ) Similar to the Hawaiians American Indian and Alaska Native (AI/AN) have tailored p atient navigation for their popul ation AI/AN programs have used and found successful an adaptation of the Freeman Patient Navigator model for navigating Native Americans in their communities Native patient n avigation using culturally tailored navigation and a community sensitive fo rmat has proven a successful practice for the AI/AN community The term Native Patient Navigator is presently used to describe a Native American who helps an individual in a Native American community in navigating the increasingly complex system of health care along the cancer continuum (Eschiti, Burhansstipanov, & Watanabe Galloway, 2012 p. 75). The beginnings of the adaption of a culturally relevant P atient N avigator model ss through Awareness (NAWWA) project in the 1990s

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58 through Awareness (NAWWA) project which took place in Denver and Los Angeles modified the Patient Navigator model to be more culturally compatible to Native Americans living in their communities The adaption of the Navigator model utilized Navigator In the NAWWA project Navigator s were trained to provide emotional support to other Native American women in the recruitment cancer screening and follow up phases of their cancer journey The predominant difference of the NAWWA project from other programs in place at the time was that the NAWWA program initially focused and eventually became more involved with recruitment fo r initial screening Other existing programs were initiated at the time a p atient received the results of an abnormal cancer screening test Although the NAWWA project put in place a wide ranging variety of recruitment strategies it was the personal app p atient s (Burhansstipanov et al 1998) (Se e Appendix C for Native Sister e xample P ossible Q uestions for C ancer P atient s to A sk their Doctor) Since the NAWWA project several published studies ha ve focused on navigation for cancer care for Native Americans These include interventions proven successful in several parts of the country The Native American Cancer Research Corporation rs Navigator s who are Native Americans Navig ator s for Indian Health employed Native Navigator s from the Comanche N ation Other studies and initiatives have been done in New Mexico (Community Health English et al 2006 ); in Montana (La y Health Advisors, Christopher et al 2008 ) ; in South Dakota ( Walking Forward Program, Petereit et al 2005 2008; Rogers & Petereit 2005); in Washington State (

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59 Warren Mears & Ramsey Northwest Tribal Cancer Navigation Program 2007 fun ded by the P atient Navigation Research Progra m, NCI n.d. ) ; in Colquet Minnesota ( Fond du Lac Cancer Program ) ; in Portland, Oregon ( Native American Rehabilitation Association of the Northwest, Inc. ) ; in California and Colorado ( Burhansstipanov Native Sist ers, 2000; Burhansstipanov et al., 1998 2010; Burhansstipanov Krebs Grass Wanliss & Saslow 2005; Dignan Burhansstipanov, Hariton, Harjo, Rattler, Lee, & Mason 2005) There have also been partnerships: Native Navigator s and the Cancer Continuum (NNAC), a community based participatory research (CBPR) partnership by the N ation al Institute of Minority Health D isparities (2008 2014); NNAC partners Native Ameri can Cancer Research Corporation of Colorado (NACR); Intertribal Counci l of Michigan, Incorpo rated (ITCMI); Rapid City Regional Hospital in S outh D akota (RCRH); Great outh D akota (GPTCH B); and Muscogee (Creek) N ation in Oklahoma (Harjo, Burhansstipanov & Lindstrom, 2014). Native p atient n avigation has a su ccess record specifically for navigation in areas such as screening ( Burhansstipanov 2000; Dignan et al 2005; English et al 2006 ) rescreening (Burhansstipanov et al 2010) addressing perceived barriers (Burhansstipanov 1998) facilitating screenin g (Burhansstipanov 1998) and recruiting (Burhansstipanov 2000) Furthermore Native Patient Navigators have been shown to increase screening for cervical cancer and use of Pap tests as well as assist in increasing comfort in discussing cervical cancer awareness and the sensitive issues surrounding cancer (Burhansstipanov 2010; Christopher Watts McCormick & Young 2008) There exist some limitations of these early Native Patient Navigator studies For example some of these navigation studies were limited by issues such as self report ing of

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60 outcome measures the lack of randomization and small sample size Nonetheless Native patient n avigation continues to prove a useful choice for indigenou s populations and confidence in this approach continues to grow (Eschiti Burhansstipanov & Watanabe Galloway 2012) However, g iven this information, Native patient n avigation can be highly successful Burhansstipanov et al ( 2014) in their NNAC community based participator research study (CBPR) using lay N ative Patient Navigators ( Navigator s do not work in a clinical setting) had pronounced success among their five sites with AI/AN communities Navigator s had a high success in referring participants to screening implementing education sessions for the com munity and helping to navigate the cancer diagnosis and screening processes when appropriate The study was highly positive: The intervention was decidedly efficacious ; 1 964 community participants took part Participants were primarily American Indians (83 %) female (70 %) and between 18 and 95 years of age The education programs increased community knowledge by 28 % facilitated referral to local services and through site specific navigation services improved access to care for 77 participants dia gnosed with cancer during the intervention Approximately 90 % of participants evaluated workshop content as useful and 92 3 % said they would recommend the workshop to others The intervention successfully increased community knowledge and rais ed the visibility of the NPNs in all five sites ( Burhansstipanov, Krebs, &, Dignan et al., 2014 p 420) In an effort to understand further the cancer care and services for American Indian communities of the Northwest, the Northwest Tribal Cancer Navigator Project (NTCNP) was conducted by the Northwest Tribal E pidemiology Center (EpiCenter). NTCNP was one of nine projects funded nationally by the N ation al Cancer Institute (NCI) through the Center to Reduce Cancer Health Disparities. NTCNP a five year com munity based project beginning in 2005, specifically targeted Native communities throughout Idaho, Oregon, and Washington The long term goal of NTCNP was to ensure AI/AN p atient s have access to the same cancer services and care as other groups. Eight tr ibes were

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61 employment of four tribes for intervention and four tribes for comparison. Intervention Navigator o ordinated p atient cancer care and helped p atient s in overcoming barriers to an appropriate cancer diagnosis and treatment. Alternatively, the comparison tribes, documented their cance r p atient s but Navigator s Data for the NTCNP projec t was collected on all p atient s with abnormal screenings in the diagnosis of breast, colorectal, prostate, and cervical cancer (Northwest Tribal Cance r Navigator Project, Northwest Por tland Area Indian Health Board) ( http://www.npaihb.org/epicenter/project/northwest_tribal_cancer_ Navigator _project ) The following are some critical l essons learned from Navigator Project Northwest Tribal Cancer Navigation Proje ct (NTCNP) : Balance research and community needs; focus group and key informant interviews would be more suitable for reliable data collection Using the name cancer in the project caused confusion i.e., is it a service for cancer p atient s, who is eligible, what the program could offer to participants without a diagnosis RN [Registered Nurses] trained Navigator s Navigator s bring very different, complementary skills to the job RN level Navigator s were better able to communicate with providers and were found more comfortable providing p atient education and answering participant questions of a medical nature Community Navigator s were excellent at recruitment and outreach events Nurses tended to struggle with the unstructured nature of t he job Recommend ed against managing from a central location to make better use of Navigator Shared Burden lessens burnout teams would combat burnout; Navigator s struggled with handling full caseloads recruitment, outreach events and networking all at once, this was compounded by being geographically separated from other Navigator s creating limited regional cancer coalition meetings and collaborative outreach e vents gave Navigator s a chance to meet and break out of their routines, after these meetings Navigator s reported

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62 feeling refreshed ;opportunities to meet sharing connection should be built into the overall budget Participants should enroll early to have th e greatest impact on time to diagnosis Care should be taken to monitor case load, Navigator s reported feeling overburdened after 25 participants Community outreach was an important part of Navigator (Northwest Tribal Cancer Navig ator Program (NTCNP), Final Report (2012), Warren Mears et al., 2012 p p 72 75 ). NTCNP was an important pr oject in the history of Native p atient n avi g ation and in the development and evolution of Native Navigator professional roles a topic which we e xplore more in depth next. Native patient n avigator professional r oles A review of the literature suggests that a primary role for a Patient Navigator is the ability to coordinate care and/or encourage p atient s toward further care (Robinson White Conroy & Slavish 2010). However it is also known that the roles of a Navigator vary tremendously depending on the training licensure practice setting as well as the phase of the cancer continuum that the Patient Navigator program focuses. For example depe nding on the needs of the community and desired program outcomes different p atient n avigator programs focus on screening treatment or survivorship (Wells, Battaglia Dudley Garcia, Greene, Calhoun, ... & Raich 2008). In the NAWWA program, the primary task of the Native Patient Navigator is to assist the p atient throughout the recruitment, screening and follow up aspects of the program (Burhansstipanov et al., 1998). These objectives point out the varying tasks and the resulting roles these Navigator s fulfill in their AI/AN communities today. These roles include recruitment, advocacy, education, coordination, counseling, referral, follow up and support within a culturally responsive framework

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63 Braun et al in their 2012 article on Community Network Pro gram (CNP) C ancer Patient Navigator (PN) programs review ed five programs Navigator t asks were reviewed with regards to the cancer continuum. These task s were organized by their increased potential to make cancer services more understandable, available, a ccessible, affordable, appropriate and lastly, accountable. The main purpose of the ir study was to describe the tasks of a C ancer Patient Navigator This Patient Navigator (PN) according to Braun et al. (2012) is, a n individual trained to help identif y and resolve real and perce ived barriers to care enab l ing p atient s to adhere to care recommendations and thus, improve their p atient outco mes (Freeman, 2006; Freund, 2011; Freund, Battaglia, Calhoun et al., 2008) 399). Thus, the role of a Patient N avigator helps achieve better health outcomes The authors found that a lthough Navigator s performed similar tasks across al l five programs, however, there were important differences that reflect e d community culture, program setting, context and sources of funding. A key perspective to Navigator roles can be summarized under care strategies and objectives: Navigator Quality of Care Strategies and O bjecti ves : Strat e gy (Understandable ) Objective for specific community of focus To provide education to imp rove knowledge, attitudes, and practices regarding cancer Strategy (Available) To map out the location of and identify contact individuals for cancer services and to advocate for services to fill service gaps Strategy (Accessible) To remove structural an d cultural barriers to services, assuring that what is available can be accessed Strategy (Affordable) To assure that individuals are enrolled in insurance and free and low cost programs for which they are eligible so that cost is not a barrier. Strategy (Appropriate) T o establish culturally comp e tent services and staff at facilities and programs utilized by community members Strategy (Accountable) To assure the sustainability, quality cultural appropriateness, and responsiveness of the cancer services to and for the population(s) of focus

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64 (A dapted from table on Navigator Quality of Care Strategies and Object ives from Braun et al., 2012, p.401) An important topic within these Navigator professional roles is the subject of training. Navigator training for these roles can be broad and extensive covering a variety of issues as illustrated by the following table of Navigator training topics from the Native Navigator s and the Cancer Continuum (NNACC) pr ogram ( Krebs et al., 2013): Table 2.3 : Navigation In S ervice Training Topics Overview of the NNACC Study Topic (Krebs,2013) Approximate Time NIH Protection of Human Subjects ( online training ) 3 Confidentiality/HIPAA 9 Overview of Navigation Programs 3 Audience Response System (ARS) Evaluation 3 Presenta tion Skills 3 Online Evaluation Program 6 Health Eating 6 Energy Balance 6 Reducing Exposure to Environmental Contamination 3 Cancer Basics Series 100 Overview; 101 Diagnosis and Staging; 102 Cancer Treatments; 103 Side Effects 12 Get on the Path series: Breast Health, Cervix Health, Colon Health, Lung Health, Prostate Health (6 hours each) 30 Native American Cancer Education for Survivors (NACES) 3 Clinical Trails Education for Native Americans (CTENA) 3 Survivors Support Circles 3 Cancer Surv ivorship/Survivorship Care Plans 3 Palliative Care for the Native Cancer patient 3 Supporting the family caregiver 3 Advanced directives, wills 3 Hospice Care (benefits, limitations, choices) 3 Navigating the Local Healthcare System 3 Safety Working out in the Community/Rural Setting 3 Assessing Community Resources/Creating Resources Binder 3 Communication skills 5 Required topics 125 hours Additional trainings (national seminars, and workshops), topics requested by Navigator s or Staff; refresher s 75 hours Total NPN education and training 200 hours Note. Adapted from Krebs et al., 2013, p. 124 O ver the years as training topics have increased Navigator training has expanded greatly. I n the Braun et al. ( 2012 ) study mentioned the training comp onents of the five CNP (Community Network Program) navigation programs was also included in the

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65 survey Although, programs differed in the number of training hours and training formats, all training programs covered basic competencies; these included the role of the Navigator identifying barriers, locating resources to overcome barriers, listening, com munication and confidentiality. The authors stress that training programs would also cover basic information on cancer and cancer prevention as well as th e intervention on which the program focused. Two programs NACR and PATH for women also included training on survivorship, end of life care with peer education and role playing to assist Navigator s in advancing their skills in assessment, negotiation and c are planning. These two programs moreover, provided training in advocacy, program planning, evaluation, Community Based Participatory Research (CBPR), health education materials and their development, as well as establishing and leading survivor groups. T raining for Navigator s generally was more extensive when covering more phases of the cancer continuum, as described in the following table: Table 2.4 : O verview of required qualifications of Navigator s training funding and evaluation of five Community N etwork Program ( CNP ) Navigation P rograms (from Braun et al., 2012)

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66 (from Braun et al., 2012) + Note. Adapted from Braun et al., 201 2, p. 403 Native patient n avigator p ractice The NAWWA project with their Native Sisters project modified the Navigator communities The NAWWA program and its Native Sisters were the beginning model for Native p atient n avigation practice The NAWWA project employed a broad spectrum of recruitment strategies but it was the p ersonal approach of the Native S isters that was considered the most effective aspect of th e program (Burhansstipanov, Bad Wound, Ca pelouto, Goldfarb, Harjo, Hatathlie, ... & White 1998) This personal touch hallmarks the practice of these Navigator s because they give a sense of something and somebody familiar; in both culture and community senses; someone who knows from personal ex perience the concerns of the client. Present day Native Patient Navigators practice is similar to the or iginal model of isters Native Patient Navigators take on leadership roles within

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67 their community and recruit AI/AN for cancer scree ning when test results come back whether normal or abnormal, or if treatment needs follow through These Navigator s perform the objectives of the NAWWA program within their practice and within a circular model similar to that from the NAWWA program which begins with in take and health education, continues on to screenings to follow up screenings to follow up after abnormal tests and support to again promotion strategies (Burhansstipanov et al., 1998) A uniqueness reg arding the practice of Native Patient Navigators today a practice which has evolved since the NAWWA project is the incorporation of flexibility and collabo ration throughout their work Native S isters adapted the program to fit the needs of their communi ty with regards to being more comprehensive and culturally respectful (Burhansstipanov et al., 1998) This adaption was reflected in the professional duties of Native Sisters from the NAWWA program As Native p atient n avigation has advanced t his adaption is comprehensively r epresented in the duties of a more contemporary program, Native Navigator s and the Cancer Continuum (NNAC). NNAC was a Navigator program based in the principles of Community Based Participatory Research (CBPR). Originally, t he p rogram included several organizations who were federally recognized tribes or were well known for their histories of success with AI/AN communities : Native American C ancer Research Corporation NACR (Colorado) ; Intertribal Council of Michigan, Incorporated, (ITC MI) (Michigan) ; Rapid City Regional Hospital (RCRH ) (South Dakota) in collaboration with s Health Board, (GPTCHB) (S outh D akota ) Later, a nother program was added, the Muscogee (Creek) N ation

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68 (MCN) ( O klahoma) in 2010 The study utilized lay Native Patient Navigators not based in a clinical setting. These Navigator s proved successful in referring p atient s to screening, in implementing educational sessions and in navigating, if necessary, a cancer dia gnosis and subsequent treatment (Harjo, Burh ansstipanov & Lindstrom, 2014). Below are a many of their duties as evaluated through the NNACC program partnership : Table 2.5 : Native Navigator s and the Cancer Continuum ( NNACC ) Navigation Activities /Tasks fro m O n line Evaluation Program Category Task Screening Help finding a healthcare provider/clinic Help setting up medical appointment Reminder call (or visit) for appointment Accompany p atient to appointment Help with paperwork for IHS Help with paperwork fo r Medicaid Help with paperwork for Medicare Help with paperwork for St/Foundation program Help with paperwork for Private Insurance Help with paperwork for VA Help with transportation to screening Help w/child/elder supervision during apt Reminder Call M edical Appointment Diagnosis Help following up the positive screening results to make an appointment for diagnostic test Help getting a second opinion Help p atient and family to better understand prognosis and treatment options Help with transportation fo r diagnostic apt Help w/ Lodging Followup Accompany p atient to diagnostic appt test(s) Help w/ Setting Medical Appointment Followup Help w/ Finding a doc or other Health Professional Resource Prevention Help with improving diet Help with weight control Help with physical activity Help clean up the environment Help with tobacco prevention Help with tobacco Cessation Palliation Help with cancer pain resources Help with nutrition resources Help w/ professional counseling support services Help with info abo ut clinical trials opportunities Help obtaining recommended cancer meds Help with cancer rehabilitation Help with tobacco Cessation End of Life Help w/ Advance Directives Resources Help w/ End of Life / Hospice Resources Help with final will Help with tr aditional Indian ceremonies

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69 Category Task Help with transportation to/from Hospice setting Help with nutrition supplements for EOL/Hospice Help with daily living Quality of Life/Recovery Help with Cancer Rehabilitation Help with findi ng cancer support info programs Help with Peer Support Resources Help with Quality of Life and supportive care Resource Help with Complementary and Alternative Treat Help with Traditional Indian Medical Healers/Man/Woman Help with Employment issues Help wi th Fertility issues Help with Financial Assistance resources Help with finding a healthcare provider Help with legal assistance and information Help with nutrition resources Help with professional counseling supp ort services Help with transportation for follow up services (screenings for other diseases, other cancers) Help with addressing p atient ( fatigue skin reactions, amputations) Help with cultural issues related to re cov er ing from can cer experiences (temporary surrender of sacred pipe during hair loss side effect from treatments) Help with information about clinical trials QOL / supportive care opportunities Help with daily living issues Help obtaining recommended canc er medications Note. Excerpt From: Online Evaluation: Navigation Report from N ACR Database Native American Cancer Research Cancer Corporation (NACR), Intertribal Council of Michigan, Rapid City Regional Ho sp rd, Muscogee (Creek) N ation Navigator s and the Cancer Continuum (NNACC) Presently a Native Patient Navigator may involve all these duties and elements Importantly this includes equal collaboration with Native traditional medicine as well as Western medi repared wit h a p atient for the D octor in A ppendix C ) Current Native Patient Navigators practice is aligned with the original NAWWA Native S isters; their one on one involvement along wi th their gentleness and their sincerity (Burhansstipanov et al 1998) (See also Tasks for Cancer Patient Navigator s Appendix K) These elements for a Native Patient Navigator successful from the beginning For the p a tient s navigated through the NAWWA

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70 program 90% had follow rescreening This statistic contrasts to women in a C enters for Disease Control (C DC ) database who used state supported screening services and we re rescreened only 50% of the time at intervals recommended by their physicians Even taking into account that women in the CDC projects may have had their eligibility for state supported screening services terminated this 90% improvement through the NAW WA program is striking (Burhansstipanov et al 1998) Similarly to the original NAWWA model it is through these features that a Native Patient Navigator The following section provides a description of the particular ch aracteristics of AI/AN identity and culture that Native Patient Navigators address in comprehensive and respectful ways AI / AN Identity and Culture Influences The population of Native Americans today consists of a highly heterogeneous grou p. There are ap proximately 5 2 million AI/AN who make up about 1 7 % of the US P opulation (BIA 2014 ) These individuals represent more than 56 5 federally recognized tribes and over 20 0 state recognized tribes ( BIA, 2014; N ation al Co nference of State Legislatures, NC SL, 2014 ). These tribes in turn, represent extensive diversity many with their own distinct languages In this paper I use the terms American Indian/Alaska Native and Native American to represent the joint populations of American Indians and Alaska N atives (AI/AN) This aligns with the US Census Bureau defintion of AI/AN which refers to AI/AN individuals as having origins in any of the original peoples of the Americas and who continue to maintain their tribal affiliation or community attachment In cluded in

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71 this definition for this paper are those individuals who self identity their race as American Indian or Alaska Native ( Grieco & Cassidy 2000 ) Community in this regard, people with diverse characteristics who are linked by social ties share common perspectives and engage in joint action in geo graphical locations or settings ( MacQueen, 2001 p. 1 929 ) Consequently, it seems that American Indian i dentity is primarily a social construct that depends on the identification with in a Native American community A ccording to Haozous, Strickland, Palacios & Solomon (2014) as detailed in the following AI/AN complex identity unfolded with the in fluences of distinct intertwining forces. AI/AN tribal identification is extraordinarily complex, based The conseq uence of these proces ses and the mixing of history has led to differing social constructs of AI/AN at various levels. Important to this matter is Tribes, Pueblos and Native Nations can be differentially recognized at the state or the f ederal level, or not recogn ized at all by either entity. Also, f urther complicating the matter, individuals can self identify as AI/AN. Also according to Haozous et al. (2014) o u ndersta nd ing of the history and atrocities against AI/AN people starting in 1492, clarifies the intense complexities with these identities and the overall health of the population (Langer, 2005; Palacios & Portillo, 2009). These original people have contin ually fought for their survival; thus affecting their overall present day health, given t he cultural trauma experienced first hand through genocide, warfare, disease, starvation, removal from traditional homelands to reservations and distant land allotments, as well as imprisonment, forced sterilization

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72 and aggressive coercive assimilation met hods such as boarding schools, and relocation programs to urban areas (Adam, 1995; Smith, 2005; Thornton, 1987 ). Haozous et al. (2014) note that a s imperialistic forces continued, Native Americans were driven from their traditional homelands. During th is process, some tribes were offered treaty agreements such as land parcels located hundreds of miles away from their native land, in lieu of their original land base. These were government to government agreements, treating the AI/AN as members of forei gn Nations Most of Nonetheless, p art of the treaty agreements included access to education, as well as health care. Tribes who signed treaties were recognized by the federal government and its entities. Tribes who did not sign, over time, tended not to be federally recognized and were left as a disenfranchised state, isolated both socially and politically (Koenig & Stein, 2008; Schmidt, 2011). A ccording to the authors, Haozous et al. (2014), t hese treaties of to the development of Indian reservations by the US federal government. Consequently, the AI/AN were forced by the federal government to be enculturated to adopt Western values of farming and land ownership. To accomplish this goal, the D awes Act of 1887 ( and General Allotment Act) allowed the US federal government to parcel out land to Native, male heads of household. During this time, 1887 1934 established for the legal status of Native identity regarding land allot ments (Schmidt, 2011). Nonetheless, this blood quantum qualification of one quarter American Indian open to homesteaders and others for unchecked purchasing (Koenig & Ste in, 2008).

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73 Although the land allotment period ended, the standard of blood quantum remained in use these blood quantum criteria for tribal enrollment (Schmidt, 2011). Give n this history of tribal enrollment, many Native s have their identity mingled with blood quantum. For example, some tribes have no blood quantum requirement, while others have various levels of blood quantum. Specifically, the Cherokee N ation has no bloo d quantum requirement, relying instead on direct lineage (Sturm, 2002 ) ; whereas the Northern Ute require 5/8 blood quantum. This identity could also be aligned or not with patrilineal and matrilineal bloodlines for Native identity, respecting some of the traditional ways of seeing identity (Haozous et al., 2014) As Schmidt (2011) explained, Native identity has been expropriated with the landing of Europeans in North America: Europeans not only expropriated land and resources, but also Indian identity. Over the next few centuries, the issue of identity shifted from indigenous social cultural territorial based definitions to legal and frequently race based definitions arbitrarily articulated in congressional laws, administrative regulations, or court case s (p. 1). In addition, not only did the Native people have their own identity to begin with but they also had their own form s of traditional government s However, the US federal government support ed blood quantum identification which could be supporte d by a Certificate of Indian Blood; but this definition of tribal identity caused some individuals to receive Bur eau of Indian Affairs (BIA) benefits, but not necessarily tribal enrollment. For example, if an individual has 1/4 of a combination of feder ally recognized tribes in blood quantum, then s/he may be eligible to receive federal benefits, but not necessarily be accepted into the conceptualization of identity for those tribes. In addition some tribes define identity through patrilineal or matril ineal ideas Nonetheless,

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74 with the 1934 Reorganization Act (Howard Wheeler Act), tribes were encouraged to implement their own governments for self determination (Schmidt, 2011). T his act allowed tribe s to reorganize, define rights, form corporations, an d establish systems of credit and priorities for asking preferential employment with the Bureau of Indian Affairs (BIA) (Haozous et al., 2014) They also got help organizing and supporting their governments and receiving federally supported education and technical training (Schmidt, 2011). Diversity w ithin Native Americans live in a wide variety of settings There is heterogeneity among Native American tribes and communities In addition to the more than 565 federally recognized tribes as mentioned there are tribes that are not federally recognized and tribes that are in the process of seeking federal recognition (a very expensive financial and legal proposition) ; as well there are tribes that have only state recognition Natives live in urban cit ies and remote rural locations The greater than 565 federally recognized tribes have homelands in a variety of environments from southwest desert and rural locations to the mid western plains or the arctic tundra (BIA, 2014) These tribal communities d iffer in size location as well as cultural practices shared history and language The degree of acculturation and therefore AI/AN identity varies greatly from urban to rural and reservation living and typically exists on a continuum The term this case the American Indian person) accepts and adheres to both majority (White/Euro Berryhill Paapke & Robbins 1995 p.

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75 76) However although acculturation plays a significant role in the Native American identity there still tends to be a high degree of homogeneity in the form of a certain degree of shared common core values and generally agreed upon cultural meaning s and standards that exist for tribal traditional Native Americans (DuBray 1985; Heinrich Corbine & Thomas 1990; Honigmann 1961; Oswalt 1988; Peregoy 1993; Sue & Sue 1990) D espite differences Native American tribes and tribal communities share s imilar experiences socio political histories and worldviews ( Durie 2004 ; Hill Lau Wing & Sue 2010 ) Presently because of the lack of economic opportu nities on some reservations many Native Americans today do not live on reservations Since World War II many AI/AN have relocated from rural reservations and communities to urban center s There that makes up ov er half of AI/AN living in the United States (Urban Indian Health Institute 2008) Native Americans are residing in rural areas urban areas and depending on the time of the year as well as community/ tribal commitments sometimes at both Rural A si gnificant proporti on of the AI/AN population is isolated geographically and live rurally Many American Indians reside on reservations or in communities that are located in isolation from urban communities and their inherent benefits (Rural Minority and M ulticultural Health C ommittee 2006) Whether AI/AN identity is easier or harder to maintain in a rural environment will depend on if there is a

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76 significant tribal grou p. AI/AN identity is often defined by membership and participation in the tribal group (Haozous Strickland Palacios & Solomon 2014) However although cultural identity may sometimes be easier to maintain within a significant rural tribal community most rural reservations and tribal communities struggle economically and have issues of isolation lack of support and other factors that continue to affect these rural AI/AN communities and consequently the health of its individuals Moreover Galambos (2005) found that people who lived in rural areas are at a disad vantage; they are more likely not to have adequate health insurance coverage and can be limited in medical services due to a minimal number of local specialists from which they can choose their healthcare Urban Presently although not quick to be recognized there are subs tantial AI/AN populations in urban centers Urban Indian communities are intertribal and contrary to public perception, represent a large portion of Natives in North America. For example, even back in 2008 t rban Native population made up over 50% of all AI/AN living within the United States (Urban Indian Health Institute 2008) The n umber now is estimated that seven out of ten American Indians and Alaskan Natives live in metropolitan areas ( New York Times April 13, 2013). However, p ove rty is rampant in urban areas for American Indians. Denver, Phoenix and Tucson have poverty rates for Natives approaching 30 percent. Other large cities such as Chicago, Oklahoma City, H o uston and New York, the last where more Indians live than any other city the poverty approaches 25 percent ( New York Times April 13, 2013).

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77 Several sources note that the movement for American Indians from tribal communities and reservations to urban American cities began in small numbers well before the official star t of the Relocation Program enforced by The Indian Relocation Act (also known as Public Law 959 or the Adult Vocational Training Program) in the early part of the 1950s (LaGrand 2002; Officer 1971; Tyler 1973; Weibel Orlando 1999) However it is gen erally agreed that the permanent residence of American Indians in urban areas is primarily the result of forced relocation programs during the 1940s and 1950s Many federally recognized tribal members were taken to large urban areas with promises of resou rces only to be left stranded and isolated without the support of tribal Nations and extended family These unfortunate circumstances resulted in individuals from different tribal Nations the me aning of AI/AN identity ( N ation al Urban Indian Family Coalition 2008; Lobo & Peters 2001) AI/AN identity in an urban area where tribal members may be distant from their families and tribal ties is challenging AI/N identity tends to be defined by m embership and participation within the tribal group or urban collective group (Haozous et al., 2014) identifies as Indian ( N ation al Urban Indian Family Coalition 2008) However there has been an implication that while a person may self identify as Indian the urban Indian community might or might not recognize that person as being Indian This recognition may or may not include knowledge of culture appearance ancestry Indian commu nity participation and other peer judged criteria (Lobo & Peters 2001)

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78 This being the case however AI/AN identity enactment is being recognized Although it was originally thought that urban AI/AN have not maintained their tribal AI/AN identity af ter living in a n urban environment for generations data now suggest that it is quite the opposite Urban Indians have creatively kept and maintained their AI/AN identity despite their urban residence and Native culture is thriving in many urban areas Snipp (1992) relates: The experience of urban American Indians contradicted assimilationist American Indian resistance to assimilating Euro American ways has caused social scientists to rethink expectations for this grou p. Attention has shift ed from the anticipated dissolution of Indian culture toward explanations for the apparent persistence and vitality of cultural traditions in urban environments (Snipp 1992 p. 359) Walters (1999) notes that acculturation is not synonymous with identity. The author explains that contrary to models of assimilation, Native people have survived by being innovative; taking the best of both worlds, integrating them while maintaining and transforming Native cultures with the ultimate aim of buffering against an y negative colonizing processes and therefore internalizing a positive identity (p.163). However, t hese urban AI/AN have their own unique health concerns some of which are detailed below (AI/AN heath issues are explored later in this dissertation : Table 2 .6: AI/AN Urban Health Concerns Lack of access to sufficient health services Few IHS facilities Urban Indian clinics are greatly underfunded Financial support only meets on third of documented health care needs of AI communities (Fox, 1998 ) Facilities do not provide clinical services Medical services contracted To access services on the reservation, need to be a current resident (e.g., having lived on the reservation 6 months) to be eligible for services Distances people have to travel to access IHS clini cs Lack of oncology medical specialists within the IHS system Note. Adapted from: Burhansstipanov, 2000. Reference: Fox YJ. National Indian Health Board Annual Report. Denver, CO: 1998.

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79 Reservation Although American Indian identity exists on a continuu m AI/AN identity is defined by membership and participation in the tribal group (Haozous et al., 2014) AI/AN identity tends to be stronger and more easily maintained on a reservation because of the many elders and tribal people practicing their language religion and tribal life ways Extended family and relatives also strengthen AI/AN identity by reinforcing group and clan first hand Additionally on a reservation there may be more individuals wh o lean towards a tribal traditional identity These traditionalists on tribal land are important when considering AI/AN identity on a reservation or reserve and who are working with individuals as well as the tribe Importantly the framework for worki ng with individuals on a reservation is to keep those interactions within a tribal cultural context which includes acknowledging family as well as clients allowing time for interactions and working within the guidelines of the governing bodies for indiv idual tribal Nations (Haozous Knobf & Brant 2011) These tribal cultural contexts are important in understanding AI/AN identity on tribal lands For example without understanding the cultural context of time to a traditional AI the impersonal and rapid hurried ways of medical relationships can be seen as both intimidating as well as quite insulting to traditional AIs (Hodge Weinmann & Roubideaux 2000) Finally the combination of tribal heritage is an important concern regarding AI/AN identity Today indeed many AI/AN have multiple tribal lineages because of intermarriage and the complicated issues surrounding tribal affiliation Currently the tribal affiliation for a child is determined at birth by the parents If blood quantum issues

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80 and intermarriage makes it unlikely for an individual to become a tribal member with an enrolled status it may be possible for the child to have decendance status from multiple tribes (but no true legal tribal affiliation with a tribe) and become eligible ( or not) for access to BIA and IHS benefits According to Schmidt (2011) AI/AN identity has been constantly an area of debate among federal policy makers anthropologists historian s and even Native communities themselves As American Indians have a spe cial relationship with the United States their identity will continue into the future to be reconstructed and redefined by those who have a vested interest This circumstance has put a large burden on the definitions for legal purposes and for the purpos es of tribal affiliation law as well as Natives trying to self identify in a world of multiple contexts Haozous et al (2014) note: No other US population must persevere through such sociopolitical hoops in order to claim an identity Federal policie s have created the racialized AI/An identity and federal policies continue to enact a racialized AI/AN identity through strict requirements to obtain federal recognition and services ( p. 3) Regardless of legal status the most common and relevant designat ion for an AI/AN identity for a person is their individual personal sense of tribal affiliation and the manifestation of this in their own self report ( Haozous et al., 2014) Racism and R elations to Euro Westerners According to Dr Tinker (2010) Ameri can Indians exist today in what would be The colonialism that American Indians face today is much different from what some other Indigenous people in the world might experience For example unlike various other Indigen ous people and their experience of colonialism we live side by side with our abusers whose numbers are in far excess of ours on our own

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81 homelands and they enjoy a far more powerful economic level (Tinker 2010) In addition: Their culture dominates the land; their religious traditions are imposed on us as the only avenue to salvation; their political structures and their economic solutions are coercively imposed on our Native Nations ; their philosophical and theological solutions are persistently touted as universal goods explaining the poverty and dysfunctionality of Indian communities (Tinker 2010 p. 342) These acts of oppression play out in fueling racism t oward AI/AN and affect their relationships with individuals of the dominant culture Altho may recognize the blatant acts of colonization in U nited States history, such as the violent over taking of AI/AN lands the displacement of Native people from their homelands and the outright genocide by the forced sterilizatio n of American Indian women in the 1970s ; they do not recognize institutionalized racism (Lawrence 2000) This country is less apt to recognize the daily subtle on going racist imperialist ic devices in place to further disempower the original indigeno us people of North America For example, in a study by Kramer, AI s reported their experience of racism ; that they did not expect to be treated fairly by providers nor receive adequate service from no n Indians ( Turner & Kramer, 1995) The following paragr aphs point out some of the subtle ac counts of racism that continue to exist and pre sently affect AI/AN relations with Euro W esterners Racial m isclassification Cancer data accuracy for AI/AN populations has been clouded for many years by the occurrence of misclassification of race that has happened in central cancer registries in the United States (Kaur, Burhansstipanov & Krebs, 2013). Long standing common coding errors, collapsing racial categories into other categories, along with racial misclassifi cation have been reported previously ( Frost & Shy, 1980; Frost, Taylor & Fires, 1992; Hahn, 1992; Hahn et al. 1993; Hahn, Mulinare &Teutsch, 1992 ; Hahn, Truman & Barker, 1996 ; Sugarman et al., 1992 ; Sugarman et al., 1993 )

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82 AI/AN populations are often ha mpered by inaccurate and incomplete data in vital statistics and surveillance systems. AI/AN are, more than any other racial groups, very likely to be misclassified in cancer registries. Due t o cancer registries inaccuracies critical underestimates occu r for cancer incidence for AI/AN populations ( Frost, Taylor & Fries, 1992; Ioannou, Chapko & Dom i nitz, 2003 ; Kwong, Perkins, Snipes & Wright, 1998; Mettlin, Menck & Winchester & Murphy, 1997; Partin, Rith Najarian, Slater, Korn, Cobb & Soler, 1999; Puukka, Stehr Green & Becker, 2 005 ; Swan & Edwards, 2003 ) Likewise, misclassification of AI/AN is often a problem of death certificat es ( Arias, Scha u man, Eschbach, Sorlie & Backl u nd, 2008; Hahn, Truman, Barker ; 1996; Hahn, Wetterhall, Gay et al., 2002 ; Harwe l l, Hansen, Moore Jeanotte, Gohdes H e lgerson, 2002 ; Noymer, Penner & Saperstein, 2011; Poe Powell Gri n er, McL a ughlin Placek, Thompso n & R o b ins o n, 1993 ; Rosenberg, Maurer Sorlie, et al ,1999; Stehr G reen, Bettles Robertson, 2002 ) Race of the d eceased is of ten left up to the discretion and ascertainment of a funeral director (Jim et a l 2014) Consequently, in the United States, AI/AN population mortality has be en critically underestimate d ( Arias, Scha u man, Eschbach, Sorlie & Backl u nd 2008 ) Epsey et al. (2008) found misclassification when canc er registries were linked with records to the Indian Health Service. Cancer incidence and stage data were compiled for AI/AN and non Hispanic whites (NHWs) across six IHS regions for the years 1999 th rough 2004. Misclassification of AI/AN race as non Native was found in central cancer registries This misclassification varied from a low of 85 individuals in Alaska (3.4%) to a high of 5 297 in the Southern Plains (44.5%).

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83 Jim et al. (2014) used thre e data sources in attempting to survey misclassification : T he IHS N ation al Vital Statistics System (NVSS); IHS N ation al Program of Cancer Registries (NPCR); Surveillance, Epidemiology and End Results (SEER) program; and the N ation al Longitudinal Mortality Study (NLMS) and found misclassification varied significantly depending on if an area was a Contract Health Service Delivery Area (CHSDA) According to the authors: Misclassi cation results varied considerably by IHS region: the lowest percentages of misclassi ed decedents were observed in the Southwest (6.3%) and Alaska (6.5%), whereas the highest percentages of misclassi ed decedents were observed in the East (35.2%) and the Southern Plains (36.6%; data not shown). The majority of IHS decedents were reside nts of CHSDA counties (170 743 vs 16 794 in non CHSDA counties) and rural counties (109 22 8 vs 78 209 in urban counties) ( p. e3 4 ). Espey et al. (2014) in their study inve stigating leading causes of death and all cause mortality, outlined multiple s trategies for less misclassification of AI/AN in their study on AI/AN all cause mortality data These include d : 1) using county level population estimates produced by the US Cen sus Bureau as denominators in all their rate calculations; 2) manag ing multiple race data collected since 2000, us ing the N ation al Center for Health Statistics (NCHS), in collaboratio n with the US Census Bureau, which has developed a technique of bridging race categories into single race annual population estimates (Ingram Parker, Schenker et al., 2000) ; 3) using t he N ation al Cancer Institute which makes increased county geographic codes and race and includes adjustments for major population shifts as a result of Hurricanes Katrina and Rita in 2005, while providing public access to this data; t hese estimates are on the te ( N ation al Cancer Institute Surveillance, Epidemiology and End Results Program 2013 ; N ation al Vital Statistics System, US Census population with bridged race categories, 2013). D uring pre liminary analyses, the authors discovered that

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84 pop ulation estimat of Hispanic origin. T he authors to avoid underestimating mortality in AI/AN populations, limited analyses to non Hispanic AI/AN persons, chose non Hispanic Whites as the most homogeneous referent group L astly analysis was restricted to CHSDA counties w h ere less misclassification typically occurs (Epsey et al., (2014) Focusing analysis to Contract Health Service Delivery Area counties or CHSDA counties to address misclassification is useful to reduce the imp act of race misclassification for cancer and mortality reporting ( Espey, et al. 2007; Espey et al., 2008; Anderson et al., 2014 ; Jemal et al., 2013; Howlader et al., SEER cancer statistics review, 1975 2010 NCI ). The population of AI/AN individuals is hi gher in CHSDA counties when compared to non CHSDA counties and past research has shown lower levels of racial misclassification for AI/A N individuals in CHSDA counties (Arias, S c hauman, Eschbach, Sorlie & Backlund, 2008; Jim, Espe y, Wiggins, Cobb & Wingo, 2006) This approach is based on the increased awareness of the AI/AN race in these counties (Arias, Shauman, Eschbach, Sorlie & Backlund, 2008 ). All these steps help support data cleanup in regards to m isclassification (see Epsey et al., 2014 for more details of data clean up) Disregarding steps for data cleanup and the resulting misclassification of AI/AN cancer numbers within Native communities has been problem atic (Haozous et al., 2014) For instance, in a research funding climate which stresses epidemiologic evidence, misclassification of race is often critically important to AI/AN who make up only 5.2 million or only 1.7 % of the population ( Haozous et al., 2014; Bureau of Indian Affairs, 2012) Critically this population can be misrepresented: regional differences in cancer

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85 incidence rates among AI/AN were found not to be apparent in nationwide data (Wiggins, 2008). It is an unfortunate reality that desp ite the health disparities that AI/AN population endure, they are frequently overlooked for needed resources. Accurate determi n ations of mortality and disease are a crucial step toward assessing and addressing AI/AN disease burdens and health disparities. According to Haozous et al. (2014), racial misclassification complicates and distorts the actual burden of disease in AI/AN AI/AN are often dropped from analysis for lack of statistical significance, omitted from national reports, and subse quently overlooked as recipients of needed Presently, the linkage with Indian Health Service (IHS) has opened the window on the vast discrepancies in numbers at play within Euro Western health systems concerning racial misclassification IHS linkages with p atient enrollment have been found to be timely, as well as cost efficient and are one way to address AI/AN race misclassification in central cancer registries and in vital statistics mortality data (Burhansstipanov, Hampton & Wiggins 1999; Espey et al., 2007; Espey et al., 2008; Puukka, Stehr Green & Becker, 2005; Wig gins et al., 2008). Nevertheless, although this is an improvement, there remain vast numbers of AI/AN individuals who will never get counted in IHS records such as t hose from non federally recognized tribal Nations those urban AI/AN who though eligible to use IHS hospitals and clinics are not located near such facilities and reside in urban areas, those with names not ty pically recognized as Native, such as Spanish s urnames in the Southwest, as well as those who choose their care through other health providers than IHS providers (N ot e to

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86 previous two years and only in certain states for example all IHS data are limited to those who accessed services within the previous 2 years only, so many / most AIs are never counted in the IHS data unless they have used IHS services within the previous 2 years, i.e. if you use any non IHS clinic even if living on a reservation, there are no patient data r eported for you. Moreover, only 33 of the 50 states have IH S [partially funded] programs, so all AIs living and obtaining services in the remaining 17 states are never counted). From a critical lens, institutional racism is at play with the continued miscl as sification of AI/AN and with supporting health policies. However, this racism at play can also be individual. In a conference on race and ethnicity held in the city of Portland, Oregon in 2011, it was reported that underreporting and misclassification of AI/AN d ata regarding health was due to a) data entry error, b) provider failure to collect the information, c) p atient refusal to provide the information, and finally, d) p atient lack of identification with a specific racial category (Oregon Health Auth ority, Department of Health and Humans Services, 2011). Racism: regional differences. According to Tribal critical race theory (Brayboy, 2005), racism is endemic to the Unites States and is so ingrained in our society that it appears invisible to those who are not affected. Racism using this lens is responsible for an organized system of institutional practices and policies put in place to shape racial inequality. These inequalities may be even more profound in differing regions of the country. The effect of racism on AI/AN individuals in geographic regions that are historically economically depressed and/or isolated rurally with few existing resources to

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87 share can be even more profound. This can have a lasting effect on health, according to David Williams (1999): Racism is an added burden for nondominant populations. Individual and institutional discrimination, along with the stigma of inferiority, can adversely affect health by restricting socioeconomic opportunities and mobility. Racism can als o directly affect health in multiple ways. Residence in poor neighborhoods, racial bias in medical care, the stress of experiences of discrimination and the acceptance of the societal stigma of inferiority can have deleterious consequences for health (p. 173). Areas of the country that are historically known for economic discrimination, perceptions of racial bias, discrimination in medicine, and known for support ing the stigma of inferiority for nondominant groups, thus can have pathogenic effects (Will iams, 1999). Racism: urban differences. The Indian Relocation Act was a law to encourage Native Americans to move from their reservations to urban centers. Natives had begun moving from their tribal lands at the start of the twentieth century when disma l economic conditions on several reservations pressured American Indians toward jobs in urban towns and cities These Native workers then, as do many presently, went back and forth from reservation to urban areas with many workers migrating throughout the year to locate seasonal or temporary jobs (Danziger, 1991; LaGrand, 2002). Some of these workers stayed and an urbanization process began, and that increased steadily, helping to form an urbanized foundation for Native populations that would increase ove r the following decade (Sorkin, 1978). Adding to this group of workers were veterans of the military. Many Indians found that their m ilitary service contributed to

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88 er their term of service (Fixico, 1986, p. 14). The Relocation Program, with its agenda of forced Native assimilation, was the primary force behind the urban Indian communities that are a reality today. Perhaps, it can be said that the most on going sub tle pressure to assimilate was originally in urban centers where Native Americans went through persistent assimilation policies and were purposely isolated from other AI/AN individuals in the relocation program policies from the 1940s. Acculturation and adaption are often cited as destructive but essential accommodations that American Indians have had to make in the face of invaders from European countries. AI/AN were expected to acquire the culture of the dominant group (Fixico, 1986). In these areas, acculturation and adaption are behind on going assimilation forces that continue to affect relationships with Euro Westerners. that tend to denigrate individuals or gro ups because of phenotypic characteristics or Anderson, Clark, & Williams 1999, p. 805). Because of the subtle on going racism toward AI/AN in these contexts, relationships with Euro Westerners continue to be affected. AI /AN Culture a daily basis, gives a sense of place in the world, and provides a worldview appropriate to Culture as a term brings up many different definitions, connotations, and has a range of scientific and

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89 social uses. ulture has its Latin roots in the verb olere which means literally to cultivate land or to cultivate the mind if one uses it as a vivid metaphor (Goudsblom, 1980). has also been used as a reference and contrast to that which was not quite civilized or was considered barbaric, in other words, the wild, or nature, as in the opposite of something refined. A typical use of the word has been to encompass the pinnacle of human achievements usually Euro Western, such as those in the intellectual, scientific or artistic arenas. A more modern usage of the word culture is to suggest a primary characteristic or way o f being of a group. According to Van Binsbergen (1999), culture has also been used as a concept to denote a defining characteristic or characteristics of ethnic or national identification. When using this concept in reference to a group it then further d efines or emphasizes these distinct and specific characteristics. The goal of a group be a separatist conversely to create diffe rences with others (Van Binsbergen 1 999). Kessing (1974), in his classic overview of the many theories of culture, notes that there is always a deeper distinction between culture as an integrated adaptive socio cultural system, for example, that which is used in several cla ssical anthropolo gical theories, and as an ideation system. In the case of the latter, Kessing (1974) notes that culture resides primarily in the collective mind and in this regard, generally tends to refer to a set of commonly agreed upon beliefs, accepted norms, and val ues, as well as perceptions. Also using this definition, culture can be used to explain a set of a defined regard, it can be seen as an interwoven and integrated syste m using a derived social

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90 toolkit for practices. It underlies an arrangement that stresses numerous interweaving ideas, along with practices and their interrelationships. Marjorie Kagawa Singer (2014) has deeply and eloquently defined culture for health b ehavior and social scientist researchers and her definition is appropriate for this study: [C] [sic] and which informs, consciously and unconsciously, how to live life, w hy they live life, and how to resolve problems in doing so. It is created and modified within a multidimensional, multilevel, dynamic and adapting ecologic system of internal and external resources and restraints Further, it is socially and legally inte Kagawa for life. It provides the social structure that it defines and coordinates the numerous roles of each of its members in relation to the group, rules of interaction and distribution of power. It expresses and sustains the reality of its members codified through the built environment including our institutions. (Consortium of Social Science A ssociations, COSSA, Behavioral and Social Science Operationalizing Culture for Health Behavior and Social Sciences Research, June 2, 2014, p. 3 4). Thus, culture embodies how individuals define and construct their world. It is the basis of constructing their world that Native people embrace with ways of knowing and being, the next topic. Native Ways of Knowing and Being In attempting to describe important Indigenous worldvie ws and beliefs, the researcher of this study acknowledges that there exists an inherent risk of running into stereotyping an individual, a group or a tribal nation This is especially true because AI/AN are culturally and linguistically di verse groups. In North America alone, as mentioned there exist over 565 federally recognized tribes and over 200 state recognized tribes with greater than 200 known and identified and distinct languages (BIA, 2014; N ation al Co nference of State Legislatures, NCSL 2014, N ative Languages of the Americas, 2014) Thus, the cultural diversity of North American Indigenous peoples come from historically distinct Nations productivity, self maintenance, and leisure are culturally specific to

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91 (Skawski, 1987, p. 38). As a conseq uence of this ext ensive Native N ation diversity, the concepts which are related to topics such as sharing, noninterference, learning style, time and spirituality are therefore only generally representative of typical Native group beliefs, shared values, views, and/or corresponding behavior. Accordingly, it is critical to note that when describing the worldviews of any Indigenous people, there are general and important distinctions that exist specific to n at ion, region and grou p. For example, [t] he concept of sharing is deeply ingrained among Native & Ho, 1975, p. 379). For instance, in the Pacific Northwest cultural ar ea, individuals hold little value in the status of the accumulation of material goods and focus more on the generosity inherently displayed in an individual or family. The Indian Potlatch is a typical example of this deeply held value of sharing in this a rea. During a Potlatch Ceremony, a critical and important part of the ceremony is to distribute material goods to the community in the form of gifts. This example of communal sharing would be in the form of blankets, food, and other items of special need for the community (Jilek Aall, 1981). Many Native Nations also emphasize nonaggression, cooperation, and patience as virtues As well it would be unheard of for individuals of many Native Nations to speak publically about any of their personal accompl ishment s and/or honors Indeed, most would eschew virtually any sort of public speaking of these achievements that would take a way from the hard works of the group, contrary to their dominant White society counterparts (Weiringa & McColl, 1987). Instead, skills and achievements should be

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92 used solely for the good of the community, rather than for personal gain or to increase a As many traditional Indians exhibit, the extended family, including relatives and the tribal na tion are exceedingly important. As Primeaux relates: To be really poor in the Indian world is to be without relatives (Primeaux, 1977, p. 92). Children tend to be deeply wanted and cared for, just as elders are profoundly cherished and highly regarded for their accumulated, cultural and tribal knowledge, which is passed along to subsequent generations through the practice of oral tradition (Primeaux, 1977; Weiringa & McColl, 1987). One basic cultural princ iple that many AI/AN individual s hold close is that of interrelatedness and wholeness (Pierotti & Wildcat, 1997). Using this worldview everything is considered interconnected and to have life (Cohen, 1998). Intertwined and together, there is a feeling of oneness in the universe where many actions and thought s can be seen to affect all of creation (Lowe, 2002; Struthers, 1999) This holistic view is that life is one system, in which many AI/AN individual s fe el they are part of this system, a part of all creation (Duran & Duran, 1995). From this perspective, life is not viewed as separate parts that somehow may or may not objectively relate to each other (Duran & Duran, 1995). The earth is part of this equation; places on the earth are considered sacred and relate to stories of tribal origin, rene wal and beyo nd. The earth is the foundation and gives a sense of place a view which remains important within Native w ays of k nowing and being : nourishment, medicine and comfor t. It is the source of their independence; it is their Mother.

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93 They do not dominate Her, but harmonize with Her (Statement on Indigenous Peoples and Conservation, prepared by Indigenous Survival International, 1991, p. 41) Related to this concept is the basic cultural principle of harmony and balance within the universe, as well as internally within one self. According to Struthers et al. (2003), the holistic worldview of American Indian culture reflects fou r aspects of a ental, physica l, emotional and spiritual. Using this perspective, the spiritual represents the spirit, the physical represents the body, the emotional represents feelings, and the mental represents the intellect. Within this perspective, each component is equal in its importance (Struthers et al., 2003). This interrelatedness and wholeness is reflected in the Medicine Wheel: Figure 1.1: Medicine Wheel This model represents the Medicine Wheel, which is considered a sacred symbol by many but not all Native Nations Other tribal Nations such as some in the Southwestern United States, use other symbols to represent the circle of life and the balance and sometimes known as the Sa cred Hoop, has been used by generations of various tribes for

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94 health and healing. It embodies the four directions, as well as Father Sky, Mother Earth, and Spirit Tree (Native Voices, Na N ation al Library of Medicine, N ation al Institute of Health, Hea lth and Human Services, 2014). Warne (2005) notes : The medicine wheel the traditional Lakota symbol for medicine, health, and balance is essentia lly a circle with a cross in the middle. To the east is the spiritual realm. To the north is the mental realm, to the west physical, and to the south emotional. To be healthy, you must be in balance in all four directions, essentially living in the cente r of the circle (p.123). It is a circle that even as each branch divides and is opposite each other, each remains still within the circle and is connected to the rest: The First Nations Medicine Wheel describes a First Nations philosophy of healing. The M edicine Wheel shows the separate entities: mental, physical, emotional and spiritual as being equal and as part of a larger whole. This reinforces the concept of interconnectedness and the belief that one part cannot be the center but must instead learn t o work in harmony with all of the other parts. The Medicine Wheel therefore represents the balance that exists between all things. The First Nations worldview, as represented by the Medicine Wheel, has balance as one of the basic tenets of healthy living (McCormick, 1966 p.166). healthy may mean for many AI/AN that all components are in b alance and/or harmony with the rest such as with self, with nature, the family and the community (Struthers, 2003). Independence and the concept of noninterference are highly valued i n many American Indian Nations Hodge and Struthers (2006), in their a rticle on a study of an intervention for smoking among Northern Plains Indians, comment on their finding of Indian groups value independence 183). The authors

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95 Time may also mean different things to some individuals of Native Nations Time as conceptualized by the do minant US society may be directly correlated to a physical twenty four hour clock, annual calendar and a linear passage of time. However, ti me for many Native Nations may be linked to the earth and the physical passages inherent such as sunrises, sunset s, different phases of the moons, the changing of seasons, nights and days (Lewis & Ho, 1975). These close associations to cycles of earth and of nature may be connected to the relationship with the earth and the attempt to achieve balance with nature by utilizing only what was available each season and saving for the next winter, as that approach was the primary consideration for the future life and of those living closer to the earth (Baker, 1982). According to Garrett & Garrett (1993), in Native Ameri can Indian culture, for many individuals there is an emphasis on being as opposed to doing This concept of being according to the authors, means the purpose in life is enough just to be and develop the inner self. Centering this concept and state of be ing is developing the inner self among all the intertwining of relationships and all of creation C ommitment to the future generations is important to several Native Nations and individuals Oren Lyons Chief of the Onondaga N ation summarized this notio n of responsibility to upcoming generations: We are looking ahead as is one of the first mandates given us as chiefs to make sure and to make every decision that we make relate to the welfare and well being of the seventh generation to (Lyons, O. as cited in Vecsey, C. & Venables, R. 1994, pp. 176 177)

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96 Chief Lyons expresses here an und erstanding held by many Native Nations in making decisions with the foresight and the compassion for the next generations. M any Native individuals believe there is value in becoming a community servant keeping in mind the future generations on the path of becoming a whole human being. Oral tradition and communication. Oral trad itions are prevalent in modern AI/AN culture. Storytelling is an important part of the oral tradition for many Native Nations (Diaz & Sawatzky, 1995; Garrett, 1996). Storytelling has multiple meanings in a tribal context but its underlying meaning is it s information sharing (Garrett, 1996). Additionally, Garrett (1996) notes that oral tradition and storytelling is a critical method of conveying information and experience. It is a means for many AI to learn their traditional values, beliefs, and practic es. Storytelling demonstrate s tribally accepted modes of communication and behavior. Through a frame of reference using storytelling, tribal individuals relay modes of communication, models of accepted tribal behavior and community expectations. It is i n this relating of stories through oral tradition that numerous American Indians pass on traditions, beliefs, values and their associated expectations (Duryea & Potts, 1993; Garrett, 1991; Oswalt, 1988). This oral tradition, storytelling and the modeling of modes of communication within tribal Nations can have its effects on present day meaning. In Satter, Veiga Ermert, Burhansstipanov, Pena, and Restivo (2005) article on communicating respectfully with American Indian and Alaska Natives, the authors no ted unique linguistic differences for their cultural competency training for the data collection interview ers gathering of health data for American Indians in California. The formal outcomes of the study generated materials that were actively sought out b y researchers,

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97 clinicians and even state agencies. The study outcomes found linguistic differences for , consideration is taken not to interrupt the speaker while talking) (p. 49) (See also another example of AI communication patterns, Appendix O, Crow Cultural Communication Patterns). Harjo, Burhansstipanov and Lindstrom (2014) comment on these local tribal communication differences: Non Natives s ometimes stereotype AI as being stoic and lacking expressions, but such non verbal patterns are unique to each tribal culture. Local subtleties may include avoiding direct eye contact and sentences with word order and/or patterns that are different than English (p. 415). Garrett (1996) also notes how commu nication style for some Native Nations is affected by the importance of being a listener: Native American Indians emphasize a nonverbal communication style. Moderation in speech and avoidance of direc t eye contact are nonverbal communicators of respect by the listener, especially for respected elders or authority figures. Traditional Native American Indian people are not rewarded for asking questions or verbally analyzing situations. Rather, they are expected to learn through patience and observation (p. 7). Harjo, Burhansstipanov verbal patterns are unique to each tribal culture. Local subtleties can be distinct Such subtleties can be almost unnoticeable an d even slight, as the authors cite: Several Tribal Nations Others have cultural issues with touch. For example, in some tribal cultures, it is disrespectful to touch the ha ir of native men; in others, one would avoid touching a person (such as a comforting p atient initiates such touch, and in many, the non Native may receive a very timid or limp handshake because this type of touch i s not intrinsic within the local Indigenous culture. Such subtleties are subconscious and natural to NPNs [ Native Patient Navigators ] who work in their local communities (p. 415). Some of these may be related to the use of oral tradition. Although, the a daptions of these traits exist on a continuum for Native individuals, an emphasis on the importance of oral tradition and storytelling as a way of communicating in tribal Nations affects the various ways information is relayed and the roles from the speake r to the listener.

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98 Spirituality. Spirituality can mean a variety of concepts to different individuals (Garrett, 1994). Dei n (2005) describes three main ways people may think of spirituality. One way p eople describe spirituality is comparable to a vita l principle in persons. Still another way to think about spirituality is as a search for meaning and with regard to this relatedness to other things. Finally a last way that people describe and think about spirituality is as a re lationship with a high er power, as they have come to understand Smith Grob, Jesse, Bravo, Agar, and Walsh (2004) describes spirituality as an infinite 126); o r conversely, as in the way of the Hindu tradition, the spirit is (Dei n, 2005, p. 529). Spirituality is constructed within culture (Dei n, 2005; Smith et al. 2004). It is ess ential worldviews (Hazel & Mohatt, 2011) Ideas about spirituality have been gathe red across tribal communities; these ideas involve relationships and the sense of interconnectedness. Central to this this view is striving toward a lifeway of living in balance and with a sense of harmony within self, community and the environment (Garre tt & Garret 1994). In regard to this idea of interconnectedness is a belief in the spirit world and that this world remains close, side by side in connection with the land and the physical world (Bensley, 1991). Humans in this regard, consist of the spir it and the mind, as well as the body (Westgate, 1996) along with their connection to the land. The spirit enters into the physical body at birth and will continue to exist, even after it leaves the body when a person dies (Westgate, 1996). Sacredness of place Surrounding these beliefs is the overarching belief in that all things are connected and that we as individuals have an honored relationship with all

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99 things, the land, and the universe (Vick, Smith, & Herrera, 1998). Vine Deloria, (n.d.) remarks: Every society needs these kinds of sacred places. They help to instill a sense of social cohesion in the people and remind them of the passage of the generations that have brought them to the present. A society that cannot remember its past and honor it is in peril of losing its soul. Indians, because of our considerably longer tenure on this continent, have many more of these kinds of sacred places than do non Indians. Many different kinds of ceremonies can and have been held at these locations, and there is both exclusivity and inclusiveness depending upon the occasion and the ceremony. In this classification the site is all important, but it is sanctified each time ceremonies are held and prayers offered ( Sacred Lands and Religious Freedom, n.d. p. 4 ) The these relationships as things unfold in their set and chosen good time (Herrera, 1994). Spirituality and its connection to health In many Native American Nations health and re ligion are interwoven and have a high degree of integration (Coggins, 1990). This integ ration is very much entwined, s o much so, that the healing is not to be and canno t be separated out from religious or cultural areas (Locust, 1988). Central to this id ea of health among many American Indian Nations is the concept that human beings are made up of spirit as well as mind and body (Coggins, 1991; Locust, 1988). Therefore, to many Native Nations healthcare is conceptualized differently. As Hodge (1999) n otes: To many American Indians healthcare means more than dealing with illness and pain; it reflects the basic worldview and cultural values of the group, which in turn influences health and illness behavior. It is believed that healing takes place not on ly in the body but also spiritually and that it includes the family and community (Hodge, 1999, pp. 209 210). For some Native Nations critical to the health of an individual is the alignment of spirit, and its relationship to illness. Locust (1985) com ments on illness: Native American Indians believe that each individual chooses to make himself well or to make himself unwell. If one stays in harmony, keeps all the tribal laws and all the sacred laws, one's spirit will be so strong that negativity will be unable to affect it. If one chooses to let anger or jealousy or self pity control him, he has created disharmony for himself. Being in control of one's emotional responses is necessary if one is to remain in harmony. Once harmony is broken, however, the spiritual self is weakened and one becomes vulnerable to physical illness, mental and/or emotional upsets, and the disharmony projected by others (p. 14).

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100 Addressing the spirituality of a p atient may be just as important as addressing the physical heal th of a p atient : out a gun and shot me through my spirit. Then I go down the hall to chemo and got another shot through the spirit. Same thing in radiation. to heal pletely recove re d from the cancer (Tobias Martinez oral and neck cancer survivor/thriver ) ( Burhansstipanov & Hollow, p.212). Although this belief of spirituality and its connection to health varies upon the individual and its context depends on the tribal nation, this quote underlines the importance of the connection of health to spir ituality for many Native people (See Appendix H for differing AI/AN conceptualizations related to health, cancer and pain). Native self determin ation Native self determination has its basis in the perception of sovereignty. Many Tribes have existed and been recognized as sovereign Nations since before the US C onstitution was written and indeed, even before the United States was formed. Tribes have a unique legal status that is recognized by the federal government. For example, t he Commerce c lause states that C ongress has the power "to regulate Commerce with foreign Nations and among the several States, and with the Indian tribes" (quoted in Pommersheim, 1995, p. 214). Tribes seen as such sovereign Nations are in a government to government relationship with the United States. For Nations and during the for mation of the United States, treaties and their processes were used to settle people and used with the diplomatic relations with Indian Nations Sovereignty has legal and political definitions from US government; federally recognized tribes that describe sovereign Nations In 1832 in a Supreme Court decision of Cherokee N ation v s Georgia,

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101 ruled in essence, that Indian Nations henceforth had the full legal right to govern themselves inter nally, manage their own internal tribal affairs and engage in political as well as legal relationships with the government and its subdivisions. These Native Nations are treated as foreign governments: A federally recognized tribe is an American Indian or Alaska Native tribal entity that is recognized as having a government to government relationship with the United States, with the responsibilities, powers, limitations, and obligations attached to that designation, and is eligible for funding and services fro m the Bureau of Indian Affairs Article I, Section 8 of the United States Constitution vests Congress, and by extension the Executive and judicial branches of our government, with the authority to engage in relations with tribes, thereby firmly placing tribes within the constitutional fabric of our nation. When the Supreme Court Chief Justice John Marshall articulated the fundamental principle that has guided the evolution of the federal Indian law to the present: That tribes possess a nationhood status and retain inherent powers of self Wilkins & Lomawaima (2001) note t hat the fact that tribal Nations exist within the confines of the United States is not a contradiction of their status as intrinsically and whol ly sovereign political entities, as countries with inherent rights. Cases of honoring the sovereignty of another form of government within these confines occur. For example, the federalist system of government balances federal sovereignty against the rights of individual US state governments Sovereignty includes the right of tribal n ations to be self determinant in government, health care and e ducation if they me et specific government criteria As people of sovereign n ations Native people assert this right individually from the standpoint of their tribal n ation sovereignty. But s overeignty according to Lomawaima & McCarty (2002 ) can also m ean the abili ty to speak, write and have on actions come from a point of agency. The concept of Native sovereignty and self determination even trickles down to the individual level for AI/AN. Many Native Nations and individuals respect these

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102 aspects w ith regards to health. For example when consulting a traditional healer the interaction and power dynamics are more equal than in Western medicine and in this relationship a negotiation goes on between the healer the p atient and the tasks that need to be done. As Garrett & Garrett (1994) relates: When Native American Indians go to the Medicine Man (or Medicine Woman) for healing, they may just sit together and talk for a while. Together, they decide exactly what the problem is, and the Medicine Man wi ll either suggest ways of dealing with it or simply ask that the person do something (e. g., a specific task). Two very important things the Medicine Man will include as part of the healing process are (a) a support system for the person (i.e., family, fr iends, or other trusted persons); and (b) some type of ceremony or ritual that helps restore the person to harmony and balance with the environment (Garrett & Garrett 1994, p. 6). This expression of self determination with regards to health is very much in opposition with Western medicine, authoritarian doctor p atient relationships. From a Native point of view this is a health journey determined by the individual and their chosen path Kinship. According to Weaver & Brave Heart (1999), among the Nor thern Plains n ation, for the Lakota: Among the Lakota, a Northern Plains nation, the sense of self traditionally is intimately bonded with the group, or the Oyate (Lakota nation). Being Lakota means carrying the welfare of the all decisions with the well being of the Oyate in mind, and at times sacrificing oneself for the good of the nation. Connection with all of creation, both the present universe and the ancestor spirits, is essential to positive self esteem. The sense of sel identity does not exist apart from the spiritual world, the Oyate, and all of creation. (p. 22 23 ) "If you know my family, clan, tribe, then you know me" (Iron Eye Dudley, 1992 as quoted by Garrett & Garrett 1994). For Native Americans the family is one of the most important sources of connection. Family relationships extend well beyond nuclear families to include extended family and uncles who may be seen as fathers, cousins as brothers and sisters aunts as second mothers. These extended familes may be through the clan members and relationships, community members, adoption, and family through the second cousin. Family may also include claiming of nonblood relatives as family

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103 members (Iron Eye Dudley, 1992) and include nature and all livi ng creatures. The entire universe is thought of as family relations with each member serving a necessary and essential function The importance of family is intrinsically tied to the dependence of individual survival on the community (Garrett & Garrett 1994). These ways Native ways of knowing and being are important to Indian people and the subject of health because ultimately, as Locust ultimately responsible for their own communities, and it is Indian people who wi ll Center for Research in Disease P revention, 1992, p.xii). Indian people need and want to be responsible for their own healt h (Locust,1995). We next explore in more detail health topics that effect AI/AN health. Health Topics: Overall AI/AN Health American Indians have documented health disparities. These include lower overall life expectancy along with disproportionate rates of poverty, 1.7 times the rate of suicides an d almost three times the rate of type 2 diabetes related deaths as to the general population AI/AN also have 6.5 times the rate of alcohol related deaths when compared to non Hispanic Whites (Perez & Hirschman, 2009). Disparities in mortality and genera l health status have persisted among AI/AN populations when compared to the general US population for many generations (Jones, 2006). Factors affecting AI/AN health. A multitude of factors affect American Indian and Alaska Native (AI/AN) health. AI/AN pe ople continue to have high prevalence

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104 estimates of health behaviors that may contribute to excess deaths from injuries, chronic diseases and cancer (Cobb, et al., 2014), as well as other factors that affect their health. To outline these factors and obta in a perspective on their importance with regard to AI/AN health, a regional report on AI/AN popul ations in Colorado is useful. National s tatistics for American Indians and Alaska Natives (AI/AN) tend to be problematic and AI/AN populations are best exami ned regionally because of the previously mentioned frequency of racial misclassification, the clustering of and the incidences of underreporting. By examining facts gained through the Community Health Profile: Denver Indian Health and Family Services (DIFRC), a snapshot on a host of factors affecting AI/AN health in several Colorado counties served by the network of Title V Urban Indian Health Organizations (UIHO) can be seen. Through this snapshot, many of these factors ef fecting AI/AN health are represented. These statistics are reflective of factors affecting the health of not only Colorado American Indian populations, but more accurately represent national AI/AN po pulations as well. S upport for the data from the repor t is also strengthened because the information is from a variety of sources including, United States Census, CDC Behavioral Risk Factor Surveillance System, US Center for Health Statistics, N ation al Vital Statistics and Denver Indian Family Resource Cente r (DIFRC) self administered survey. Also, lastly, the facts represent both urban and rural AI/AN populations. The counties reporting span a major portion of Colorado (Adams, Arapahoe, Boulder, Broomfield, Denver, Douglas, Gilpin and Jefferson counties). This report is valuable as a window on to these factors that affect AI/AN and is important to get pe rspective on the AI/AN population, however, there is one caveat with

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105 using this report, the report is insufficient; the Colorado Department of Public Heal th and Environment (CDPHE) has acknowledged the under reporting of American Indians in Colorado in several publications as well as on their website. For example, as stated in their 2013 Health Disparities R ata on these i ndicators are not always available for subpopulations or, in some cases, they are not available for However, findings from the report are considered insightful and included the following points on the AI/AN population. Currently AI/ANs are identified to be among the poorest populations in our nation, and also tend to have lower education levels, poorer housing and transportation problems (Rural Minority and Multicultural Health committee, 2008). Using data from the DIFRC commun ity profile, the survey reports that the Colorado Native population has a lower level of education, a lower income and higher unemployment than other populations for 2005 2009. Large percentages (20.8%) of AI/ANs age 25 and older have not obtained a high school degree or GED when compared with the general population (11.1%) in the same areas. Poverty is a common problem among the AI/ANs surveyed. Income levels for AI/ANs in these areas are below the federal poverty level (18.3%) when compared to all rac es (11.5%). Moreover, unemployment is quite prevalent; AI/AN who are 16 years of age or older (10.7%) are likely to be unemployed when compared to all races (6.2%) surveyed. Insurance and access to care remain a prevalent problem for AI/AN. Notably, h igher mortality is associated with those individuals without health insurance (Wilper et al., 2009). These individuals are less likely to receive needed medical care than individuals with insurance and after receiving care may take a longer time to return to

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106 health after dealing with a chronic disease or an unintentional injury (Hadley, 2007). Using the community profile, for the areas targeting AI/ANs in the DIFRC community report, fewer AI/ANs reported having medical insurance under age 65 ( Note the exa ct figure for health insurance for AI/AN was not cited, because it included IHS as insurance. However, Indian Health Service is not considered health insurance. Eliminating IHS out of the health insurance estimate would leave an approximate estimate of A I/AN having medical insurance at around 35 38%). For the DIFRC service area, for 2005 2010, AI/ANs report a higher number of health access issues, for instance, not being able to see a physician because of cost (23.1%) when compared to the general popula tion (12.3%) (Urban Indian Health Institute, 2011). Importantly, those individuals who see a usual source of primary care are associated with a greater ability to receive preventative care (Blewett, Johnson, Lee & Scale, 2008). For AI/ANs in the DIFRC se rvice area, fewer individuals (67.8% of AI/ANs ) have a personal health care provide r when compared to all races (80.1%) (Urban Indian Health Institute, 2011). Furthermore, areas affecting many AI/AN involve lack of social support. Overall mortality has been associated with social support (Uchino, 2006). Many AI/AN suffer from lack of social support and isolation. For the DIFRC service area, 13. 5% of AI/ANs report rarely or never receiving social/emotional support versus 6 0% of all races for 2005 2010 ( Urban Indian Health Institute, 2011). Importantly a significant proportion of the AI/AN population is isolated geographically and live rurally. Approximately 50 % of AI/ANs live in rural communities ( N ation al Urban Indian Family Coalition, 2008). Many A merican Indians reside on reservations or in communities that are located in

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107 isolated rural communities (Rural Minority and Multicultural Health Committee, 2006). Issues of isolation and support as well as other social factors outlined in this community p rofile, give a window on social factors that continue to affect the AI/AN community and consequently, the health of its members. AI/AN health disparities. Health disparities are inequities or differences, in health outcomes and their determinants acro ss and within communities and counties within the areas of geographic, social, demographic and environmental attributes (Natialie Pereira et al., 2011). Inequities in vulnerable populations can lead to a more advanced disease at diagnosis, increases in c hronic disease incidence and prev alence, few er treatment options available to the p atient and a greater prospective for increased or poorly managed tre atment side effects, as well as the possibility of decreased quality of life and of premature death. Add itionally, numerous factors influence these disparities including socioeconomic status, education level language and literacy, unemployment, behavioral choices, environmental contaminants, comorbid medical conditions and unequal access to quality, timely medical care (Colorado Cancer Coalition, Colorado Cancer Plan 2010 2015; Krebs et al.,2013). S everal health disparities and inequities continue to affect AI/AN More AI/AN live in poverty at a level almost twice that of the general popul ation. Adult AI /AN are also more likely t o weigh within the obese range and/or suffer from high blood pressure. AI/AN along with having these health issues have limited health care; only about half of AI/AN a re covered by health insurance. AI/AN are also mo re likely to work in unhealthy and unsafe conditions without the luxuries of proper training, notifications of inherent job risks, retirement funds or health benefits (Colorado Cancer Coalition, Colorado Cancer

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108 Plan, 2010 2015). At home, unhealthy risky con ditions m ay continue to persist. For example, 1 2% of AI/AN homes lack adequate safe water and waste disposal facilities, these households differing dramatically when compared to 1% of the general United States population (Burhansstipanov, 2012; US Department of He alth and Human Servies, Indian Health Service, Strategic Plan 2006 2011). Barriers in the form of health literacy can also inhibit or delay access to health services for AI/AN. These barriers can include very little or no information about available heal th services, communication difficulties with providers of necessary health care, and the lack of ability to use local health care systems with efficiency. Moreover, some p atient s may no t understand their rights to access and use an interpreter when deemed necessary or their rights to understand health information that i s presented in a way that is linguistically or culturally relevant to them (Burhansstipano v, 2012). These issues may lead to serious problems in the form of decreased treatment adherence, inadequate follow up care, and delays in seeking care for disease related side effects as well as treatment (Krebs, et al. 2012). AI/AN with their lower socioeconomic status when compared to Non Hispanic Whites is as well an indicator of less access to c ancer prevention and control services (Espey, Wu, Swan et al., 2007). Lower socioeconomic status is also associated with personal, financial an d structural barriers to healthcare, including reduced access to recommended preventive care and treatment servi ces, along with inadequate health insurance coverage (American Cancer Society, Cancer Facts and Figures, 2012). In 2009, the Indian Health Service noted that cancer screeni ng rates were greatly lower for AI/AN than the US population as a whole, with 33% o f all eligible AI/AN men and

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109 women receiving colorectal cancer screening, 45% of eligible AI/AN women receiving mammograms, and 59% of eligible women receiving Pap smears (Government P erformance and Requirements Act, Indian Health Service: 2009 N ation al Su rvey) Health inequi ties will also affect the future generation of AI/AN children as well. AI/AN generally experience delayed prenatal care and higher rates of infant mortality (Castor, Smyser, Taualii, Park, Lawson, & Forquera 2006 ; Grossman, Kreiger, S ugarman, & Forquera, 1994; Saylors & Daliparthy, 2005 ; Urban Indian Health Institute, 2007). AI/AN infants die at a higher rate than other races (8.0 per 1,000 compared to 6.8 per 1,000 respectively, 2004 2006 rates, IHS Fact Sheets, 2012). AI/AN men and women in all areas except the Southwest, are more likely that White men to be current smokers, with the smoking prevalence estimates nearly twice the rates as in Whites. AI/AN also continue to have health behaviors associated with disease risk such as la ck of physical activity, not using seatbelts, and lower prevalence estimates of cancer screening when compared to White populations (Cobb et al., 2014). In general, AI/AN individuals endure higher risks for many chronic diseases, cancer and injuries (Cobb et al., 2014). AI/AN die at higher rates from diabetes (182% higher), unintentional injuries (138% higher), homicide (83% higher), alcoholism (552% higher) and suicide (74% higher) (IHS Fact Sheet, 2013). According to the N ation al Healthcare Disparities Report Healthcare Research and Quality, Blacks and AI/AN received worse ca re than Whites across 40% of core indicators, compared to 80% for low income people, 60% for Hispanics and 20% for Asians. AI/AN people have difficulty re ceiving timely and high quality health care (Warne & Frizzell, 2014; Roubideaux & Dixon, 2001). Among

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110 AI/AN populations, disparities in mortality and health status have continued to persist when compare d with the general US population for many generations (Jones, 2006). Barriers to care. AI/AN when struggling with serious and life threatening diseases such as cancer, also tend to have significant disparities and inequities in the form of barriers. For instance, the lower socioeconomic status of AI/AN has been ass ociated with barriers to health care. These barriers include no or inadequate health insurance and the inability to access preventive care as well as treatment options (American Cancer Society Cancer Facts and Figures, 2012). Cobb et al. (2014), in a survey of AI/AN in CHSDA counties reported that 23.2% of AI/AN stated compared with Whites for the same measures and geographic area (12.3% and 18.7% respectively). Barriers translate to decreased access for cancer screening for AI/AN. Screening rates for cervical, breast, prostate, and colorectal cancers tend to be lower for AI/A N than for non Hispanic/Latino W hites (Espey, Wu, Swan et al., 2007). Finding cancer through screening rather than at a later and a more developed stage determines if the tumor remains localized. If cancer is diagnosed at a late stage, or as a stage disease ce of poorer outcomes from that cancer (Kaur, Burhansstipanov & Krebs, 2013). This is a significant fact for AI/AN ; in 2008, 1% of all Swan, Coughlin, Kaur, Erb Alvarez et al., 2008). In Alaska males, the incidence of late stage colorectal cancer is up to 60.9 % of the cases prese nted. Even taking into account that there have been difficulties in screening in the state of Alaska, AI/AN still present at later stages. In co mparison in Northern Plains more than 50% of AI males diagnosed

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111 with colorectal c ancer presented with late stage disease (Perdue, Perkins, Jackson Thompson, Coughlin, Ahmed & Haverkamp et al., 2008). Currently, AI/AN women, despite having a lower incide nce of breast cancer are still more likely to be diagnosed at later stages and younger ages (Roubidoux, 2012; Wingo, et al., 2008) and in the Southern and Northern Plains and in Alaska, the rates of both late stage and early stage colorectal cancer (CRC) were found to be consistently elevated among AI/AN individuals (Perdue, et al., 2014). Other areas where AI/A N experience barriers to care are with the inability to pay for services, with distrust of providers, with lack of cultural appropriateness on the part of providers, the lack of availability of providers, language difficulties, and child care issues (Institute of Medicine, 1993 ). Additionally, many AI/AN p atient s may not understand health information that is not culturally or linguistically relevan t to them, or understand their right to ask for an interpreter ( Burhansstipanov 2012 pp.79 100 ) Issue s surrounding access to care likely contribute to the data that observed disparities between AI/AN and White persons in regard to cancer survival (Sing h, Ryerson, Wu & Kaur, 2014). Access to care may p l ay a bigge r picture than previously noted; Wilson notes that even among M edicare beneficiaries, for the interval from diagnosis to surgery, the interval for AI/AN women was greater than White women. ( Wilso n, Adams Cameron, Burhansstipanov, Roubidoux, Cobb, Lynch, & Edwards 2007). Next the influences of cultural competency are discussed. Cultural c ompetency Investigators point to the importance of cultural competency in the delivery of health care servic es. Research documents that the inclusion of culturally competent practices may result in the lowering of a portion of

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112 health disparities (Barton, 2006; Brach & Fraserirector, 2000; Eckersley, 2006). Eckersley (2006), in his work with epidemiology and cu ltural influences, noted th at the cultural influence is greatly underestimated and, underestimated determinants of their population health and well Native people this may mean connection to the family, the land, and the elements of the Medicine Wheel (or for some tribes, t he Circle, or Circle of Life) Why do these a ffect health? For example, a question of health might include questions of the health of relatives, the environment, condition of the land, as well as the four quadrants (mind, body, emotions, and spirits ). Healthcare access for AI/AN individuals as well as populations, may be limited by discomfort with Western healthcare facilities along with the lack of culturally competent staff and misund erstandings of specific Native beliefs (Antle, 1987; Michielutte, Sharp, Dignan, & Blinson, 1994). For example, the fear that being evaluated or talking about cancer when symptoms are not present may actually cause disease (Antle, 1987; Michielutte, et al ., 1994) has led to a lack of use of Western healthcare settings and practitioners. Accord ing to Harjo, Burhannsstipanov, and Linstrom ( 2014 ) Nations feel that using such words invites the disease to the one speaking or Consequently, the lack of culturally competent staff has had the overall effect of general discomfort for AI/AN p atient s with Western facilities, thei r practices and institutions, a s well as of limited or decreased AI/AN health a ccess and compliance. Significantly, Navigator s who have been hired and trained from the community have comprised a su ccessful strategy (Banner, Decambra, Enos, Gotay, Hammond,

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113 Hedlund, ... & Tsark 1995; Burhansstipanov, Christopher, & Schumacher, 2005; Burhansstipanov, Dignan, Bad Wound, Tenney, & Vigil, 2000; Freeman, 2004; Gotay et al., 2000; Matsunaga et al., 1996). The underlying reasoning behind this strategy is that an element for effective navigation is cultural competency (Banner et al., 1995; Freeman, 2004; Matsunaga et al., 1996; Petereit et al., 2008). Historical trauma and its effects on AI/AN health. Numerous theories cite and help advance the deep understanding of the significant effects of years of colonization on Native people and their health and the legacy of historical trauma. Among these theories are intergenerational /historical grief or historical trauma (Alvord & Van Pelt, 1999 ; Brave H eart, 1995; Struthers & Lowe, 2003). Intergenerational/ historical grief theory is created on t he principle that certain populations who have been historically subjected to long term, mass trauma colonialism or other forms of trauma such as war, genocide, and/or slavery may have a high disease prevalence many generations after the occurrence of an o riginal trauma (Sotero, 2006). Historical trauma can be conceptualized as the burden of suffering and grief carried from centuries of group trauma. As Brave H eart & DeBruyn (1998) note, Historical Trauma (HT) causes a cumulative psychological effect and is emotional ly wounding over the lifespan I n turn, the impact spreads across several generations emanating from massive group trauma experiences. Because Native Nations are largely oral societies, trauma and grief issue s may be significant in this reg ard, through the relating of stories and through parent/child interactions (Degaff, 2001). Using the means of oral tradition, upcoming generations experience the grief a nd trauma of years long past of crimes against the preceding generations. Generations will, once again, learn the

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114 crimes committed a gainst their tribal people and Nations for hundreds of years and across several generations (Alvord & Van Pelt, 1999 ). Boarding schools were part of the legacy of historical trauma for Native Americans. Boa rding schools were schools that enforced assimilation backed by Federal policies. In boarding schools, Indian children were forbidden to speak their Native languages or engage in cultural practices, including traditional spirituality, and at times, were physically abused (Tanner, 1982) as well as separated from relationships with family and relatives. In recalling his years at the boarding school, Luther Standing Bear (1 928/1975, p. 141). This era of suffering from forced relocation and assimilation in boarding schools influences the health of Native people today. Putting this historical trauma in context helps one understand the grief and trauma the original inhabitan ts to North America have had to deal with over the last few hundred years. For example, American Indian genocide was committed on the North American continent beginning at the time of contact in 1492. The original inhabitants of the North American contin ent were est imated from about 3.5 million to 15 million (Jaimes 1992; Stannard 1992; Thornton 1987). Even calculating from the most conservative population estimates, between the years of 1500 to 1900, 2/3 of the original inhabitants were destroyed. Howe ver, if one chooses not to rely on conservative estimates, and instead use the larger numbers, 99% of the population was destroyed during this same time period (Stiffarm & Lane, 1992). Considering the gravity of this trauma, the potential effect on the he alth of Native American Nations today cannot be overestimated.

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115 According to Harjo, Burhansstipanov, and Lindstrom (2014), Native Patient Navigators reduce feelings of fear through education and navigation (p.414). Historical Trauma has been cited as tra uma that is multigenerational in some specific cultural groups ( Brave Heart & DeBruyn, 1998). In the local area, Native Patient Navigators (NPN) have personal knowledge of the history and the resulting trauma, as well as knowledge of local culture, custom s, and have access to the health care system s (Harjo, Burhansstipanov & Lindstrom, 2014). Therefore, the trust of AI/AN clients and the knowledge of Western medicine, allow Native Patient Navigators to help clients. AI/AN Cancer Evidence of increasin g cancer numbers among AI/AN populations exists, a disease that is emerging as a leading cause of premature death among AI/AN (US Department of Health and Human Services, 2011, 2012). White et al. (2014a) using regional analysis of Contract Health Servic e Delivery Area (CHSDA) counties, linked Indian Health Service (IHS) data with case reports from central cancer registries and death records the data which enabled the identification of AI/AN individuals more accurately, thus aiding in recognizing distinc t disparities in AI/AN cancer mortality and incidence. Trends in death rates confirmed that greater progress in cancer control has been achieved for White populations when compared to AI/AN populations over the last twenty years. Additionally, cancer surv ival, as measured by Mortality Incidence Ratio (MIR) was found as being consistently less favorable for AI/AN populations compared to White populations for mostly all cancers examined (White et al., 2014a) AI/AN populations have been in a negative position for cancer in the United States. For most populations, cancer death rates have been overall declining steadily,

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116 according to the most recent years of available data. For the five years of 2004 2008, overall cancer incidence rates have declined 0.6% per year in men and in women have remained stable. Cancer death rates have decreased by 1.6% per year in women and 1.8% per year in men over the 10 years of 1999 2008. Cancer death rates have declined more than 1% per year for women and men of every racial /ethnic group with the exception of AI/AN, which have remained stable (Siegel, Naishadham, & Jermal, 2013). Important to understanding cancer in AI/AN populations is that there continue to exist distinctive geographic patterns for AI/AN cancer incidence and mortality, observed by White et al. (2014a) and earlier by others (Cobb & Paisano, 1998; Epsey, Paisano & Cobb, 2005; Espey, Wu, Swan et al., 2007; Haverkamp, Espey, Paisano & Cobb, 2008; Wiggins, Espey, Wingo et al., 2008). According to White et al. (2014a) for men living in CHSDA counties, cancer death rates from 1999 to 2009 differed significantly by region for AI/AN populations and minimally for White populations. Among AI/AN men in these CHSDA counties death rates for all cancer sites combined ranged from a low 163.8 in the Southwest to a high of 338.1 in the Northern Plai ns, a difference of over two fold, c ompared to White males which were 207.1 in the Southwest to 231.7 in the East. For AI/AN women in the same counties, the overall death rate for all cancer sites combined ranged from 125.9 in the Southwest to 246.9 in the Northern Plains. For White women total cancer death rates varied from 149.9 in the Southwest to 164.4 in the Pacific Coast region (White et al., 2014a). In addition, to thes e rates, death rates for specific common cancers are high among AI/AN populations. According to White et al. (2014a), in both the Southern and Northern Plains, death rates for AI/AN men were elevated when compared with White

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117 men for cancers of the larynx prostate, lung and colon or rectum. AI/AN women also followed suit in the Southern and Northern Plains with significantly higher death rates of cervical, lung and colorectal cancers. Although in the Southwest region, AI/AN indivi duals had lower death ra tes than those for Whites for brain, colorectal, lung, esophagus (male), bladder (male), and breast cancer (female), but higher rates for myeloma and cervical cancer. But, in the Southwest, death rates among AI/AN women were significantly higher death rat es than those for White individuals for myeloma and cervical cancers. In the East, AI/AN women death rates were significantly higher when compared to White women for cancer of the colon and rectum. In the Pacific Co a st region rates for AI/AN individuals were higher than those for Whites for colorectal cancer (CRC) and higher among AI/AN women populatio ns for pancreatic cancer (White et al., 2014a) For AI/AN populations, cancer mortality and incidence may be only part of the total picture. For example, for AI/AN women, breast cancer is the cancer most often diagnosed and a leading cause of cancer mortality (Jemal, Simard, Dorell et al., Annual Report to the N ation on the Status of Cancer, 1972 2009, 2013; US Cancer Statistics Working Group, United State s Cancer Statistics, 1999 2009). This statistic remains, despite the fact that AI/AN women have a lower incidence than White women. Also, AI/AN women are more likely to be diagnosed at later stages in the disease and at younger ages ( Roubideaux 2012; Win g o King, Swan et al., 2008). For AI/AN women, breast cancer death rates are higher in Alaska and the Southern Plains and observed breast cancer death rate trends have not seen much improvement (White et al., 2014a).

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118 Other lesser known cancers, although m uch less of the total picture and a small portion in relation to the common cancers (e.g. breast, lung, colorectal), also have poorer outcomes. Watson and Sidor (2008) have also reported that American Indian/Alaska is seen as comparably lower (11.9 per 100,000) when compared with that for non Hispanic/Latino whites (40.5 per 100,000). However, for AI/AN, the risk of dying is disproportionately higher relative to the risk of ever being diagnosed with cancer of the bladder (Watson & Sidor, 2008). White et al. (2014a) also noted that across all six regions analyzed, death rates for kidney, liver, gallbladder and stomach cancers were consistently elevated. For example, Southwestern AI/AN women have eight times the de ath rate compared to White women. Stomach cancer death rates for AI/AN women and men were highest in Alaska; these were followed by the Southwest, then Northern Plains. Death rates for liver cancer and kidney cancer among AI/AN men and women exceeded the rates for Whites by more than two fold in most regions (White et al., 2014a) Cancer death rates increased significantly for AI/AN women and men during the period from 1990 to 2009. A t the same time overall cancer death rates have been declining significant ly for White men during this exact period and for White women from 1993 to 1998 and 2001 to 2009. For common cancers such as lung, colorectal cancer and breast cancer, there have been significant declines in death rates occurring in White populations over several years, but the same corresponding death rates for the same years remain unchanged or increased for AI/AN populations (White et al., 2014a). These differences in cancer death rates were found when AI/AN populations were analyzed regionally. For AI /AN, due to a variety of factors affecting data including

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119 misclassification, the picture of cancer is not revealed w hen rates are aggregated across regions Indeed, the aggregation masks observed distinctive geographic patterns of cancer incidence and mortality. Distinctive regional differences in cancer may be due to the environ mental and social factors that a ffect population differences such as smoking, alcohol consumption, obesity and physical activity (Cobb et al., 2014). As well, across the life span, exposures to carcinogenic and multiple infectious agents at critical periods may cont ribute to these patterns (White et al., 2013). Screening, an important component in cancer control, remains lacking among AI/AN populations. AI/AN women over 40 yea rs of age were found overall less likely to ha ve had a mammogram in the past two years than White women (67.8% versus 76.0%). Qualifying Southern Plains, Southwest, as well as AI/AN women overall, were less likely than White women to hav e had a Pap test i n the past three years. In the Southwest and Alaska, AI/AN men overall between the ages of 50 to 75, were less likely than White men to have had a prostate specific antigen test taken within the past year. AI/AN men, excluding those in the Pacific Coast, were also less likely to have had a colorectal cancer (C RC) screening (endoscopy within five years or fecal occult blood test within one year) compared to White men. Likewise, AI/AN women in the Southwest, Northern Plains and Southern Plains, as well as overall, were less likely to have been screened than White women (Cobb et al., 2014). These statistics are an unfortunate reality for Native populations. AI/AN communities are chronically medically underserved and have little in the way of preventative care. The frequent outcome of these facts is poorer survival rates for AI/AN. For example, AI/AN are less likely to receive preventive care in the form of

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120 regular screening for cervical cancer, such as with PAP smears and this lack in turn, contributes to their having the highest cervical cancer mortalit y in the United States (Bell Schmidt Grimminger, Patrick, Ryschon, Linz, & Chauhan 2007). Cancer initiatives for AI/AN There have been several national initiatives for cancer care in AI/AN communit ies, the purpose of which is to help expedite improvement for cancer care and for research with AI/AN. For example, the N ation al Cancer Institute (NCI) sponsors several programs with AI/AN populations in conjunction twork for Cancer Control Research among American Indian /Alaska Native Populations These projects provide a system to exchange cancer control research, cancer information and strengthen community links to researchers, members, federal agencies as well as with larger entities such as the American Cancer Society (ACS) The n etwork places its focus on a) increasing the number of AI/AN researchers, scientists, and medical students; b) developing curricula and helping mentor students in the Native Research Program; and c) organizing and convening national conferences on cancer in Indian Country (Burhansstipanov & Dresser, Documentation of the Cancer Research Needs of Ameri can Indians and Alaska Natives, Native American Monograph No 1, N ation al Other promising initiatives that have also collaborated with NCI have been the Alaska Native Tumor Registry (ANTR) which publis in Alaska Natives 1969 2003: 35 N ation Cancer Registry. The latter forms a collaborative with the Cherokee N ation and aims to build an infrastructure

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121 ogy, and End Results (SEER) program standards in, for example, case finding s p atient follow up, data processing, data reporting and on going quality assurance. Additionally, the Northwest Portland Tribal Registry Project serves to increase the quality of disease surveillance data for Northwest AI/AN and the Native Cancer Information Center and Learning Exchange (C.I.R.C.L.E.) serves as a national clearinghouse for cancer education materials specific to Native communities (Burhansstipanov & Dresser, Docume ntation of the Cancer Research Needs of American Indians and Alaska Natives, Native American Monograph No. 1., N ation al Cancer Institute, NCI, 1993; N ation al Cancer Institute, 2011). Along with the initiatives mentioned above, AI/AN populations have also been targeted with the N ation Awareness, Research, and Training programs (SPN). The Spirit of E.A.G.L.E. S. (SOE), implemented in 2000, is the American Indian and Alaska Native Leadership Initiat ive on Cancer and is directed by Judith S. Kaur, MD, out of the Mayo Clinic Rochester. The SOE is one of several Community Network Program Centers funded by NCI to help reduce cancer health disparities. The SOE remains a pivotal point in initiatives on cancer in AI/AN communities ( Kaur, Dignan, Burhansstipanov, Baukol, & Claus, 2006), where none existed other than the network. Today, cancer efforts for AI/ AN, such as those initiated by Spirit of E.A.G.L.E.S. have become more common, but before 2000: N o tribes had comprehensive cancer control plans and no Patient Navigator s were available on reservations. No community grants were geared specifically to Native Americans and Alaska Natives and there were no Native American Research Centers for Health nor regional conferences on cancer for tribes. Few culturally specific cancer educational materials existed for American Indian or Alaska Native populations (Kaur et al., 2006, p. 1987).

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122 Before the SOE came about, this work was begun by a group of engaged and committed specialists, survivors and community leaders. Efforts of this informal group were coordinated and formalized in 1999 2000 to respond to the Request for Applications for Special Populations Networks (RFA CA99 003) (Kaur et al., 2006). The SO E presently remains in an active leadership role for many AI/AN programs throughout the cancer continuum. Leadership in the fight against cancer in AI/AN remains critical to gaining ground against this disease for Native populations. In addition to SOE, NCI also supports regional Community Network Programs ( CNPs ) such as the University of Oklahoma Community Networks Project (OUCNP) (American Indian and African American, Principle Investigator Campbell, J.), the Regional Native American Community Networks Program (Principal Investigator Buckwald, D.), the Southwest American Indian Collaborative Network ( Principal Investigator Coe, K.). Cultural factors and AI/AN cancer. perspectives on many things including ideas of health and illness (Turton, 1997). Many AI/AN differ in beliefs about health and illness from non Natives. For example, there are approximately 217 known Native American languages that exist today. Many if not all erican Lung Association, 2010). The Nav ajo cancer glossary gives a perspective concerning cultural factors, in this case, with regards to language, from a Native worldview, an excerpt from the Navajo Cancer Glossary (2010): The translations of medical the Navajo language. The Navajo language, as are all languages, is powerful. In the Navajo tradition the spoken word is powerful and becomes a reality and therefore they say be mindful and careful of what you say. It is our responsibility to use these terminologies carefully. Our elders teach us that we should never joke or tease each other about diseases and abnormal conditions that affect the body, mind, and spirit. Disease, diagnosis, t reatment and medicines are

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123 to be handled with great care. These traditions and belief s are the background to translation and interpretation in all cases. Interpretations should be in the context of positive thinking, hope and compassion. Whenever possibl e, include the use of kinship terms. Using the Navajo language appropriately gives a person great joy, satisfaction, and sense of pride. Frank Morgan, Consultant 2006 ( From Austin Garrison, Martha A and Garrison, Edward R. Glossary for Basic Cancer Term inology in the Navajo Language. Kayenta Public Health Nursing Program, Navajo N ation Division of Health, Dine College, January 2010, p.3.). Native languages, as indicated by this quote are powerful. Carol Iron Rope Herrera notes the importance of Native language in that the sanctity and power of Lakota words can predict a personal outcome (Vick, Smith, & Herrera, 1998 ). For example, the Navajo have phrases that refer in the Navajo Language, 2010). According to the authors of the glossary, not only was this technically a mismatch but it also undermined the goals of early screening and detection and had miscon ceptions about treatment (Austin Garrison & Garrison, 2010). Moreover, also according to the authors: And Navajo people appreciate proper expressions of concepts. Dominant societal concepts and terminology cannot be explained well by mere use of literal translations by looking at constructs of thinking and understanding. The Navajo people who live out there near the mountains and mesas are the greatest teache rs of semantics and expressions. When you need help [with language, and ways to help a person with your words. Frank Morgan, Consultant 2006 ( From Austin G arrison, Martha A and Garrison, Edward R. Glossary for Basic Cancer Terminology in the Navajo Language. Kayenta Public Health Nursing Program, Navajo N ation Division of Health, Dine College, January 2010 p.3). This cultural perspective translates into a very different sense of the meaning of cancer for individuals of this Native n ation and might include an underlying psychological sense of hopelessness (Robinson, Sandoval, Baldwin, & Sanderson, 2005). The Navajo Cancer Glossary now translates basic charac teristics of cancer cells as,

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124 with technically accurate elaborations (Glossary for Basic Cancer Terminology in the Navajo Language, 2010, p.4). The glossary is an example of Native Nations are being progressive in addressing this issue: T translation that Navajo people can use to help them understand the disease that they have and how it ca n be treated. It explains how important words are, both in how they are used and the intent behind the use of potentially powerful words and concepts (Harjo, Burhansstipanov & Lindstrom, 2014 p.415 ) Cultural interpretations can be critical. Burhannssti panov & Olsen (2004) have also noted several cultural interpretations of a cancer diagnosis for AI/AN which can differ from Euro Western interpretations : Creato dignity and do not show the pain, I can protect my community and neighbors from something and the Lessons to Learn: has helped me appreciate every day the Creator has given me and my wife. My life is full of living, laughing, Results from a Curse from Someone or a Personal Violation of Tribal Mores (Stepping on a Frog, Urinating on a Spider) ncer was who has the cancer spirit. So it is her fault t machine touched me. Now I (Examples of Cultural Perceptions of a Cancer Diagnosis, p.183, Bu rhannsstipanov, Lovato & Krebs,1999, c i ted in Burhansstipanov & Olsen, 2004 )

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125 Thus, intended meaning and its interpretations may differ from non Native perceptions of the disease. Other cultural issues and c ancer care can be broad ranging; Burhansstipanov and Hollow (2001) note that Natives d isplay a broad range of adaption of these practices from being very traditional to being comfortable in a Western environment E xamples follow that illustrate the range of issues that can be addressed (adapted from Burhansstipanov & Hollow, 2001, p.209 2 12). Table 2.7: AI/AN Cultural Issues and Cancer Care Issue and details regarding culturally appropriate solutions for oncology providers (note there is a variety of adaption from very traditional Natives who adopt many of these practices, to acculturat ed Natives who adopt only a few traditional practices. Native religious and sacred artifacts Removal of cancer tissue/tumor Perception that cancer is a culturally valid outcome for disturbing the land and its inherent sacred nature within (e.g. burial of nuclear wastes, strip mining, logging). Cultural practices such as praying, singing and drumming; burning sage, cedar and other natural products to cleanse or purge the hospital room from disease and evil spirits. Items not to be disturbed and specifically placed, within or on the body (e.g. crosses, sweet grass, sage, cedar, feathers, mussel shells, stones, leather items, bones, hair, sea shells, bead ed art work, corn pollen, traditional medicine bags cloth, jewelry etc.(Providers have enclosed these items in Ziploc bags, to keep them on or close by the p atient P atient concerns that surgery results in losing part result in the loss of his/her spiritual path to the ancestors when p atient s have been assisted by traditional healer through ceremony and pray er to address this issue A culturally acceptable way to add ress perceptions traditional cleansing ceremonies for the healing of Issues arise such as possible disruption to other p atient s and staff, c onstraints about the burning of natural products due to fire and safety concerns (e.g. oxygen equipment nearby). Solutions finding alternatives for non fire cleansing ( e.g. use of corn pollen, ground up ceda r, praying at a distance

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126 Issue and details regarding culturally appropriate solutions for oncology providers (note there is a variety of adaption from very traditional Natives who adopt many of these practices, to acculturat ed Natives who adopt only a few traditional practices. Spiritual and Organized Rel igious aspects of cancer recovery and healing for p atient s Use of Traditional Healing and Traditional Indian Medicine Family issues regarding care taking and decision making Other Issues: Geographic location may be a partial explanation for delay for AI/ AN cancer p atient s from the time of diagnosis to initiation of treatment; AI/AN p atient s may live in remote areas complicating access issues for AI/AN (e.g. coverage of employment while p atient absent, care of family and childcare issues, lack of emotional and spiritual support far from home, etc. (p.219) Christianity may (or may not) be closely integrated and accepted into the culture and organized religious spiritual practices may be used by s everal AI/AN individuals Today there are many AI/AN very traditional, and still others that are bicultural and use both Traditional Indian Medicine Traditional Indian Medicine (TIM) and modern Western Med Conceptualizations of family and relations may vary, family may participate in decision ma king which may differ from Euro Western Note. Adapted from Burhansstipanov & Hollow, 2001 p. 206 2012 See Appendix H for different AI/AN conceptualizations of health, cancer, cancer care and pain. Positive role for culture in cancer studies. Many studies have cit ed culture in an increasing positive role i n cancer studies (Coe, Attakai, Papenfuss, Giuliano, Martin, & Nuvayestewa 2004; Giuliano, Papenfuss, de Zapien, Tilousi, & Nuvayestewa, 1998; Risendal, Roe, de Zapien, Papenfus & Giuliano, 1999). AI cultural id entity has been reported by Giuliano et al., (1998) as facilitating participation in breast cancer screening services and in their study of Hopi women The authors reported that these women were using both their Native culture and mainstream medical syste ms to promote health (Giuliano et al, 1998). Similarly, Risendal and colleagues (1999) have also noted a positive role for culture in cancer prevention for AI women in their study of urban AI women in Phoenix, Arizona. Conversely, culture has been repor ted as having negative effects. In their study with Cherokee and Lumbee women in North Carolina, Messer et al. ( 1999 ) noted that

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127 These researchers also identified participation one does not go to the doctor unless one is sick to both groups of AI wome n and limited their participation with the program and its instructions for yearly cervical cancer screens. The authors further recommended that an detection intervention projects (Messer, Steckler, & Dignon, 1999). AI women may be resistant to seeking health care services due to their stron g sense of modesty. This heightened sense of privacy has been identified as a limiting factor in seeking screening for cancer (Clar ke, Joseph, Deschamps, Hislop, Band, & Atleo 1998: DHHS, 2002; Michielutte, Dignon, Sharp, Blimson & Wells, 1999; Steven Fitch, Dhaliwal, Kirk Gardner, Sevean, Jamieson, & Woodbeck, 2004 ). Clarke and his colleagues have noted that First N ation women par ticipants were embarrassed and intimidate d by the procedure (Pap test). results were found by Steven et al. (2004 ) with Ojibw a and Oji Cree women participants. This strong sense of privacy for Native women was more intense than Italian, Ukrainian and Finnish women participants. According to the researchers, Native women found breast and cervical exams to be aversive and overly intrusive. This sense of privacy for Native women was a prominent theme noted by the authors, though noteworthy is the fact that despite these negative reactions, the Native women, not being fully informed about breast and cervical screening, still reque sted informational literature.

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128 Other researchers report that cancer causation may impede participation in cancer screening on AI women. Strickland and colleagues (1996) reported that Yakima women associated a cervical exam with childbearing and sexual activity rather than cancer Powell & Squeoch, p.147). Some research has further verified that among certain tribes and individuals the belief exists that speaking about cancer may cause its onset (Locust, 1986; Olsen, 1993). In their study about AI beliefs concerning health that sp eaking about an illness may give it the power to manifest or express itself in n, 1993, p.15). Olsen also reported that ome traditional p atient to Weiner (1999) reporting on California AI talks about cancer, its complications and its discourse. She reports that discussing cancer can be influenced by the amount of contact with cancer survivors, and with accessible info rmation about cancer and discussions with health care providers who are culturally sensitive (Weiner, 1999). In their study with AI women in Vermont, Canales et al. (2004) note the influence of gram decision making. The findings suggested a woma of connectiveness to a traditional way of life. Native c ultural c ommitment Native cultural commitment is on a continuum. LaFromboise et al. (19 90) spoke of cultural commitment among Native American

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129 Indians and described this commitment in the following four ways from LaFromboise et al ( 1990): Traditional -those who generally speak and think in their native language; they practice only tradition al beliefs and values. Transitional -those who generally speak both native language and English; they do not fully accept the cultural heritage of their tribal group, nor identify completely with mainstream culture. Bicultural -those who are generall y accepted by dominant society; they are simultaneously able to know, accept, and practice both mainstream values and traditional values and beliefs. Assimilated -those who are generally accepted by dominant society; they embrace only mainstream culture (LaFromboise et al., 1990, p. 638) Being present: accountability and presence in the community. This concept of being present, and having accountability and transparency to community is revealed as truth over time. In this reference, Hall (1959) allude s to truth being revealed in time: Time talks. It speaks more plainly than words. The message it conveys comes through loud and clear. Because it is manipulated less consciously, it is subject to less distortion than the spoken language. It can shout t he truth where words lie. (Hall, 1959, p.1) a ccountability to community will become apparent. This accountability, along with its transparency to community, lends itself t o a need for a heightened level of ethics in an AI/AN community. Communication Communication for AI/AN is an important topic. Communication can be both nonverbal in the form of body language and facial expressions and verbal in the form of vocal langu age, tone and volume. Satter et al. pauses and not interrupting) Satter et al. (2005) incorpo rated these modifications into their cult ural competency training for their collection interview s for the

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130 participants, has been actively sought o ut by state agencies and other researchers for its alignment for culturally appropriate data collection for interviewer training. Table 2.8: Examples of Ways to Improve Communication with Native American Cancer P atient s Verbal (Words) Vocal Nonverbal Words to Avoid Avoid Avoid Medical Jargon Experiment (connotations of Research (experiences of communities not receiving results) Protocols (has no meaning Positive (when referring t o presence of cancer) Rapid speech Loud tone High pitch vocal tones Mumbling Talking while the patent is talking Touching without first being touched by the p atient Direct eye contact unless the p atient looks you in the eye Sitting within the p atient Leaning into or toward the p atient Words to Use to Help Explain Recommendations Recommendations given in addition to the original cancer cells cancer by removing, blocking, or Soft spoken, gentle t one Confident tone Slow rate of speech Clear inflection and articulation asking questions of the patient Site side by side rather than behind a desk or table while taking with the p atient or family members If the p atient is un comfortable looking you in the eye, but rather focuses on your forehead, chin, or shoulder, then you do the same (obviously if the p atient establishes direct eye contact, you do likewise) outside of it, unless touched or Note. Adapted from Hollow & Burhansstipanov, 2001 p 218 An example of differences in local tribal communication style can also be gleaned from the field of counseling. Accor ding to Garrett & Garrett (1994), in counseling with Native American clients, the counselor should attend to and try to match subtly the LaFromboise et

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131 al., 1990; Thomason, 1991) Sile nce, restatement and lead in time tend to be the most effective with Native American clients because these techniques tend to be the most respectful and are found to be the least intrusive to many Native groups ( Herring, 1990; Richardson, 1981). Assessme nts of tribal structure, customs and beliefs as well as cultural commitment should also provide information on how a counselor should proceed in communication with a Native American client, keeping in mind, the client should be approached as an individual first (Garrett & Garrett 1994). Traditional Native Healing Most of the conceptualizations of Native healing traditions have been surrounded natural remedies and botanical preparations in a store which also specializes in New A ge remedies (Vogel 1970). However, to a Native person the connotation of healing medicine to an Indian was qui te different from th at which is ordinarily held in w hite society. To most Indians, medicine signified an array of ideas and concepts rather than 25) (See Appendix L, also see Appendix H for conceptualizations of health, cancer, cancer care and pain). s five main types of concepts of disease as a base for understanding Native concepts and understandings of healing and illness. s Primitive Concepts of Disease (1932) provid ed one of the first ethnographic studies among Indigenous peoples concerning healing and illness. In this ethnographic study, he provided a classification system and a description of traditional practices and conceptualizations of disease. Clements' s (19 32) concepts were generally defined into

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132 three categories: N atural causes (modern medicine), human agency (sorcery), and supernatural agency (supernatural factors). His study further extended these three ca tegories into five main types: S orcery (human inf liction), breech of taboo (guilt), disease object intrusion (object removal), spirit intrusion (outside entity intruding), and soul loss (loss of soul). These concepts still continue to represent the worldview that several Indigenous people ascribe to and their perceptions of illness and health. Generally speaking, for AI/AN, wellness and illness exist within an interconnected system. Because of this connected relationship, illness is caused by a disharmony or & Sue, 20 08). Importantly, the adoption of these fundamental ideas of wellness and illness is also affected by differences in individual and group tribal belief systems, traditions, value systems and degrees of acculturation. In spite of the factors that can inf luence this fundamental concept of wellness and illness, this view of health for Native Americans differs greatly from non Natives and goes beyond just concepts of balance and disharmony alone (Rhoades & Rhoades, 2000, p. 404). For example even the term medicine has different and far reaching meaning. & Garrett 1994, p.137). For many Native American individuals and tribal groups, this r efers to herbs, traditional prayers, ceremonies, traditional healers, as well as an elder wisdom and belongingness (Nebelkopf & Phillips, 2004) (See Appendix M). In addition, the open and public application of cleansing, healing, and purifying techniqu es, in forms such as the sweat lodge, and the omnipresent "smoking" with a special material, such as sage, sweet grass, or cedar also

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133 tend to differentiate Indian ways of thinking from those traditionally embraced by most scientists (Rhoades & Rhoades, 20 00, p.414). Natives have been reluctant to discuss their use of traditional Indian medicine (or as referred to in this paper, Native traditional medicine ) because: Thi s reticence is somewhat due to non Natives misusing the information or using the informat ion to belittle or criticize the intelligence of the Indian patient or concerns that TIM [ Traditional Indian medicine or Native traditional medicine practices] may not be protected sufficiently (even under the 1978 Indian Freedom of Religion Act) (Burhans stipanov & Hollow,2001,p.212) Traditional Indian m edicine (TIM) can have it s place within cancer treatment, according to Walt Hollow (Burhansstipanov & Hollow, 2001; Hollow, 2001): There are numerous case studies in the medical literature that demonstrate that American Indian/Alaska Native cancer p atient s who use TIM [Traditional Indian Medicine] as well as modern western medicine for their health care plan have better health outcomes or, in the case of terminal disease, die at peace with themselves and in balance ready to reunite spiritually with the creator. There are case studies that do show TIM as being part of a successful cancer treatment for some Indian p atient s. When terminal cancer is treated with TIM, the process of cancer treatment is a positiv e experience as viewed by not only the p atient but his/her family as well. From the p atient brings them to a position of inner peace with themselves (p.212). The refore, AI/AN still are finding a place for forms of traditional healing in their lives Bringing back the harmony. In many Native American Nations the areas of health and religion have a high degree of integration (Coggins, 1990). This integration is m uch interwoven and intertwined to such a great degree, that the healing cannot be s areas (Locust, 1988). As Hodge (1999) notes: To many American Indians healthcare means more than dealing with illness and pai n; it reflects the basic worldview and cultural values of the group, which in turn influences health and illness behavior. It is believed that healing takes place not only in the body but also spiritually and that it includes the family and community (Hod ge, 1999, pp.209 210). Fundamental to this idea of wellness and illn ess among many American Indian Nations is the concept that human beings are made up of spirit, mind and body (Coggins,

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134 1991, Locust, 1988). For many Native Nations tribal groups and ind ividuals, illness can be caused by a lack of balance or disharmony in their lives (Sue & Sue, 2008). However, the concept of a harmonious relationship might for a Native person include an emphasis on supernatural forces, and the spirit world, the perspect ive which contrasts greatly to the secular emphasis on purely physical or physiological explanations in Western medicine (Rhoades & Rhoades, 2000, p. 404). The spirit may be perceived to exist before it comes into a physical b ody and after the person dies with t he spirit world existing side by side as it intermingles with the physical world and the spirit includes all life as well as plants and animals (Locust, 1985). Natural unwellness can be caused by violation of tribal or sacred taboo and unnatural culture of each n ation guides each view and healing tradition. Holism and harmony are important to many Native conceptualizations of illness: The key concept of Native American philosophy is holism, and one of the most important symbols or as an imbalance of various elements, or as a break in t he hoop of life (Heinrich, Corbine, & Thomas, 1990, p.130). Another profound difference between Native understandings of healing and Western medicine is the concept of being. According to Garrett &Garrett (1993), the concept of being is that, "It's eno ugh just to be; our purpose in life is to develop the inner self. This idea is in contrast to the concept of doing, which strives to "Be active; work hard, apply yourself fully and your efforts will be rewarded" (Kluckhohn & Strodtbeck, 1961; Pedersen, 1 988). Another example of the application of this idea is in the dominant culture one may ask American Indian culture would ask instead

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135 family? Native American Ind ians tend "to choose being over doing, which implies that intrinsic worth is more important than education, status, power, or wealth" (DuBray, 1985, p.35). Verbing One of the more profound differences between a Native worldview and Western medicine is int personal way of and in turn As a part of being Native peoples choose where to focus their energies in how they seek their balan ce Garrett & Garrett (1994) speaks to this direction of energies and how it affects wellness: Medicine or a way of life. We each have our own Medicine or way of life wherein we choose which of the Four Directions to focus most of our energy and how we seek our balance. The Medicine Wheel symbolizes the way of things as represented in the Four Directions, each of which stands for one aspect of living: East for spiritual, South for natural, West for physical, and North for m ental. In seeking our Medicine we are seeking a balance between these Four Directions, between ourselves and the universe. Being in harmony means being in step with the universe; being in disharmony means being out of step with the universe (p.5). Bei ng or verbing in this sense, implies a being in harmony with the universe and in turn, a Native sense of wellness. Hzh balance. Hzh refers to the environment as a whole and the universal dimensions of beauty, harmony, balance, peaceful energy, a s acred perfect rhythm, and well being (Chalufour & Borden, 1988, p.18). According to Neezzhoni (2010): Hzh refers to the environment as a whole and the universal dimensions of beauty, harmony, balance, peaceful energy, a sacred perfect rhythm, and wel l being (Chalufour & Borden 18). Nizhoni refers to a particular item; time, space, or a being that is nice, attractive or beautiful. The difference in these two terms is in the prefixes ho ni. Ho refers to the general as opposed to the specific, the whol e as opposed to the part, the abstract as opposed to the concrete, the indefinite as opposed to the definite, and the infinite as opposed to the finite. The Din metaphor envisions a universe where the primary orientation is directed toward the maintenance or the restoration of Hzh. Most people think Hzh means beauty which is just one definition, but the term means much more. In the Din view, Hzh is understood as a multidimensional intellectual construct of balance, order, the emotional, mental, phys ical health, and spiritual happiness, the kind and moral acts of goodness. The Din do not seek Hzh; they are engulfed in Hzh with every breath they take and are surrounded by it every day and night. (p. 13)

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136 The health of an individual is intrinsica lly linked to this balance and the maintenance or restoration of Hzh The Navajo Community College (NCC) began educating nurses in 1970 and this concept is intrinsically part of their nursing program and their Navajo outlook on health. This philosophy is captured by the Navajo Nursing Program started in 1970: Health is wholistic (sic) harmony; illness is a state of disharmony and imbalance which may cause or result from interference in meeting basic human needs. Nursing is a process which supports indi viduals toward human needs. Nursing is a process which supports individuals toward education at Navajo Community College reflects the Navajo way of life. Acquirin g nursing knowledge, skills, and, sensitivity is consistent with the experience of Sa'ahnaaghaii Bik'eh Hzh ( Navajo Community College, Nursing Program Philosophy, 1970, p.1). Lewton & Bydone (2000) examined the concept of Hzh among three different religions: Traditional Navajo, Native American Chu r ch and Pentecostal Christianity: SNBH [Sa'ahnaaghaii Bik'eh Hzh ] specifies that the conditions for health and well being are harmony within and connection to the physical/spiritual world. Specifically, each religious healing tradition encourages affective engagement, proper family relations, an understanding of environment are integral to their self orientations, to their identities as Navajos, and to the therapeutic process. The disruption and restoration of these relationships constitute an important affe ctive dimension in Navajo distress and healing. (p.476) Thu s, balance and harmony are critical to the health and well being of the individual. Next, attention is turned to Western medicine and conflicts with Native worldviews and practices. Western Med icine Conflicts with Native worldview and practices. Dominant societies have always had conflict with those of a different culture. Culture may be an important concept with regard to present day conflicts with Native worldview practices and health belie fs. Research points to the importance of cultural compe tency in the delivery of health care services. Research has verified and documented that the inclusion of

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137 culturally competent practices may result in the lowering of a portion of health disparities ( Barton, 2006; Brach & Fraserirector, 2000; Eckersley, 2006). Eckersley (2006), in his work with epidemiology and cultural influences, notes that the cultural influence is deeply underestimated as evidenced with he culture of societies are underestima ted determinants of their population health and well may mean connection (or disconnection in the Western world) to the culture and for Native groups; as well as with the extended family and the importance and intercon nectedness to nature, to the land, and to the spirit. Rhoades and Rhoades (2000) note differences between Indian and Western medicine: The critical, and often profound, differences between Indian and Western medicine obviously derive from the underlying c ultural precepts of each. A generally accepted Indian concept of health is that it is a tangible reality, not simply the state of being free of disease. This health, or wellness, is often described as the ability to exist in a harmonious relationship wit h all other living things, but also with a number of spirits, including a great and all powerful spirit. The emphasis on the spirit world, supernatural forces, and religion stand in sharp contrast to the secular emphasis on disturbed physiology and purely physical expla n ations of Western medicine (p.404) These differences can be extraordinary. Western m edicine centers on the observations of interrelationships between physical illness and symptoms for diagnosing and treating an individual (Murillo, 2004). Native medicine in contrast, consists of a holistic or mind body approach that considers "individual health dimensions: [T] he physical, mental, spiritual, and environmental context of the person" (Murrillo, 2004, p.113). Table 2.9: Comparison of Wester n Medicine and Native American Medicine Western Medicine Native American Medicine (Cohen,2003) Focus on pathology and curing disease : Reductionistic: Diseases are biological and treatment should produce measureable outcomes Adversarial: How can I destr oy the disease? Focus on health and healing the person and the community: Complex: Diseases do not have a simple explanation

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138 strategy, looking for microscopic cause Intellect is primary. Medical practice is based on scientific theory Physician is an authority Fosters dependence on medication, technology etc. Health history focuses on p atient and family: Did your mother have cancer? Intervention should result in rapid cure or management of disease Teleologica l medicine: What can the disease teach the patient ? Is there a message or story in the disease of disease in the physical, emotional, environment, social and spiritual realms Intuition is primary. Healin g is based on spiritual truths learned from nature, elders and spiritual visions Healer is health counselor and advisor Empowers p atient with confidence, awareness, and tools to help them take charge of their own health Health history includes the environm Intervention should result in rapid cure or management of disease Note. Adapted fr om Cohen, 2003 p.21. Socialization of medicine. Western Modern medicine evolved out of a process of socialization (Ravenel, 1936) This socialization came from its roots as knowledgeable individuals helping to cure illness in neighborhoods to one of the most bureaucratic institutions known today. This w as an evolutionary process that continues today in the form of the on going s ocialization of medical students during medical school to the overriding necessity of a physician at birth and at death. Health care today is viewed by some as a system of social control continually charged with iatrogenic effects or causing illness (Il lich, 1976; Waitzkin, 1979). Conversely, this criticism gives some health care providers and their practice credit for improving health, but singles out the ever increasing bureaucratization as a source of corruption (McKinlay & Arches, 1985). There a re profound differences between Western medicine and its history of socialization and Native concepts of helping an individual with an illness. Duran (2006) has emphasized the need for culturally relevant health care approaches that extend far beyond the application of Native practices to encompass the understanding of Native

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139 concepts. The need is for knowledge and understanding of core Native concepts of the essent ial knowing of Native ways of existing in the world; of the existing and relating to multiple worlds (e.g. spiritual, physical and psychological). AI/AN have unique and complex cultural issues, practices and barriers, such as spirituality, spiritual cerem onial practices psychological needs issues of trust due to prior history of mistreatment and its impact on health care access; communication unique to culturally specific tribal populations (Harjo, Burhannstipanov & Lindstrom, 2014) and the belief that many Natives ascribe to that wellness (Locust, 1985), a belief which underline s Natives wanting and needing to be responsible for their own health. Objectification One of the major criticisms of modern Western medic ine is its objectification of the p atient (Timmermans & Almeling, 2009). Objectification means to present as an object, especially of sight, touch, or other physical sense; make objective; or to externalize ( Merriam Webster 2014). This is a source of co ntinual conflict between The Native worldview takes a holistic approach and does not see the ill person separate from the whole of their environment (Garrett & Garrett 19 94). Adversarial Western medicine has an adversarial approach to illness in the form Contrary to this conceptualization a Nati ve American worldview would see il lness through a lens of relationshi p. Native American cosmology would support a different view of the world; one in which the doctor forms a relationship with the whole life world

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140 of the p atient including sickness. This is best understood as a loss of ha rmony within the individual family and tribe (Duran, 2006 ). Scientism. In addition to confronting, and quite possibly repressing their personal reactions to racism, Patient Navigator s had to negotiate the compartmentalized scientism of Western medicin e. Scientism is characterized by the style, assumptions, techniques, practices, and such, typifying or regarded as typifying scientists This rigidity was explained by Thomas Kuhn (1962): t is a criterion for choosing problems that, while the paradigm is taken for granted, can be assumed to have solutions. To a great extent these are the only problems that the community will admit as scientific or encourage its members to undertake. Other problems, including many that had previously been standard, are rejected as metaphysical, as the concern of another discipline or sometimes as just too problematic to be worth the time (p.37). An example of scientism and the inherent conflict ca n be underscored by the challenges with culture that health researchers struggle with commonly in their research. The Consortium of Social Science Associations (2014), through a panel review, gathered some of the most frequent challenges. The panel ident ified the Scientific Challenges in the Use of Culture in Health R esearch : 1. It is inadequately theorized and inconsistently applied. 2. Lack of clear definitions, measurable constructs and conceptual models of how cultural processes inte ract. 3. Cultural groups are defined devoid of their historical, geographic, social and political context, and influence of these contextual factors on their access to resources and social positions in societal power hierarchy. This is often unrecognized i n how various populations are identified. It assumes that these groups are homogeneous, despite the knowledge that geographic differences make a difference in who the populations are and how they express cultural variations. 4. The dynamic nature of cultur e is rarely reflected in most studies. It is usually a static 5. Recognition of the role of culture in shaping the nature and conduct of the scient ific process and its relationship to research participants is lacking.

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141 reality and the salient domains, such as selfhood, family, fairness, and well being is unpro ven and should not be assumed. 7. The use of simplistic variables of race and/or ethnicity or ancestry to represent culture is simplistic and inadequate. 8. Heterogeneity within the group of focus should be also explicitly demonstrated in the description o f the study sample. 9. A contextual focus of the individual without the historical, political, and social environmental circumstances of the individual group will miss the salience of culture within any population of interest. 10. Challenges 1 9 contribut e to the inability to effectively address health disparities. Health Behavior and Social Sciences Research, June 2, 2014, p. 2) It is within these strict and unyieldi ng boundaries that Navigator s and others who work with AI/AN populations negotiate for their clients. Indian Health Service The beginnings of the Indian Health Service started around the 1800s under the Department of War. Under this department, it was the role of Army physicians to contain the spread of infectious diseases like small pox and measles at military outposts. Starting in 18 32, the federal government bega n a trust responsibility, agreed to by treaties, to provide AI/AN with housing, education a nd healthcare. This government responsibility was in exchange for natural resources and land. Under this agreement, the Indian Health Service (IHS) began its task of providing comprehensive and preventive health care to AI/AN. The Indian Health Service i n its present form was established by the Department of Health Education and Welfare in 1955 (now named the Department of Health and Human Services [DHHS]) (See Appendix D for IHS map). The mission of IHS is to provide services such as medical treatment including preventive services and wellness care with a focus on community (US Dept. of Health & Human Services, Indian Health

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142 Services, n. d.). Health care for AI/AN continues f orward under this structure today, a l beit with some modifications such as in creased tribal control of healthcare programs, functions and services and improved IHS integration with programs such as Medicaid and Medicare. The IHS has improved the health of AI/AN mostly in the areas of prenatal, infant, c hild and youth care, as wel l as with infectious disease. However, IHS is an increasingly complex system. IHS provides very limited services to reservation residing AIs and even more limited services to those who choose to live near urban areas (Harjo, Bur hansstipanov & Lindstrom, 2014). Also, services at many of these IHS facilities, especially in urban areas, may not be clinics in the truest sense. Denver Indian Family Resource Center (DIHFS) a facility in the Denver metro politan area, one with which the research er is familiar is a clinic partially funded by IHS. DIHFS provides limited services but is not a full clinical setting. DIHFS does provide well baby, diabetes and other programs, but importantly, not cancer care (Harjo, Burhansstipanov & Krebs 2014 ). DIHFS has no t provided clinical services since the 1990s (Kaur, Burhansstipanov & Krebs, 2013 ). This is not unique to DIHFS, since direct cancer treatment is not provided by any urban Indian program in the United States (Harjo, Burhansstipanov & Krebs, 2014). IHS meet s a maximum of 60% of the health needs of AI/AN communities due to funding and is the most underfunded health related program in the US falling behind all other health related programs ( Kaur, Burhansstipanov & Krebs, 2013; Workgroup UNTBF, 2011, N at ion al Tribal Budget Recommendation for the Indian Health Se rvice, Fiscal year 2013 Budget ).

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143 The IHS continues to lag behind other programs such as Medicaid and Medicare in their funding. IHS has struggled with funding its programs historically and is increasingly financially constrained. Funding for IHS is lower when compared with Medicaid recipients and other recipients of federal health care including federal prisoners (Harjo, Burhannstipanov & Lindstrom, 2014). For example, Medicare spending per beneficiary was $11,018 (2009); Veter a ns medical spending per user was $7,154 (2010); Medicaid spending per enrollee was $ 5,841 (2008) ; while Indian Health Service was a combined sum of $ 2,741 for medical care and $ 607 other (US D epartment of Health and H uman Services, N ation al Tribal Budget Formulation Workgroup, 2011). This lack of funding for AI/AN patient s is an on going problem for the IHS healthcare system. For example, in the Indian Health Service, only 55% of the per capita health p atient care fu nding was allotted to p atient s in the IHS system in 2009 (IHS, 2009), thus Tribal Nations must find sources external to IHS CHS to cover ~45% of uncovered expenses. In addition to chronic underfunding of IHS, p atient s are also burdened by the fact that IHS is a payer of last resort, contrary to claims by Medicare and Medicaid that they are the payer of last resort. According to Ralph Forquera, MPH, Urban Health Institute: ent for residency (just to qualify for contract care). For those trying to access Medicare or Medicaid, the NPN [ Native Patient Navigators ] and the p atient most AIs have to apply 2 3 times and explain how IHS is unable to provide cancer care for them. This process averages 3 months (Harjo, Burhan stipanov & Lindstrom, 2014, p.418 ). A payer of last resort is defined as an entity that will be paid after any o ther primary programs have been billed. Discretionary clauses of an insurer, according to the Texas Office of Public Insurance Counsel (2009), give the insurer wide discretion to

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144 fits. These issues complicate the payment for health care for AI/AN with serious illness including cancer. Part of the reason for the chronic underfunding of IHS is that it is not considered an entitlement program similar to Medicaid and Medicare: An e ntitlement means that the government defines eligibility of a program and the services that are covered, and pays for the cost of those services to the eligible population. If the services cost more than the budget for a year, then Congress does a supplem ental appropriation to cover cost overruns. Medicaid and Medicare are both entitlement prog rams (Dixon, Mather, Shelton, & Roubideaux 2001, p.105) This lack of being considered an entitlement program continues to be problematic for the health of AI/AN. Unfortunately, Native Americans are considered to be the smallest minority group and are generally not given consideration in political programs or agendas. AI/AN health falls consistently below the national average. Cancer is an elder affliction and given limited hard choices, most Tribal Nations and Indian clinics in urban areas focus their funds on protecting the health of the future or the next generation. Because of these unfortunate realities c ancer and elder care in general remain a low prio rity among several tribes and urban Indian clinics (Burhansstipanov, 2000). Moreover, although American Indians live in all 50 states, IHS has preventative and some comprehensive healthcare facilities that exist in just 35 states, and is charged with prov iding health care services to individuals belonging to the over 565 federally recognized tribes (IHS, 2014) Additionally, medical benefits can vary from tribe to tribe for this complex health care system (Dixon, Mather, Shelton, & Roubideaux, 2001). Kau r, Burhansstipanov and Krebs (2013) note:

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145 Federal agencies and subsequently tribal Nations and urban Indian programs refer to the AI/AN supported. Each component of th e system has unique funding streams and systems of governance. IHS is predominantly funded by annual Congressional appropriations with some additional funding in the form of third party revenue. Congress also appropriates funding to Tribal and urban Indi an programs but for those that are within the P.L. 93 638 independence, the local organizations control where and how monies are expended (p.46). Kaur, Burhansstipanov and Krebs (2013) also note on the limitations of the Indian Health Care Improvement Act (PL 94 437), an act that was designed to improve health care for AI/AN: The Indian Health Care Improvement Act (P.L. 94 437). Passed in 1976 addressed the health lth 36 urban Indian health programs in 21 states receiving Title V IHS funding; They receive a small fraction (~2%) of the overall IHS funding, despite Cen sus data documenting that approximately two thirds of AI/AN have been living in urban settings since the 1980s. Half of these monies are specifically allocated for alcohol and drug prevention, control and treatment programs. Since the latter 1990s, less than half of the urban Indian programs provide screening to local AI/ANs and the remaining refer AI/ANs to other clinical settings for cancer screening. Urban Indians diagnosed with cancer are referred to cancer centers and hospitals typically through Con tract Health Services, Medicaid and Medicare. N ation ally, there are only 36 urban Indian programs partially supported by prior IHCIA. Many of the clinics that are located in 21 states do not provide more than limited clinical services. Thus, AI/ANs expe healthcare provided (p. 46) Co m m unity support has occurred with IHS, which have led to backing of initiat ives such as the Medicine Man Training Program (Bergman, 1973 ). This support is the result of the recognition by the IHS that Native healers and Indian medicine are an important part of the AI/AN community. These programs with in the community serve as a way for Native people to incorporate an element of Indian medicine in a Western medicine format. Importantly Native healers in these initiatives also serve as critical liaisons between Western medicine and Indian medicine but there continues to exist pr evalent limited funding, and little to no funding for rural programs The use of IHS will continue to be challenging in the future as the AI/AN population continues to grow and inflation continues. The IHS and its funded programs

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146 are increasingly fin monetary support (Dixon, et al., 2001). This will also mean a more complex system for p atient s. A greater reliance on third party sources will be a direct result of this funding disp arity. Contract Health Service care especially those with cancer. Contract Health Services are outside providers that AI/AN with serious or unusual medical illness are gener ally referred to using a complicated health care referral system by Indian Health Services (IHS). Indian Health Services contracts with private providers for services not available in HIS. Although many tribes have assumed more control of the delivery o f health care services from IHS since the 1990s, because of economic and other reasons, typically cancer care remains only available through Contract Health Services. Harjo, Burhansstipanov and Lindstrom (2014) comment on Contract Health Services: IHS cl inics on reservations have limited staff, services, and equipment. Therefore, AIs are referred out of the IHS system when they are diagnosed with cancer or other serious disease and ed and rural tribal clinics only provide ambulatory care service and rely on local hospitals for routine screenings, such as mammograms, colonoscopies, and other cancer related tests. Once diagnosed, the p atient is then referred to a treatment center or f acility from a few miles to hundreds of miles away through CHS. The IHS has no oncologists or similar types of cancer specialists on staff (note: Alaska Native Medical Center provides the only oncologist within the IHS system (p.417). Cancer treatment, wh ich by IHS categorization, is considered specialty care, can be purchased from non federal providers through a contractual arrangement with the IHS. However, this care m ay be problematic for AI/AN, who have cancer to acquire. First, this service is only available to IHS beneficiaries in certain United States counties. Second, residency complicates this matter; as more AI/AN leave reservations and become

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147 urban residents, services acquired through the IHS become less accessible. As a result, many AI/AN a re forced to acquire their own c are for an abnormal cancer test or for cancer treatment or they go without necessary health care. Because of these issues, for many AI/AN cancer treatment remains difficult to access and if uncovered by IHS or another pla n, then unaffordable. Harjo, Burhansstipanov and Lin dstrom (2014) as well comment on the complications of using Contract Health Services (CHS): The United States Congress determines how much money is allocated to the IHS. CHS budget and IHS policies ar e restricted by the availability of those monies. This creates an incredibly frustrating situation for both providers and p atient s. As monies are available, the AIAN p atient s are provided travel and accommodations only for themselves to the specified hea lth care setting that has a contract with IHS to provide the recommended tests and procedures. The frustration from this system is that many American Indian cancer p atient at a time until their priority is raised to a level that allows them to access appropriate follow up cancer care. Finally, in urban areas, health care providers are misinformed and believe that their AIAN patient s can get funding for their cancer care in the urban area through the IHS. NPNs [ Native Patient Navigators ] must explain this over and over, and then they work to find and develop funding for their patient s utilizing resources for all Americans, rather than through the IHS (p. 417 418). Accordi ng to Burhansstipanov and Hollow (2001), because cancer survival is dependent on early diagnosis and survival, contracting for health services and in particular, cancer care, can be problematic. Contract Health Services may have depleted funds during the latter part of the fisc al year. Also, priorities may, or may not vary when money is short to prioritizing life and death emergencies rather than diagnostic tests or treatment for cancer. This situation may be responsible for delays and referrals for follow up care for cancer patient s. Delays in acces sing diagnostic and treatment services are cited as one of the numerous reasons for the continued poor survival from cancer for AI/AN populations.

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148 Indian Self Determination and Education Assistance Act of 1975 (Public Law 93 638) This law has affected the providing of health services to AI/AN populations. Tribes assume the control as well as management of healthcare programs from the IHS Increased flexibly of healthcare development has been one outcome of this law. Tribes now have the opti on either to compact or contract with the IHS to help deliver health service s by utilizing pre existing IHS resources (funding is determined by formula based shares tables, or IHS sites), grants, third p arty reimbursements, as well as other sources (Kaur, Burhansstipanov & Krebs, 2013). These l aws are leading the way, nonetheless AI/ AN health and health funding have a long journey ahead toward equity. AI/AN in the United States have endured a legacy of injustice and discrimination with multiple n egative manifestati o ns, including alarming health disparities and inadequate health care (Espey et al. 2014, p. e 1). The next topic of focus is the approach and the conceptual framework for this study. Study Approach: Phenomenological Approach A phenom interactions with a n experience to uncover their structures of meaning This meaning occurs within their personal engagement with the chosen phenomenon (Creswell, 1998; Moustakas, 1998; Polkin ghorne, 1989). Discovery is crucial to the tenants of a phenomenological approach (Giorgi, 1985 a; Giorgi, 1985 b ). At the heart of the phenomenological approach is a type of methodology that values a path of discovery rather than a method of verification (Giorgi, 1985 a; Giorgi, 1985 b ) At the focus of this discovery is the epoche or the conscious inhibition by the researcher of previous knowledge and experience as well as preconceived ideas of how

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149 things are (Moustaska, 1994). Phenomenology is genera lly used when there is little or very little known about the subject. The desire of a researcher using a phenomenology appr oach is to uncover and arrive at ). To reach at this point or knowledge and preconceived ideas are set aside. This is done by consciously inhibiting and using the epoche idea (Moustakas, 1994). meaning of the lived experience. The tradition of phenomenology is particularly well suited for focusing on first perceptions given a certain environment (Moustaskas, 1994). Because of these factors, the phenomenology approach is a good f it for discovering the lived experiences of Native Patient Navigators Phenomenology is an appropriate fit Phenomenology is in particular, a good fit because of its emphasis on description and experiences. These ideas have primacy in a phenomenological situations of basic research, description should have epistemological primacy because of its cons comprehensive descriptions that provide the basis for a reflective structural analysi s that 4).

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150 Th eoretical Framework Amerindian circles of l earning American Indians and Alaska Natives (AI/AN) participate in systems of education that have been in place for generations. These systems of learning involve teachers sharing indigenous knowledge through c ircles of learning to instruct both children and adults. Elders, the keepers of sacred knowledge, as well as other knowledgeable individuals have in years past up and do today take an active role to educate members in specific tribal ideologies and practi ces around a broad range of subjects. In what are called sacred circles of learning, the duty and the responsibility of the tribal community to educate and share critical knowledge among its members is shared. This important concept of AI/AN com munities is shared in Chapter I Sociocultural t heory Current views of sociocultural theory draw mostly on the theorist Vygotsky (1986) as well as other more contemporary theorists such as Rogoff (2003) and Wertsch (1991, 1998). The sociocultural perspective ( Tharp & Gallimore 1988) explains that human development especially higher order functions, develop from processes of social interaction. Vygotsky would argue that in order to understand higher order development, the observer must look outside of the ind ividual and examine the social world in which the individual develops. Vygotsky, according to Kublin et al. (1989) would also describe learning as intrinsically embedded within a social context and as occurring with people, objects, and events in the surr ounding environment. Using this framework, th e individual must participate, since learning is not left only to the individual activity. Vygotsky, according to Kublin et al. ( 1989 ) would describe learning as intrinsically embedded within a social contex t and as occurring with

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151 learning does not take place without a sociocultural context. Sociocultural approach and its connection to apprenticeship Rogoff (2003), usin g a sociocultural approach suggests that in observation of development, there are three planes of analysis. Rogoff names these developmental processes as apprenticeship, guided participation and participatory appropriation. These in turn, correspond to p such as Girl Scout cookie sales, as the unit of analysis, which in turn, uses dynamic and active contrib utions from social participants, as well as individuals. This analysis includes historical traditions and methods, as well as their transformations (Rogoff, 1994, 2002, 2003, 2008). (in all its diversity) are internally related: that is, it will be impossible to render any one of these 39). This interdependency is described by Rogoff in her observati on of development in these three planes of analysis. Likewise, according to Rogoff, one can consider an individual assuming they are separate. The individual and the so cial and cultural environments in which they may be involved are intrinsically related to the others, as is participation (Rogoff, 1994, 2002, 2003, 2008). Sociocultural ap proach and its connection to a community of l earners. A community of l earners is a related concept. The theory regarding a community of l earners ascribes to the concept that when engaged in shared activities with others,

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152 learning occurs (Brown, 1992; Brown & Campione, 1994, 1996; Palincsar & Brown, 1984; Rogoff, 2003). The concepts of both apprenticeship and communities of learners stress the importance of ongoing joint activity, relationships and identity. Critical t heory Critical theory is a school of thought that emphasizes a critique of culture and society by utilizing know ledge from two different disciples; the humanities and social sciences Critical theory philosophy. The first path that of sociology, is where critical theory began as a literary criticism. Within thi s area it was an umbrella term to describe conceptually a theory that has its basis in both reflection and critique, and according to Max Horkeheimer seeks Horkheimer 1982, p. 244). In philosophy, critical theory evolved from the teachings of the neo Marxist Frankfurt school, which existed in Germany in the 1930s. Through this second path, critical theory assumes that ideology is the principle obstacle to human liberation ( Guess, 1981) This original conceptualization of critical theory came from the critical methods of Karl Marx and Sigmund Freud ( Guess, 1981) More contemporary Critical T heorists draw on the second generation of Frankford school intellectuals, and notably the work s work, along with other modern day Critical T heorists, critical theory has progressed from its beginnings within German idealism, to where it stands today, closer to American Pragmatism ( Outhwaite, 1988). Because of th is veering away from the founding Marxist concepts, and the combination with other philosophic and sociologic traditions, Critical T heorists have been the subject of revisionism by Classical, Orthodox and

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153 Analytical Marxists ( Outhwaite, 1988). How ever, the basic premise of critical theory as a critique of society and path toward liberation remains the same. Critical race t heory Critical race theory critical theory. Critical race theory reflects on ethnic epistemologies and racialized discourses of previous critical legal studies (Ladson Billings, 2004) The underlying premise of this critical theory, legitimacy of oppressive structures in American s 264) Critical race theory seeks to shift the power differential in racial hegemony by giving voice to underrepresented minorities (Ladson Billings, 2004). Storytelling is one of the ways the critical race theory challenges the status quo an d racial oppression. This takes the form of analyzing and critiquing the myths, received wisdoms and presuppositions regarding race from the common culture that ne Starting with the concept tha t culture is, in fact, the constructor of its own social reality, critical race theory seeks to expose the self serving interest of the dominant culture ( Delgado & Stefancic, 2000, p. xvii) Because of this self interest agenda which is socially construc ted, especially in regards to (p.xvii), common culture xvii). Counter storytelling in critical race theory challenges the common culture belief systems to forge a different story. Critical Race theorists set out to shape a different reality ( Delgado & Stefancic, 2000, p. xvii) Storytelling using the critical race theory lens has particular interest in this manuscript and in relation to truth telling. Using a c ritical race theory paradigm the

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154 represent the facts. Ladson qualitative research is that it can be used to demonstrate how the same phenomenon can 968). Because of this difference, surrounding a phenomenon. Ladso n Billings (2004) notes, however, that this storytelling needs to be sought with a critical focus, because information might be observed from within the lens of the dominant society, and underrepresented voices may be diminished and text may be altered (La dson Billings, 2004). The storytelling aspect of critical race theory is a good fit with the oral tradition. The importance of oral tradition and storytelling is fundamental to Native ways of being. By combining these two traditions, storytelling can involve unpacking of stories of racism and oppression within a culturally congruent Native way of communicating, 1994, p. 225). Tribal critical r ace t heory. Trib al critical race t heory (CRT) has its roots in critical theory and critical race theory The paradigm of critical theory seeks to liberate individuals from the circumstances that enslave them ( Horkhe imer, 1982 ) Critical race theory continues the discussion of the liberation of people taking the critique of critical theory further to reflect on the relationships between power, race and racism ( De lgado & Stefancic, 2012 ) Tribal critical race theory in turn, extends the discussion of critical race theory by acknowledging the distinctive status of Native Americans within the confines of tribal history Tribal critical race theory acknowledges t hat the Native

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155 American has a n exclusive historical, political, legal, social, and racial status ( Abercrombie Donahue, 2011 ). From a tribal critical race theory perspective, the dismal healt h status of Native Americans is influenced and negatively continued by United States health institutions and policies of public health that incorporate legacies of colonization, racism, striving for material goods and imperial ideology. This legacy began with the seizure of Native lands, continued with efforts forcefully to assimilate Native Americans, and persisted with conti n uous cultural genocide in the forms of attempts to annilate Native knowledge systems, religious beliefs and practices, as well as l anguage (Brayboy, 2005). According to Brayboy (2005), the tenents of tribal critical race theory and its application to US society and institutions, and by inference, US health care systems and public health, are as follows: 1. Colonization is endemic to s ociety. 2. United States policies toward Indigenous peoples are rooted in imperialism, White supremacy, and a desire for material gain. 3. Indigenous peoples occupy a liminal space that accounts for both the political and racialized natures of our identities 4. Indigenous peoples have a desire to obtain and forge tribal sovereignty, tribal autonomy, self determination, and self identification. 5. The concepts of culture, knowledge, and power take on new meaning when examined through an Indigenous lens. 6. Gover nmental policies and educational policies toward Indigenous peoples are intimately linked around the problematic goal of assimilation.

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156 7. Tribal philosophies, beliefs, customs, traditions, and visions for the future are central to understanding the lived re alities of Indigenous peoples, but they also illustrate the differences and adaptability among individuals and groups. 8. Stories are not separate from theory; they make up theory and are, therefore, real and legitimate sources of data and ways of being. 9. Theory and practice are connected in deep and explicit ways such that scholars m ust work towards social change (Brayboy, 2005, p. 429). In American society, colonization and racism are endemic. This includes United States public health institutions and their policies that affect AI/AN public. Colonization in this context refers to Euro American thought, knowledge and the resulting power structures that dominate most of American society. Colonization and the inherent racism that follows is so incorporat ed into the status quo, American society, and its social that it is often hard to detect and therefore remains invisible. Because of the privile ge of the dominant discourse, other cultural views are dismissed and an active eff ort is made to terminate and replace differing cultural views by the dominant society. Using a Tribal Critical Race lens, this theory seeks to critique and disrupt public health models that continue to impose colonization on Native Americans. United Sta tes policies are rooted in imperialism, material gain and issues of White supremacy and by inference, United States health institutions and public health policies are as well. One could extend this argument to include the predominance of the dominant disc ource incorporated into European American health institutes and conceptualizations

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157 of health. This prevalence of the dominant European American view of medicine is an example of how colonizat ion and racism dominate present day society in health institutio ns and its social structures, which are often invisible to many. The lack of the tolerance of differing cultural views on illness and wellness limits the option of t he use of Native traditional medicine thus restricting the conceptualization of what cons titutes treatment (Is it a cure or is it a return to harmony?). A tribal critical race theory perspective would challenge the assumption that European American medicine and its view of wellness and illness is superior. It questions whether the treatme nt of illness using an European American view of medicine is inherently superior to tribally based medicine and/ or treatment. It considers the implications of differing perceptions about the nature of positive outcomes for a patient A tribal critical r ace theory critique would postulate that public health institutions and the sole acceptance of European American medicine and its views may play a part in undermining tribal self determi nation and sovereignty. Health care is an affair of tribal soverignty, secured by a government to government treaty. Tribal sovereignty is the inherent right of AI/AN peoples to control their affairs, lands and natural resources within tre atment. Tribal critical race theory respects these concepts of tribal soveri gnty. It intentionally privile ges Native ways of knowing and being in every aspect, including health and wellness Tribal critical race theory serves to reverse the trend of p rivileging the dominant discourse and is a valuable, important analytical framework for exploring

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158 race racism and power structures and the systemic oppression that continue s to a ffect Native American health. Community of p ractice Communities of pract ice is a concept developed by Jean Lave and Etienne Wenger (Lave & Wenger, 1991; Wenger 2000). A community of practice can be defined as a collection of like minded people who gather on an on going basis in some common endeavor. For example, a hobby gro up can be a community of practice But, an important qualification for a community of practice is that this group does not merely meet on the basis of geography or shared characteristics Communities of practice are not defined solely by proximity such as a neighborhood group. What distinguishes a community of practice is that the members of the group engage in a sustained shared endeavor. This on going shared group practice is vital to defining a community of practice In the process of sharing in a mutual joint activity, the group develops group characteristic ways of doing things, as well as shared values, views, power relations and ways of talking. Additionally, identity plays an important role within the group. Communities of practice organiz and knowledge which gives group members a sense of identity and engagement in joint enterprise. Participants additionally situate themselves within the group and later in relation to th e larger so cial order (Lave & Wenger, 1991). Several conditions are important to communities of practice For example, sharing an experience over time and sharing a commitment to a shared understanding are intrinsic to communities of practice Members of the grou p have mutual sense making about what they are doing, about what participating in the enterprise looks like, even how

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159 they relate to other communities of practice and the world outside their group (Lave & Wenger, 1991). Etienne Wenger (1998) describes th ree dimensions of a community of practice The first is what the group is about for example as a joint enterprise, as that perspective is understood and continually renegotiated by participants. Second, members participate in mutual engagement and this in turn, binds members into a social identity. Third, a shared group capability is produced, such as a shared repertoire of resources which are available to each member, such as artifacts, routines, vocabulary and styles developed by the group over time Communities of practice also develop membership relationships for the group. After engaging in a shared practice over time, group members develop and are involved in a set of relationships (Lave & Wenger, 1991). From these relationships, communities de velop and continue forming while centering on things that matter to people (Wenger, 1998). To function, a community of practice needs its own resources, shared repertoire and tools. A community of practice documents that carry community shared knowledge. Functioning as a community of practice involves sharing to a significant extent among members (Wenger, 1998). Additi onally, contrary to just a group having a shared skill or technical knowledge, communities of practice are undertaking some joint task. In this way they carry forth their task in using these group resources, tools and a shared repertoire. The group als o involves a type of practice along with shaping an identity among members, for example, ways of doing and approaching matters that are shared to a large

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160 take on b igger or more complex activities and the trusting distinguishing relationships that bind the group are important d efining considerations (Lave & Wenger, 1991). Legitimate peripheral participation and situated l earning. These group relationships additi onally play an important role in knowledge acquisition. Lave and Wenger (1998) suggest that these relationships are critical to learning. In this context, rather than looking to learning as the acquisition of certain types of knowledge, the authors situa te learning in terms of social relationships and situations of co participation. which ) concerns 49). This par ticipation is referring not simply to localized events of specific engagement in certain activities with certain people, but to a broader encompassing process of being active participants in the practices of these social communities and constructing the identities in relation to these communities (Wenger, 1999). Learners involved in communities of practice vary in their participation. This participation was illustrated by Lave and Wenger (1998) by noting apprenticeships of Vai and Gola tailors, US Navy quartermas ters, non drinking alcoholics in Alcoholic Anonymous, meat cutters and Yucatec midwives. Members of the group initially join the community and learn at the periphery. As they become more confident and competency gains, the individuals move to the center of the community. This learning is described by the authors as a process, a process of social participation influenced significantly by the situation

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161 As learners participate in communities they become masters of skill and knowledge. This in turn, req uires newcomers to move toward fuller group participation and the community socio cultural practices. Lave and Wenger ( 1991 ) coined the concept of Legitimate Peripheral Participation which provides a way to talk about identities of newcomers and old time rs, activities, artifacts, and communities of knowledge and practice. The meaning of learning is approached through the process of journeying to a full participant in a practice. This practice incorporates the acquisition of knowledgeable skills (Lave & Wenger, 1991). situatedness is more than just experiential learning or learning by doing by members. He likens the concept to people being full group members in the world and moreover, gen erating from talk as a substitute for legitimate peripheral participation; it is to learn to talk as a key to legitimate per Wenger, 1991, pp. 108 10 9). According to Tennant (1997), learning from this vantage point is focused on the importance of learning in context. Situated learning depends on two points: It makes no sense to talk of knowledge that is decontextualized, abstract or general. New k nowledge and learning are properly conceived as being located in communities of practice (p.77). Also of note is that community of practice t heory is not without its limitations. Specifically, Lave and Wenger have bee n criticized for romanticizing commu nities of practice and omitting important broader contexts. For example, they do not critique and

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162 analyze how their omission of a range of broader topics such as access, power relations, public accountability and public knowledge, could affect groups (T ennant, 1997). Learning is t hrough the r elationships among p eople. The concept of community of practice and the wider conceptualization of situated learning has significant implications. Referencing learning in terms of a broader context and the importa nce of relationships, McDermott (in Murphy 1999, p. 17) notes, Learning traditionally gets measured as on the assumption that it is a possession of individuals that Learning is in the conditions that bring people together and organize a point of contact that allows for particular pieces of information to take on relevance; without the points of contact, without the system of relevancies, there is not learning, and t here is little memory. Learning does not belong to individual persons, but to the conversations of which they are a part. their dynamics, including a point of contact and a system of relevancies of which th ey are a part Communities of practice are sometimes very formally organized and at other times they are organized informally. But, always members are joined together in activities, identity and importantly, by what th ey have learned through their shared engagement in activities (Wenger, 1998). The next topic of attention is border crossing. Border Crossing Border c rossing e ducation. Boundary crossing examples in education have important implications for society. R ather than viewing competence as residing within a person and outcomes as the ability to perform a certain amount of discrete skills ; sociocultural theorists have argued for some time, that the ability to have competence (or not) is socially constructed an d involves an individual becoming a full participant in the existing culturally defined practices of an activity system or a community of engaged persons (Jenkins, 1998). There exists an increasing amount of literature about both

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163 formal and informal lear ning contexts that describes elements of social contexts that less attention has been given to the suggestion that there are processes in which persons cross boundaries to gain competence in multiple contexts (Walker & Nocon 2007). Walker and Nocon (2007) note the importance of the development of boundary crossing competence which they define as the ability to function competently in multiple contexts. In their study of low socioeconomic status and immigrant students, the authors found that: opportunit ies for nondominant students to develop boundary crossing competences through participation in expanded, horizontal rather that hierarchal systems of what Moll and colleagues Walker and Nocon (2007) describe the wa ys that competence can be achieved in situated practice and can in turn, contribute to competence in related practices through identity work. This work intertwines both achieved and potential forms of competent engagement utilizing repertoires drawn from differing sociocultural contexts. In their framework, boundary (Van Oers, 1998) and boundary processes facilitated by boundary objects and cultural brokers. Walker and Nocon (2007) original inquiry concerned designs for learning environments that could provide opportunities for enhancing boundary crossing competence by connecting related practices. This connecting could in turn, provide orks relev (Eisen hart & Finkel, 1998, p. 8). Using such learning environments, novices are afforded

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164 Whitmore, 1993). Using their example of an a fter school arts and media program and a technology group, Walker and Nocon (2007) document two cases of the development of boundary crossing competence facilitated by cultural brokers who supported immigrant youth as they moved into new contexts and moved from access to engagement in those new contexts. Native Patient Navigators in providing access to and the possibility of engagement with new contexts, like Western medicine, are cultural brokers as well as border crossers. They cross the boundaries of Native healing and ways of knowing and Western medicine. Additionally, they scaffold or support others, their Native clients, in crossing those borders as well. Border c rossing t ranslation. Border crossing can mediate traversing across borders of th ings as complex as culture and race by helping to translate each side to the I am a border woman. I grew up between two cultures, the Mexican (with a heavy Indian influence) and the Anglo (as a member of a colonized people in our own territory). I have been straddling that tejas estiza, and element (Anzadula, 1999, preface ) Here, Anzadula (1999) speaks to the cross ing of borders of race and culture, as well as language and to the physical crossing of the geographical border of United States and Mexico. Those who live biculturally, as Native Patient Navigators who cross both ways from the Native worldview and Weste rn medicine understand how to navigate these metaphoric borders, language and physical borders (as in reservation boundaries). It is in this space that true translation can begin, because those who exist in both worlds can translate from either side of th e border becoming proficient in translating culture, language and perspectives.

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165 Border c rossing m ediation. according to Kurt Lewin ( cited in Rychlak, 1981). This space might be described as a developing psychological All that might interact and dimension or life space. It is in this life space, Lewin ( cited in Rychlak, 1981) explains t hat individuals tend to try to organize, interpret, and may further enact their experience. can otherwise be constructed distinctively and as patterned. A lso a ccording to Lewin ( cited in Rychlak, 1981) it is within this life space that there exist various assigned regions. These regions are in turn, differentiated by borders, which in turn, can vary in their permeability, acting to let some things in, while at times, excluding others. It is within this life space that the beginnings of crossing borders can begin. Individuals negotiate within their own life space and this in turn, orientates oneself toward behaviors in their greater world. Border c rossing a dvocacy. It is also from this position of life space that one can engage in the knowledgeable pathway of advocacy, when one knows what it is like to exist on either side of the border. Advocacy can be established from a knowledgeable framework of certai nty. Certainty of the experience of the other and real life experience forms a natural advocacy agenda and is a positive position gained from existing in the borderlands (Anzadula, 1999). Cultural border c rossing The idea of cultural border crossings was brought forward by Giroux in his 1992 book Border Crossings: Cultural Workers and the Politics of Education In his book on cultural workers, he contrasts modernist and postmodernist

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166 views on education and introduces an expansion on the idea of border crossing. A modernist approach to border crossing, Giroux remarks, defines the ideas of borders and locates people within those borders with regards to the political power attached to each location. Conversely, a postmodernism approach would encourage p eople to have multiple identities, for example by living in a world of border crossings, and living with multiple narratives that define reality (p.54). Cu lture is also defined by as: Although no single definition of culture is universally accepted by soc ial scientists, there is general agreement that culture is learned, shared, and transmitted from one generation to the next, other social regularities.1 5 Facto rs such as familial roles, communication patterns, beliefs relating to personal control, individualism, collectivism, and spirituality6 and other individual, behavioral, or a given group if they have special meaning, (Kreuter, M. W., Lukwago, S. N., Bucholtz, D. C., Clark, E. M., & Sanders Thompson, V. (2003). people might be prone to recognize c ultures t hat are very different from their own what they may not be as quick to recognize is that they come across a number of dif ferent cultures every day in their maze of daily interactions (Cobern, 1993; Jegede, 1995; Medvitz, 1996). For example peop le have the culture of home the culture of school the culture of peers including professional groups and an overarching culture which is determined by community. Also there are sub cultures and the dominant themes or genres within a culture itself. Thus border crossing from these different cultures may involv e crossing multiple social cultural as well as socio political borders. Crossing these borders can be tenuous. An example of border crossing can be taken from the field of education. Trawee k (1992) describes an example of crossing borders both social ly and socio politically in her anthropological study of a high energy physics community:

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167 A community is a group of people with a shared past, with ways of recognizing and displaying their differ ences from other groups, and expectations for a shared future. Their culture is the ways, the strategies they recognize and use and invent for making sense, from common sense to disputes, from teaching to learning, it is also their ways of making things a nd making use of them (pp. 437 438). In this study, Traweek (1992) exposed some coping behaviors by Japanese physicists as they negotiated the transitions between the high powered international physics community and the sub culture of their national Japa nese physics community. She discovered that risks, power, and subjectivity were all interwoven with ways that the Japanese physicists were pressured to conform to the international physics community. As border crossers, educators, translators, mediators and advocates ; Native Patient Navigators occupy a hybrid life space. In order to understand that life space from the perspective of the Native Patient Navigators this study has used a phenomenological approach. Ethical Considerations for Working with AI/AN Communities Trust is always an issue with human research studies and in particular, with Native American populations. Native communities have become distrustful of researchers for several reasons. Historically, Native communities have been conside red objects to study, always to be viewed from perspectives other than their own (Chester, Robin, Koss, Lopez, & Goldman, 1994). Individuals doing research in Native communiti es can be seen as exploitive, only looking out for their academic degrees and ca reer goals while in the meantime, their research is carried out at the expense of Native people and their communities (Zinn, 1979). Keeping this in mind, LaVeaux & Christopher, 2009 has noted these important considerations for working in Native communit ies:

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168 1. Acknowledge historical experience with research and with health issues and work to overcome the negative image of research. 2. Recognize tribal sovereignty. 3. Differentiate between tribal and community membershi p. 4. Understand tribal diversity and its im plications. 5. Plan for extended timelines. 6. Recognize key gatekeepers. 7. Prepare for leadership turnover. 8. Interpret data within the cultural context. 9. Utilize Indigenous ways of knowing ( LaVeaux & Christopher, 2009 p. 7) To address this issue of work ing with Native communities I strived wherever possible and applicable to honor these considerations for working in AI/AN communities. For example I was present in the community to increase transparency planned for the time needed to establish trust a nd credibility and respected gate keepers of the community. I also worked within the confines of the historical social political history and local circumstances of AI/AN individuals and communities. I also utilized Native co nstructs in the form of Nat ive ways of knowing and Amerindian circles of learning with the approach to this study. Conclusion This literature review has explored the world of Native Patient Navigators from their history and origins as an adaption of the original Freeman Model of p atient navigation , roles and professional practice. This review explored factors that may influence a Native Patient Navigator like

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169 location of the practice in the form of urban rural and reservation si tes and their influences on AI/AN identity to pressures in the form of bureaucratic institutions and administrative processes such as Indian Health Service s and Contract Health Services. Additionally cultural influences were explored such as the influe nce of culture within the area of cancer and Native conceptualizations of wellness and illness. Fundamental to these conceptualizations were Native healing tr aditions and Native ways of knowing and being This Native lens of medicine that includes ideas regarding balance and harmony was contrasted with a Western medicine lens including a toward disease. Using a critical eye in the form of critical race theory and trib al critical race theory Western medicine and public health from the standpoint of the privileging of Euro d socialization of medicine and advocating an agenda of race oppression white supremacy and a push for material gain. Finally understandings of learning and develop ment that resonate with Native ways of knowing including sociocultural theory communi ties of practice and communities of learners apprenticeship and Amerindian circles of learning were explored. These theories and concepts contribute to the conceptual framework that will be used to d iscuss the findings in Chapter IV Now we turn to Ch apter III Methodology.

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170 CHAPTER III METHODOLOGY knowledge means that we observe the natural world by looking for relationships between various things in it. That is to say ever ything in the natural world has relationships with every other thing and the total set of relationships makes up the na tural world as we experience it (Vine Deloria Jr. 1999 p. 34) The research design for this study was developed using qualitative met hods in alignment with a phenomenological approach. This study was conducted to examine the lived experien ces of Native Patient Navigators with health and cancer screening. The term Native Patient Navigator was used to describe a Native American who help s an individual in a Native American community in navigating the increasingly complex system of healthcare along the cancer continuum (Eschiti, Burhansstipanov, & Watanabe Galloway, 2012). Qualitative methods were utilized to collect data and a phenomenol ogy approach was employed. These data were analyzed using apriori and emergent categories to find the share d elements among the respondent s different experiences. Data consisted of in depth ethnographic interviews, detailed field notes and supportive d ocuments. The Native Patient Navigators interviewed for this study were employed in professional paid positions. A little over half of the Navigator s, though not all, were employed by community based nonprofit 501(c) organizations (14 Navigator s were n on clinic based). For this study, Navigator s were recruited from across the United States using a snowball approach with initial contacts occurring in conference and training or workshop settings. A total of twenty six Navigator s from both urban and rura l settings and representing fifteen tribes consented to participate in the study and were interviewed.

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171 Initially, the Native Patient Navigators were primarily from the Western and Central United States. This preliminary study sample then expanded, as rec ruitment continued, to include Native Patient Navigators from other states. These Navigator s and their experiences were eventually included from states as distant from each other as Florida and Alaska. P atient Navigation and Native Patient Navigators P atient Navigation has been defined as the employment of individuals trained to help others in navigating the healthcare system (Freeman, 2004). Patient Navigator s through their work with individuals, help individuals receive needed healthcare services an patient n avigation highlights his original conceptualization of this role: P atient n avigation is a strategy of employing trained individuals to assist others in navigating the health care system to rece ive needed education and services, a process by which an individual (i.e., Patient Navigator ) provides outreach and education, ensures access to screening examinations and guides patient s with a suspicious finding ( e.g. test shows they may have cancer) t hrough and around barriers in the complex cancer care system to help ensure timely diagnosis and treatment (Freeman, 2004 in Eschiti et al., 2012, p. 4) These services help to ensure access for communities experiencing cancer disparities as well as suppo rt for individuals diagnosed with cancer. Individuals can experience numerous barriers along each phase of the cancer continuum (Burg et al., 2010; Freeman & Chu, 2005 ; Strzelcyk & Dignan, 2001 ). The cancer continuum can be described as the non medical and medical trajectory of the cancer experience from screening to survivorship issues including prevention, detection, diagnosis, treatment and survivorship (NCI, n.d. ). A Patient Navigator can help others around and through barriers in the cancer care s ystem to help ensure timely cancer

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172 diagnosis and if necessary, treatment (Freeman, 2004). Thus, Patient Navigator s offer a unique way of addressing individual barriers along the cancer continuum. The success of patient n avigation with cultural groups is often dependent upon whether the intervention is deemed culturally appropriate (Edwards et al., 2010). The present cancer burden in Native communities, as well as the existing cancer incidence and mortality necessitate interventions to improve access to treatment and prevention services for AI/AN (Eschiti, Burhansstipanov & Watanabe Galloway, 2012). This chapter focuses on the methodological features of this Native Patient Navigator study. It summarizes the research study, the research questions, and t he design of this research study within the realms of the tradition of qualitative research and a phenomenological approach. The chapter also discusses the rationale why these traditions align with the original purpose of this study, which examines the li ved experiences of Native Patient Navigators The procedures for data collection and data analysis utilized in this qualitative addressed. Lastly, the issues of validity a nd reliability and elements important for research with Native communities are summarized. Purpose of the Study American Indians and Alaska Natives (AI/AN) have inherited a long legacy of insufficient health care and distress ing ly alarming health disp ari ties (Epsey et al., 2014). These health disparities include those related to AI/AN cancer disparities an d cancer burden. For example, b reast cancer is the most often diagnosed cancer and a leading cause of AI/AN Siegel & Jemal 2013; US Cancer Statistics

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173 Working Group, 2013). Although AI/AN women have an overall lower incidence of breast cancer than White women, AI/AN women are much more likely to be diagnosed at later stages and younger ages (Roubidoux, 2012; Wingo, 2008). Mor eover, for AI/AN and White respondents residing in Indian Health Service Contract Health Service Delivery Area counties (CHSDA), there is a significant difference in screening for breast cancer among AI/AN women older than 40 years. AI/AN women in this o ver 40 age group were generally overall less likely to have had a screening mammogram for breast cancer in the past two years when compared to their White women counterparts (67.8% vs 76.0%) and AI/AN men in all CHSDA regions except the Pacific Coast were less likely to have had a colorectal cancer screening test in the form of either a fecal occult blood test within one year or an endoscopy within five years (Cobb, Espey & King, 2014). Additionally, survival for AI/AN populations from cancer is low. Mor tality and Incidence Ratios (MIR definition below) were used to indicate a survival measurement for AI/AN women. According to White et al. (2013), overall, from 1999 to 2009, AI/AN wo m en had higher MIRs than White women (MIR for AI/AN women = 0.22; 95% Co nfidence Interval ( CI ) = 0.21, 0.24; MIR for White women = 0.18; 95% CI = 0.18, 0.19). This pattern was very consistent, regardless of population age group or region of the country Similarly for the years 1997 2006, short term death rates for all cancer s combined decreased for all ethnic and racial groups except for AIAN women (Edwards et al., 2010).

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174 Table 3.1: MIR : a Ratio for Understanding Survival Term Definition Incidence Rate of occu rrence or influence; especially : the rate of occurrence of new cases of a particular disease in a population being studied Mortality T he number of deaths in a given time or place Survival T o describe survival, a Mortality to Incidence Ratio (MIR) has been used as an indicator. According to Hbert (2009), the Morta lity to Incidence Ratio is a useful measurement of survival. MIR measures prognosis after diagnosis, and can serve as an important indicator of survival to illustrate racial and sex disparities of special populations such as those of high risk populations. Note. Adapted from Kaur et al., 2013 p. 45. These numbers are an indication of the cancer disparities and overall cancer burden that continue to exist for AI/AN populations. Native Patient Navigators offer one intervention to address the current aff liction caused by cancer that exists in AI/AN communities. This research study was conducted to give expression to Native Patient Navigators their work and their experiences along the cancer continuum. This study will also contribute to the current kno wledge surrounding cancer in AI/AN communities with regards to health and cancer through the experiences and the understandings of those intimately involved with these topics in AI/AN communities. Focus of Inquiry: Research Questions The approach of this study was based in phenomenological inquiry approach and grounded in Native ways of knowing and being Amerindian circles of learning sociocultural and critical t heories and the concept of border crossing The primary research questions guiding this st udy are: How does this sample of Native Patient Navigators experience and understand health and cancer? How does this

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175 sample of Native Patient Navigator see issues of stigma and historical mistrust around these issues? Related questions are: How do Nati ve Patient Navigators experience their roles within their communities and the larger society? What are their beliefs regarding cancer health and cancer screening? What are their beliefs around stigma and historical mistrust around these issues? How do the se beliefs affect their work? Approach: Qualitative Methodology and Phenomenology Qualitative research and phenomenological inquiry are tools that can give voice and visibility to the experiences of this sample of Native Patient Navigators These research traditions were chosen because of their ability to capture study participant lived experiences. This section describes the rationale for the design and positions the design in the traditions of qualitative methodology and phenomenology. This qualitative method best captures the deep complexity of the experiences of Native Patient Navigators and offers a rich exploration of these Navigator s individuals and communities. Research Paradigm The paradigm selected for t his study is focused on the discovery of new knowledge. The design of this research study and its research questions were exploratory in nature. Thus, the paradigm was centered on the process of inquiry, interaction and discovery of new knowledge. Qual itative Research Qualitative methodology encompassing a phenomenological approach best describes the overall framework for this study. A qualitative research investigation puts

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176 emphases on meaning of experiences. The qualitative research thus, with its attention on meanin g supports the focus of this study and its research goals (Creswell, 1998). Qualitative study designs can, at times, concentrate on the perspectives of the participants within naturalistic settings (Creswell, 1998). The ability to ca pture these perspectives in this manner may therefore lead to in depth inquiry. In depth inquiry with this group of Native Patient Navigators lends itself to deeper and more complete understandings of their own perceptions of their experiences, roles and relationships. understanding based on distinct methodological traditions of inquiry that explore a social A ccordingly, qualitative inquiry is the approp riate choice of inquiry for exploration of this important social problem with AI/AN communities and cancer. Qualitative research methodologies may also be a better fit for capturing cultural relevance and a culturally based collective experience. Strick land (1999) emphasizes the importance of using qualitative methodologies and capturing experiences that may be culturally based while staying truly relevant to the culture explored. Therefore, qualitative research methods are useful in capturing cultural ly based ways of 518). Qualitative methodologies can, as a result, help realize and hold true to these important cultural parameters. Additionally, the qualitative tradition may be more compatible with Native ways of relating information and experience. Storytelling, a tradition for many Native Nations

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177 has meaning underlying its information shar ing (Diaz & Sawatzky, 1995; Garrett, 1996). Oral tradition, which includes storytelling, is an important method of conveying experience and information. Many American Indians, beginning early in their lives, es, modes of communication and expected behavior through oral tradition and use these models as future frames of reference. It is by relating stories that various American Indians convey tradition, beliefs, and values, as well as present and future expect ations ( Duryea & Potts, 1993; Garrett, 1991; Oswalt, 1988). These traditions may help to keep in place these details and places. As Wilson relates: For the Dakota refers to the way in which information is passed on rather than the lengt h of time something has been told. Personal experiences pieces of information or events important incidents as well can become a part of important oral traditions. The Dakota oral tradition is based on the assumption that the ability to remember is a n acquired skill a skill that a person can acutely develop or neglect ( Wilson, A., 1996 i n reference to Charles Eastman tradition interpretation, p. 9 ). These traditions may be important also in the realms of place and time, the personal and the collective. Bruno David et al. (2004) note that : understood. Oral histories link the present with the past at deeply personal and community levels representing and commun icating those aspects of the past that are nearest to home and signaling for peoples those aspects of the past that have the most meaning in the present ( p. 158). Thus qualitative methods including ethnographic interviews, may be more harmonious for so me Native individuals regarding this skilled practice of storytelling oral tradition as well as communicating past experience and relaying information Phenomenology Approach A phenomenological approach (Moustaskas, 1994) of inquiry focuses on experie nce descriptions of participants. An in depth phenomenological inquiry also

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178 builds a beginning foundation for future explanatory research for study populations w ith little previous research such as the one explored in this study. This particular phenome nological approach was chosen based on the researchers desire to reveal the deep meaning of the experiences of the Native Patient Navigators phenomenon to uncover thei that phenomenon; meaning structures represent what is revealed as an understanding of at the center or fo undation of the experience (Creswell, 1998; Moustakas, 1998; Polkinghorne, 1989). At the center of the phenomenological approach is the use of the methodology to discover information, rather than to use it as a method of verification (Giorgi, 1985). The tradition of phenomenology therefore, is focused on first person (Moustaskas, 1994). Discovery is critical to the phenomenological approach (Giorgi, 1985). Central to discove ry is the epoche, or the inhibition by the researcher of previous experience and knowledge and preconceived ideas of how things are (Moustaska, 1994). Researchers ). The and experience, along with any preconceived ideas of how things are while using the epoche idea and consciously inhibiting interpretation (Moustakas, 1994). Phenomen ology is a particularly good fit for this study of Native Patient Navigators because of its emphasis on description and experiences. These ideas have

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179 primacy in a phenomenology presents itself in experi Giorgi (1992) noted this 131). presuppo sition less 101), as if it were return to experience in order to obtain comprehensive descriptions that provide the basis (Moustakas, 1994 p. meaning, structure, and essence of a lived experience of a phenomenon for a person or Context Setting. As noted above the Native Patient Navigato rs in this study were geographically distributed across the United States. The researcher conducted interviews with Navigator s from the Alaska, Northern Plains, East, Southwest, and Southern Plains of the United States. Because the numbers of Native Pati ent Navigators providers and clients are relatively small, the researcher limits details ab out some particular participant s characteristics to protect confidentia lity. In this study, Navigator s regions are identified by the national regions named by th e Indian Health Service: Northern Plains: 11 states IA,IL,IN,MI,MN,MT,NE,ND,SD,WI,WY Southern Plains: 3 s tates KS, OK, TX Pacific Coast: 4 states CA, ID, OR, WA East: 25 states FL GA, MO, MS, NC, NY, PA, TN Southwest: 5 states AZ, CO, NM, NV, UT

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180 (See Appendix D for IHS map and table of Native Patient Navigators Characteristics to locate the region of the country for specific Navigator s, Chapter IV.). The interviews were conducted in person and by phone. The in person interviews were conducted at Native American Cancer Resear ch Corporation (NACR) trainings and workshops and regional cancer conferences. NACR is a nationally recognized and Native run 501(c) non profit organization. NACR's mission is to reduce cancer incidence and increase survi val among American Indians and Alaska Natives (AIAN) (NACR, 2014). NACR does trainings and workshops in various states in the United States to advance this mission. The training is extended to Patient Navigator s Community Health Workers, Community Healt h Educators and other individuals who work with cancer in AI/AN c ommunities. In these trainings and workshops participants receive training and updated cancer related knowledge. The researcher was a volunteer at these trainings and workshops and a paid facilitator at the regional conferences. At these events, the researcher solicited Native Patient Navigators to be part of the study during 2012 2013. Sample population. Native Patient Navigators and their lived e of geographically distributed Native Patient Navigators A little more than half (n=14) of the Navigator s interview ed for this study were employed by the agencies and entities, usually community based 501(c) non profits These organizations had cancer awareness and prevention in AI/AN communities as their primary focus or as an additional focus to

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181 their overall health re lated missions. (See Chart of Advantages and D isadvantages of Navigator s Places of W ork in Appendix B). Table 3.2 Inclusion and Exclusion Criteria for Study Participants Criteria Inclusion Exclusion American Indian or Alaska Native Non Native Adult Working in a country other than US Both Genders Active Administrator/Su pervisor of Native Patient Navigators (NPN) Actively working in the role of a Patient Navigator regardless of title Community or Clinical Setting Note Inclusion and Exclusion Criteria for Study P articipants. This study targeted Native Patient Naviga tors who were interested in sharing their health and cancer experiences for the purposes of expanding our understanding of those experiences. Study participants were selected using the criteria for a Native Patient Navigators (NPN) a Native Patient Navi gator who assists a person in the Native American ( NA ) community in navigating the healthcare system across the cancer 2012, p. 4 ). Emphasis was put on those individuals employed Native Patient Navigato rs selection criteria of being a Native Patient Navigators using the working definition of Native Patient Navigators provided by the study, being employed in that capacity, working in a Native American community and willing to participate in the study. The total sample consisted of twenty six participants (24 women, 2 men). The participants lived and worked as Native Patient Navigators in their communities in a variety of settings. Participants came from varying backgrounds. Almost all o f the Navigator s (n=24/26) had two or more years of experience. A little more than half of the

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182 Native Patient Navigators (n=14/26) were community based Navigator s and 12 (n=12/26) worked in clinic associated settings. Study par ticipants typically were long time residents in their communities before they began their N ative Patient Navigator role. All participants had previously done work for their communities in health, education and disease prevention for several years in a v ariety of roles. For example, one Navigator s had helped youth graduate from high school and by the time she got to her Navigator s role, the high school graduated women were in their 40s. Because the women knew her when she helped them when they were youn ger, she was able to help them with getting their mammograms for the first time. They also brought in their mothers because they had trusted the Navigator s with themselves, so they trusted them with their mothers. These were common stories of the amount of time Navigator s had invested in their communities. The educational levels of participants ranged from high school to completed college degrees. Some participants reported having some or quite a bit of education, while others reported either having a nursing degree or taking classes to become a nurse. Several Navigator s reported plans to acquire education and on going training that would continue to support their roles in the community. Research Design The research design for this study was develop ed using qualitative methods in alignment with a phenomenological approach. The primary data source was in depth ethnographic interviews to examine lived experiences. These interviews were supplemented by detailed field notes, background interviews and p articipant member

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183 checks. Details follow approach, data collection process and analysis. Data Collection Procedures Recruitment approach. Originally, the targeted number for the tota l number of subjects was 15, face to face interviews of individuals ; however, the study greatly exceeded this goal with 26 Native Patient Navigators who were interviewed. Recruitment began from a Four Corner s Region cancer conference (Four C orner s is where Arizona, Colorado, New Mexico and Utah political borders meet) and recruitment continued at other regional or national cancer conferences, as well as at trainings and workshops, AI/AN non profits, clinics and organizations (See Appendix J Recruitment Flyer). Snowball Sampling Native Patient Navigators were identified for this study using a snowball strategy (Babbie & Mouton, 2001; Miles & Huberman, 1994). Initially, Native Patient Navigators contacts. The fi rst study contacts then identified other potential study participants, who were approached about participating in the study. The number of interviewees expanded greatly from the original contacts using this technique Miles and Hu m berman ( 1994 ) note that interest from people who know people who know what cases are information (p.28) probabilistic form of sampling in which persons initially chosen for the sample are used as informants to locate other (p. 438) Snowball sampling is appropriate for members of a unique or special population that are

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184 familiar with others in that rare popula tion and each refers the researcher to another potential study participant, who gives the name of a third and so forth (Vogt, 1999). Native Patient Navigators constitute such a special population. The s nowball sampling approach is an effective way of gathering interviews sampling is to obtain sufficient information from a known instance of the phenomenon to (Jorgensen, 1989, p. 50) Chain referral sampling or using a snowballing technique can be a strategic maneuver used by a researcher to help with access to a phenomenon. Limitations of snowball s ampling. A critique of snowballing involves problems of su fficient representation. Data quality and, in particular, a selection bias may limit the validity of the sample and is one of the main concerns of snowball sampling research (Van Meter, 1990). Because participants are not randomly drawn, and selection is dependent on the subjective choices of the respondents first accessed, snowball samples can be seen as biased and consequently will not allow researchers to make claims of generality from their study population (Griffiths, Gossop, Powis, & Strang, 1993). This technique of snowball sampling is also biased towards the inclusion of individuals with relationships, and can therefore over emphasize cohesiveness in social networks (Griffiths et al. 1993). These limitations notwithstanding, for this study, snowb all sampling was considered the most appropriate way to find study participants who met the eligibility criteria and were willing to be interview ed. Additionally, since study participants were referred by their acquaintances or peers they were more agree able to participate in the

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185 study. Snowball sampling, nonetheless was determined the most practical sampling strategy for this study. Conference r ecruitment. Interviews were solicited by the researcher at conferences targeting cancer in AI/AN communiti es. These conferences were sponsored by the Native American Cancer Research Corporation (NACR), and funded by the Centers for Disease Control through a grant titled, "Collaborative Partnerships in Cancer Prevention and Control Programs for American Indian s" (PI: Harjo; 1U57 DP003084). The conferences were working meetings, the goal of which was to partner, identify, and later implement and evaluate cancer action plans among entities concerned with this disease in AI/AN communities. The conference gather ings were an opportunity to work o n this objective in a face to face meeting and to work on these action plans that would stre ngthen partnerships among AI/AN and cancer programs. The targeted entities were health agencies, urban Indian organizations, Indi an Health Service s and other governmental entities along with federal and state recognized tribes, Alaska Native villages, as well as community members (NACR, 2014). The conferences were part of a national project in its third year of partnership. The conferences were held twice yearly and focused on two US geographical areas at a time. For these conferences, the researcher was a paid facilitator and participated in the Northeast regions. Native Patient Navigators participants were solicited during breaks and recesses at these conferences or by follow up. Those Native Patient Navigators who

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186 consented to be part of the study were interviewed. While most of the interview s were associated with these conferences, others were independently solicited. Training r ecruitment. Participants were also recruited from NACR trainings. These train ings were provided by NACR as part of their on going mission. The training was extended to Patient Navigator s c ommunity health workers and representatives and community health educators as well as other individuals involved with AI/AN communities. Participants in these trainings received new or updated cancer knowledge, navigation relate d skills and cultural competence training. I was a volunteer at these trainings and recruited Native Patient Navigators participants at the training breaks for this study. Flyer and announcement r ecruitment. AI/AN Navigator s were also invited to parti cipate through flyers and general announcements. Flyers were posted at the NACR, as well as AI/AN agencies, nonprofits, clinics and other agencies that service the AI/AN population. Also, inclusion of general study recruitment announcements were solicite d from AI/AN agencies (i.e., the researcher requested the inclusion of the study announcements on an American Indian radio station). As noted above, once participants were recr uited, they participated in ethnographic interviews. Supplemental Background Materials Researchers make use of various and diverse sources, investigators, methods and theories to provide corroborating evidence for a study (Ely, Anzul, Friedman, Garner & Steinmetz, 1991; Erlandson, Harris, Skipper, & Allen, 1993; Glesne, & Peshkin, 1992; Merriam 1988; Miles & Huberman, 1994; Patton, 1980, 1990). My study compared its

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18 7 results to data supplied by published peer reviewed journal papers, field note data, and original and auxiliary interviews data, searching for a convergence of information among diverse sourc es in an attempt to validate my findings. As well, I used publications by organizations employing Navigator s to focus my study. Ethnographic Interviewing Ethnographic background. Ethnography is an interpretation and a description of a cultural group, social group or system. Using this method a researcher investigates learned patterns and observable patterns of behavior and ways of life, as well as a grou customs (Harris, 1968). In this study I strived for a familiar and intimate relationship with Native Patient Navigators in their communities. I ch ose ethnographic interviewing in order to give the interview ee privilege and promote voice to the Native Patient Navigators Formal and in depth, open ended interviews. Interviewing, as a qualitative way to collect data for this study followed an ethnographic model. Spradley (1979) describes ethnographic interviewing as encompassing two major themes, t hat of establishing rapport and that of obtaining meaningful information. The rapport process as Spradley (1979) has defined is: 1. Apprehension a beginning apprehension between the interviewer and the interviewee 2. Exploration after rapport has begun to fal l in place a period where the participants begin to be more comfortable with each other 3. Cooperation a stage where mutual trust occurs 4. Participation the last stage of attaining rapport

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188 After time in using a successful interviewing technique, the interview ee becomes the t eacher to the researcher and complete participation is said to have occurred in the interviews (Spradley, 1979). Similarly, a phenomenology approach puts particular emphasis on building an environment that allows participan ts to reconstru ct their knowledge related to their experiences and to communicate this knowledge to the researcher. This approach helps the researcher to explore and understand descriptions of the participants while obtaining a genuine and authentic perspective (Wimpen ny & Gass 2000; Kvale, 1996) The interviewing strategy utilized by this study was formal in depth open ended interviewing where the participant was encouraged to give rich descriptive details and full explanatory answers while responding to the inte rview er probes for further elaboration. Interviews followed the question guide (See below) and used both directive Atkinson 1996). Interviews guide. The following are the interview questions used to guide the interviews. This guide was developed with input from two of my committee members (See Appendix E for Interview Questi on Guide). The interviews took 40 60+ minutes per participant. Participation was always voluntary. Interviews were designed to allow participants the option to decline to answer questions that they were uncomfortable with and to stop the interviews at a ny time. I requested, and was granted, permission by the participants to record each interview. This allowed me to give each participant their full attention, listen carefully and observe body language and expressions of each participant.

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189 I used field n otes to record my impression of each interview immediately following the end of each interview Additionally, in the spirit of honoring the voice, I included a box on the consent form to include the participant If a participant wanted to be cited for the purposes of cancer education there was a box for honoring that request. However, in this group of study participants, there were no requests. The interviews were transcribed and the names and any identifie rs were removed from the transcripts by the investigator. The transcripts were de identified from this point forward and only known by a transcription number. I also kept study records (consent forms, interviews, and so on ) confidential by keeping any st udy material locked in a file cabinet in my office. Additionally, when participants consented, it was agreed upon that the names of all participants would not be reported in the study results, unless the participant gave permission. Along with the consen t form, participants were informed that any study forms would continue to be stored in a locked file cabinet for three years in my office after the conclusion of the project in compliance with the Office of Human Research Protection (OHRP) regulations. The Native Patient Navigators interviewed for this study worked the majority of their time in the field. Navigator s ty home or the researcher not to interfere with the day to day work of these Navigator s Additional follow up interviews also abided by these guide lines for not interfering with Navigator s work in their communities.

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190 In addition to participant interviews, there we re several background interviews done, with experts working in the field of patient navigation. The majority of interviews took place at conferences, trainings and workshops of interest to the Navigator s The following are details of my qualitative appro ach and iterative process. On going ethnographic investigation. Qualitative research is an iterative process. To that end, this study was open to revisiting its methods and instruments repeatedly and revising, adapting and amending the procedures and pro tocols in place, if deemed necessary, as information was clarified, corrected and amended. This aspect of Native Patient Navigators to discuss their interviews for accuracy both while the interviews was occurring and during follow up the time which occurred both face to face and by phone. It was important that the interviewees felt that the interviews reflected their authentic selves. Follow up calls or in person visits were conducted with all participants and ranged from 30 to 60 minutes. This feedback was utilized both during each phase of the analysis and every time the need arose for accuracy and completeness of interview findings. Remarks not reflecting this authenticity were revised, clarified and corrected by myself based on review and reflection by the participants. Member checking. Brayboy and Deyhle (2000) note the importance of this member checking process: Because the same events are often "seen" and interpreted by their participants in very different ways, analyzing data with participants allows the researcher to illustrate the range and variation in how events are interpret ed. In other words, a more holistic picture is formed (p.164). When lived experiences are recounted, researchers themselves may get only an element of these pictures, blocking out the holistic picture of these events that is apparent

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191 to the participant. Therefore, the author strove not to interfere with the telling of N lived experiences by using these measures and to have participants elaborate on experiences that were not clear. is defined as an opportunity for participan ts to check and approve specific aspects of the study data they provide (Doyle, 2007; Merriam, 1998). 92). Member check ing is often done in studies as a single event that takes place with the participant verification of transcripts and early interpretations. Sometimes, however, it is done continuously (as many scholars recommend) and as in this study (Doyle, 2007). Resea rchers, regularly express purposes of verifying plausibility (Curtin & Fossey, 2007; Merriam, 1998). In this regard, the researcher asked, am I on the right track her e? Or did I understand it as you meant it? This is especially important with this study and the desire to have Native participants retain their voices. Ajjawi and Higga (2007) note that interactive member checking and the constant use of participant fee dback process an iterative process of member checking along with the constant use of clarifying questions were used to understand the meaning of participant descriptions and the phenomenon. Cultural appropriateness. Interviewing, in general is problematic in AI/AN populations because the act of constant questioning may be perceived as intrusive

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192 (Garrett, 1994). Th is challenge is also confirmed by Brayboy and Deyhle (2000) who note that it may be disrespectful t o ask question after question of an Indigenous person and could be seen as a sign of disrespect. Therefore, respectful interviewing for a qualitative resear cher may be difficult in a Native community. This may be an even more complicated undertaking because in many Native Nations this cultural expectation challenges a fundamental way of receiving information: Individuals learn from others by taking informa tion from what is said. In many cases, the onus for getting information is on the listener rather tha n the speaker in conversations ( Brayboy & Deyhle, 2000 p. 167 ). This onus for getting information primarily from relying on the listener may be e mbed ded in long standing historical conventions of oral tradition for many Nations Thus, the responsibility for the li stener to get information may be caused by the parameters of Native oral tradition itself It may also be complicated by differences of comm unication styles for some tribal individuals. Satter et al (2005) in their article on communicating respectfully with American Indian and Alaska Natives (AI/AN) English , ds which means individuals wait until the speaker is finished talkin g and pause to make certain the speaker is done before speaking themselves. Respectful Interviewing Because of the above issues and others, interviewing needs to be conducted differe ntly with Native communities. The project Messengers for Health on the Apsaalooke Reservation (MFH) used a lay health adviser in their Community Based Participatory Research (CBPR) intervention for cervical health (Christopher & McCormick, 2001). The tra ining manual used for this intervention within the Crow N ation is regarded as a beginning to respectful interviewing by many Native

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193 scholars, keeping in mind, that all interviewing must be tailored to a particular Native nation with mindful interviewers wh o are familiar with local norms, nuances and community history. The training manual includes protocol generally accepted in many Native Nations the elements of which are a) try to put the woman at ease; b ) communicate genuine interest, sincerity, being r elaxed and friendly; c) it is appropriate to spend a little time visiting and; d) it is culturally appropriate to accept food or drink if it is offered, as it shows respect for the woman; d) sit so that the woman and you can both see the questions as they are circled, so that she can clearly see the survey. Doing so will build trust so that she can see you circli ng and writing in the answers. I f the woman seems relaxed you can change positions, if she again begins to seem uncomfortable, switch back so th at she can see the survey again (Messengers for Health, Christopher & Knows his Gun McCormick, p. 29). Below is an excerpt from the training manual for the in tervention concerning a matter of great concern to many researchers, the manner of asking question s (See also Appendix O ): Excerpt from Training Manual, Interviewing Techniques, Messengers for Health: Asking Questions To get accurate information from the women participating in the project, it is important that questions be asked in a uniform manner. That is, ask all women the same questions in the same way and in the same order so that the answers can be compared. THINGS TO BE CAREFUL ABOUT WHEN ASKING QUESTIONS: Questions should be read slowly. Use a pleasant tone of voice which shows interest, con fidence, and a professional manner. judgment. Be aware that the woman may not always respond to you with eye contact, but respect this behavior as it is part of Crow culture. Read eac h question exactly as written.

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194 Excerpt from Training Manual, Interviewing Techniques, Messengers for Health: Emphasize underlined words to enhance meaning. instructions say to. If the woman has already provided information that probably answers the question, you ca n refer to this by saying something like: Read all possible responses when there is a multiple choice format. ad out loud the instructions that are intended for you. Your instructions are in boldface print. Never try to ask questions from memory. Know questions thoroughly, but you must read them exactly as written. If they are wondering about certain questions, let them know that the information will be used to understand about cervical health among Crow women and used to educate all Crow women about cervical health. If a woman starts to answer the question before you read all of the responses, pause and listen t the question or you are not sure, repeat the question with her answer inserted to make sure you have the correct information. i nformation you may clarify it but this must be done in a standard manner. Use one of the following methods:

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195 Excerpt from Training Manual, Interviewing Techniques, Messengers for Health: Repeat the entire question. (For example, if the woman did not hear it). Repeat part of the question, when the woman is unsure of a word. Repeat a ll response categories if the woman asks you to repeat any one of them. Define the meaning of a particular word if it is not understood by the woman. If both you and the woman speak the Crow language, it may be necessary to interpret the question from Eng lish to Crow. This will not only help the woman to better understand the question, but will also allow her to feel more comfortable and provide effective communication. The woman will be able to express herself and respond to the question especially when s he shares a comment or opinion. This will take place naturally between you and the woman during the course of the interview. Never rush a woman through her response or interrupt her. (See appendix O for more examples) Note. Christopher & McCormick Knows H is Gun, Messengers for Health Training Manual, Apsaalooke N ation M ontana State University, 2001, p. 35 36) Reprinted with permission. Contrary to most interviewing techniques taught, the manual stressed that tone of voice is very important: tone should sound warm, carin g, interested and compassionate, instead of d with surveys (p. 42). In addition, one should use specific Crow cultural communication patterns such as long pauses, slow sp eaking and the value of not interrupting the speaker, 41). (See Appendix

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196 These differences in m aintaining a respectful interviewing protocol are also Approach to Develop an Interviewer Training Manual with Memb ers of the Apasaalooke N ation ( Christopher, Burhannstipa nov, Knows His Gun McCormick & Simonds in Israel Eng, Schulz & Parker, Eds., 2013 ) In this chapter the authors detail the development of the training manual including the manner of the interviewer, beginning and closing the interview in a respectful man ner including no pressu re to complete the survey, such as t is neither appropriate nor acceptable in the Apsaalooke culture to coerce or push someone language us e dissemination and use of survey findings. Le ssons learned from approaching the interview training manual using a CBPR perspective were: 1) The survey protocols need to reflect local community customs, previous history with research, as well as an understanding of broader historical and co ntemporary relationships. 2) Researchers need to be prepared to spend a considerable amount of time and energy with and in the community with whom they are partnering. 3) Researchers need to integrate dissemination of findings with the study participants in a wa y that does not weaken scientific integrity, yet demonstrates reciprocity and partnership. Community members shared with us stories of researchers who gathered personal and sensitive information from them, never to be heard from again. They did not know what happened to the information, how it was used, and doubted that the information was used to help directly the community.

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197 4) Survey findings need to result in beneficial programs or services within the community. Many Native communities, including the Ap aalooke community, 5) Researchers and community members are partners in conducting the surveys and need to work honestly and cooperatively with one another. 6) Partners need to work actively to gether on all stages and phases of the research project. 7) Survey interview behaviors need to reflect respectful communication styles appr opriate for the local community (Christopher, Burhannstipanov, Kn ows His Gun McCormick & Simonds 2013) Also men tioned in this chapter is the concept of the social aspect of an interview. A ccording to: The Apsaalooke members of our team viewed the interview as a social situation in which giving and accepting food is an important and traditional way of welcoming som eone and revealing a cultures and has been used in health interventions with Native Americans (Dignan et al., 2005). Gifting reflects the principle of recipro city, resonating with much of the work exploring Indigenous ways of knowing in research. This giving of sustenance happens at clan meetings, after going into the sweat lodge, and whenever people come together. It would, therefore, be disrespectful for th being responses that are incomplete, guarded, or inaccurate. As one Native woman who parti to eat my food, why should I trust them with my personal knowledge? ( p. 235 ). In closing the authors cited Cheryl Crazybull as eloquently summarizing the attitude to ward respectful interviewing, k eeping in mind the important Native perspective : As we s eek our own understanding of tribal research and scholarship, we must remember the people of the community are the source of our profound understanding of tribal life, values, and rituals. We must hear their voices and participate in their stories and rit ual in order to attain the wisdom we seek. As we explore the world of scholarship, the everyday people and everyday rituals must form the foundation for the lodg es we build (Crazy B ull as cited by Christopher et al. 2005 in Israel et al., 2013 p. 16).

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198 My a pproach to respectful interviewing: In this study, respectful communication, including interviewing, was of the utmost importance. The approach became a very personal as sociation over the next few paragraphs. I strived to overcome challenge s to interviewing while remaining respectful to participants by incorporating tactics similar to those outlined above tactics which emphasized relationality, reciprocity, respect, and responsibility. This included a) following respectful ways of interviewing early on in the study; b) explaining the process before the beginning of the interviews ; c) soliciting on going feedback from participants as well as community members. My appro ach was as follows: Before I began I prayed searched for balance within myself and was totally intent on hearing what the person said I also observed their non verbal behavior. I approached my interviewing with mindfulness toward being present courte ous and polite. I was very conscientious of using a soft tone gently pacing the conversation and listening for clues with the participant. I always apologize d for speaking in front of and before my elders, since it is their tradi tional place is to speak first a nd allowing this to happen is a respectful act on the part of others I also apologize d if I inadvertently would say something in a way that they would not normally say and I ask ed them to correct me. This is how my aunties taught me to speak wit h others in a respectful way. If I did not know them we visited briefly and shared our respective tribal backgrounds. I always tried to find common ground by stating my own relationships ancestry and traditional and ceremonial practices. We shared inf ormation about people we knew in common

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199 and/or relationships. This helps create a web and a bond betwee n us. I sat side by side with them allowing them to see the questions and whatever I was writing. I found a quiet place that allowed us to speak priv ately without risk of being overheard. For those who needed childcare I provided a qualified baby sitter. Because it is respectful in all AI/AN communities to provide food and beverages these were always available. At the end of each interview each pa rticipant was given a gift gifted ) as in the norm in AI/AN communities to show respect and to honor the time they have dedicated to the research process. Data Analysis Steps in data analysis. The audiotapes and field notes from interviews were transc ribed using standard word processing software. The transcripts and field notes were uploaded into the N Vivo 10 qualitative analysis software program. Notes were also collected on the events including dates times and places where interviews were conduct ed with researcher observations. The researcher transcribed along with a colleague her own interviews and wrote her own field notes. The researcher also kept a backup copy of all computerized files. Access to both hard copies and computer transcriptio ns w as limited to her self ; all study files were kept in a locked file cabinet an d the office door was locked. The researcher was the only person with access to these backup files. The confidentiality and anonymity of all participants were carefully atten 134) as well as the assignment of numeric codes. Miles and Hu m berman (1994) note that data analysis is not off the shelf but needs to be revis ed choreographed and in fact custom built. In a qualitative study the

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200 amount of data to be managed can be vast, and very overwhelming. Patton (1980) comments : The data generated by qualitative methods is voluminous. I have found no way of preparing s tudents for the sheer massive volumes of information with which they will find themselves confronted when data collection has ended. Sitting down to make sense of pages of interviews and whole field notes can be overwhelming (p. 297) There exists no cons ensus regarding the analysis of qualitative data (Creswell, 1998, p. 140). However, several authors (Bogdan & Biklen, 1992; Miles & Hu m berman, 1994; Wolcott, 1994) recommend parallel strategies. These strategies include a) a general review of all informa tion, including field notes and interviews transcripts; b) the compilation of all information; and c) the constant comparison of transcripts and field notes In addition, two committee members and a former doctoral colleague in the Education, Innovation a nd Leadership program coded the same transcript and the coding was reviewed for consistency and collaboration on the transcript for a working code book. The researcher also reviewed her coding and analysis procedures with an outside doctoral group, the S tudent to Academic Professoriate for American Indians (SAPAI) and its four advisors T he researcher participated with this group of advisors and fellow colleagues begin n ing in the s ummer of 2013 at a SAPAI writing retreat at the University of Montana. Thi s retreat was sponsored by the Alliance for Graduate Education and the Professoriate (AGEP) and the N ation al Science Foundation (NSF) These advisors, three of whom were current faculty members with expertise in the whom was a ne w Ph.D who had expertise with NVivo analysis; all followed up with the researcher several times before, during and after the analysis, giving critical feedback and NVivo expertise help with analysis and also gave ongoing feedback with the dissertation.

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201 Also, the researcher consulted with her main advisor several times when cr i tical tasks regarding coding occurred including gathering of correct coding determining the rationale, and analyzing themes along with addressing possible biases (for example, us ing only themes occurring with 50% of the Navigator s). Coding was per formed by the researcher alone, since it was not feasible financially to pay another person or train on NVivo however one of the SA PAI advisors did consult with the researcher independe ntly regarding NVivo and analysis both while the researcher was at the Uni versity of Montana and after the program ended The researcher followed these steps as described below : Step One: Data Imm ersion and Organization of all Data. The first step in ana lysis was to read through transcribed interviews from beginning to end several times and get a interviews from the viewpoint of the Native Patient Navigators This occurred as interviews happene d and as soon as they were transcribed and de identified. The goal was for understanding and to get a sense of what was contained in the data. This process included a preliminary analysis of all interviews, field notes and supportive documents describing Navigator s experiences. Step Two: Identify and Isolate Major Topics using the Descriptions of Navigator s P articipants I nterviews, Field N otes Supportive Documents and Articles from the Literature R eview. Meaning units (Giorgi, 1994) were blocked out in the interviews For example the researcher blocked out parts of interviews which possess ed a self contained concept and therefore defined a meaning unit; meaning units can be thought of as sections of text that are representative of the interviews i e ., parts in which a participant focuses on a particular aspect of experience or where the participant shares a story.

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202 perceived discriminations within the subject s description s, arrived at when the 11). An example from the study dat a would be a detailed example of an experience that focused on identity within a Native Patient practice. The blocking out of meaning units was achieved using the NVivo 10 software package for qualitative data analysis. NVivo 10 has the unique capability of organizing a large quantity of data and of allowing identified themes to be traced directly back to the original passages in the transcript. The program also has the ability to help analyze other documents such as field notes supportive documents and articles and linking the passages from the different data sources to each other. This ability allows the researcher to have a structured organized and strong analysis as well as an active way of rechecking transcripts for accuracy and potential biases. Step Three: Analyzing Meaning Units. The third step involved analyzing the meaning units and then i dentifying and organizing codes and nodes using NVivo 10 At the beginning of this coding process a code book was made by the researcher usin g a as well as emergent codes f rom the analysis from Step Two. This step was con ducted with committee and two doctoral colleagues. Step Four: Closer Analysis. After agreeing on the identification and meaning of the codes using transcribed material these codes were utilized for closer analysis of the data. Additional emerging codes were added to this original code book as analysis continued until no more new themes occurred and the data reached saturation.

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203 Step Five : Synthesizing. The fifth st ep of the analysis involved synthesizing and grouping the nodes or codes. Gathered identified nodes (emerging themes) were grouped using NVivo 10 The emerging themes were collected and gathered into main themes. Synthesis and constant comparison were u tilized in this step the grouped themes thereby Step Six: Identification of Major Themes using Previous Steps of A nalysis. Importantly along all steps of analysis the researcher stopped and ques tioned hat do these data mean and to what are they connected and how do they fit in the overall picture of the study In summary the grouping of codes and theme identification were in essence from: Initial code >Subcode Second level code>Major codes>Overarching codes. Trustworthiness : Trustworthiness involves enhancing con struct and face validity, self r eflection and journaling. In an attempt to achieve scientific rigor in this study with Native Patient Naviga tors the study was evaluated for scie ntific rigor using four elements: C redibility t ransferability d ependability and confirmability. Using a definition by Guba and Lincoln (1989) credibility is similar and parallel to internal idea of isomorphism between findings and an objective reality is replaced by isomorphism between constructed realities of the respondents and the p. 236 237). Credibility ensures that the research can be deemed accur ate as well as believable. Credibility for this study was a chieved in the following ways: The researcher had a prolonged engagement with the data The researcher performed an iterative analysis and on going member checks. Prolonged engagement with the d ata was achieved as I read and examined the interviews several

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204 times wrote and utilized NVivo 10 for analyzing initial codes subcodes major codes and overarching codes. I also made attempts to verify my data within a community context. To avoid or re duce single investigator bias two members of my dissertation committee reviewed the data and notes and assisted in refining the evolving coding (described later). I have been present in the community spending a lot of time with Native Patient Navigator s in their neighborhoods and I have participated in cancer awareness and in o ther community events where the Navigator s were present. At these opportunities I was able to further verify my data within the background of the environment that Native Patient Navigators practiced. I addressed and analyzed my biases and assumptions by having my advisors help review and refine each step of the process. Doctoral students who were also working with qualitative research methodology and shared similar concepts of coding delimitations received verbatim transcripts and conducted independent coding In addition two members of my dissertation committee also performed this service to help reduce single investigator bias. We compared our coding for consistency. The y acted as debriefers and helped me analytically to uncover and resolve any biases I had. For example if there were questions regarding the analysis with regard to my own biases a colleague or advisor would ask me for the original verbatim quote and I w ould be able to retrieve this section of the interviews that was linked to a code on any level as well as back track themes. Thus I was able to identify discrepancies and check my data continually. Member checks were also performed when interviewing N ative Patient Navigators by asking questions and using pauses and active listening to make sure that their lived experiences were clear and accurate. I also ch ecked back with all 26 interviewe e s and received feedback as well as clarification.

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205 According to Trochim (2006), transferability is parallel to external validity. Generalizability was sought by providing information to the reader in the details of the s depth description in order to provide the background for the reader to determine if the study is generalizable. (Trochim, 2006). To this end as much information as possible was col lected with regards to demographic information and other Native Patient Navigators detail s. This information is given in the chart detailing Navigator s characteristics. Dependability is parallel to reliability; this evaluation is primarily concerned wit h the stability of the data. should be given enough information to help witness the process, evaluate the decisions that were made, and intimately to understa nd how the researcher made the decisions as well as understand how interpretations of data were made (Guba & Lincoln, 1989). Again helpful to this process was the use of the commercial program of NVivo 10 To help confirm dependability NVivo 10 was used to help organize data effectiv ely and apply a clear and transparent analysis allowing codes at any level and themes to be identified and directly traced back to the verbatim source. In addition my own journal and assumptions with regard to the data (Ahern, 1999). Although it is difficult for any researcher to do away with all biases and assumptions completely it is possible using the process of bracketing to help the researcher to view preconceived notions about the themes and the codes at hand. Researcher awareness of these important concepts is an effective way to help minimize

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206 potential bias held by a researcher and helps to hold the study research to a higher scientific rigor (Dale, 1996). S elf reflect ion was also helpful. (Because this was a Following every interview I did a reflection exercise. I would journal how the interview went, as well as any feelings that occurred. I also recorded items that cannot be picked up by a tape recorder and are particularly important for Native individuals who come from a background of oral tradition. These are in the realm of body language, such as nods of agreement, facial expression and body language. I then used these recordings during my analysis to help me with my assumptions and biases and to help get a more accurate description of the interviews. I had my own coding system to note non verbal cues in my notes, such as if the participant appeared question to which they were responding. The effective strategy of journaling throughout scientific rigor (Denz in, 1994; Ortlipp, 2008). According to Guba & Lincoln (1989), confirmability is parallel to objectivity as it can be tracked to its original source (Guba & Lincoln, 1989) or that the conclusions have been drawn from strong connections in the data. This was achieved by my reflections on these connections with my advisor, colleagues and the use of NVivo 10 to verify paths of association as was described previously w ith colleagues and advisors collaborating with me to reduce single investigator bias. This process provided a check of my study analysis to ensure qualitative criteria was rigor ous ; namely, in the realm of dependability using a process of a repeated itera tive process of documentation and confirmability

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207 (codes and subcodes/secondary codes and overarching codes as well as all themes could be traced to the original verbatim interviews [Guba & Lincoln, 1989]). Limitations to the Study Limitations of this stud y were because: o The interviews were primarily self report ings thus one perspective may be presented in each case; the interviews focused on individual lived experiences of Native Patient Navigators o The study used a convenience sample. Navigator s were referred by othe r Navigator s for this study. o The study included a larger amount of AI/AN Navigator s from areas other than the Pacific Coast IHS region. This limitation could be attributed to the challenges of sample selection and recruitment. Although an attempt was m ade to recruit Navigator s from this area, because of the challenges of short term granting cycles and associated changes in employment, these Navigator s from this region of the country were primarily no longer grant employed and were inacc essible for interviews. o obtaining additional feedback. Although the researcher feels all the interviews went extremely well and the lengthiness, along with member checking of the se interviews, attest to this being the case, there always remains the possibility that some interviews could have been different if the researcher were not an ins ider. This could be due to issues such as ecific tribal nation, geographic

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208 area, role, and gender or age category. However, Swisher (1998) in her critique of non passion from within and the authority to ask new and different questions base d sought to bring strength to the study by bringing this shared experience to the study. Therefore, the biggest limitation was investigator bias. I attempted to mitigate this by havi ng advisors and colleagues provide on going and external review and guidance. Summary In chapter III, the researcher focused on the methodological features of this Native Patient Navigators study. The purpose of the research study was reviewed as were t he research questions. Also reviewed was the framing of the design of this research study within qualitative research and a phenomenological approach. This in turn, was aligned with the research methods and with the original purpose of this study, which examines the lived experiences of Native Patient Navigators In addition in chapter III, the researcher described in detail the procedures for data collection and data analysis utilized in this qualitative study as well as the setting, lation and the approach used for interviews and data collection. Additionally, issues of validity and reliability for the study were examined. Lastly, this chapter visited recommendations for research undertaking within AI/AN communities, as well as the limitations of the study.

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209 CHAPTER IV PRESENTATION OF FINDINGS people is to bring wisdom back into the community and make it available to others so that the lives they are In Chapter IV, the major results of this study are presented. The data for this qualitative research study were primarily in depth, ethno graphic interviews with Native Patient Navigators The findings of this study revealed the lived e xperiences of these Patient Navigator s based on a phenom enology approach to summarize experiences and an iterative constant comparison method to reveal essential patterns, strands and themes among experiences reported by the particip ants ( Glas er, 1965; Glaser & Strauss, 1967; Glaser & Str auss, cited in Lincoln & Guba, 1985). These results derive from the phenomenon of lived experiences of Native Patient Navigators in their jobs and communities Table 4.1: Native Patient Navigator Dem ographic Table (See Appendix D for IHS map) Transcript number(s) Gender Number of years of experience Nurse? Indian Health Service Area Served Clinic or non clinic based Primary Population Served Grant Funded? 400014 20 Female Greater than 2 years No Sout hw est non clinic Urban Yes Grant 400021 Female About 2 years Yes Southern Plains Clinic associated Rural and Urban Yes grant 400025 Female Greater than 2 years 3 years within the cancer field Greater than 3 years medical navigation No Southw est non clini c Urban Yes grant 400026 Female Greater than 2 years 7 8 years Yes Southern Plains non clinic Rural Yes grant 400027 Male Greater than 2 years No East non clinic Rural Yes grant 400028 Female Greater than 2 years Yes East non clinic Rural Yes grant 4 00029 Female Greater than 2 years (since 2001) No Southw est non clinic Urban Yes grant

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210 Transcript number(s) Gender Number of years of experience Nurse? Indian Health Service Area Served Clinic or non clinic based Primary Population Served Grant Funded? 400032 Female Greater than 2 years (about 3) Yes Southern Plains Clinic associated Rural and Urban Yes grant 400033 Female Greater than 2 years (since 2007) No Northe rn Plains non clinic Rural Yes grant 400034 Female Greater than 2 years (about 4) No Southw est non clinic Urban Yes grant 400035 Female Greater than 2 years (since 2010) No Southern Plains Clinic based (within a Medical System) Urban and Rural Note c ancer center of rural clients from 39 Tribal Nations Large volume of clients No non grant 400036 Female Greater than 2 years No Southw est Clinic based (within a Medical System) Rural and Urban No non grant 400038 Female Greater than 2 y ears (since 2009) 1 year official title No Nursin g Classes Northern Plains Rural Rural Yes grant 400039 Female Greater than 2 years (Since 2007) Yes Pacific Coast Based in a Clinic but also works in the community Rural and Urban No non grant 400040 F emale Greater than 2 years No East non clinic Rural Yes grant 400041 Female Greater than 2 years No East non clinic Rural Yes grant 400042, 43 Female 2 years No Northern Plains Clinic associated Rural Yes grant 400044, 45, 46 Female Greater than 2 year s (9 11 years) No Northern Plains Clinic associated Rural Yes grant 400047 Female About 1 year official Navigator title Previous Community Health Worker No Northern Plains Non clinic Rural and Urban No non grant 400048 Female Greater than 2 years (10 11 years) No Southw est Clinic associated cancer center Rural and urban No non grant 400049, 50 Female Greater than 2 years (12 years) Yes Alaska (West Coast) Clinic associated Rural No non grant 400051 Female Greater than 2 years 5 years No Alaska Cl inic associated Rural and Urban No non grant

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211 Transcript number(s) Gender Number of years of experience Nurse? Indian Health Service Area Served Clinic or non clinic based Primary Population Served Grant Funded? 400052 Male Greater than 2 years (2006 Navigator role. 9 months official title) No Alaska Clinic associated Rural and Urban No (non grant) 400053 Female Greater than 2 years (3 years) No Northern Plains Rural and Urban Rural and Urban No (non grant) 400055, 56 Female 1 year Previous Community Health Worker training No Northern Plains non clinic Rural and Urban No (non grant) 4000G Female Greater than two years (over 4 years) No Southern Plains has worked in both clinic associated cancer center and non clinic settings Rural and Urban Both (grant and non grant) Note. ( Native Patient Navigator Participant Characteristics) S ome participants have multiple transcripts, for example participant transcript 400044 4 5 and 46, due to the length of the interview) There were 26 Navigator s total, including participants from both genders. All were Native A Navigator s criteria. These participants were employed w ithin the United States working in both clinical and community settings. The four key findings of the study were: Native Patient Navigators maintained a unique identity that existed among themselves and was inclusive of their tribal identity. Native Patie nt Navigators expressed this characteristic identity both within their own group membership and as they viewed themselves in the context of the larger outside social world. This identity involved a mix of Native, community servant and professi onal realm s. Secondly, Native Patient Navigators engaged in a community with a shared practice or community of practice Navigator s organized themselves around a specific area of knowledge and activity.

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212 Through this shared practice and in the process of sharing i n a joint enterprise, mutual eng agement and shared repertoire; Navigator s developed characteristic values, views, and ways of accom plishing goals. Third, Native Patient Navigators crossed borders from n on Native and N ative worlds and back. These Navigato r s acted as skillful border crossers between Western and Native wo rldviews. As border crossers, Navigator s worked as mediators and advocates for understanding across many areas addressing regard to Western institutions. Lastly, Navigator s helped form a permanent bridge for the equal sharing of cancer treatment options using Western medicine and Native traditional medicine for American Indian a nd Alaska Natives. This bridge making helped to develop a space where the two worlds may work together in tandem to bring the vision of the client and their families to fruition. Throughout the re st of this chapter, the Native Patient Navigators findings are presented and analysis. The findings are then supported after their presentation with relevant details. In order to support these findings, specific examples and discussion are also presented, thus providing the justification for their s. Also, within the chapter, important connections to the brings this chapter to an end. Review of the Problem Cancer and its associated burdens continue to rise amon g Native Americans. This fact remains, despite extensive efforts to reverse this trend (Cobb, Wingo & Edwards, 2008). Because of the disparities in cancer incidence and mortality, as well as the rising

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213 overall cancer burden, interventions are necessary t o improve access of American Indian and Alaska Native (AI/AN) patient s to treatment and prevention services to lower the cancer bu rden (Eschiti, Burhansstipanov & Watanabe Galloway, 2012). Native Patient Navigators offer one avenue to address the increas ing burden of cancer in the AI/AN community. Review of Research Questions The primary research questions guiding this study are: How does this sample of Native Patient Navigators experience and understand health and cancer? How does this sample of Native Patient Navigators see issues of stigma and historical mistrust around these issues? Relate d questions are: How do Native Patient Navigators experience their roles within their communities and the larger society? What are their beliefs regarding cancer h ealth and cancer screening? What are their beliefs around stigma and historical mistrust around these issues? How do these beliefs affect their work? This research study set out to examine how Native Patient Navigators experience their roles within their communities and larger society. Also questioned was, What are their beliefs and perceived experiences regarding health and cancer screening, what are their beliefs and perceived experiences around stigma and historical mistrust around these issues, and ho w do these beliefs an d experiences affect their work? Review of the Conceptual Framework This study focuses on interpretation and interaction. Highlighted in this study are the elements of Native ways of knowing Amerindian circles of learning sociocultu ral theory and Critical Theories. Also important to the framework are the theories related to

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214 communities of practice (Lave & Wenger, 1991; Wenger, 2000) and the multidimensional concept of border crossing (Lewin, cited in Rychlak, 1981 and others, see Ch apter II). These elements formed the basis of the conceptual framework of this framework. (See Conceptual Framework in Appendix Q.) Critical Theory/ Critical Race and Tribal Critical Race Theories Critical theory is a discipline that is focused on the application of a critical and deeply analytical perspective Critical theory stresses a critique of society and culture and a reflective assessment by applying knowledge from the humanities and social scientists. Critical theorists and practitioners have long sought to illuminate the voices of oppressed and marginalized individuals and populations within society (Horkheimer, 1982). Horkheimer (1982) has also described th e theory as a critique "to liberate human beings from the circumstances that enslave them ( p. 244) Critical theory links learning with change; change comes with action and action along with thoughtful response and hopeful, ultimate transformation Criti cal theory additionally allows empowerment of other voices with the potential for transformation and in turn, challenges the mainstream dominant oppressive ideologies that exist in society at large Critical theory is used as a tool to challenge the domi nant and oppressive ideologies fostered in society (Guess, 1981). In comparison, critical race theory is the critical examination of society and culture that focuses on the intersections of la w, race and power ( Gordon, 1999, Gordon, 2000 ; Yo sso, 2005) Cr itical theory and critical race theory critically examine the structures in place that continue to oppress AI/AN voices and block full participation,

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215 Tribal critical race theory refer r ed to as TribalCrit (Brayboy, 2005), addresses American Indian people in a framework that acknowledges the complicated relationship that these individuals and groups have with the federal government in the racial, legal and political realms Critical theory t he root of all the aforementioned theories, is the arrival at an understanding of a social change (Guess, 1981). Amerindian Circles of Learning AI/AN continue to have sys tems of education in place, with knowledgeable AI/AN tribal members continually sharing Indigenous knowledge. A Circle of Learning is any gathering in which these community leaders, such as scholars, parents, teachers, healers, elders and cultural traditi onalists come together to instruct the community. Merely being present is an important prerequisite, as culturally specific knowledge is taught orally and appropriate behaviors are modeled. Amerindian circles of learning are conducted in both formal and informal settings with participants of all ages. Sociocultural Theory Amerindian circles of learning have several parallels to concepts adopted by sociocultural theory; current views of sociocultural theory draw mostly on the theorists Vygotsky (1986), Rog off (2003) and Wertsch (1991, 1998) as well as several other authors. The sociocultural perspective using the ideas from these theorists, explains that human development, specifically with higher order functioning, develops out of social interaction (Thar p & Gallimore, 1988).

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216 Border Crossing All these factors might interact and therefore influe the effect which is encompassed in this evolving dimension or life space. It is in this life space, Lewin notes, that individuals organize, interpret, and may further enact their experience. Border crossing is a phenomenon th at is spontaneously applied when a Native individual needs to be in two states of mind (i.e., Western and Native) at the same time. each other. Because of this, ever uniquely and as a patterned result ; this is especially true for those who continually negotiate different worldviews such as Native Patient Navigators Thus, border crossing, in this instance, is com prised of elements of mediation, translation and an understanding of Native culture and Western culture both of which are situated in this life space. Socio cultural is a Western term I use to describe Native mannerisms, at titudes and spontaneity. Socio cultural is being who one is, where one exists. These socio cultural traits are found regardless of what socio cultural border is crossed, be it social, cultural, as well as, political. Life space is impo rtant in the crossing of social cultural a nd socio political borders and in the consideration of cultural border crossing. Native Patient Navigators like others who deal with differing worldviews on a continuing basis, negotiate their

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217 border crossings with regards to the social, cultural, historical as well as socio political realms. T hese conceptual framework elements represent the important theoretical assumptions underlying this analysis of the perceptions o f lived experiences for Native Patient Navigators It is the intricate play between these elem ents that frames the analysis of this qualitative research study (See Chapter II for a more complete Review of Approach Th e data from which these Native Patient Navigators perceptions of lived experiences were drawn consisted of in depth ethnographic interviews. These interviews were supplemented by extensive detailed field notes and background supporting documents. Qualitative methods were utilized in this study and a phenomenology approach was employed Phenomenology is a qualitative method that primarily concentrates on examining the lived experience; the essence and meaning of the phenomenon (Oiler, 1982). A an Manen, 1990, p. 9). Phenomenology is often used when there is either very little knowledge or (Rose, 1988). In this instance the phenomenon of the Native Patient live d experience was analyzed. Description of Coding Hierarchy: Emergent and Apriori Codes In this study, in depth interview data were analyzed using NVivo 10 for apriori and emergent codes in order to find trends in perceptions acr oss the study sample of

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218 Nati ve Patient Navigators Qualitative content analysis has been d a research method for the subjective interpretation of the content of text data through the systematic classification of coding and identifying themes or p. 1278). Collected data were examined using a repeating process of analysis, using iterative coding practices to identify predominant streams and patterns. A coding unit was described as a word or group of words that could be coded under one category. The following explains the hierarchy and levels of coding that were utilized in this study. Overarching Codes (A) Overarching Codes all encompassing threads Major Codes (B) that which emerged emergent themes that were revealed by and patterns which lead into the overarching code. Sub Code/Second Level Codes (C) the next level of codes, which lead into major codes. (Note: T hem es were gathered when 50% of the participants remarked on a category of second level codes) Initial Code s (D) the most important initial code identifier Example: Initial Code Identifiers (D) (Clan) > Sub code/Second Level Code (C) (Inclusiveness of Tribal Identity) > Major Code (B) (Identity Native) > Overarching Code (A) (Identity) Tables are referenced at the front of each section and found in the appendices F I and present a representative summary of the findings for the following sections using the relevant coding structure from the NVivo 10 analysis of the in person interviews. The sections below pr ovide expansions on these findings, examples and discussion.

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219 Native Patient Navigator Identity Native Patient Navigators have a unique and multifaceted identity. identity touches on three inter twining realms. First, Native Patient Navigators identity is i in Appendix F). See Appendix F code A Navigator identity is as a community servant grounded in intertr ibal understandings (See code B 2 in Appendix F). Third, (See code B 3 in Appendix F) Native Patient Navigators identity incorporates a professional group identity that is visible to outsiders of the group. (Note: The other three, major concepts introdu ced in this chapter are Appendix G code A D Community of P ractice D Navigator s D Native Patient Navigators were secure in their identity as qualified and trained pract itioners of their craft and helpers for those in need (within the boundaries of their professional agenda). Navigator s were driven to help communities, families and individuals; guiding others toward proper medical diagnoses and timely treatment along the cancer continuum. As one Navigator s concisely reported, their work as a Navigator s included helping people express and make sense of their cancer and/or treatment: Us Native Navigator y need. Navigator on a car tells you which direction to go, and so if they call and

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220 need some help, even like for a screening, we could tell them where they need to go to get their screening, we can tell them what facilities (tra nscript, 4 00026 1 personal interviews, 2012 13) Navigator s expressed their identity when conveying their parti cular line of work, which some Navigator s described as similar to that of navigating a direction, or a path over which someone trave ls while being of particular help with resources, direction, or as a cheerleader and providing a game plan. Identity Native Native Patient Navigators s own tribal identity (See code B 1 in Appendix F). Importantly, incorporatin g being Native was a critical part of their perspective. Navigator s talked about identity in terms of who they were and how they were taught as Native people to take care of their communities. Through this Native part of their identity, Native Patient Na vigators identification was a source of pride and connection: It makes me feel proud to say that I have a connection with other Indians out there, and when I go Navigator very proud to explain what I do (transcript, 4 00032, p ersonal interviews, 2012 13) I think our people are more willing to open up to me. Be responsive, receptiv e of me [pause] Because I'm one of them (transcript, 4 00040 personal interviews, 2012 13) They can identify with you. They can relate with you, because you're not really d ifferent from them. You're not [pause] your experiences might be a little different. You might have been raised a little bit differently but you're st ill part of the whole community (transcript, 4 00038, personal interviews, 2012 13) 1

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221 comfortable me being a Native, them being a Native (transcript, 4 00021, personal interviews, 2012 13) A Native Navigator [pause] it's not only just trust but how do you say it? Even though I'm not Navajo, a Navajo will trust me more than they will a white person, or a black person. And only bec ause I'm Native, not because I'm Navajo or anything, it's because I'm Native. I think if you give a Native Navigator as much information and knowledge as a non Native has, that they can communicate that just as well. If you have a choice why not choose s omething that is already i n place, why reinvent the wheel (transcript, 4 00034, personal interviews, 2012 13) ome back and give it to you, so I feel p roud to say that I am a Native Navigator s (transcript, 4 00032 personal interviews, 2012 2013) Navigator s guided individuals and families to resources in whatever areas they needed, serving as important advisors on which direction to go next and what help and resources might be available along the path. Connecting as a Native person first was important to many Navigator s This initial connecting as an Indigenous person has precedence in tribal practices. It is an important part of the protocol of Native introduction, a gracious and respectful way of Native individuals situating themselves for others, a protocol that is gen erally followed by many Native Nations Included in this introductory situating for others, language, would be details of where the Navigator was from, such as a tribal nation, reserve or village, as well as, in some cases, respective clans, and names of relatives, such as parents and grandparents. This introduction is also seen as a central part of establishing relationship, an important intertribal value (Garrett, 1999). Identity as a Native person for Native Patient Navigators was frequently in reference to an individual tribal nation, as well as an understanding of membership and belonging to an AI/AN inter tribal community. Identity as a Native within the concept of this commu nity was also important within the Navigator Navigator s recognized and talked in their conversations in relation to bein g part of their greater tribal nation :

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222 They [the tribal nation ] see the big huge need for it [referring to Native patient navigation] and that it actually works. It can save money from the time of from anywhere from treatment to because early diagnosis mea ns early detection means better outcome, for most people. Sometimes, for our tribe and our people, money is everything [meaning resources]. It makes the difference between life and death (transcript, 4 00044, 45 46, personal interviews, 2012 13) Thus, th e depth and breadth of identity for Native Patient Navigators is broad and inclusive of being Native within both individual and inter tribal communities. Navigator s and their communities were intrin sically connected because of a s self identific ation both with these communities and with the experiences of Native people: For me, again I can only speak from personal experience, but I've lived here. I grew up here. I know the hardships and what it takes just to get from your home to your appointme nt at IHS [Indian Health Service]. Sometimes you may have gas, but you don't have a reliable car, or vice versa. Or you've got children, when you go to IHS you can count on being there all day. And when you've got 4 little kids you don't want them runni ng around the waiting room all day. You're (transcript, 4 00044, 45, 46, personal interviews, 2012 13) Another Navigator s also identified with being part of a tribal nation trying to own c ommitment to being a resource: to the doctor, keeping their a find an answer to your problem. (transcript, 4 00032, personal interviews, 2012 13) When mentioning the identification of a Native person, as was the case of the Navigator s and their clients in this study, one immediately enters the realm of a critical discussion. At the heart of this critical discussion are critical theory critical race theory and tribal critical race theory Usi ng the tenents of tribal critical race theory when examining the issue of identity and Native Americans, one would need to explore the ongoing issues of colonization, racism and imperial ideology with the AI/AN population (Brayboy, 2005). For example, a cr itical discussion of the identity of Native Americans would therefore, include historical, social and political relationships and their effects on the

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223 identity of present day Native Americans. As well, a critical discussion would include the heritage of t he forceful assimilation of Native American people within these same realms (Brayboy, 2005). Tribal critical race theory (Brayboy, 2005) is referenced when Native Patient Navigators work in Western clinical settings, systems and health institutions that serve their Native clients. It serves as a way to frame Native identity from a n historical, social and political perspective and to understand the many implications of racism in public health institutions and systems in the United States and by implicati on, the AI/AN health and cancer disparities including the cancer incidence, mortality and overall cancer burden that have become a reality for Native people today Native Patient Navigators know inherently from history and experience that Native people are colonized people and that their AI/AN identity is manifested through colonization. Because of these relationships, Native Patient Navigators identity, as perceived by the participants, reflects the social positioning and membership in a group (AI/AN) tha t has been historically oppressed, as well as the inherent capacity to act produ ctively on behalf of that group: I know that going into our own [Native] healthcare facility and you see other Natives, you walk in somewhere, maybe you go down to the other hos and you know, a little bit intimidated (transcript, 4 00021, personal interviews 2012 13) Identity community s ervant Identity also pl ayed a significant role in how Navigator s recognized themselves as bei ng community servants. Native Patient Navigators defined their work as being more than just a job. Navigator s described their wor k as a passion, a commitment and a freely given sacrifice and service to help

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224 American Indian and Alaska Native (AI/AN) communities ( See code B 2 in Appendix F ) As community servants, Native Patient Navigators described their work as a calling to be of se rvice to the people and a way of contributing and giving bac k to Native communities. Some Navigator s talked of doing this service because of deeply held inter tribal understandings and the outward expression of their Native values; the values of sacrifi ce, service, dedication and compassion toward in this refe rence are the individuals of a tribe specifically, and Native people in general. This community servant value w as found with more than 50% of the participants. You kno w when I liv ed in avigation. I was in the city and I witnessed these patient s coming from the reservation and just some of them showing up with nothing. Knowing this program I worked for, we were g oing to have a gas voucher for them, a free place to stay, and money for food for them and a care giver, It just took a few times for me to realize that I have to make this commitment to these peop le. It's in. [pause] i t was in my heart and in my blood to help people. So I knew that [pause] I gave up a lot of things to do what I did (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) felt like you kno t the beginning of it, you know, the beginning stages of it, etting the conversation started (transcript, 4 00025, personal interviews, 2012 2013) And so I grew up serving the elders and serving my community. I'd always known when I was g rowing I did not know where my place in the world was, but I knew it was something that had to do with caring (transcript, 4 00051, personal interviews 2012 13) [B]eing a Navigator s what is most important to me is just interacting with my community. Interacting with the elders. Interacting with the Natives there. That, to me, is the most important (transcript, 4 00021, personal interviews, 2012 2013) The community servant role may additionally be connected to an understanding that many Native Nati ons have in seeing a responsibility to the upcoming next

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225 Frequently, for many tribal Nations it is an understood responsibility to think of the coming seven generations when making important key decisions ( Lyons, 1994). Navigator s reflected frequently on the future: I'm worried. I'm worried for the people that are going to be diagnosed in the future and not have the resources that were available. Or even have somebody in that role that they can talk to (t ranscript, 4 00044, 45, 46 personal interviews, 2012 13) Careers were forged a nd education obtained for many Navigator s because of this commitment to being a community servant to the people. More often than not, it was revealed by the study participants t hat they had worked their entire careers toward being a community servant to their tribal communities and of service toward Indian people in general. This deeply held dedication, commitment and compassion toward the Native community motivated individuals to initially become and to continue to b e Native Patient Navigators Often, this motivation was expressed as part of their own personal lifelong journey. Typically, individuals had worked several years in their communities as a communit y servant even bef ore becoming Navigator s then using the ir Navigator s role to continue on with their journey: of myself to my community. I am [Native nation] and I have been serving my community since I could serve my community. And this is my gift to th at I can do. I can serve my community through patient navigation. (transcript, 4 00014 20, personal interviews, 2012 13) eople would say, what is your what motivates you (pause) what is your drive? Healthcare American Indians need better health care. That was always my thing (transcript, 4 00047, personal interviews, 2012 13) To me, just like I explained earli er, I felt that being a Native Navigator the position she was talking to me about, going out into the community, teaching workshops, increasing knowledge in the community, being there for individuals who were seeking help, being able to, you know, navigate them through the healthcare system, being able to, you know, maybe for emotional supp ort. I think in our community, a ll tho se aspects were imp ortant to me (transcript, 4 00021, personal interviews, 2012 13) I'm still available for whatever help I can contribute to the program or the people. Or maybe I know a resource person. I know some of them I've become personal with, so I've always tried to establish those contacts. Sometimes even without a patient question I would just call them. So I

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226 can establish a hea lthier relationship with people (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) Just because our funds are gone doesn't mean cancer is done either. There's still going to be patient s who need that and what were going to start to see is people aren't going to either they're not gonna complete their treatments or they're gonna miss a lot of treatments (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) Trust was an important component in this journey. In several instances, a newly hired Native Patient Navigator had already held a long standing position of trust within their community. This trust was earned over time and was built on years of working in his or her AI/AN community. Many times the years of previous work of Navigator s which had garnered the trust of the community was characterized as beginning or grass root start up initiatives, established by countless hou rs of volunteerism or low paying work grounded by an on going commitment to improve the lives of AI/AN people. Some examples of this work for Navigator s were in nonprofits or AI/AN projects working in problem areas in areas such as education, health, or with youth and families. The years that Navigator s had previously invested frequently spanned generations o f a So, I'm still working with [their] youth and I'm still working with [their] famil ies. So, I helped that person graduate by the time I got to [do the work I do now] those women were 40 years old. So, those are the women that I helped with getting mammograms for their first time. They knew me because I worked with them when they were younger. They bring in their mothers because they trust me with themselves, so they trust me with their moth ers also (transcript, 4 00034 personal interviews, 2012 13) Thus, many Navigator s had known their clients and some of their family members throug h phases of childhood, adolescence and adulthood. Always, this trust was entwined with serving the community: Trust is very important because a lot of you know there have been programs in the past that have come in and you know, come and go. There are pr ograms out in the communities who have not have received services from a program, or might have been treated poorly in a program before. So, they might already ha ve come in with concerns. So, really it's establishing that trust. Trying to let them know that that program hopefully would not do those kinds of things, is an issue (transcript, 4 0005, personal interviews, 2012 2013)

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227 It's important because if you don't have that trust, you know, the patient doesn't trust you, you're not going to get anywhere. There might be some resistance or you may just loose the patient (transcript, 4 00053 personal interviews, 2012 13). I think that it's just having those conversati ons, gaining the trust with the patient s and having those conversations with them and allowing them to be open and honest with how they want their care plan and how they want their treatment to be done (transcript, 4 00042, 4 3 personal interviews, 2012 13) the years, down the generations. That little wing of tru st will never be in place that will make it (transcript, 4 00028, personal interviews, 2012 13) Navigator s had earned trust, through time, and the making of relationships. These relationships were akin to that of a kin ship role. Native relationships are made based on this trust and respect; a relationship, which at times does not match Western views of kinship and is more like a close famil y member (Duran & Duran, 1995): You have to consider yourself as part of the fa mily. You have to put yourself in their place somewhat, as much as you can, as much as you can (transcript, 4 00025, personal interviews, 2012 13) This view of relationship and Native kinship is inherent in Native ways of knowing and b eing. These Native u nderstandings are centuries old. Indigenous peoples throughout the world have sustained their own worldviews and their associated knowledge systems from time immemorial, even while undergoing major societal upheavals as a result of such factors as coloniz ation and other forces beyond their control. Many of the core beliefs, values and views associated with these Native ways of knowing and being have survived and are beginning to be recognized as having value and applicability to tod e, the Navigator s are using Native understandings, as they interpret them, to help Native people participate in elements of Western medicine. Moreover, the Native ways of knowing that have been described have on going parallels with ideas framed within soc iocultural theory. This theory and its perspective

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228 explains that human development, especial ly higher order functions, develop out of social interaction (Tharp & Gallimore, 1988). Taking the viewpoint of a sociocultural theorist such as Vygotsky, one wou ld summarize that, in order to understand this higher order development, one must look outside of the individual and examine the social world in which the individual develops. According to a sociocultural way of interpreting and perceiving, this learning does not take place withou t a sociocultural context. P ut more simply, the individual must participate; learning is not a sole individual activity. In particular, Vygotsky, according to Kublin et al. (1989), would also emphasize this learning as occurring with people, objects, and as embedded within a social context and events in the surrounding environment. Aligning this idea further to N avigation and its tools of education and guidance, Native Patient Navigators are therefore, instrumental in changed lea rning in Native patient n avigation of AI/AN in cancer treatment processes and initial screenings. Thus, contributing to the learning or changed participation of Native people in cancer screening and treatment is part of a Native Patient Navigators communi ty servant identity. Navigator s recognized that cancer was a huge problem in their community, not only because of the gravity of the number of Native people being lost to this disease, but especially because of the loss of elders, who for many Native Natio ns are the sacred keepers of tr aditional knowledge and Native w ays of k nowing and being and wisdom keepers of the community, chronic disease or death deprives the community of that irreplaceable resource (Kaur, Burhansstipanov, & Krebs, 2013 ). A Navigator spoke of the importance of using elders in their traditional capacity as facilitators of learning within a social context with people in their cancer education efforts:

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229 Yeah. The way we addressed that was we actually sought out people in th e community who were looked at that. Because people trust their elderly and they listen to them and they so if we could get some of the elderly patient s and c an cer free to come in and talk (transcript, 4 00044, 45, 46 personal interviews 2012 13) Critical to this is the impact that occurs within traditional societies and the burden of cancer with regards to the loss of elders: Few however really document the com munal nature of the burden of cancer. This is particularly true in traditional societies where roles and responsibilities of elders provide cultural continuity through generations. Much of the cultural values in AI/AN communities are transmitted through o ral history and role modeling. There are many publications documenting linguistic losses through the death of elders. However, elders influence many ad ditional components of culture [Deacon, Pendley, Hinson & Hinson, 2011; Jervis, Boland & Fickenscher, 2 010; Kirmayer, Dandeneau, Marshall, Phillips & Williamson, 2011; Mohatt, Fok, Burket, Henry & Allen, 2011] such as ensuring that ceremonies occur and traditions are honored and passed to the next generation (e.g., purification of a pow wow drum when the l ead drummer passes on (Kaur, Burhannsstipanov & Krebs, 2013, p.64) A further element of this identity as a community servant is, as suggested by critical theory Native people know firsthand what it is like to be the underdog. This additional intrinsic m otivation may be from knowing what it is like to be a person, who at times is disenfranchised from society and has experienced disparate treatment at the hands of Western institutions. Several Navigator s saw a side of society that they could relate to alo ng with other AI/AN, in having oppressed minority status within a dominant society. Navigator s remarked: We see the familiarity of the barriers, the struggle. We can identify with the problem that they might be facing, and so we're more sensitive I think (transcript, 4 00014 20, personal interviews 2012 13) ou hope to get the same respect that everyone should get, but as Native peo ple we (transcript, 4 000G, personal interviews 2012 13) Navigator s in remarking on this dyna mic, expressed empathy and furthermore, saw themselves as being protectors and shields, as part of their community servant identity. I just think it's important for people to know or for our people to know, that there are people our there that will help them. That will intercede and stand between them and our culture and white

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230 man. Basically, will watch over them and make sure that everything's going to be ok. They need to know that. And they need to know that we will push for the funding and we will push to get what we need to see to it that their needs are met. That's i t. (transcript, 4 00040, personal interviews 2012 13) Typically, these incidents of lack of respect are in institutions that have been noted for institutional racism, resulting in Native s incorporating significant historical mistrust for Western institutions and Western medicine in general. Thus, Native people incur these situations of racism, as well as face the stigma of cancer in their communities. Navigator s have responded to these issues. A Navigator continues on the issue of the lack of respect of Natives, at times, receive: [B] ut as Native peopl so you n eed someone to watch your back (transcript, 4 000G personal interviews, 2012 13) This Navigator was willing to acknowledge the situation Native clients sometimes find themselves in and serve as a witness and a mediator. Knowing what it is like in th at situation, in turn, created Navigator s actions on behalf of Native people facing similar circumsta nces. Native people, who like them, often find themselves at the bottom of an oppressive US society (Brayboy, 2005). Tribal critical race theory (Brayboy, 2005) challenges this racism and colonization that are prevalent in society and Western institutio ns. Racism and colonization have been so endemic and prevalent in US society and its institutions that these elements often become unseen, excep t to those who have experienced it (Brayboy, 2005). For example, in billing situation, the question was put [by a hospital employee towar d an elderly Native individual] (transcript, 4 000G personal i nterviews, 2012 13) Navigator s also frequently emphasized the importance of their work and its relationship to their community servant identity role:

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231 Definitely. I know that it's very important you know, to keep up and have those screenings. It's very i mportant being educated on cancers and how fatal they can be. It's very im portant for our people to learn (transcript, 4 00035, personal interviews, 2012 13) This intrinsic motivation came for Navigator s from deep within themselves. Navigator s often had c lose relatives who had been lost to cancer or they themselves had personally experienced cancer (at least two of the 26 Navigator s voluntarily revealed they were cancer survivors). Sometimes, Navigator s performed their roles with their own families: It's definitely ch anged my life because I didn't personally, I didn't realize that there's so man y Native Americans, not just in [Southern Plains State], but in the United States, that have been diagnosed with cancer. A lot of them, you know, family members, becau se I've navigated my own family (transcript, 4 00035, personal interviews, 2012 13) been turned away by my tribal leaders ys helped (transcript, 4 00032, personal interviews, 2012 13) This became an added motivation for Navigator s which in turn was incorporated into part of their community servant identity. Finally, as part of the identity of com munity servant, was the idea of being reciprocal. The important act of reciprocity is communally inter tribal value understood within Native ways of k nowing and being (Garrett, 1999). Giving back to the people and the community was, therefore, important f or Navigator s both for this understanding and for blessings received in their own or their exten journeys: ow I truly feel about navigation is giving back to my community and giving them a chance. Giving our community a chance ( transcript, 4 00025, personal interviews, 2012 13) I felt that I wanted to take my position as a nurse and in some form or some way use that position or use that to give back to my community. I knew that when I became a nurse, I either wanted to work in he althcare, in some way helping our elders, you know, being there for them (transcript, 4 00021, personal interviews, 2012 13)

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232 It means, to me, giving back to my community in the realm of something good. In this particular (t ranscript, 4 00025, personal interviews, 2012 13) [T] o help someone else and to help subside their fears and to educate I think is a way of paying it forward or to giving back that that I have been given. And I' m looking forward to doing more (transcript, 4 00040, personal interviews, 2012 13) This reciprocity within a community serv ant realm played a big part in intrinsic motivation. Navigator s also had another facet to their identity, that of being a professional. Iden tity p rofessional. Nav igator s besides having a Native and a community servant identity, had a professional identity as well (See code B 3 in Appendix F). This professional identity encompassed the roles and tasks of navigating clients to timely resources along the cancer cont inuum. A perception of professional identity was dynamically influenced, because it reflected the expectations of the AI/AN community, as well as Western medicine. Thu s, the professional facet of a Again, the Navigator Navigator brings a lot of ease to the client. If the patient is comfortable, then they can be navigated through the medical field because there are just not going to happen. And then as more time goes by, the less you want to do it. So this way, if you have your Navigator s squad. You know what I mean? (transcript 4 00025, personal interviews, 2012 13) I coordinate basically, the needs of a person in our community, American Indian, who is diagnosed with cancer in terms of providing their needs. I look at it in terms of the Medicine Wheel which is helping them to id entify what are their needs. Like maybe physical, spiritual emotional, or psychologica l (transcript, 4 00014 20, personal i nterviews, 2012 13) I think my job there's a lot of pride in my job. you have to be very creative, l ike I said, with working on the reservation. I mean, I've gone to big cities, I've gone to all these places to learn how to be a Navigator But where you where they have these trainings, I mean, they have all these resources at the tip of their fingers and sitting there through the training thinking ok, well how am I going to take this back to the reservation and how am I going to incorporate this. We don't have anything near as close to the resources that th ese people in these cities have (transcript, 4 00 042, 43, personal interviews, 2012 13) Navigator s because I can re (transcript, 4 00032, personal interviews, 2012 13)

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233 Moreover, there was also refle ction and discussion to mold th is professional identity among Navigator s themselves; several Navigator s discussed what their roles were, and reflected on individual decisions and incorporated a joint consensus among each other, resulting in a common practi ce. This informed and defined their professional identity: No. No. I think you need a lot of people skills. But I think that kind of comes along with it. Eventually it's gradual. When [Native Patient Navigator A] an d I first started, she would say [ Nati ve Patient Navigators B], you know everybody. When we go somewhere and , but, we'd partner up and we'd start going throu gh the community [Now Native Patient Navigator s A is] knowing everybody. And I'm so glad that she's continuing because she has that abil ity. And I've always told her I'm still here. Just because my job ended, I'm still here in [Tribal reservation] and I'm still available for whatever help I can contribute to the program or the people. Or maybe I know a resource person. I know some of them I've become personal with, so I've always tried to establish those contacts (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) that she [Native Patie nt Navigator colleague ] helps out. I think as a team, we help each other out (transcript, 4 00032, personal interviews, 2012 2013) Individuals expressed pride in their professio nal identity of being a Native Patient Navigator : And you know, I feel, I don 't want to say special, I feel really proud that some of the things that I've learned, that I can just share and you know, have it work in other places. So I'm, you kn ow, I feel proud in that aspect (transcript, 4 00051, personal interviews, 2012 2013) Nav igator s described t heir professional identity within their communities as being a resource along the cancer continuum: Ther e are several things I can do, explain the Contract Health System through tribal governments, and IHS, I can talk about IHS formulari patient s and talk tre atment, or particular imaging procedures, for example, MRI, CAT scans. I can talk with the doctors, I have direct access to clinical staff, I can see them o n a daily, n ot only for the patient but the tribe, I can help the tribe help their citizens, for e assist the patient s in their continuity of care, so items within their care plan are fair game for me to help. There is a lot of flexibility as every patient i s different (transcript, 4 000G, personal inte rviews 2012 2013) So it 's one of the things that I'm, had to do is look at other resources and other places and possibly other tribes that might be able to assist with that, like them having to go back.. Or for instance, if they live out of the service area I did find clinics that were you know, quite a drive away but were able to give them the biopsy for free (transcript, 4 00039, personal interviews, 2012 13)

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234 Education questions [led to other things]. Once we got the interest and people knew more about you kn ow, cancer and screenings and the treatment, most people wanted to get screened. So from then on, I believe that's where patient navigation started, even though they weren't actually diagnosed, we were still helping them make the appointments. Finding out when the clinics were offering these screenings and if they were even eligible, because they go according to age. Some people didn't weren't members of the tribe so then we would refer them to a state program. Somewhere where they could where the service s where being offered at no cost or low cost. So there were all these variables that we had to consider. There were even things like women didn't even know how to pronounce the word mammogram. Or didn't know what cervix w as even though they've had a Pap sm ear. They know they've had one they just didn't know why. Or that it was a screening to predict cervical cancer (transcript, 4 00044, 45, 46 personal interviews, 2012 13) [A] pparently right now they are working on an electronic medical record linkage betwe en Indian Health Service and the hospitals here. We were made aware of it this week that there is some sort of linkage. But, unfortunately, only certain people know about it, so unless the cancer patient knows that the medical records go back and forth, no one tells them. They're in the dark and so, there's a lot of things that happen with Indian Health Service that are not communicated properly to the patient Like you know, if you go in for cancer treatment making sure that your referrals are connected wi th Contract Health Service before hand to get those approved. Or making sure that you have transportation, you can call within 24 hours, you know, those type of things. And I think that's where a Navigator helps out, but it's also a point where Indian Heal th Service needs to provide information, going outside the referrals these are some of the things you need to be aware of. You need to take your social security cards, you need to take your medical records chart number and you need to have a contact name f or this and that. You need to keep track of your doctor office visits, who you visit when and all that. So, that's when, working urban city] is making sure that patient s are aware that before they go to those, you know so there's more comm unication (transcript, 4 00056, personal communication, 2012 2013) Navigator s additionally used their professional identity for strong advocacy and becoming fighters for their clients: I had disagreements with IHS. I've been intrusive and annoying by the clinical director. I've had I've had my battles. And each time somebody got a denial letter from IHS, I was, just encourage them to just keep writing, you know, write back. Go back to the clinic. Don't give up. I've even encourage some people to take it to the health board because [the] health board meets with all health programs and IHS. And I've gotten scolded over that too. Not by my supervisors, or my work place, 'cause they've always supported everything that we do 100%, but from IHS, from peopl e in those positions. So you really have to be a fighter, if you will. And be a very strong advocate (transcript, 4 00044, 45, 46, personal interviews, 2012 13) He was having a hard time calling so what we did was he was making an effort, so what we did was we helped with him by actually going in there and you know, talking to a medical records people and getting his medical records for him that he would take. For some reason, I don't know if it was just the person at the medical records place, he was ju st not you know, helping out talking to somebody, bu t [by] having some other person, (transcript, 4 00056, personal interviews, 2012 13) Navigator s described the main goal of their navigating was to help with resources to timely cancer diagnosis and care. Because of the nature of dealing with providers such

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235 as Indian Health Services and Contract Health Service, as well as Western health providers, flexibility was key to getting the work done: Other ways I'm different. Well, some of the issues that come up w ith me, or that I've noticed in our communities is that we'll have patient s come in, they'll travel from a long distance to come to the clinic, and then when they have an abnormality and they don't qualify for any of the other programs, they may not have i nsurance, they may not qualify for BCCP, and then one of the problems is that they won't qualify for our contract health dollars because they live out of the service area. So it's one of the things that I had to do is look at other resources (transcript, 4 00039 personal interviews, 2012 13) I may sound like a nice person over the phone, but I can be really, really you know, pushy when it comes to helping one of my patient s (transcript, 4 00044, 45, 46 personal interviews, 2012 13) Getting th as important to Navigator s Not getting the job done, at times had critical implications for some patient s: [Native client] we've worked with and he was diagnosed with prostate cancer. So he lived out in a [rural] area and had worked for the tribe that he was from, and he had private insurance. And so when he started going through treatment, he expe cted his private insurance to, Indian Health Service to pay for a lot of his treatment. And so we had to explain to him that his w ife and I had to explain to him that Indian Health Service was payer of last resort. If you have health insurance that they would start billing that first and if you had health insurance you'd also have to have co pays. And the co pays itself wasn't someth ing the Indian Health Services would pay for. And so he had to pay out of pocket for his co pays. That was one hurdle. And then in addition, he had to receive services at Indian Health Service, so he had blood work, he had some labs, and some other screeni ng exams that were done at Indian Health Service, that he had to make sure was sent to his oncologist in town. His oncologist needed his information before his first appointment. And so he tried calling the medical records folks at the Indian Health Servic e, telling them to make sure they sent it over. They told him they did, but they never never received it. He kept calling and calling and they never answered his call. So, he actually had to go to Indian Health Service records place and tell them that the y needed to the doctor never received it so he had to miss his first appointment which would affect his treatment schedule and so forth. So, what we did for him, we had to work out a deal where he would get, you know, he basically had to take a lot of tho se lab works at the office at a cost to him because that was the only way that the doctor would see him to start planning for his treatment. And so we make sure that they Indian Health Service knew that that was an issue. That should not happen be cause that was an aggravating factor to the person. That may have prevented many people from going in for treatment on a timely basis (transcript, 4 00048, personal interviews, 2012 2013) Although Navigator s go by different titles depending on a variety of factors, in discus sion of other terms for Native Patient Navigators and the appendix B for advanta ges and disadvantages of where Navigator s wor k). As well, this N avigator s

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236 professional work has changed from its early beginn ings contributing to Navigator s professional identity: Well, the way I see it is, is when I first started out the work I did was basically teaching people about cancer, the basics of cancer. Eve rything from this is how you get it, changes, screenings, you go in for screenings, treatment options. Basically it was just educating folks. Over the years it 's evolved to you know, getting, or teaching them about cancer. Having them screened you know. T eaching them about treatments. There's only one part of that process that you really need to have folks back home, those support folks that will help with your cancer journey because they deal with a lot of issues in terms of their own physical health. T rying to manage the outside organizations that they have to deal with in terms of their treatments. So, they have issues of financial billing, even though they may be covered under Indian Health Services and Contract Health Services they may still get bil led on a regu lar basis and not letting their, there's a process that they have to go back and get a hold of Contract Health Services and tell them their rece iving the bills and transfer, and not worry about that. Helping them figure out if they need to ap ply for any other benefits, or you know, just dealing with issues from the doctor when their appointments ar e and just dealing with all the, I guess, just all the medical that they have to go through. So, seeing that perspective has changed. Just folks m anage and trying to navigate that system and eventually helping wit h their emotional and spiritual that personal journey. First it was educating and now it's the personal journey of someone (transcript, 4 00048, personal interviews, 2012 13) This professi onalism was apparent among individual clients as well as providers and health entities: I think that it's just having those conversations, gaining the trust with the patient s and having those conversations with them and allowing them to be open and honest with how they want their care plan and how they want their treatment to be done and then being that cultural broker or that liaison between them and the physician. You know, teaching the physician and letting the physician know what this patient wants and how they want this part of their journey to play out. And then, being a mediator, if they have to you know, compromise a little bit, getting them both at the table comfortably and getting them to trust each other so they can work together for the patient to get the best car e the patient can possibly get (transcript, 4 00042, 43, personal interviews, 2012 2013) I helped I help in different ways, as far as patient s continuing their care. Making sure that they come back for return visits. Make sure that lab s, you know, things like that are done. I coordinate with the whether it's the Indian clinic or the hospital, Indian hospital, anything that can be done there. And call the patient let them know their next appointment is at, just An d I schedule their MRI's, CT's [at tribal medical center] anything like that, that can be done wit hin that, within their facility (transcript, 4 00035, personal interviews, 2012 13) Part of the professional identity of Navigator s incorporates using cultural competency in their AI/AN commun ities. In this regard, Native Patient Navigators use their years of knowing and working with their communities as the basis of cultural competency and as part of the establishment of a professional identity to be successful in their wor k:

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237 I think knowing the culture. If you're going to become a Navigator for a certain part somewhere, then you need to know what the culture knowing wh at the culture of the people is (transcript, 4 00049, 50, personal interviews, 2012 2013) I think the best thing with some of the Native folks that do navigation whet her they're paid for it or not or working as educator an advocate a lot of them e nd up focusing more and more on helping that person more with their sort of their emotional and sp iritual needs and seeing how the family issues, the distance how maybe some of the cultural issues impact them (transcript, 4 00048 personal interviews, 2012 13) y the Creator gave us these new medicines maybe. I mean, that would be hard, no doubt, but to show them that maybe it was meant to be that way (transcript, 4 00028 personal interviews, 2012 13) This professionalism supported the importance of beginning and continuing conversations regarding cancer with Native Americans: But, now that cancer is very wide spread and everybody knows about it, people are talking about it killing our people. It is killing our people and when they go and have their che even, now a lot of people do talk about it because ou r people are dying from it (transcript, 4 00032 personal interviews, 2012 2013) Cancer is one of those things where you just don't really talk about it, but it's there and it needs to be talked about and it n eeds to be made fully aware to our people that it is there and that screenings are very important (transcript, 4 00035, personal interviews, 2012 2013) However, this Native Patient Navigator professional role has its own challenges: In the grandiose world there are so many definitions of Navigator a lot of things get dumped on you, your different from a doctor, different from a nurse, different from a CHR [Community Health Resource] person, an x ray technicians, you are getting an influx of duties and tha t can for that (transcript, 4 000G, personal interviews, 2012 13) Navigator maintain their professionali sm while figuring out how to meet all the needs of their patient s (transcript, 4 00029, person al interviews, 2012 13) able to pull this off comes front and center (transcript, 4 00028, personal interviews, 2012 13) The challenges I think, like helping individuals, but also making sure that they self advocate for themselves through a challe nge (transcript, 4 00056, personal interviews, 2012 13) Finding resources when you're down, when you've tried everything. It's really frustrating when you can't really find anything else to help somebody. So that was really like digging in and trying testing. That's

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238 expensive. It's not covered by IHS in our area s and so that was finding clinics that would provide that or has been (transcript, 4 00039, personal interviews, 2012 13) Well, I'd like to be, but on the other hand I do have my family at home and as much as I'd like to take time away from supporting them it just kind of saddens me to think that may or might happen. A grant is a grant. It could be gone any day, or the money could just run out and then where does that leave me at. And it's not necessarily the money or anything like that, it's more I just lost a job that I really like d (transcript, 4 00052, personal interviews, 2012 2013) knowing your limitations as a Navigator (transcript, 4 00025, personal interviews, 2012 13) Navigator from and where they ar (transcript, 4 00025, personal interviews, 2012 13) You need to have defined roles (organizationally, professionally and personally). You have to have that balance within yourself (transcript, 4 0 00G, personal interviews, 2012 13) facets of identity are interwoven and are fluid, with each flowing into the other and coming into play when needed. Where custom, culture or knowledge dictates an involvement of one or all three of t hese face ts, the use of Native Patient identity can have a significant impact on the implementation, education and overall success of a project that is focused on reducing cancer deaths among AI/AN people. Growing up we (pause) honestly, we were always it doesn't pertain to us. Knowing that, as far as growing up in that mentality it makes a lot of sense now even for other tribes for them not to know and be educated on cancer (transcript, 4 00035, personal i nterviews, 2012 13). At times Navigator s were interweaving these facets and Native or Western perspectives: I think it is holistic in approach but I also have to really meet the person where they are. And some of the folks I've dealt with have different f aiths. They may not follow the traditional Native faiths. They may be more oriented toward the Christian faith and or to the Catholic faith and we have to meet the Christian where they are. We have to see if they want prayer done for them. Having their cha plain that's located, come and pray for them done. Or hooking up the telephone to folks back home who may be doing a prayer for them and have them listen in to the prayer. So it is holistic in terms of making sure that the mental, spiritual, physical, and emotional needs are taken care of from a perspective of meeting them where their needs are. I've met a lot of folks who are not traditional in their beliefs, but have a spiritual belief but still it is holistic. (transcript, 4 00048, personal interviews, 20 12 13)

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239 Interweaving these perspectives are important to our next topic of discussion, Navigator s and their communities of practice Native Patient Navigators Community of Practice The next overarching code was a community of practice According to Lave and Wenger, (1991), a community of practice is defined as a collection of people who gather on an on going basis, engaging in some common endeavor (Lave & Wenger, 1991; Wenger 2000). (See Appendix G, the table is read right to left, as in the previous and all subsequent coding tables). A community of practice has important distinctions. An important difference for a community of practice is that the group in question does not merely meet on the basis of shared interest Communities of practice al so are not solely defined by geography or nearness. What really sets apart a community of practice among other things, is the meaning making behind its sustained ongoing practice. This on going, shared practice is crucial to defining a community of prac tice In the process of sharing in a group enterprise, the group develops specific and characteristic ways of doing things, as well as it shares views, values, and over time, the community develops power relations and even ways of talking (Lave & Wenger, 1991). Identity also plays an important role within these groups Communities of practice thus organize themselves around their specific area of activity, as well as knowledge, which gives group members both a sense of engagement and identity in its joi nt enterprise. Members therefore, situate themselves within the group membership and later in relation to the larger social order (Lave & Wenger, 1991).

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240 Intrinsic to a true community of practice is sharing an experience over time and sharing a commitment to a collective understanding. This further helps to differentiate some other groups from a community of practice Members of the group have a mutual sense making about what they are doing, about what participating in this enterprise looks like, even how they relate to other communities of practice and how they as a members relate to the larger world (Lave & Wenger, 1991). Etienne Wenger (1998) explains three essential dimensions within a community of practice First is what the group is about, such a something that is understood and continually negotiated and renegotiated by participants of the group. Second, members are mutually engaged, they recognize each other as members, and this in turn, binds members into a speci fic type of social identity. Third, a shared group capability is produced and enhanced, for example, a shared repertoire of resources becomes available to each member. These resources can be items such as artifacts, routines, engaged vocabulary and style s developed by the group and its members over time: Yes. Yes definitely. Like I sai d, it started with us doing the began with the education but when we got people in to get their screenings, there were still all the questions with follow up, referrals, fun ding, and just working with the tribal. Once the tribal programs knew what our role was in the community and once they knew that we had financial assistance to help these patient s then we sure got a lot of phone calls and a lot of referrals. We kind of spr ead like wildfire here. (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) I coordinate basically, the needs of a person in our community, American Indian, who is diagnosed with cancer in terms of providing their needs. I look at it in terms of t he Medicine Wheel which is helping them to identify what are their needs. Like maybe physical, spiritua l, emotional, or psychological. (transcript, 4 00014 20, personal interviews, 2012 13) I'm constantly, I think it's a huge part of my job is to collaborat e and partner and network with people not only in the state, but people across the nation. Because we have so little resources I think every person that I come into contact with you know could potentially help me with the job that I'm doing here. And then just going on and getting as much training as we can. (transcript, 4 00042, 43, personal interviews, 2012 13) Navigator s as a community of practice are well known in their communities:

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241 No. I don't think at all. In fact, in our community we just were t alking with the providers, meaning the doctors and mid levels that work in our local hospital, and the administration and one of the things it's real difficult to find for us, a permanent hire staff up there is there for 2 years, so we have a huge turnove r rate in our area, so one of the things they've talked about is maybe hiring more Navigator s that can help patient s through the whole system. Maybe they're the ones that can help us get people to the proper funding. Making sure they've got Medicaid, makin g sure they've got to walk through the whole system. Not rely on nurses that might not be there in a couple years and not rely on the staff that we don't have currently and they can help make arrangements and they can be the liaison between the patient and the doctor (transcript, 4 00049, 50, personal interviews, 2012 13) Navigator s in their community of practice become very knowledgeable and experts in applicable areas: Umm hmm. And that's usually the most common difficulty that we've heard from other folks is that Contract Health Service policies and processes. And there's an assumption made by Contract Health Service that people should already know about this, but the patient doesn't know and so there's that missed communication and conflict that happ ened when people get billed because there's the assumption that all medical care is co vered by Indian Health Service, the payer of last resort. So that's one difficulty of Contract Health Services. And also in terms of who they refer to because they have t heir contracts change every year, so the team that you saw last year might not be the person you get to see this year, so there might be issues with continuity of care, in that regard (transcript, 4 00056, personal interviews, 2012 13) Well the [ payer of] last resort, so sometimes when you go in and you get services they look at what kind of health insurance or coverage that you have. So say for instance you're new and you don't have your own health insurance through work or anything. You are not on Medic aid, Medicare. So they'll have you apply for Medicaid again and they'll wait for you to be denied and actually receive a denial letter before they will pay for that kind of stuff. So that kind of extends the time when people can go in for treatment as we ll because they will not authorize treatment until they have a payment source of some sort. So as I said before, if a person comes in and they don't have any insurance, they apply for Medicaid. They apply right on the spot. Many times it can be up to a week or two weeks before they get reviews and get sent, you're denied Medicaid because you own this, you make too much money, or your here in [southwestern state] and there a single adult with no children. So that's when Contract Health Services says ok, we'll pay for your care. But if you have any type of coverage, that coverage will be billed first before (transcript, 4 00056, personal interviews, 2012 13) I can talk with the doctors, I have direct access to clinical s taff, I can see them on a daily, No t only for the patient but the tribe. I can help the tribe help their citizens. (transcript, 4 000G, personal interviews, 2012 13) Nature of w ork : a blend of both community and professional aspects The Native Patient Navigators community of practice is a blend of both community and professional functions. For ex ample, when examining a Native Patient work, I/AN communities A discussion about

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242 a Native Patient Navigators community of practice will necessarily include how Native Patient Navigators professional roles fit within an AI/AN community. Likewise, one cannot avoid talking about mentoring and learni ng within this Native community of practice without talking about Native ways of knowing and being as well as Amerindian circles of learning and Socioc ultural perspectives. Different parts of community practice and professionalism thus flow into each oth er. These aspects of the professional and community functions are intertwined for Navigator s, their identity, and their practices. Like I said it's just knowing the area, the attitudes, the economic aspect of where you're working. I know if I had, even a Nati ve person who maybe grew up in [urban city] and lived in [urban city] their whole life, if they you know, came here and tried to do some of the things that we do on the the p eople that I work for in [urban city] sometimes there's things that they want from us as Navigator s down here, I mean, they just expect they're gonna happen within a certain amount of time and we have to constantly explain to them that that's not really ho w it works on the reservation. And especially working with tribal government. I mean, if they want something and they want it at a certain time, they may not get it when they want it. And the tribal government will give it to you when they're ready to give it to you. Like I said, pride is huge on a reservation. So is trust. I mean, so you have to come into it you know, knowing those things (transcript, 4 00042, 43, personal interviews, 2012 2013) Often, women will even put off going to the doctor knowing th cost money, so they put it off, not really facing the fact of short term versus long term costs. And a lot of people who are in a lower socioeconomic strata make different decisions based upon economi have to ha ve money making their decisions, think are uniquely Native because I know that all cancer patient s need those types of support. W hat is uniquely Native is how those supports are provided for and mended together. (transcript, 4 00029, personal interviews, 2012 13) [A] hen I step out, as I say in the [Native c got, and as a result, culturally and clinically (transcript, 4 00028, personal interviews, 2012 13) There was definitely a strong bond built there between [ Native Patient Navigator co lleague] and I and our patient s. A lot of times our patient s woul [Western Medical Facilities]. They would call us first because they want to sometimes I felt like they want to make sure they're asking the right questio ns or they want to know how to ask the question or if they should even ask the question. I really respected the fact that they trusted me enough to call me. And they were open about things. Not only was the patient calling but the family would call too. (t ranscript, 4 00044, 45, 46 personal interviews, 2012 13) Joint e nterprise : a shared domain of interest. A group engages in a joint enterprise through their group actions and interactions when they create a shared

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243 understanding of what helps bind them toge ther ( See code B 1 in Appendix G). This, in turn, is called their joint enterprise. Significantly, the joint enterprise is continually community ( Wenger, 1998 ). This shared domain of interest and practice is what binds Native Patient Navigators together along their work along the cancer continuum. It is the sharing of and an un derstanding of navigation work in AI/AN communities: And I think for those individuals that I have navigated, one piece was helping to make decisions around informing families, you know, interfamily relationships, and another piece was helping people to g et access to the appropriate care, sometimes because of cost or distance or transportation or other barriers, and then actually seeing them through crossing over. (transcript, 4 00029, personal interviews, 2012 13) What I do is basically do a lot of breast cancer screening with the mobile clinics from [urba n hospital], a doctor here in [metro area] and also with [medical center]. The vans come out and I recruit Native American women to get breast cancer screening. I also do case management and take care of women who have tested positive f or breast cancer. We also do a survivors circle for Native American men and women who are diagnosed with cance r and I coordinate that project each month. (transcript, 4 00014 20, personal interviews, 2012 2013) Here, Navigato r s explain their joint enterprise and how the pieces of this understanding of navigation work in AI/AN communities this context is another way of referring to the death of a client. This shared domain of navigation work in AI/AN communities suggests Native Patient Navigators as a community of practice possess mutual interests and group collective goals. These goals are what a Navigator s I identify with the ir cheerleader. I am a cheerleader that helps guide the game plan, through Contract Health System, what the oncology says, and transportation and lodging, making referrals. (transcript, 4 000G, personal interviews, 2012 13) Navigato r s a more general meaning, Native Patient Navigators were clear on their idea of patient navigation: [B] ut she always told the story about that navigation and it always made me think about how a Navigator on a boat is the one who kind o inform the patient (transcri pt, 4 00029, personal interviews, 2012 13)

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244 Definitely. Yes. Because I don't want a patient to leave and leave unsure on what was being said, on what their diagnosis is, you know. I don't want the patient to leave with confusion at all. And if they do, if there's questions that do come up after they're already gone, maybe it's on their drive home or when they're at home. I've had patient s call me at 10:30 at night and I talk to them and you know, take that one on one time to talk to them and so I know a lot of that trust is built on that they know that I'm there for them (transcript, 4 00035, personal interviews, 2012 13) These Navigator s Native Patient Navigators together and is the underp inning of the joint enterprise in their Navigator s community of practice Mutual e ngagement. M utual Engagement is defined as to how, while through participation in a community of practice the members build collaborative relationships in the group and establish agreed upon norms ( See code B 2 in Appendix G) Participants work together within the Native Patient Navigators community establishing professional relationships. It is these relationships that tie the members of a group together as a social e ntity and a community (Wenger, 1998). Mutual engagement implies that the members of the community of practice engage with one another in discussion, dialogue, and exchange. Navigator s commented on the usefulness of exchange to their practice and remarke d on helping each other out along the way: [O] ne thing we found is that as Navigator s are able to learn and share with each other; we improve (transcript, 4 00029, personal interviews, 2012 13) So there were all these variables that we had to consider. There were even things like women didn't even know how to pronounce the word mammogram. Or didn't know what cervix w as even though they've had a Pap (transcript, 4 00044, 45, 4 6 personal interviews, 2012 2013) that she [Native Patient Navigator colleague] helps out, I think as a team, we help each other out. (transcript, 4 00032, perso nal interviews, 2012 2013) No. No. I think you need a lot of people skills. But, I think that kind of comes along with it. Eventually it's gradual. When [Native Patient Navigator A] and I first started she would say, [Native Patient Navigator B], you know everybody. When we go somewhere and but, we'd partner up and we'd st art going through the community [Native Patient Navigator A is] knowing everybody. And I'm so glad that she's continuing because she has that ability. And I've always told her I'm still h ere. Just because m y job ended, I'm still here in [tribal reservation] and I'm still available for whatever help I can contribute to the program or the people. Or maybe I know a

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245 resource person. I know some of them I've become personal with, so I've alway s tried to esta blish those contacts. Sometimes even without a patient question I would just call them. So I can establish a healthier relationship with people. (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) [W] e just were talking with the pr oviders, meaning the doctors and mid levels that work in our local hospital, and the administration and one of the things it's real difficult to find for us, a permanent hire staff up there is there for 2 years, so we have a huge turnover rate in our area so one of the things they've talked about is maybe hiring more Navigator s that can help patient s through the whole system. Maybe they're the ones that can help us get people to the proper funding. Making sure they've got Medicaid, making sure they've got to walk through the whole system. Not rely on nurses that might not be there in a couple years and not rely on the staff that we don't have currently and they can help make arrangements and they can be the liaison between th e patient and the doctor (trans cript, 4 00049, 50, personal interviews, 2012 2013) Like I said, it started with us doing the, began with the education but when we got people in to get their screenings, there were still all the questions with follow up, referrals, funding, and just workin g with the tribal. Once the tribal programs knew what our role was in the community and once they knew that we had financial assistance to help these patient s, then we sure got a lot of phone calls and a lot of referrals. We kind of spread like wildfire he re. Which is good. It's so needed and it's still needed (transcript, 4 00044, 45, 46 personal interviews, 2012 2013) And those four or five hour long meetings are the tribal meetings that sometimes happen, tribal approval for this, for that. Even if I ha ve to go to Well, this (transcript, 4 00032, personal interviews, 2012 2013) If that Native person [ Native Patient Navigators on would probably talk to th eir family members about it for sometimes way too long. Six months? We had a young woman Finally, by the time she talked about it, it had spread years through the time of Native patient n avigation that includes that education (transcript, 4 00029, personal interviews, 2012 13) All of the other Native Navigator s that we always get together and have a meeting with and we converse with e mails. (tran script, 4 00032, personal interviews, 2012 2013) This exchange between Navigator s could encompass many topics. For Native Patient Navigators these topics might include requests for and coordination of information, the solving of problems that may arise, a discussion of developments both externally and internally to the group, the coordination of activities, resource building and the negotiation of meaning: Umm hmm. And that's usually the most common difficulty that we've h eard from other folks is that Co ntract Health Service policies and processes. And there's an assumption made by Contract

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246 Health Service that people should already know about this, but the patient doesn't know and so there's that missed communication and conflict that happened when people get billed because there's the assumption that all medical care is cove red by Indian Heal th Service. T he payer of last resort. So that's one difficulty of Contract Health Services. And also in terms of who to refer to because they have their contracts cha nge every year, so the team that you saw last year might not be the person you get to see this year, so there might be issues with cont inuity of care, in that regard. (transcript, 4 00056, personal interviews, 2012 13) This mutual engagement in the form of exchange, discussion and dialogue occurs presence (Wenger, 1998). For Native Patient Navigators this mutual engagement involves learning from experience for group members and the exchange of new kn owledge, as well as mentoring. [T] hey have a lot of the things I explain they have a lot of the things they have now because somebody before them was interested in doing research. So we can kind of change things and make things better for them. And th en they usually want to know what we're going to do with the data that we collect. They want to know what we're going to do with it. So then again I have to go back into explaining it can get us more funding. It can get us more resources. We're having a hard time having this conversation right now because there are some barriers that you're facing and with the data that I collect, I can hopefully get what we don't have right now. (transcript, 4 00042, 43, personal interviews, 2012 13) This system of ed ucation and the exchange of knowledge within the group additionally draws upon Amerindian circles of learning Native ways of knowing and being and Sociocultural theory As demonstrated here, Amerindian circles of learning are a well utilized pedagogy of AI/AN. AI/AN continually participate in these circles in their communities and in their daily lives. These circles of learning reflect a conceptualization of learning that incorporates a Native Way of Knowing and Being for AI/AN people. It also represe nts a type of happens in a sociocultural context with social interactions: o u know I feel like the educational process that I'm involved with in terms of providing the [urban area] metro, is very helpful. I am very empowered and want to do it. Hopefully, I'm getting better and better each time I do it. (transcript, 4 00014 20, personal interviews, 2012 13)

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247 I feel that we go out into the community and really like educate everybody because, you know, a ask questions when they go to the doctor, so when we take, you know, our community educational thin information on to their kids, their grandkids, you know, and it helps them in that way. (transcript, 4 00021, personal interviews, 2012 13) I think that it's just having those conversations, gaining the trust with the patient s and having those conversations with them and allowing them to be open and honest with how they want their care plan and how they want their treatment to be done and then being that cultural broker or that liaison between them and the physician. You know, teaching the physician and letting the physician know what this patient wants and how they want this part of their journey to play out. And then, being a mediator, if they have to you know, compromise a little bit, getting them both at the table comfortably and getting them to trust each other so they can work together for the patient to get the best car e the patient can possibly get. (transcript, 4 000G, personal interviews, 2012 13) No, it just plays into the same role as a lot of the elders believing that it's a white man's disease. When a doctor does give them the diagnosis, prognosis and everything like that, I do talk to the patient and their family in the room about exactly and specifically the doctors saying. Whether it's drawing out pictures or giving them something to read, you know over the type of cancer, for them to be aware that it's not ju st white man's disease. That it's not just Indians either that get it, it's everybody. (transcript, 4 00035, personal interviews, 2012 2013) Additionally, for Navigator s this system of learning and exchange of new knowledge through the members of the co mmunity of practice engaging with one another in discussion and dialogue, as well as professional mentoring, resulted in Navigator s changed outlooks. Navigator s talked of experiencing new wisdom, along with gaining increased knowledge, self growth, perso nal development and empowerment, resulting in a change of their own perceptions on health and cancer screening: Definitely. I know that it's very important you know, to keep up and have those screenings. It's very important being educated on cancers and how fatal they can be. It's very important for our people to learn. (transcript, 4 00035, personal interviews, 2012 12) Prompting awareness and self reflection: citi zens through a complicated system. (transcript, 4 000G, personal interviews, 2012 13) Yeah. It needs to be detected real early. As fast as you can get it done. Yeah. Doing that class has opened my eyes to a lot of stuff. So, yeah, I jump right in there. Ca ll me and I'll get there. Oh yeah. I didn't know I had that in me. (transcript, 4 00041, personal interviews, 2012 13)

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248 As a result of these experiences for the Navigator s through the process of learning exchange of knowledge and self reflection, the Navi gators acquired new wisdom. This in turn, changed their perceptions of how to interact with the Western medical syst em, so as to help Native people get the best care Interpretation of r oles within the Native patient community of practice a nd mutual e ngagement. In the process of mutual engagement, Navigator s have developed characteristic ways of doing things, as well as joint views, mutual values, relationships and dynamics. Furthermore, Navigator s, through mutual engagement and the elemen ts of dialogue and discussion, jointly addressed what they saw were the critical roles of Navigator s. These roles encompassed those of a listener, educator, translator, as well as, border crosser. Within their shared practice, Navigator s have developed t heir own critical views on these roles and why these characteristics make good and effe ctive Navigator s. Thus, for a Navigator s the following roles are jointly held in high esteem. Joint interpretation of roles l istener. Navigator s saw the importance of the role of the listener. In many Native Nations because of the value and significance of oral tradition and the prominence of storytelling, being a listener is extremely respected, as well as moments of quiet ness (Garrett, 1999). This role of liste n er is critical to the roles of Navigator s : (transcript, 4 00032, personal interviews, 2012 13) I think a Native Naviga tor needs to be a good listener and they need to have good communication skills. Really need to be organized, and I think that Navigator say it in like one word, but able to maintain their professionalism while figuring ou t how to meet all the needs of their patient s (transcript, 4 00029, personal interviews, 2012 13) The most important thing is listening skills. In Western society we're so in awe when someone is so "articulate" and we just think their just like sliced br ead right? This person is so articulate, but in Native community, it's more important about listening. The importance [of listening] which is not valued in Western society. But, in Native society is very valued and being a Navigator it's

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249 extremely importa nt to listen and not only listen, but actually use your eyes and see the many ways people are communicating by not talking. And so you have to look at body language and you have to listen as to what is being told to you. And you have to listen to their sto ry and see what is the real need here beyond the physical. Of course you have to deal with the physical. It's incredibly important because they're dealing with cancer, so it's an immediate need that you have to address, but there's other needs that add or contribute to health and wellness (transcript, 4 00014 20, personal interviews, 2012 13) Sharpened listening skills are important for a tribal individual and those Navigator s working in Native communities. Native Patient Navigators talked frequently of t he value of AI/AN feeling comfortable for communication: I think it's just making, just each person is so unique. I treat each of my clients unique. I don't you know, they're not stereotyped, like they're all traditional, they're all going to do this. No There are some that are more aware of wanting to be more traditional. They know their medicine man. They know where to go. They know what medicines have helped their elders already and it's a proven fact that if they do this traditional way, it has helpe d them relieve some discomfort or pain. I like to listen to them. I listen very carefully how much they're involved with their people back home, because we live in an urban environment not every Native person is going to want traditional healing. Some peo ple want both. Some people just want to do this, some people just want to do that. And so I honor the way that they are being led and the way that their family is involved with their healing process. (transcript, 4 00014 20, personal interviews, 2012 13) No t necessarily. Yeah, par t of it is [ t ribal nation ]. There are people in the community who are born and raised and grew up and [are] known as local people. They're non Native but whether somebody from the village is going to trust them versus trusting me over them, they'd probably pick me over them for someone that they trust. But if it's somebody that the y knew from the times, watch ed the m grow up from the time that they were a kid, they know the area chances are they'll probably feel comfortable talking to them. But, probably not as comfortable as ta lking to me. I mean, they just, they know me. They know my parents, they know my uncles and my aunts and my grandparents and so, I mean, they're for them they have no trouble communicating with me in any lev el. (transcript, 4 00049, 50, personal interviews, 2012 13) Navigator s were aware of their own AI/AN cultural commonality and tribal (and inter tribal) etiquette concerning listening. Navigator s also understood the value of being familiar to the values and norms of local community culture surrounding listening. say goodbye in English, but if, so on the phone sometimes people, when they're done talking, they've answe red your question they'll just hang up. And that doesn't mean they're hanging up on you that means th ey were done. We don't have a[n] [Native language] word for goodbye. We don't have a lot of emotion words. We don't express a lot of emotion in our words. We do it mostly through facial and through, I'm mean shrugs, and you know we don't, we never, made up a word for love because we don't have a word for love. We have emotion words like happy, sad, angry, but we don't say I love you in [(Native lan guage]. There's no word to say that. Sorry. (transcript, 4 00049, 50, personal interviews, 2012 13) Yes. been times when I've gotten things to work just because of who I am or because of who my family is or because I used Lakota word w hen speaking to somebody. It's

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250 huge. It goes a long way down here. And like I said, I think it all goes back down to trust. (transcript, 4 00042, 43, personal interviews, 2012 13) o their ways (transcript, 4 00028 personal interviews, 2012 13) I'm going to the store but at home I'm going store. You don't say I'm going to the store that's too many words, you know. You just say I'm going store and you're jus t gone. There's no there's not this long goodbye when we say we're done, goodbye, we're gone we're done. (transcript, 4 00049, 50, personal interviews, 2012 13) Navigator s spoke of language subtleties as well as taboos: You don't talk about somebody els e's illnesses because it might come back to you. You don't talk about somebody how they died or why they died, because it might come back to you. You might bring it on to you. So that was their belief. You don't talk bad about somebody and I guess they ju st associated cancer with the word cancer as bad. As something bad. (transcript, 4 00049, 50, personal interviews, 2012 13) The challenges surrounding effective listening can have dire results with Native people, as in this instance of an almost duplicate b iopsy on a frail elder Lakota man from a rural area. The near miss was intervened by a joint team of Native Patient Navigators and involved multiple health entities: So he was diagnosed in [town S] back in March and we I just never received his result s. And so they didn't know why he was in and out of the hospital. They didn't know why he was in and out of the hospital. So [fellow Native Patient Navigator ] and I we did all the navigating trying to contact the doctor there and they said they would se nd the results, meanwhile, he had oth er appointments. He had one in [town L]. He had one in [town V]. So here is this [very elder] year old man you know, who isn't fluent in English. He is a Lakota and just didn't, he had a significant other who was ki nd of in and out of the picture. He had a cell phone, but no caller ID. No voicemail. And even if he had those items on his phone, he wouldn't be able to access them, because he don't know how. That was a challenge to communicate with him, let alone th e doctors and other facility. And so we started doing our navigation and I found out he was scheduled t o go to [town V] for another appointment. I was just refe rring him to [town V] and that was for another biopsy on his prostate which he didn't need bec ause he already had one in [town S], but nobody seemed to have caught that except us. And at his age and his health (transcript, 4 00044, 45, 46, personal interviews, 2012 13) The value of the Native Patient Navigators as being a good listener was also exp ressed in the realm of offering emotional support for clients through shared experiences and a connection to others. However, this emotional support was always qualified with the Navigator

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251 of their i dentity, personal history, tribal history and where they are in their cancer journeys, as well. Well, my role is not to put judgments or bias on the patient s and to provide a service. To provide empathy and compassion for the individual. Keep my opinions to myself and listen to the patient 'Cause everybody's needs and journey is different. (transcript, 4 00053, personal interviews, 2012 13) I would say the trust. Being open minded and what I said, just kind of having an understanding that you really need to take people as they are in life right at the moment and not be judgmental. Yeah that's about all that I would add. (transcript, 4 00047, personal interviews, 2012 13) About this I really care for my community. I feel passionate about my job and reasona ble for what I'm doing. I think confidentiality is one of the issues that I didn't mention earlier, but extremely where they are at the stage of cancer. Even if they're non cancerous to celebrate that life that is well. I feel like I'm dealing with the long stage of life you know, from being non cancerous and teaching people about early detection and then dealing with prevention, then dealing with intervention Dealing with palliative care, and then also dealing when people cross over. It's dealing with life and celebrating life and helping people to celebrate their life the best that I know ho w at whatever stage they are at (transcript, 4 00014 20, personal int erviews, 2012 13) Meeting people where they are, in this regard, also encompasses for AI/AN, where they are in ascribing to Native traditional values and beliefs. I think it is holistic in approach but I also have to really meet the person where they are. And some of the folks I've dealt with have different faiths. They may not follow the traditional Native faiths. They may be more oriented toward the Christian faith and/or to the Catholic faith and we have to meet the Christian where they are. We have to see if they want prayer done for them. Having their chaplain that's located, come and pray for them done. Or hooking up the telephone to folks back home who may be doing a prayer for them and have them listen in to the prayer. (transcript, 4 00048, pe rsonal Interviews, 2012 13) Navigator s meet people where they are on this continuum of cultural commitment and keep this perspective in mind. In addition to this, a Navigator s must also take into account whether a person comes from a reservation, rural or urban setting, as well as what local tribal customs, beliefs and structure s are followed. I understand all the little cultural innuendos and the little cultural what do you call it?? Speaking to somebody also speaking to people that I do notice that I speak to when I speak to a Native person I speak different than when I speak to a non Native person (transcript, 4 00049, 50, personal interviews, 2012 13)

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252 Additionally, with regard to the tenants of tribal critical race theory and the historical, social and political history of Native people in the US, racism continues to have its effects on AI/AN people: And sometimes what's that called when things happen to you but it's really not you? When it happens to your people cultural you know, it happened t o us a long time ago. It's gonna happen to us again. Like that's our destiny. You know what I mean? Like the white man's always gonna screw us over. It's just a thing. And so we're very leery about white men things. Even cancer. We're very leery of it. Is it a white man's disease? And it's not. It's not a white man's disease. But Indians think of those things because a lot of the exposure is white people. There's not a whole lot out there exposing Indians, you know, that are saying, this if you do this and this, you know, it'll keep you from getting cancer. There isn't a whole lot out there (transcript, 4 00034, personal interviews, 2012 13) These excerpts give Navigator s the opportunity really to listen to Native people and in turn, use this i nformation to become knowledgeable educators. Then the next important aspect is joint interpretation of roles. Joint interpretation of roles e ducator. Another critical role for Navigator s is the role of educator. In regar ds to dealing with a client who may have a diagnosis of cancer or a community facing an increasing cancer burden, the importance of educator cannot be overemphasized: Just being there for our Native people. Making sure they're aware of their diagnosis. Making sure that they're educat ed, that they totally understand what's going on, that they're not left in the dark or left with unanswered questions. (transcript, 4 00035, personal interviews, 2012 13) You know, they might not understand that cancer is a disease. They might think of it as something that the person did wrong, and addressing that and telling them that cancer is a disease that's caused by a change in cells of the body. And many times we don't know why that happens. And helping educate the family members at that. I think a lot of the non Native Navigator s really don't understand that process. (transcript, 4 00048, personal interviews, 2012 2013) we're not taking anything from them. We're trying to like I said, eliminate barriers and try to make things better for them and for the people after them. (transcript, 4 00042, 43, personal interviews, 2012 13) ven know how to pronounce the word mammogram. Or didn't know what cervix w as even though they've had a Pap smear. They know they've had one they just didn't know why. Or that it was a screening to predict cervical cancer (transcript, 4 00044, 45, 46, perso nal interviews, 2012 13)

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253 Yes. I know that cancer screening is very important. That's one thing that I teach a lot of to make sure that those, whether it's mammograms, prostate screenings, anything like that. Making sure that women do their PAP smears yo u know, on, ev ery year as they're supposed to (transcript, 4 00035, personal interviews, 2012 13) teaching them about cancer. Having them screened you know. Teach ing them about treatments. (transcript, 4 00048, personal interviews, 2012 12) Navigator s spoke of several spheres with the role of educator. One of the spheres o f educator is to educate others, such as with a client, a family and a community using their Western medical knowledge. Another sphere related to community, is tribal outreach and the education associated with cancer awareness and prevention. This education functions to empower others and it serves to help individuals and families access knowle dge. Finally, there is the sphere of educating Western society and government medical entities in gene ral, about the value of Native patient n avigation along with the Native Knowing and Being that Navigator s as individuals bring forth. So, we as Navig ator s need to educate our people out there that, you know, we do grow up, a lot of them grow up and really rely on their traditional medicine know, they can use the Western medicine and the traditional medicine. And I personally believe that the two will work together. (transcript, 4 00026, personal interviews, 2012 13) Yes. Yes. A lot of people still believe that when you hear cancer that it's a death sentence. And that was one of the things that I really, that is one of the things that I definitely point out to people, especially my breast cancer patient s, is that you know, this doesn't mean you're gonna die. And sometimes just having to hear t hat is all they need. It's like ok. I'm like, you're gonna be ok. You're a strong woman, you can do this. You'll make it through your treatments and everything will be fine. (transcript, 4 00039 personal interviews, 2012 13) Explaining to what is entailed i n radiation, chemo, or both. About that piece and then again, at the patient s end, sharing with her onco logist what type of ceremony or he or she may be engaging in. g to take some type of vitamin, or using some type of oils or if they're going to use yoga or some type of meditation or, or massage, again, acupuncture. A ll that stuff is, b ut, again informing the doctors of what you're participating in. Due to what's goi ng on with their body, it may not be ad visable to do that at this time (transcript, 4 00053, personal interviews, 2012 13) The challenges I think, like helping individuals, but also making sure that they self advocate for themselves through a challenge. Be cause as a Navigator your role is to help them out but also to teach them how to help themselves, because even though it's a long term relationship depending on how many people you're helping that [you] may not be there all the time with them. (transcript, 4 00056, personal interviews, 2012 13)

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254 patient wants and how they want this part of their journey to play out. And then, being a mediator, if they have to you know, compromise a li ttle bit, getting them both at the table comfortably and getting them to trust each other so they can work together for the patient to get the best care the patient can possibly get. (transcript, 4 00042, 43, personal interviews, 2012 2013) Well, I've seen that our patient s are diagnosed at a much younger age in most cases, than a lot of non Native s. I was really concerned when they started changing the guidelines especially for the American [Cancer] Task Force changing the guidelines for mammograms to 50. I was really concerned because a lot of our women the women in my community are under 50 getting diagnosed. So and that brought a lot of confusion into the community as to some of our providers are using the task force guidelines, some wer e using American Cancer, and the patient s were very confused. When I do my outreach I always do it Native specific saying, hey, we have a higher rate of developing cancer younger, so you know, make sure you get your screening. I recommend still getting you r annual screening starting at 40, unless you have a family history and then earlier. So, as far as cancer screenings go I think that the education brought to our communities need to be Native specific and that data needs to be known to our communities as, like we do have a higher rate of this and this type of cancer and this (transcript, 4 00039, personal interviews, 2012 13) Yet, still there is another sphere of education, that of educating others because of the lack of cultural understanding of AI/AN popu lations and the misunderstandings that so frequently happen because of this dynamic. This sphere is also best viewed through a critical lens Tribal critical race theory (Brayboy, 2005) argues that racism and colonization are endemic in Western society a nd specifically in institutions that serve Native American health needs. This inherent racism and colonization is so entrenched in society and Western social structures specifically, that it has affected cultural understandings of AI/AN populations and su pported the intolerance for cultural views that differ from the dominant discour se. In this sense, the Native Patient Navigators in this role serves to educate and reverse this false consciousness and rebuke misinterpretations due to the lack of AI/AN cul t ural understanding, as well as to address certain responses by Native people: Working with non Native people, they are not very understanding with Indian pe ople as far as, you know, "You knew that was wrong", "You knew that was bad". It's like they scold Native weight or they scold them because i f you hadn't been drinking you, this wouldn't have happened to you. You know what I mean? It's just like they're not understanding why those things happen to them. It's not a thing that we choose. Native people don't choose to have cancer. They don't choose to be obese. They don't choose these

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255 things just happen. I think as non Native people they look at us as you know, different because they're not understanding the har dships that Native people have gone through (transcript, 4 00034, personal interviews, 2012 13) There is, especi ally in what I said before, the [Native community], there is a high illiteracy rate in some of the rur al areas of our state or in the [region] le [Native community]. As a understand maybe or are not comprehending the fact that things could be better. And rather than expose themselves to the meanness and the cruelty on the outside world because of their poverty or because of their lack of educatio n or because of their distrust, ated themselves in corners. (transcript, 4 00034, personal interviews, 2012 13) generational and think it will. Even me. You know, I (transcript, 4 00028, personal interviews, 2012 13) There's just so many issues that can't be there's so many issues that can't [be] broken down just by somebody calling and saying can you come in for this appointment. There's a universe of isolations and you know, with all these people dying it's a lot of these people that come in are not coming in because the normal schedulers we go above and beyond expectatio ns all expectations whether that means getting through their actual procedure or even just having them come in for that office visit, you'll find out that it's nearly impossible to bring certain people in because what's going on in their lives. You got ta figure out what's going on in their lives to figure out how to bring that wall down (transcript, 4 00052, personal interviews, 2012 2013) Joint interpretation of roles t ranslator. Another important role that Navigator s have emphasized is that of transla tor. Navigator s can translate for others who find themselves in need of someone who can interpret complicated and, at times, confusing medical jargon: A lot of our Native people are real quiet, real shy. Do not ask a lot of questions or anything like th at. But you know, they'll call me, or once the doctor leaves even when I'm in the room with them still, they'll say, "What does this mean"?, blah, blah, blah. And I just educate them and make sure they know everything about what was being told (transcr ipt, 4 00035, personal interviews, 2012 13) this is what the doctor means. (transcript, 4 00032, personal interviews, 2012 1 3) understand or medi cal language (transcript, 4 00021, personal interviews, 2012 2013)

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256 So, like when we talk about using slang language, when you communicate with people in the Native may use terminology that is not very understandable (transcript, 4 00021, personal interviews, 2012 13) always miscommunications about things. She misunderstood the way something was explained to her or something wasn't explained to her at all so she didn't know an answer. You know if I said Mom, you went to your medicine clinic appointment today, how did that go? And she'd go, oh, I don't know. They just did this and that. And I'd say well what did the doctor say. Well he said talk to us in ways that we understand and that because doctors don't think about the fact that we might not unders tand all the words that they say or the terminology that they're using. They just say it because you know, they sound so smart in saying it. They're not realizing that the person that they're talking to might not even be able to read. (transcript, 4 00047, personal interviews, 2012 13) Navigator s if they see me walking somewhere, they said something come to me and talk to me as a Native Navigator e (transcript, 4 00032, personal interviews, 2012 13) These comments may also reflect a difference in communication style that a Native Patient Navigators may be more in tune with than others. Navigator s are in tune with these local tribal communication subtleties and their misinterpretations while others may not be Being in touch with lo cal tribal communication styles norms develops trust, because this knowledge among Native people is an intrinsic part of a roles as translator (communication is explored further in this chapter): them grow up from the time that they were a kid, they know the area, chances are they'll probably feel comfortable talking to them. But probably my parents, they know my uncles and my aunts and my grandparents and so, I mean, they're for them they have no trouble communicating with me in any level. (transcript, 4 00049, 50, personal interviews, 2012 13) The role of tra nslator for Navigator s may also be that of language transla tor as well as medical translator. There are more than 565 federally recognized tribes and over 200 state recognized tribes, as we ll as many unrecognized tribal Nations many with their own languages and even different dialects that co exist within these languages (BIA,

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257 2014; N ation al, Co nference of State Legislatures, NCSL 2014, Native Languages of the Americas, 2014). Thus, for Native Patient Navigators the role of medical translator and language translator frequently overlap. Moreover, Native Patien t Navigators as transla tors can help AI/AN clients who use Native communicating with non Natives (Har jo, Burhansstipanov, & Lindstrom, 2014, p. 415). As well, many Native individuals tend not to use disease words. For example, although, a landmark glossary in Navajo has been published with a newer, more modern translation on cancer terms in Navajo and us es definitions such as, body cells, damaged and dangerous ( Austin Garrison, Glossary for Basic Cancer Ter minology in the Navajo language, 2010, p. 4), many Nations tend to associate negatively with disease word translations: hat was something you if somebody said the word cancer, everybody, t [tribal nation ] have for cancer, which I ey describe because in [tribal nation ] language it is more descriptive. (transcript, 4 00032, personal interviews, 2012 13) You know, they might not under stand that cancer is a disease. They might think of it as something that the person did wrong, and addressing that and telling them that cancer is a disease that's caused by a change in cells of the body. (transcript, 4 00048 personal interviews, 2012 13) S o, one time we met with our elder council meeting, our Native patient Navigation Program, our team, we met with the elder council meeting and one of the elders said there is one word. And a rybody and they all looked at is very descriptive so what he said in [tribal nation ] he said it desc ribed the white, the silent killer. He was trying to explain what it meant, but he said basically it just m eans the silent killer. And he said nobody talked about it. Nobody said it. (transcript, 4 00032, personal interviews, 2012 13)

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258 Thus, cancer translated can be very complex and instill negative feelings. In this regard, the role of translator for the Nat ive Patient Navigators is very important because Native Patient Navigators bridge the gap between the translation, the fear and mistrust, and the patient Linstrom, 2014, p. 415). Navig ator s commented that cancer used to be one of those things that people just did not really talk about. However, now, according to the Navigator s cancer and preventative screening needs to be talked about and cancer topics need to be made fully apparent t o Native people. Furthermore, according to critical theory the need for the role as translator may have its necessity from issues rooted in areas of institutional racism that exists in US society (Brayboy, 2005). Native people may also not be compelled to interact with medical staff for fear of the unknown, an individual not having the right words, and the present comfort zone or (lack of) found within the power dynamics of the medical staff relationship: [Regarding the need for Native Patie nt Navigators Native Patient Navigators these people are left out. There's a hand full of people that will be left out and that will that can die from a disease that can be prevented. And so I think it's absolutely necessary to h ave Native Patient Navigators because without, there's these people that will never come in (transcript, 4 00052, personal interviews, 2012 13) Moreover, for Navigator s as trans lators, identity was critical. M ore typic ally than not, a Native person, Navi gator s or a client will identify with the person they are communicating with, in relationship to tribal nation identity, gender, and age (in relationship to themselves an similarly aged family members), and status in community, a n attempt to establish rel ationship (Garrett, 1999). Joint interpretation of roles border crossing as a g roup In addition, the role of border crosser was deemed important by Native Patient Navigators Border crossing in

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259 this context refers to crossing the cultural borders of Nat ive and n on Native worldviews as a group dynamic. The role of border crossing for Navigator s as a group encompasses Navigator group relationships with providers, agencies, institu tions, and the community. As well, t he Navigator s role of border crosser as a group includes understanding and negotiating inter institutional policy an d challenges with tribal policy and procedures, medical institutional barriers and issues. Border crossing and its significance in these findings is expanded on later in this ch apter. Yes. Because a lot of people are sent off when they first get the facility, they get whoever because of something they see that's flagged, it gets sent you and so forth. So, from then on, many times, the primary provider doesn't know what happened after that. There is no follow up at that time. So when they go see their oncologist, well, we need the previous work from th e other doctor. There is that disconnect. There is no electronic record that can get passed between Indian Health Service and [the] other facility. The only way that medical records and so forth get released, is the patient says they be released and the y can talk to the medical records folks to have tho se released to them, but then, Indian Hea lth Service mail it, faxed over (transcript, 4 00048, personal interviews, 2012 13) generations. (transcript, 4 00028, personal inte rviews, 2012 13) I think for me it's been really tough to see how much harder it is for them. When you're on the outside you and you get a diagnosis of cancer there's obvious ways of going about it. That doesn't mean it's easy, you know. I don't think any thing in the cancer, t he whole cancer treatment thing, there's nothing easy about any of that. It's just when you're a non Native it's much easier for you to get that treatment. Whereas when you're Native it's harder because like I said, you've got distanc e and time as a critical factor for that, and resources, finances. So it's made me a lot more aware of how fragile all that stuff is and how much easier it is for someone to get lost in the cracks because they can't get any of those further services. (tran script, 4 00038, personal interviews, 2012 13) Through the joint i nterpretation of roles, Native Patient Navigators valued the roles of listener, educator and border crosser. Using these roles the Navigator s relied on the next element of their community of practice that of a shared repertoire and communal resources, our next topic of discussion. Shared r epertoire communal resources. The third element of the Native Patient Navigators community of practice suggests that the group members develop a shared

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260 r epertoire of resources (See code B 3 in Appendix G). These resources may include artifacts, narratives, experiences and discourses. This shared repertoire is continually produced as part of the dynamic of a community of practice and is a set of communal resources shared by the community: [F] inding out when the clinics were offering these screenings and if they [clients] were even then we would refer them to a state program. Somewhere where they could .where the services where being offered at no cost or low cost. So there were all these variables that we had to consider. There were even things like women didn't even know how to pronounce the word mammogram. Or didn't know what cervix was even though th ey've had a Pap smear. They know they've ha d one they just didn't know why (transcript, 4 00044, 45 46, personal interviews, 2012 13) I mean, I've gone to big cities, I've gone to all these places to learn ho w to be a Navigator But where you, where they have these trainings, I mean, they have all these resources at the tip of their fingers and sitting there through the training thinking ok, well how am I going to take this back to the reservation and how am I going to incorporate this. We don't have anything near as close to the resources that th ese people in these cities have. (transcript, 4 00042, 43, personal interviews 2012 13) [B] (transcript, 4 00032, personal interviews, 2012 13) Finding resources when you're down, when you've tried everything. It's really frustrating when you can't really find anything else to help somebody. So that was really like digging in and trying to find resources. There's been as far as for instance not getting genetic testing. Th at's expensive. It's not covered by IHS in our areas and so that was finding clinics that would provide that (transcript, 4 00039, personal interviews, 2012 13) ts resources to help make, help the patient make decisions about treatment or courses of treatment. (transcript, 4 00029, personal interviews, 2012 13) [M] aybe I know a resource person. I know some of them I've become personal with, so I've always tried to establish those contacts. Sometimes even without a patient question I would just call them. So, I can establish a healthier relationship with people. (transcript, 4 00044 45, 46, personal interviews, 2012 13) You have to bring in so many different ent ities. We have to work with the CHR (Community Health Representative), the Contract Health, because you know, they're the ones who decide if they'll get that ride or not. Once that's approved you have to call the patient back and let them know and see if they can get to the hospital to get their ride. If they can't you have to go to the tribal program whether it b eing CHR's or any other program who is just willing to go out and get that patient you have to find that for them and call the patient back an d let them know that they're coming to get them at this time to take them to this other ride that will take them to this other (transcript, 4 00042, 43, pers onal interviews, 2012 13).

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261 It is these resources that are used by the community of practice to pursue their joint enterprise and in turn, these communal resources can have meanings both symbolically and literally (Wenger, 1998). As a consequence, a co mmunity of practice might include accepted vocabulary and group routines, as well as documents and symbols the functioning as a community of practice involves a significant amount of sharing among its members and these resources are continually jointly acquired (Wenger, 1998). The shared repertoire of Native Patient Navigators includes resource gathering expe rience, resource exchange and Navigator experiences. Here, a Navigator s re lates his/her shared repertoire of Navigator s experience in context with his/her Native Patient Navigators community of practice : [A] Navigator is someone who can who is first of a ll aware, is aware that someone needs you to navigate their care. And navigate what resources they might need. So you first have to know all the various resources that are available for someone who has cancer. You have to know the various types of cancer. And cancer can affect any part of the body, so there's many types of cancer. Right now it's the second leading cause of death for American Indians and Alaska Natives. (transcript, 4 00014 20, personal interviews, 2012 13) cer or breast screening. The first step is we tell them which clinics to go to and to make their appointment and then, if say if something shows up abnormal on y need to do the diagnostic follow ups, and then if our facilities, most of our facilities offer that now, but if they were at another facility that did not offer that, then we would tell them where they could go and get their screening done. (transcript, 4 00026 personal interviews, 2012 13) In the second quote, the Navigator actually explains some steps and the shared repertoire that are inclusive of his/ her practice. These steps include a beginning, middle and end. Outcomes an d expectations are part of the Navigator e to be included and discussed o n an on going basis between the group, as well as an individual Navigator s and their client.

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262 By combining the three elements that define a community of practice that of joint enterprise, mutual en gagement and shared repertoire, it becomes apparent that tasks and activities do not occur in isolation in a Native Patient community of practice but both in relationships within the community itself and in relationships with others in the out side greater community (Wenger, 1998). Furthermore, in Native patient n avigation, regardless if a person is engaging in the community of practice or is out in the larger social world there are which are the next topic. Being present. Many Native cultures have witnesses who observe what is being presented, taught, shared, and such, in their communities. A witness can be an individual or a group that serves oral tradition, in the sense that they would to be able to speak to what has tak en place. According to Native Patient Navigators perceptions, with regards to relationships, both within and outside the community of practice the Native community is a witness. Being presen t therefore, is important to a Navigator Being present in th e Native community implies not only being seen physically, but also being accounted for in the community, such as being seen at important events, having a general presence in th e Native community, as well as possessing the traits of transparency I think the most important thing that being a Navigator is a Native [ P atient ] Navigator is to be able to be out there in the community. Be seen. Intr oduce yourself. Don't give anybody a Navigator [job] who can't speak or talk or you know, be very vocal. I'm a different kind of an Indian. I'm not your usual Indian. So the person that is a Native Navigator has to be very open to talk to people and wh ether that be one on one, or a group full of women or men (transcript, 4 00034, personal interviews, 2012 13) I think as a community Navigator just being available. Like at all times. Being visible in a community (transcript, 4 00044, 45, 46, personal in terviews, 2012 13)

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263 Trust is not built over six months. Trust is not build over a year. You know, we can get, yeah a year, okay, but trust is really built over establishing yourself in the community and really people know you as being a Navigator (transc ript, 4 00025, personal interviews, 2012 13) I'm a very visual person. I'm in the community all the time. So, I think it's because, you know, because of that trust that they see me. I'm still here and I'm not going nowhere (transcript, 4 00034, personal in terviews, 2012 13) This accountability is an important part of the additional identity of Native Patient Navigators both as a group in a community of practice as well as an individual practitioner. Moreover, this account ability overlaps with a Native P atient Navigator individual identity as a community servant. Navigator s talked about the responsibility of their jobs and their personal accountability to their neighbors. I'm still here. Just because my job ended, I'm still here in [tribal reservation ] and I'm still available for whatever help I can contribute to the program or the people. Or maybe I know a resource person. I know some of them I've become personal with, so I've always tried to esta blish those contacts. Sometimes even without a patient question I would just call them. So, I can establish a healthier relationship with people. (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) This accountability was observed both in the processes and the outcomes of their work in AI/AN commun ities. en I step out, as I say in the got, and as a result, culturally and clinically and whatever way you want to add to it, it cannot be center. (transcript, 4 00028, personal interviews, 2012 13) I started about four years ago as just almost like volunteering. I would do 40 hours a month. And even though it was more than 40 hours, you know what I mean. 'Cause it's really hard to say, you k now, I'm gonna stop working right now I did my four hours today. That's all I'm gonna do. You might go home or you might go to a pow wow, you know, and there'd be somebody there and they'd ask you a question. So it didn't matter if I was working or not, pe o ple still stopped me at pow wow s, different things, you know, t hat I might have gone to in the [Native] community. (transcript, 4 00034, personal interviews, 2012 13) I mean, they just they know me. They know my parents, they know my uncles and my aunts a nd my grand parents and so, I mean, they're for them they have no trouble communicating with me in any level. (transcript, 4 00049, 50, personal interviews, 2012 13) At the end of the grant, my role in the community never ends (transcript, 4 000G, personal i nterviews, 2012 13)

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264 As insiders, in one respect, Navigator s had more access to their AI/AN communities than those considered outsiders to the community. Conversely, Navigator s were far more accountable for their actions to their communities and Native peo ple in general, than perhaps an outsider would be. In other words, time makes apparent if a group (or in this case, a community of practice ) or individual is present, or if their work is accountable and they are transparent to the community. Part of the se ethics would also include the need to be very confidenti wo rk in Native communities. One Navigator discussed his/ her commitment to confidentiality as an important issue in an AI/AN community, in addition to the importance of sharing knowledg e and understanding with others: be able to help them to access t he knowledge and understanding of what their medical situation understanding or different diagnosis. Other times its resources to help make, help the patie nt make decisions about treatment or courses of treatment. (transcript, 4 00029, personal interviews, 2012 13) Navigator s were keenly aware of the trust that was put in them and the responsible actions that the community expec ted. With this apparent fact, Navigator s were willing to be held accountable, be present and hold their work tr ansparent to all involved. By Navigator s being clearly visible to their communities in all that they did, they earned the trust that they received: I like for me personall y, you know, just people having that trust in me. Not only do they trust me, they hold me accountable. And so I have to prove to them that I can be accountable. And I think just having me here in the community shows them that I'm willing to be accountab le to them and I'm willing to be visible to them. (transcript, 4 00044, 45, 46 personal interviews, 2012 13) Like I said, pride is huge on a reservation. So is trust. I mean, so you have to come into it you know, knowing those things (transcript, 4 00042, 43, personal interviews, 2012 13) Accountability and trust were intertwined for Navigator s for this role and even the next role :

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265 What if I get another job and it involves those same women, but not cancer? I'll still need to build up that trust with them If I had it before, it's easy to get back. I think my next job would probably be in the Indian community. So, I try and keep that trust with them (transcript, 4 00034, personal interviews, 2012 13) Knowing and respecting their communities as well as their trusted roles within these communities was paramount to the work that Navigator s did with Native people. Furt hermore, for Navigator s being present in the community was a factor in knowing who the important and critical persons in the community were and respecting those positions. These peopl e and trust were important for Navigator s relationships and their being able to do their work in a culturally acceptable way in AI/AN communities: I know who my traditional medicine makers are. I know who our leaders are. I know the ways of the old people, some of the ways that are culturally necessary for us as tribal people. The courtesies and the expectations and the respect and just the knowledge of knowing who these mannerisms and those ways to approach and those ways to gift and those ways to just be a part, d someone. (transcript, 4 00028 personal interviews, 2012 13) I would just go back to the trust. Trust and communication are, you know, if you have those 2 you should be ok. Those are the biggest things that I use and that, you know, make my work possible (transcript, 4 00042, 43, personal interviews, 2012 13) You need trust to be a Navigator or you know, no one's gonna believe anything you say or what you want them to do. What they need to do. Get a mammogram. Get a PAP. Get a colonoscopy. You know. Pros tate checks. Things like that. (transcript, 4 00034, personal interviews, 2012 13) Thus, Navigator s while engaging in their work assume they are held individually answerable for their behavior and their actions in their communities. Navigator s also rema rked on how much respo nsibility the job was, being a Navigator alluding to the individual and collective responsibility of their practice. know who I am. They know who my fam ily is. They know where we are (transcript, 4 00042, 43, personal interviews, 2012 13) t of responsibility behind this (transcript, 4 00028, personal interviews, 2012 13) Navigator s were careful with their behavior wherev er they went, knowing the witnessing of their actions in the community. They were, likewise, careful in what they

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266 said to others and the confidential manner in which they communicated, as well as what information was relayed. Navigator s frequently self r eflected on what they said and discussed their interactions with other Navigator s within their community of practice They researched and sought out other resources to make sure that their information was accurate. [I] say that I am a Native Navigator (transcript, 4 000 32, personal interviews, 2012 13) T his self reflection for Native Patient Navigators contributed to their lived experiences. There were also other nuances in Navigator practice both individually and as a group. For Navigator s the perception of their role extended into the community, neither ending at their offices or at the end of the day: My job doesn't end when I leave the office. When I go to the post office and I go to the store, when I go to the casino, anywhere I go, there's always somebody who approaches me and wants to know about a screening (transcript, 4 00044, 45, 46, personal interviews, 2012 13) You might go home or you might go to a pow wow, you know, and there'd be somebody there and they'd ask you a question. So it didn't matter if I was working or not, peo ple still stopped me at pow wow s, different things, you know, th at I might have gone to in the [Native] community (transcript, 4 00034, personal interviews, 2012 13) Native Patient Navigators were seen Navigator s despite the fact individual Navigator s moved on to other jobs a nd grants and salaries ended. N avigator s assumed permanent positions in their communities despite their own changing circumstances: I mean there's there's a phone number. You know and there's a name on there they can call but they don't they didn't work with them. I worked with them directly, you know. So they think of me as still knowing what they need when in actuality I'm not getting paid for it, but I'm still working in the community (transcript, 4 00034, personal interviews, 2012 13) This perma nency of roles was accepted b y Navigator s with grace and dignity as part of their community servant identity and service to Native people. This relationship tended to be reciprocal. Native communities reciprocated with a respectful honoring of

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267 Navigator s and a positive acknowledgeme nt of their practice and their contributions to the community. Right now I'm not working for [agency], but I still am in the community and people still see me and they still ask me cancer questions or, I met one girl in a class I was in and she said, "H ey! You're my Navigator !" (transcript, 4 00034, personal interviews, 2012 13) Being present for their Native communiti es was an important element of a work as well as their unique blend of Western and Native rules and content, which are explor ed next. Bl end of Western and N ative rules and content. Navigator s blend a hybrid of cultural approaches from their AI/AN communities and individual tribal knowledge , because these individua ls integrate both cultures. Some examples of this blend of Western and Native rules and content would be scheduling appointments that do not conflict with tribal holidays, feast days and ceremonies and honoring traditional practices, while facilitating su pport, follow up and adherence to Western cancer treatment: with m edicine men because usually the people find medicine men through their own tribal communities. We have helped people through different types of healing ceremonies more generalized or sweats or wiping of the tears type of ceremonies and just the focus alwa ys on honoring people where they are and what their needs are because everyone is so diverse. You and they want things done in a Catholic way. So, the real role I think of the Native Navigator is to be able to connect with the Native patient no matter where they are and be open to that Native patient (transcript, 4 00029, personal interviews, 2012 13) A blend of Western and Native rules and content helps address challenges presented by both w orldviews, which are at times at odds. Navigator s encounter challenges presented by both Western and Native worldviews in their day to day practice. This therefore, involves a fair amount o f negotiation on the part of the

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268 Navigator s Thus, Navigator s a ddress any gaps for their clients and their families using the Navigator blend of knowledge of Western and Native rules and content for n egotiation and understanding of both points of views: I kn ow my people whether it be a [Native tribe] or [Native tr ibe]. I know my Indian people, so I know how their language is, so if a non Native Navigator went and spoke with a elderly Indian feel like they will come to te to everything that they feel, w hether it be spiritual, medical, their concerns. So, I think being a Native Navigator versus a non (transcript, 4 00032, personal interviews, 2012 13) [M] ore closer to, their gonna see our cultural differences right away and about being a Patient Navigator is all about culture. (transcript, 4 00051, personal interviews, 2012 13) s of teas, different types of salves, different types of poultices, whether it was for burns from radiation or dealing with lymphoma, which is when you get the swelling in your arm, and so by them sharing their experiences, it kind of opens each of them up healers or doctors, so what we do is share information that has been share d with us or we connect people with sources where they can go and perhaps access more directly other information. (transcript, 4 00029, personal interviews, 2012 12) Navigator s talked about the necessity of filling that gap for clients: So they [AI/AN] were given a lot of information at that time. And then they would leave. The patient would leave. And when I was not a Navigator I had seen confusion of the person that just left, the, Native. So I'd recognized it before I became a Patient Navigator that there was a gap there. And I honestly felt I would really like to help in that area right there. And that's how I became a Navigator and so I knew being a Native Navigator it helped fill the gap when there was one. It wasn't every single time, but ther e was clearly a gap there. (transcript, 4 00051 personal interviews, 2012 13) No. I don't think at all. In fact, in our community we just were talking with the providers, meaning the doctors and mid levels that work in our local hospital, and the administ ration and one of the things it's real difficult to find for us, a permanent hire staff up there is there for 2 years, so we have a huge turnover rate in our area, so one of the things they've talked about is maybe hiring more Navigator s that can help pat ient s through the whole system. Maybe they're the ones that can help us get people to the proper funding. Making sure they've got Medicaid, making sure they've got to walk through the whole system. Not rely on nurses that might not be there in a couple yea rs and not rely on the staff that we don't have currently and they can help make arrangements and they can be the liaison between the patient and the doctor (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) Filling the gap with their blend of understanding of Western and Native rule s and content were part of the skills: Language, socio economic status and that they have to be aware of that, and I'm not sure if the non Native Navigator s are trained in that aspect. We've actually met with some American Cancer

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269 Society Navigator s. They're located in the hospital and they carry such huge caseloads. What we've heard is that they carry thousands and thousands of people as a case load and many times they only see Native patient s for a short amount of time, helping them with services at the hospi tal. So they're mostly hospital and they have a short amount of time to talk to them. They really don't have that time to develop a ra pport or many times the trust verses someone out in the community a nd is community Navigator who is already in the community. It may be depending on who th ey are. Who their family is or a lot more trust that they can open, have open discussions verses someone who can only see them for like 15 minutes and that's it. I thin k that's what it is. It's patient s what their needs are or how to help them out because they many times won't tell me what they need and with just a 15 minute visit it's very hard to do that. They might be able to take care of housing and that's it. But, when they need to go ba ck home, there's that need for C ommunity Navigator s to help them out in their community (transcript, 4 000 48, personal interviews, 2012 13) T he way I approach people. Like I said, I don't approach people with me you know, wanting to give them something or wanting to do something for them. I a lot of times, I leave it up to them and how they want to approach me. Before I even start meeting with anybody I make sure that everybody who wants to be there is there. If they want somebody there, or if they don't want somebody there we help figure that out. It's not what I can give them or what I can do for them, I try to let them, I guess, assess themse lves and let them tell me what they foresee happening. It's seems to work better that way. (transcript, 4 00042, 43, personal interviews, 2012 13) This blending of rules and content can be confli cting for individuals and yet, Navigator s fulfill an important gap for their clients and their families. I think for me that is a constant struggle, because I was raised traditionally and not a lot of non Native physicians give cred ibility to traditional medicine (transcript, 4 000G, personal interviews, 2012 13) Some times it had it was a roller coaster, ups and downs you know. You meet people some of the nicest people and they end up with cancer and a couple years they passes away. But then you also have your success stories where if it weren't for us, maybe some of these people may not have completed their treatment or wouldn't still be here. (transcript, 4 00044, 45, 46, personal interviews, 2012 2013) It was this unique blend of Western and Native rules and content that Navigator s established within their communit y of practice their respect of AI/AN concept of being present and the acceptance of the range of perspectives as well as the permanence of th eir roles which allowed Native Patient Navigators to do their work in both professional and community realms. Th e se elements were important for Navigator s as border crossers the next topic.

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270 Navigator s as Border Crossers: Travelers between Western and Native Worldviews Native Navigator s act as important border crossers between Western and Native worldviews (See App endix H). Navigator s are advocates, mediators, educators and interpreters among two distinct ways of viewing and being in the world: We see the familiarity of the barriers, the struggle. We can identify with the problem that they might be facing, and so w e're more sensitive I think. We're more acute to seeing this person as an extended person. Seeing this person as my mother. This person looks like my grandmother. This person looks like my sister. So, I feel very much an affinity to some of the people that I had the fortunate, to take care and th at I'm currently taking care of (transcript, 4 00014 20, personal interviews, 2012 13) I'm not sure exactly not sure what it is, just what I've said before. Just some of the things I've seen over the years is ther e is that disconnect and I'm not really sure what it is. I've seen is that some of the non Native Navigator s, many times would need at least some training in understanding Native communities that they serve and knowing that not each, not all Native people are the same. That the re's diversity in Native people (transcript, 4 00048, personal interviews, 2012 2013) I think that Native people think that I mean, they are in charge and they are responsible for their healing. I think it kind of conflicts a lot of ti mes when I guess, a doctor, or physician, or nurse ask you know a lot of questions. If this is something they want to do they kind of feel a bit more or less like they're being told or you know, forced to do it. I personally, and I know a lot of Native Ame ricans believe that spiritual aspect of healing can be a lot more powerful than any medication or any treatment plan that you go through. So I mean, Native Americans see combining the physical, medication, and treatment portion of it with you know, the spi ritual support and you know, them being able to be involved with what kind of care they're going to receive, I think is very import ant to Native American peop le (transcript, 4 00042, 43, personal interviews, 2012 13) I know what the look on their face means Facial expressions [are important] in our culture. We use a lot of facial expressions to know that raising an eyebrow means yes. You can have an entire conversation with a patient and they might not say one word, but they're answering every question you' ve asked them by either crinkling their nose for no, or raising their eyebrows for yes. And if they don't know the answer, they usually look to the person next to them to help them answer. So I mean, just little things that somebody wouldn't know to look f you r e talking to somebody on the phone, to know maybe that they don't hear. That they have a hearing problem and you're explaining all these things and to know that they only went to maybe the third grade in school, you know because that was all that was available at the time. I mean, it's just very I think it's very important to have local people. And people are very comfo rtable coming to somebody local (transcript, 4 00049, 50, personal interviews, 2012 13) Add itionally, as border crossers, Navigator s work for understanding across many areas Western institutions: You don't talk about somebody else's illnesses because it might come back to you. Y ou don't talk about somebody how they died or why they died, because it might come back to you. You might bring it on to you. So, that was their belief. You don't talk bad about somebody and I guess they

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271 just associated cancer with the word c ancer as bad. As something bad (transcript, 4 00049, 50, personal interviews, 2012 13) seen elde (transcript, 4 00028, personal interviews, 2012 13) (transcript, 4 00025, personal interviews, 2012 13) many of these peo ple, with so many Native people (transcript, 4 0 0028, personal interviews, 2012 13) Navigator s use their roles as border crossers for individual, as well as family and community advocacy and mediation, using both Native and holistic perspectives. These roles as border crossers therefore can, at times, add to better understandings for both sides. This multifaceted undertaking involves interfacing many different institutions and resources to help the complex journeys they navigate for clients and their families. Well, it's just that he I had just refer red him up to the doctor to get the, for the screening done. However, when he got the diagnosis, Indian Health Service refused to pay for his treatment. They said that he could go to the VA (Veterans Administration) Well the VA doesn't wouldn't have don e that because the VA did not refer him up there. So, basically they refused to pay for his treatment. So, he actually had to go through Medicare. And what Medicare didn't pay for, he ended up having to pay out of pocket. (transcript, 4 00038, personal interviews, 2012 13) Unfortunately for all of us, being tagged sometimes with a title opens a lot of doors that you otherwise would not be opened, not only on a personal level with our little patient working with or our friends who need help, b ut in doors that need to be opened in your community understand a little bit of how to approach these people, or the hospitals. When you go into an emergency ro om and here comes mom and grandma and your kids, which is in our culture. We t have that reassurance and that acknowledgement that I had been screened by people who know and have taught me how to do this, people who have gone that gamut to make sure that I understand the Navigator and can do it gives me a lot of open doors. ( transcript, 4 00028, personal interviews, 2012 13) However, assuming the role of border crossers can alternatively cause conflict for Navigator s themselves: I mean it's really hard working with IHS and working on a reservation like I said, the resources ar e small to none, so sometimes they don't have a lot of choices. I mean it could be just this one choice, like this is the only thing we can do. (transcript, 4 00042, 43 personal interviews, 2012 13)

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272 Sometimes we had to I had disagreements with IHS. I've been intrusive and annoying by the clinical director. I've had I've had my battles. And each time somebody got a denial letter from IHS, I was just encourage them to just keep writing, you know, write back. Go back to the clinic. Don't give up. I've e ven encouraged some people to take it to the health board. Because health board meets with all health programs and IHS. And I've gotten scolded over that too. Not by my supervisors, or my work place, 'cause they've always supported everything that we do 100%, but from his, from people in those positions. So you really have to be a fighter, if you will. And be a very strong advocate (transcript, 4 00044, 45, 46 personal interviews, 2012 13) een at it a long t ime, and you cannot stand there, an A.R.N.P., if to the point and I will questio f (transcript, 4 00028, personal interviews, 2012 13) for you because really important (transcript, 4 00025, personal interv iews, 2012 13) Border cros sing involves many areas. For Navigator s as border crosser s, one of these areas is also trust. Navigator s reflecte d on trust with regards to non N ati ves, Western medicine and health institutions. It was in these areas that the needed role of Navigator s as border cros sers became most evident. One Navigator reflected on the deep and complex issues of trust with regards to Native people: self to be just a little bit non trusting of people who are non Native, you know, but then, you know, if I put myself out there in the community, I can relate, you know, to them. I can relate to them on a em towards like their attitude. (transcript, 4 00021, personal interviews, 2012 13) Native Patient Navigators take what has been taught to them in Western medicine and apply it in a Native way, explaining that healing is a gift across time and generations by using storytelling, Native ways of knowing and being traditional local tribal norms, and the space for both Native and Western medicines. [A] way of handlin we do is share information that has been shared with us or we connect people with sources where

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273 they can go and perhaps access more directly other information. (transcript, 4 00029, personal interviews, 2012 13) Hmmm. I think just letting them know because of the trust, about going, using the Western medicine. Letting them know that there's side effects to all medicines that we take. (transcript, 4 00038 personal interviews, 2012 13) The t rust that the Navigator s have earned with AI/AN and the knowledge of Wes tern medicine allow the Native Patient Navigators to help peopl e cross borders based on issues such as fear, mistrust and lack of resources. Likewise this lack of trust can have an historical basis with regard to past trauma with AI/AN, according to Harjo, Burhansstipanov, & Lindstrom (2014), because Native Patient Navigators reduce feelings of fear through education and navigation (p. 414). In their local areas, Native Patient Navigators (NPN) have personal knowledge of the history and the resulting trauma, along with local culture, customs, and access to health ca re system (Harjo, Burhansstipanov, & Lindstrom, 2014). Therefore, the trust of AI/AN clients and the knowledge of these elements and Western medicine, allow Native Patient Navigators as border crossers to help clients: Trust is something you cannot lear n in school. Trust is something that is kind of there because you're Native, period. And there's so much distrust because of the broken treaties, because of the historical trauma, because of people not knowing Native communities, people not being sensitive to the history and people not non Natives not really being really compassionate or sincerely wanting to serve. Therefore, there is another barrier a non Native has to deal with and that is trust. And that's what I wanted to add. (transcript, 4 00014 20, p ersonal interviews, 2012 13) Additionally with regards to border crossing, some public servants such as Native Patient Navigators Navigator s may teach the untrusting client via storytelling of actual medical experienc es, thus benefitting the patient with for Navigator s was found in both cultures and was very effective in expelling fear and

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274 promoting trust for Native clients, at least for some part icular situations (transcript, 4 000G). Well, on e way of bridging the gap is to, around and people share their stories. (transcript, 4 00029, personal interviews, 2012 13) Well as for myself, I was alwa ys so when we talk about screening, colonoscopy, mammograms, I share with them. It's not that bad (transcript, 4 00053, personal interviews, 2012 13) Sharing via storytelling and the education that results in this instance, touches on Amerindian circles of learning and elements of sociocultural theory As well, Navigator s in this instance and others rely on Native ways of knowing and being for guidance as we will see in our next topic. Native ways of knowing and b eing Gregory Cajete (1994 ), speaks of N ative ways of knowing and being as encapsulated by Highwater : The Indian individual is spiritually interdependent upon the language, folk history, ritualism, and geographical sacredness of his or her whole people. Relationships bet ween members of families, bands clans, and other tribal groups are defined and intensified through relational and generational language rather than through personal names, which are considered to be sacred and private to the individual. The relatedness o f the individual extends beyond the family band or clan to include all things of the world. Thus, nothing exists in isolation. Individualism does not presuppose autonomy, alienation or isolation. And freedom is not the right to express yourself but the far more fundamental right to be yourself. ( Highwater cited in Cajete, 1994, p.164) The ways of knowing and being quoted by Cajete above differ dramatically from the Western, scientific and compartmentalized worldview associated with Western medicine ( Ca jete, 1994 ) (See Appendix H). Within this paradigm, from a Native traditional perspective, not only is any i m balance addressed within the individual, but 1985). Nav igator s often referred to these ways of knowing and being: [A] nd when we looked at all the different tribes, one of the things that we found that was a common philosophical perspective in tribes was the concept that we are all related. And whether it was from a plains t or other communities in their concepts about the California that danced to keep the earth balanced. You know, our peop le were raised believing

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275 that they looked at their societies the same way and took care of all those people within their societies. (transcript, 4 00029, personal i nterviews, 2012 13) Most important about being a Native [ P atient ] Navigator s is honestly, I think the whole traditional side of it. The beliefs, cultural beliefs and everything. Being culturally sensitive, making sure to, that the hospital is culturally sensitive to their values as well as beliefs. Continuation of care for a patient To me that's just kind of what it falls into. (transcript, 4 00035, personal interviews, 2012 13) That's why wh en people that are not Native, they say they go to diversity trainings, that's a joke to us. How could someone even fathom knowing as much about Native culture, tradition, religion, history. Learn everything in one week training of diversity training. That's a joke and that's an affront to me as a Native [ P atient ] N avigator Right. Because they don't value our traditions, our ceremonies. They don't understand them. They don't honor them. They don't respect them. They probably don't have a clue that they exist. And they're just focused on getting someone radiation a nd chemo. They're just focused on just the physical healing of a person. They neglect the spiritual aspect. They neglect the emotional aspect. They neglect the psyc h ological aspect. They neglect the extended family involvement. They neglect the tribe that they are identified with. They neglect the history of the people. (transcript, 4 00014 20 personal interviews, 2012 13) These Native ways of knowing and being are important to a Native way of looking at the world. A Native worldview, discussed next, factor ed prominently on how Navigator s approached their border crossing. Native w orldview. A Native worldview is a general way of referencing a shared AI/AN viewpoint. The complex concepts that surround and generate from this viewpoint, such as sharing, spirit uality and others are discussed here as only generally representative. A merican Indian and Alaska Natives (AI/AN) are a culturally diverse group. In North America alone, there exist federal r ecognized more than 565 tribal Nations ( BIA, 2014 ) (See Appendix H). The cultural diversity of these Indigenous peoples co mes from historically distinct Nations maintenance, and leisure are culturally specific to some degree (Skawski, 1987, p. 38). Thus, while considering this general viewpoint, it is useful to remember that important and critical distinctions exist that reflect specific regions, tribal groups and individual Native Nations

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276 Native Patient Navigators however, in their work, d escribed a Native wo rldview using an intertribal context, as important to border crossing and how they related to others. Navigator s explained that even though it is different for every tribal group, the ldview: We all have our different ceremonies, but we have ceremonies. Okay? We all have our different dances, but we have our dances. Right? So, we relate that way. We can relate in that way, even do. (transcript, 4 00025, personal interviews, 2012 13) As one Navigator commented on the difference of a Native Patient Navigators : seven to ten major concept s that are common to different Native Nations and/or the interactions of Native Nations with each other as far as cross cultural skills. And I think that having those skills and having your own personal Native perspective and knowledge allows you to conn ect to the (transcript, 4 00029, personal interviews, 2012 13) Navigator s spoke of honoring elders, the importance of sharing, valuing the four sides of the human dimension, ( the spiritual, mental, emotional and physical sides) and helping family, immediate and extended, above material things: Intertribal is basically the traditions and the culture that runs like a thread throughout all Native tribes. All Native Nations Basica lly, it is a way in which we respect and honor each other in terms of our spirituality and our respective histories. And it brings us as, it brings our unity together. It brings us in commonality because we know that each one of us is we're spiritual peopl e. We are people that acknowledge each other as spiritual people. Our ancestors are honored, our elders are honored. Our love for our children and our future is honored. That's something that runs really deep in our community. You can really witness that i n the pow wows because a lot of our songs and dances are intertribal and it brings together many different people to dance and sing together in unity. (transcript, 4 00014 20, personal Interviews, 2012 13) I mean, the definition of Navigator seems to be tak ing care of and looking after and helping and reassuring and being that person there to help you through hard times, and to me, that would be your definition of a Navigator In our culture, that would be the definition of our mothers and our women because n in existence. (transcript, 4 00028, personal interviews, 2012 13) blooded, half blood or quarter or (transcript, 4 00032, personal interviews, 2012 13) [W] ith the world changing like it is, there is some adaptation that is goi ng to have to take place, ancestral strength, stuff like that that nobody can take from us. We need to be aware of that

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277 because the world is fast changing. people. (transcript, 4 00028, personal interviews, 2012 13) Our people are wanting to be at home because as Indians, we want to be closer to them, especially can smell their home or they can lay on their own pillow, or they can hear all the grandkids or they can hear everybody coming together, bringing them food or coming to pray or having a preacher do that at the hospital even though you have your right to do it (transcript, 4 00032, personal interviews, 2012 13) Yeah. We don't want to forget our culture and our traditions and our heritage. We want to hold on to that as much as possible. We really don't like to be told that we should be this way or that way, or that we need to fit in. We would rather keep our own identities. (transcript, 4 00055, 56, personal interviews, 2012 13) [S] o I grew up with what felt like celebrating, what we call potlatches where we would get together and it's all about giving. Not rece iving, it's just part of giving. It's very cultural, meaning the elders you know, your parents, and the rest of the entire family. (transcript, 4 00051, personal interviews, 2012 13) the stories. (transcript, 4 00025, pe rsonal interviews, 2012 13) And the elders, up the re you respect the elders. It's the elders eat first. If were in a potluck or any of the elders will be offered food first. Even in a funeral. Even if it's the family, you always allow the elders to go fir st before the family even eats. Any part of our you always ask an elder to do the prayer at a meeting or at a conference anywhere we go, we ask the elde rs to do the prayer. It's just, you know, you listen to them if they talk you don't talk. You listen t o them. If an elder asks you to go and do something you do it, you don't argue. You try to do it before they even ask you. (transcript, 4 00049, 50, personal interviews, 2012 13) [B] ut talking with my Dad, we do a lot of life changing decisions as a family together, even though I'm an adult, there is still that respect of I need to talk with my family. It may not be the traditional family, but it's our cultural family, meaning more than just my Mom and my Dad. It's my brothers, it's my grandma, but she's passed away, but when she was alive it would be with my grandma. (transcript, 4 00051, personal interviews, 2012 13) ose kind of values. The respect we have for our elders. The time that we take to listen (transcript, 4 00028, personal interviews, 2012 13) [A] nywhere we go, we ask the elders to do th e prayer. It's just you know, you listen to them if they talk you don't talk. You listen to them. If an elder asks you to go and do something you do it, you don't argue. You try to do it before they even ask you. (transcript, 4 00049, 50, personal intervie ws, 2012 13)

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278 A Native holistic way of looking at the life w orld health and wellness Health, life, death, and birth are se en holistically by many Native Nations as in the circle of life with no beginning or no end, a perspective which is inclusive of al l life forms and is holistic in nature (See Appendix H ). Healing using a Native worldview consists of treat ing the whole person in balance with all four realms (Garrett & Garrett 1994) and restoring harmony at the chosen and right time (Locust, 1985) as opposed to treating the specific illness or cancer separately. Any time a person is treated using Native methods the whole person is treated; not just the illness or cancer, but the mental, physical, psychological and emotional realms (Garrett & Garrett 1994). Navigator s frequently took this approach: all the Medicine Wheel you know, when I'm approaching a patient to see as far as their needs to see wha t they need. But, then again, every patient is different and some want a lot of help and some want only a little. (transcript, 4 00039, personal interviews, 2012 13) onal needs are taken care of from a perspective of meeting them where their needs are. I've met a lot of folks who are not traditional in their beliefs, but have a spiritual belief, but still it is holistic. (transcript, 4 00048, personal Interviews, 2012 13) According to Duran (2006), the emotional, physical, spiritual and mental realms are all connected from a Native worldview. Some Native Patient Navigators expressed that they were better able to relate to and understand the Native people they worked wi th because of this common worldview they shared including those views concerning health. Duran (2006) writes of treating illness from a Native view in Healing the Soul Wound Navigator s spoke to this worldview regarding these health and wellness:

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279 Especially if they are going to be working with their bo dy, Native Americans believe that you know, their body is part of their spirit. And anything coming in and out of that is alien and if they don't trust you I mean, as their doctor, if you don't gain that trust, they won't believe what you're doing for the m, I mean, is even helping. (transcript, 4 00042, 43, personal interviews, 2012 13) It was this engagement and sharing of understanding of Native worldview that further supported Navigator s in their practice. patient family (transcript, 4 00025, personal interviews, 2012 13) (transcript, 4 00028, personal interviews, 2012 13) So I mean, Native Americans see combining the physical, medication, and treatment portion of it with you know, the spiritual support and you know, them being able to be involved with what kind of care they're going to receive, I think is very important to Native Ameri can people. (t ranscript, 4 00042, 43, personal interviews, 2012 13) Because of this common worldview, Natives were able to relate better: I think Natives relate better to other Natives so they, a Native cancer patient or somebody that needs help, at least in our area, is going to be more receptive talking to another Native person. Uh, they feel uncomfortable talking to a non Native and they, you know, they are more open with a Native person. (transcript, 4 00026, personal interviews, 2012 13) Some Navigator s spoke of the connection to other Indian people while they were here on earth and staying strong as a group of Native people, especially keeping in mind the next generations. Those kind of values. The respect we have for our elders. The time that we take to liste n because Those kind s of things in our culture, the strength of the people when they make up their minds to do something. (transcript, 4 00026, personal interview s, 2012 13) This Native worldview was contrasted by the Native Patient Navigators to the worldview associated with a Western medical culture: the other ha nd, I know what it is to be in the urban medical, you know, in the hospital, the (transcript, 4 00025 personal interviews, 2012 13) This Navigator s knew the importance of Native tr aditional medicine and how it differed from Western medicine (Western medicine is explored later in this chapter).

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280 Acknowledging differences between Native and Western worldviews was the first step in border crossing for several Native Patient Navigators Spirituality. Within the context of a Native worldview, for Navigator s it was important to honor spirituality (See Appendix H). This honoring could be in terms of valuing a s own spirituality as an individual and/or respecting the space for a worldview was frequently referred to as, just a way of being in the world as being part and parcel of an individual eat of life, of Mother Earth, the wind, the water, the fire, breath of life, the spark of life, everything, who you Thomas Lopez Roadman Teo calli Tepeyolohtlan, Native American Church, personal communicatio n, March 25, 2013): [ Navigator to a higher power] come to me and let me know. Let me know what I need to do. What who do I need to talk to today? Who can I share this with? Put someone in my path that needs me or that I need. (transcript, 4 00040, perso nal interviews, 2012 13) I pick up my [spiritual medicine], carry it with me all the time, have it available if I need it, and I am trusting them, as I always have, to do what they can to help me, and I know they will. (transcript, 4 00028, personal inte rviews, 2012 13) [I] whether it be milking off or sweats or whatever your background for your Indian people are, we still keep that grounded as who we are as Indi an. (transcript, 4 00032, personal interviews, 2012 13) Being there for individuals who were seeking help, being able to, you know, navigate the through the healthcare system, being able to, you know, maybe for emotional support. I think in our community, we are spiritual people, so being able to just spiritually support somebody. All those aspects were important to me. (transcript, 4 00021, personal interviews, 2012 13) Well, I think, y ou know, they all pray. And I'm not afraid to say sometimes you can pray. But I'm not gonna advise them on how to do that. That's not my It's not my place to do something like that. (transcript, 4 00038, personal interviews, (2012 13) We all have our different backgrounds of being spiritual, but what it all boils down to i You know, when our grandpa taught us intertribal because even non Natives that are married to [ tribal nation ] or a Native American, they know about the praying part. They know about going out to sweat lodge, they know about

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281 burning some cedar or bur ning some sage, so it is intertribal. (transcript, 4 00032, personal interviews, 2012 13) And it's mostly the elders. Like I said, the younger ge n eration are more they'll step outside the religion part, but the elders will put their foot down and say I wil l not travel on a Sunday. I mean they're just very and I don't know if that's my and I'm listening to my elder or if they just won't tr avel on a Sunday. (transcript, 4 00049, 50, personal interviews, 2012 13) Y es. [ Western health facility] hospita l even allowed a set of patient s who were in patient to burn sage in the hospital room. They would use some rubber gloves to cover up the smoke detector. So I think that they're taking steps to be more sensitive and to realize that we still do have our sp irituality and it's very much alive and it's strong (transcript, 4 00044, 45 46, personal interviews, 2012 13) [W ith regards to non Native Patient Navigators ] No I don't. But on the spiritual side of it, I do. Now the physical/emotional side I can see w here they, a non Native Patient Navigators would understand and respect someone else's culture/belief things like that, but to be fully spirit ually connected, I do not think (transcript, 4 00035, personal interviews, 2012 13) I think every Native, whatever his tribal structure or base, has the basic values that we all have. We have our Creator, who takes care of us and who gave us everything in this world that we need, promised, tried and true. Our problem is sometimes we forget to sit down and be quiet an d listen or to pay or respect or to say our prayers or to (transcript, 4 00028, personal interviews, 2012 13) Yeah. I think so. I think we do. We really respect if somebody is part of the church, we will respect their if they need to pray before sometimes they'll want to pray before their procedure or sometimes they'll want to. Just be part of that. Allow them to and pray with them. Whether you're going to church or not, you bow your head in respect and pray with them. ( Trans cript 4 00049, 50, personal interviews, 2012 13) Importantly, the incorporation of spirituality with healing at times conflicted with a Western medicine paradigm: Case in point. I have one client who s diagnosed with breast cancer and they told her that sh e needed to get Western medicine. She needed to get chemotherapy. She went back home. She got doctor and they could not find breast cancer. Today, she does not ha ve breast cancer. She goes in every year and they do not find breast cancer. She got cured from her medicine back home that was made specifically for her. And we talk about traditional medicine, you think they go to on e person. Sometimes the entire nation is called in to pray for one person. That's the beauty of our people. The whole clan or the whole family gets together to pray for that one person. And sometimes it's not one hour. Sometimes it's not one day. Sometimes it's 3 days. I have seen it done wher e it's 5 days, they prayed for one person to get healed and for the medicine to work. And I am living proof to tell you that that person currently exists in our community and is cancer free to this day. (transcript, 4 00014 20 personal interviews, 2012 13) I think that Native people think that I mean, they are in charge and they are responsible for their healing. I think it kind of conflicts a lot of times when I guess, a doctor, or physician, or nurse ask you know a lot of questions. If this is something they want to do they kind of feel a bit more or less like they're being told or you know, forced to do it. I personally, and I know a lot of Native Americans believe that spiritual aspect of healing can be a lot more powerful than any medication or any tr eatment plan that you go through. (transcript, 4 00042, 43 personal interviews, 2012 13)

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282 Meeting people where they are is typical of Native Healers and their interactions with their patient s. This relationship is typically based on a mutual respect, unders tanding and dialog, not ju dgment. P atient s have more acceptance, and, if they do not follow through, it is not punitive or judgmental ( Garrett & Garrett 1994). Navigator s as bo rder crossers equally regardless if t he choice were with Western or Native traditional medicine with its incorporation of ele ments of spirituality or both; Navigator s in both realms were serving as client supports. So I mean, Native Americans see combining the physical, medication, and tr eatment portion of it with you know, the spiritual support and you know, them being able to be involved with what kind of care they're going to receive, I think is very import ant to Native American people. (transcript, 4 00042, 43 personal interviews, 2012 13) Native Patient Navigators respect the space for spirituality. Regardless of how people pray or if it was individual or collective, spirituality was seen as an important part of a Native way of life and views on health and illness. These Native ways of being also include respectful ways of talking. Ways of t alking o ral t radition Navigator s frequently use oral tradition in their daily practice. Oral t radition is used by many AI/AN Nations Oral tradition is used in healing, Native psych ology, Native philosophy, and expressing Native worldviews and Native spirituality. Navigator s referenced oral tradition frequently in their conversations: What I think about the oral tradition basically is that, you know, people think about the oral tradi tion as a way of people telling stories and people talk about telling stories from generation to generation, and sometimes we talk about these legends, and sometimes we talk about tales. You know, th coyote tales or differ ent oral traditions that were passed down in our communities (transcript, 4 00029, personal interviews, 2012 13) How do we all stay together as a group, a strong group, keeping us strong, keeping our Native side ell the stories (transcript, 4 00025, personal interviews, 2012 13) Oh, absolutely. Absolutely because when we go to say like to Denver or we go to Portland and we

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283 same thing, so yeah, I think so. (transcript, 4 00032, personal interviews, 2012 13) This use of oral tradition is as important today in many Native Nations as it was in the past. This way of relating through oral tradition is generally seen by Navigator s as common occurrence among tribes. Frequently, oral tradition is used for teaching important knowledge using Am erindian circles of learning or to relate to others and to communicate thus touching on elements of sociocultural theory : have to tell the whole story. Na vigator we have to be kind of storytellers. (transcript, 4 00025, personal interviews, 2012 13) Humor within the oral tradition was frequently commented on by Navigator s : I think humor is part of our value system. It's like Indian humor which is if you ev er watch and Indian movie, the only ones laughing are the Indians 'cause the Indians are the only ones who understand the jokes. I think Indian humor is good because it makes people relax and you really need to be relaxed to have a mammogram. (transcript, 4 00034, personal interviews, 2012 13) know, no hair, but beautiful hats and that kind of thing. But, that little bit of spirituality is lost. That why i and visit so and so and so and so or we would go visit Granny so and so or Aunt so and so and we used to have such a good time would laugh and we would get in her ca r and we would visit. (transcript, 4 00028, personal interviews, 2012 13) Laughing I think you need to laugh because you know, when you're diagnosed with something bad, I know you cry, you can't believe it, but you've got to let that go, 'cause you've got to rally yourself to fight this. Sometimes giggling helps 'cause you get all that it lets it all relax and then you can, ok, I can do this. (transcript, 4 00041, personal interviews, 2012 13) Humor and laughter within oral traditions is also very important to a Native way of looking at life, because these traits relieve stress and create an atmosphere of connectedness and sharing. It is reaffirming, thus enhancing a sense of connectedness experienc ed as part of the group; indeed laughter is healing (Garre tt & Garrett 1994)

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284 I've met Indian women who have had 3 children and I've had 3 children. I don't need a PAP. What do you mean you've had 3 children and you don't need a PAP? Well, you know the doctors looked at me down there already, so why do I have But, you have to have one. So those it's you have to have isn't that kind of crazy? So you have to come up with a fun fact to those women and let them know that that's kind of crazy. How about if we do this and we'll do this for you? It's always with the Indian with my women it was like a give and take. I'll do this for you if you'll have a mammogram. So, it wasn't always like they're constantly giving. We have to give a little to them and they will give what we need back from them. (transcri pt, 4 00034, personal interviews, 2012 13) Significantly, oral tradition also is a way of passing important information on to clients and even the next generation. One Navigator commented on how the practice of oral tradition was really a teaching of esse ntial knowledge on how to live in a healthy way: wer e practices that would make your life better. So, they were taught to you because they were rpose possibly of humor. And s o sometimes when we have really a look at our oral tradition, some of the stories were really people connect with today, b ut I think that the oral tradition at one time was, this is the way to live your life and these are the things to do to make it good, and beware of these things because they will make you unhealthy or cause pain or sorrow or loss or something like that. like, Oh, I know a hundred Indian oral stories (transcript, 4 00029, personal interviews, 2012 13) Notably, oral tradition was not seen as existing separately from the life of the people, but was seen as an everyday part of life. Naviga tor s put value on the importance of oral tradition and where applicable, they incorporated this into their work. Well as for myself, I was always so when we talk about screening, colonoscopy, mammograms, I share with them. It's not that bad. If there i s something detected early. The earlier the better. The more you ignore it, you don't know what's going on internally. I t's educating folks about stuff. (transcript, 4 00053, personal interviews, 2012 13) Communication. Different styles of communication remain an issue for Native people when dealing with Western Institutions (See Appendix H). These communication

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285 styles differ locally influenced by community and tribal norms. Navigator s remarked on the differences in communication styles that are uniqu e to each tribal culture: If I was sitting by an elder, I wouldn't start the conversation, the elder person would start it to me. And you would never look an elder in the eyes. It's always down. For me to sit here and look in your eyes, in my culture it (transcript, 4 00051, personal interviews, 2012 13) I know what the look on their face means. Facial expressions in our culture. We use a lot of facial expressions to know that raising an e yebrow means yes. You can have an entire conversation with a patient and they might not say one word, but they're answering every question you've asked them by either crinkling their nose for no, or raising their eyebrows for yes. And if they don't know th e answer, they usually look to the person next to them to help them answer. So, I mean, just little things that somebody wo or to know who when you r e talking to somebody on the phone, to know maybe that they don't hear. That t hey have a hearing problem and you're explaining all these things and to know that they only went to maybe the third grade in school, you know because that was all that was available at the time. I m ean, it's just very I think it's very important to have l ocal people. And people are very comfortable coming to somebody local (transcript, 4 00049, 50 personal interviews, 2012 13) Looking in the eyes. It's not viewed as a great thing to do for sure. There are ge stures that I learned probably three years ago, t hat [are] true all over. Like this that's saying hi. I've actually experienced a couple of patient s in the room and I have to remember where they came from that there are different signals that they would do that's to the same effect as yes. (transcript, 4 00051 personal interviews, 2012 13) Communication can go in surprising directions: Yeah. Well some we do have a physician from, he looks like he's, oh goodness. He has a little bit of a language barrier. He looks maybe Chinese, or Japanese. Well anyway, s ome of the patient s have said, I d on't want to go back to that doctor because I can't understand him and he doesn't understand what I'm saying. I'm like, ok. (transcript, 4 00039, personal interviews, 2012 13) One Navigator s remarked on how they themselves had to work to address their own tribal cultural norms and communication style: It took me probably three years truthfully, to get past the idea of I can look somebody in their eye without feeling very uncomfortable, because I was not raised that way. B ut, in order to be able to do what I'm doing rig ht now, I needed to adjust what [pause] how I was taught. Even now I feel a little bit uncomfortable, but talking with my Dad we do a lot of life changing decisions as a family together, even though I'm an adult, there is still that respect of I need to talk with my family. It may not be the traditional family, but it's our cultural family, meaning more than just my Mom and my Dad. It's my brothers, it's my grandma, but she's passed away, but when she was alive it would be with my grandma. (transcript, 4 00051, personal interviews, 2012 13) There are differences in sharing knowledge through oral history and this fact is reflected with Native Patient Navigators and their comments on Western public health

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286 pr actice and communication. One of t he most obvious differences is a Navigator broader view of the ways people communication: And I always and then there's communication. There's a silent communication between Native people. It's you know. You could watch Native people out there hurting. You know if their feeling sad. You know if it's just a silent communication. (transcript, 4 00034, personal interviews, 2012 13) Is there a wa y they, talk to them? Include the family. Maybe there's other issues th at they're dealing with that might be outside. You really have to start talking to and there's techniques you can do with communicating with them using this type of question. Using the talk back method, you know, getting asking more open ended questions a nd trying to get to the root of the problem and helping them come up with solutions. (transcript, 4 00048, personal interviews, 2012 13) The following quote was used previously, but it is repeated here, to demonstrate the many subtle facets of AI/AN communi cation. Oh yeah. There's things like we don't have a word for goodbye. We don't say goodbye. We say goodbye in English, but if so on the phone sometimes people, when they're done talking, they've answered your question they'll just hang up. And that d oesn't mean they're hanging up on you that means the y were done. We don't have an [Native language] word for goodbye. We don't have a lot of emotion words. We don't express a lot of emotion in our words. We do it mostly through facial and through, I'm mean shrugs, and you know we don't, we never, made up a word for love because we don't have a word for love. We have emotion words like happy, sad, angry, but we don't say I love you in [tribal nation ]. There's no wor d to say that (transcript, 4 00049, 5 0, personal interviews, 2012 13) For example, in accordance with their tribal norms, some Natives will not typically interrupt a speaker and will wait for a pause in the conversation to speak, reflecting on what was said, before responding (Garrett & Garre tt 1994). Conversely, through a Western lens, interruptio opinion and seen as strength. Not interrupting may be seen as a weakness through a Western lens. Thus, through a Native lens, th is same action for some tribal Na tions may be seen as rude; the value of listening is paramount, as reflection and silence are valued (Garrett & Garrett 1994). unicate or relate to their ways. (transcript, 4 00028, personal inter views, 2012 13)

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287 Knowing and using local norms for increased Native communication is an important asset for Native Patient Navigators and one that they naturally incorporate into their work. Self d etermination. Many Native individuals have a desire to mak e their own choices in their lives, both in health care and other areas (See Appendix H). This self determination value for Native people extends outward into the tribal community and the conceptualization of a Native n ation as a whole. Among tribal gove rnments, self choice, in the form of honoring this self determination concept when applied to a Navigator s respect individual self determinati on and the right to choose: ings that you have to deal with (transcript, 4 00028, personal interviews, 2012 13) die at the hospital. They want to be at home. (transcript, 4 00032, personal interviews, 2012 13) they are in the people that are dying at home, the your smok comfort place. Our people are wanting to be at home, because as Indians, we want to be closer to table. They want to be at home where they can smell their home or they can lay on their own pillow, or they can hear all the grandkids or they can hear everybody coming together, bringing them food or coming to pray or having a preacher or pastor come in or having somebody singing peyote songs to them. You just something about laying in bed, being at home and then having your last breath at home, saying t to have IVs or anything like that, (transcript, 4 00032, personal interviews, 2012 13) But they want to be involved more, in what the final decision is on what's going to happen to them. I mean a task I mean it's really hard working within IHS and working on a reservation like I said, the resources are small to none, so sometimes they don't have a lot of choices. I mean it could be just this one choice, like this is the only t hing we can do. And I think

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288 that takes a little bit away from their spirit and them being able to make that decision. And pride is huge in Native Americans. Like I said if it takes away a little bit of their spirit, I mean, that goes to their spirituali ty and their mental portion of their healing process also. So, that's why I think it's really important that they're able to make some of the decisions on the treatments that are going to happen. (transcript, 4 00042, 43, personal interviews, 2012 2013) Na vigator s while respecting choice, always want it to be an educated one: Having an open mind, I guess. Be flexible. Making sure that you have, you can communicate well with a person. Making sure that you help the person become a self advocate. Encourage the m that they have that they're in charge and they need to make these decisions and they're their responsibility, but you're there to help them out. You meet the patient where they are. Respect the journey that they're on. They might not be ready at that ti me to ask for assistance, but to let them know that you're available whenever they need assistance that you'd help them out. If there are people who you know, get diagnosed and you just don't want anyone around them and you don't want to help them, but lat er on you start thinking well you know, I'm at that point if I've acknowledged that I have cancer that I'm going for treatments so who can help me know. So you're there just meeting the person where they are. (transcript, 4 00056, personal interviews, 2012 2013) I had one patient that was diagnosed with stage 4 pancreatic cancer which by then you know, obviously nothing can really be done. P atient was going to be put on adjuva nt chemo. P atient decided, and he was very young he was 42 years old, decided that chemo was not going to be for him. He was going to go with the Indian way and fully just keep going the whole traditional way with it than going through chemo. I explained that what he was doing as far as, like I won't get into detail on the type of medic ine he was using, that it wasn't gonna stop the cancer from spreading. Stage 4 it's already everywhere, but there's not any way that's going to slow it down or anything. So, I think that educating him on that you know. He understood, but I also still respe cted his choice to do fully with traditional medicine. (transcript, 4 00035, personal interviews, 2012 13) Navigator s cancer journey. This may be reflective of a closely held tribal value of self determination and the larger conceptualization of individual tribal Nations to remain self determinant with regards to their own future. In a ddition to self determination, Navigator s incorporated Native ideas on kinship, the next topic. Kins hip: a relational way of b eing. Kinship and the importance of relationship are deeply held beliefs among many Native Nations (See Appendix H ). These views frequently put Navigator s on common ground with their clients and additionally, at times, support their positions and how they approach their work in the community using a Native worldview. When one Navigator it mean to you to be a Native Patient Navigator t he participant immediately went to the idea of kinship:

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289 It means how I would want my mother or father, or loved one to be treated as they face a cancer diagnosis. When I walk into the room I often look at their birthdate, then associate them with a relative, if younger, for example a nephew, to make sure that nothing falls through the cracks. (transcript, 4 000G, personal interviews, 2012 13) Kinship from a Native perspective, is an important intertribal value (Garrett, 1999): Yeah. My patient s, whether it could be a 14/15 year old kid with some kind of osteosarcoma, I honestly I treat them as if they're my little cousin. I make sure that I'm there for them. Make sure that they're getting the proper care in a timely manner, not just here, but from within the tribal or Indian Health Service referral system. Everythin g is just so I put on myself to make sure that these patient s are treated as if they are my family. And that's how I do treat them. I've never once turned my back on a patient or anything before. (transcript, 4 00035, personal interviews, 2012 13) B ut the truth of the matter is, I have never known a Native person to turn one of his people away. were. If those are your clan people, not only your clan pe But, if I called o (transcript, 4 00028, personal interviews, 2012 13) because they really like that trust. Once you build that trust, you ju st have family for all your life. (transcript, 4 00025, interviews, 2012 13) One of the things that we found that was a common philosophical perspective in tribes was the had an inner connected role in the world, which would lead me to believe that they looked at their societies the same way and took care of all those people within their societies. (transcript, 4 00029, personal interviews, 2012 13). We're more a cute to seeing this person as an extended person. Seeing this person as my mother. This person looks like my grandmother. This person looks like my sister. So, I feel very much an affinity to some of the people that I had the fortunate, to take care and th at I'm c urrently taking care of (transcript, 4 00014 20, personal interviews, 2012 13) Navigator s frequently incorporated a sense of kinship into their work. When several Navigator s of different tribes were asked their definition of a Native Patient Nav igators their immediate answers incorporated ideas of kinship and a relational way of being. Establishing relationships is critical to being an Indigenous person. According to Shawn Wilson author Research is Ceremony: Indigenous (2008) we [Natives] do things is

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290 are as Indigenous people is relationships t is a key part of the philosophy a the importance of relationships I ndigenous Research Association, AIRA, Conference Presentation, Flathead Reservation, Montana, Octobe r 11, 2013, www.aira.com ) Due to this sense of inner connectedness, Navigator s saw kinship with regards to patient n avigation as playing an important role. As noted earlier, many Navigator s had worked years promotin g health and/or unofficially navigating before getting recruited on a grant and receiving a s alary; seeing the value of the Navigator s role as an extension of helping relatives by using their cultural perspective: I think the role of a Native Patient Navi gator that is growing. More communities are learning about it and understanding it and are adopting it I want to be the Navigator Navigator need to be educated more. I need to do it in a more efficient or effective way. (transcript, 4 00029, personal interviews, 2012 13) The below quote was used previously, here it is used specifically to demonstrate Navigator s incorporating their Native ways of k nowing and being : Most important about being a Native Patie nt Navigator is honestly I think the whole traditional side of it. The beliefs, cultural beliefs and everything. Being culturally sensitive, making sure to, that the hospital is culturally sensitive to their values as well as beliefs. Continuation of c are for a patient To me that's just kind of what it falls into. (transcript, 4 00035 personal interviews, 2012 13) This view of relationship along with the ot her cultural elements mentioned, c ontributed to navigation being seen as a Native Way of Helpi ng which follows next. Navigation as a Native way of h elping The nature of Native patient n avigating supported this connection to the kin, communit y and Native Ways of k nowing and being

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291 (See Appendix H). Because of these connections, N avig ation was als o seen by several Navigator s as a Native social way of ta king care of each other and as Navigator s related, naturally compliments a Native cultural perspective: Well, my perspective is really that navigation is a real natural Native social way of taking ca re of councils and clans and through our medicine men and our elders where people were taught healthy ways to live. People were taught essential knowledge by their elders. If somebody was sick, people gathered around them and tried to bring to them what curing methods or help that they could, which varied quite greatly based upon each of the Native tribes, their local environments and their natural medicines and resources and spiritual ways. So, it was a varied approach, but I think it was a process of navigating people through illness and accessing those healing methods that they need. (transcript, 4 00029, personal interviews, 2012 13) as a community mem ber and a tribal member and a woman in my tribe. Those are part of our responsibilities. I mean, the definition of Navigator seems to be taking care of and looking after and helping and reassuring and being that person there to help you through hard time s, and to me, that would be your definition of a Navigator In our culture, that would be the definition of our existence. So, the definition of Navigator no w, to me, sounds like something that the women in my life have been doing all their lives. (transcript, 4 00028, personal interviews, 2012 13) know, related t o their health. (transcript, 4 00021, personal interviews, 2012 13) We have a greater respect for the land that our grandparents died on and are buried there. We have a great respect for each other and our survival and our intent to be together and to be well and to keep our people well. (transcript, 4 00028, personal interviews, 2012 13) Native Patient Navigators took care of their communities in this social way of taking care and helping. This approach to health and healing differs significantly from th e clinical and scientific approach associated with Western medicine. I think as Native people, we're raised to be Navigator s and Patient Navigator s. I know my grandmother used to take care of everybody back home. She was like a Medicine woman and she took care of everybody. She had she delivered all the children out there and if we have medicine to give, if there was a kind word to say, if there was a transportation, if there's food, if there's a need that my mom, my grandmother and all the strong women in our family what we did. So, I'm very fortunate that I'm being paid for this, but it's kind of the way of life for Native women. (transcript, 4 00014 20, personal interviews, 2012 13) Western Medicine Border crossing for Native Patient Navigators in volved many institutions of Western medicine (See Appendix H). The need for acceptance and commitment to the

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292 health of AI/AN people by Western medicine institutions was significant for many Navigator s: I just think there needs to be prevention and more edu cation within the communities. And I think just for, in terms of the clinic side of it, I think there also needs to be more education from a professional like a registered nurse or doctor too, just so they're getting it from both ends, not just the commun ity, but from the hospital setting too. (transcript, 4 00036, personal interviews, 2012 13) I merous family members who have passed from cancer. I mean we had, you know, an aunt die, or actually two, one from uterine and one from cervical. I had a classmate pass away from stomach. You know, you see all these really strong healthcare system where, you know, we can go to for these people to seek help (transcript, 4 00021, personal interviews, 2012 13) I think when you say Native Navigator that you have to realize that you want somebody to identify with that community because our needs are not being met and have not been met for centuries, then, by We stern medicine (transcript, 4 00014 20, personal interviews, 2012 13) Native Americans you know, of course with history, they don't you know, they don't always trust the Western way and that includes Western medicine. Especially if they are going to be wo rking with their body, Native Americans believe that you know, their body is part of their spirit. And anything coming in and out of that is alien and if they don't trust you I mean, as their doctor, if you don't gain that trust, they won't believe what you're doing for them, I mean, is even helping. (transcript, 4 00042, 43, personal interviews, 2012 13) A lot of our Indian people are dying at home suffering when they could easily have that extra morphine. Whether it just be turning them because a lot of hospital. They want to be at home. (transcript, 4 00032, personal interviews, 2012 13) I respect Indigenous traditional hea lers and I have witnessed and have witnessed to their healing powers f or their peoples, from various Nations I respect that. And so very much I am a bridge in terms of honoring that part. It's not hocus pocus, it's not occultish, it's not it's a medicine It was a gift given to various people to heal their people through prayer and through ceremonies that are not, to this day, not respected. To this day are seen as less than recognized religions but very much they are on the foundation of much prayer. (tr anscript, 4 00014 20, personal interviews, 2012 13) As border crossers, Navigator s saw the benefit of Western medicine and wanted to make it available to their clients and communities despite numerous barriers. One of these barr i ers was racism which is t he next topic. Racism. Getting acceptance from practitioners of Western medicine was not easy due to the history and co ntinuing experience of racism from members and institutions of

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293 the dominant culture toward A1/AN people (See Appendix H). Navigator s s poke frequently of this experience: They put a lot of trust in me that when they do see a doctor, they know that the doctor, you know, is a doctor for a reason, but a lot of things that the Dr will say they don't really believe. And I know it's not just the whole fact of a patient be ing in denial, it's more of the especially for the traditional elders, it's more of the race, kind of plays into that, on that trust issue. (transcript, 4 00035, personal interviews, 2012 13) I just think it's important for p eople to know or for our people to know, that there are people out there that will help them. That will intercede and stand between them and our culture and white man. Basically will watch over them and make sure t hat everything's going to be ok (transcr ipt, 4 00040 personal interviews, 2012 13) I think one of the most painful things I have heard from my clients is that one patient was with a MD doctor, she was getting chemo and radiation, and her doctor came in and asked her, "Are you Native American? And she said yes, "I am Native American." He walked out of the room and never came back again. He refused to treat her. And when she told me that, I felt so bad for her. And to this day, she's very pained. That's a painful memory. But, she was refused to be treated by her MD doctor because she identified as Nat ive American. This happened in [ US state]. And this happened with her Patient Navigator who was with her, and also her daughter within the same room. And it pains me every time she tells that sto ry. And that's her sto ry and her journey with cancer, Survivorship as an American Indian woman. (transcript, 4 00014 20, personal interviews, 2012 13) Navigator s had empathy when speaking about this subject noting a certain tug at their heart, when talking abo ut how sometimes Native people do not get the same respect when they walk into a n on Native environment as non Native s. A Navigator talked about the need to temper the blow: You almost need an insider to soften the blow [she put her hands up, as if ge tting hit)] to avoid getting hit. (transcript, 4 000G personal interviews, 2012 13) Other Navigator s talked of addressing the negative stereotypes of Native people: You know sometimes people outside the reservation can be really harsh. I think that they think we get a lot of handouts. That we get money from our casino. Our education is free. There is some free stuff, but nothing is really free for us. There's always a consequence. There's always something there. It's not free. And if you don't und erstand the way of life, then you're gonna find it's hard to help somebody. (transcript, 4 00044, 45, 46, personal interviews, 2012 13) These examples of racism are sometimes from Western medical professionals, as in the example below: For example, a non Native you Indians dress up o, when they dance and stuff.

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294 it s simple things like this which really can get in the way of care and/or building that trust relationship. (transcript, 4 000G, personal interviews, 2012 13) A challenging part of the Navigator border crossi ng role was crossing into professional and emoti onal racial territory in which Navigator s utilizing their Native identity, subjected them selves to racism. Their situation was not unlike that of other colonized people who feel the pain of racism and margin alization, but also work to help their people survive by accessing the resources of the colonizer. While accessing these resources, at this point in the navigating of treatment processes, the Native Patient Navigators must find and use strategies that are culturally Western. A true negotiation must apply Western resources Tribal critical race theory (Brayboy, 2005) acknowledges the source of racism and who it is directed to, simply because that person is Native. Ironically, in many healing situations, both the victimizer and the victim know what is taking place in one or more of these areas, i e, the psychological, emotional and social levels of racism and their varying degrees. Tribal critical race theory and its application in public (20 05) work within critical race theory Tribal critical race theory with regard to public health explores this ongoing legacy of continued racism, imperial i deology and past colonization on Native American people. This heritage began with the violation of Native American treaty rights, the seizure of Native American lands and the continued, ongoing, forceful efforts to assimilate Native Americans ( Brayboy, 2005 ) Colonization and racism are persistent in society and public health institutions that affect Native American health. Colonization means that European American thought, power and knowledge system s continue to dominate present day society in the

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295 United States. Racism and colonization have become so engrained and incorporated in US society and its invisible ( Brayboy, 2005 ) Importantly, other cultural views such as Native traditional medicine are dismissed and an active concerted effort is made to replace them with the eclipsing AI/AN worldviews, wa ys of knowing and being and ultimately, their choices for care. Mistrust. Unethical care protocols have historical relevance in terms of connections to government policies designed to eliminate AIs in the nineteenth and twentieth centuries i.e., the f orced sterilization of Native women without proper informed consent (Lawrence, 2000) (See Appendix H). Mistrust was a frequent issue for Native Patient Navigators when border crossing: attitude, you know. There might be things that they might say that you understand they have a mistrust of non Natives, you know. And like I said, I mean even my cousin who is now around a little bit younger than my age, he talks m ore Nati ves in our little community of comfortable. But now when you go [urba a little bit less, you know, Natives around that area. So yeah, I mean I can just say that like for my generation, you know, you understand where your grandparents and your parents and your aunts and uncles are coming from. to you. (transcript, 4 00021 personal interviews, 2012 13) Significantly, this mistrust can be passed down through generations: could be even more mistrust for them about growing up in the reform schools, you know, and how they were punished for using their own language, you know, thi ngs like that. Now the mistrust for them might be on a higher level. yeah, maybe it does have something to do with, you know, generational attit ude because you hear you know, mistrusting non of instilled within you, so maybe it does have something to do with that. (transcript, 4 00021, personal interviews, 2012 13)

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296 A lot of times wit h the elders I'll use a bit of [tribal] language with them to make them feel comfortable, you know speaking to me. I have to let them know who my family is a nd where I come from, who my family is. And a little bit as to I guess the program that I work for it's a research, I mean ultimately it is a cancer research program to try to eliminate cancer and disparities with cancer. So it can be real to ugh sometimes when you have a little bit more of the radical type who if they hear the word research, they have this defense up. Sometimes I have to go into a little bit more education and do a lot more advocating for the program that I do to kind of get t hem to trust me. That trust is very important and I don't take it lightly. I think it's very important from the get go when I start working with these patient s that I work with. (transcript, 4 00042, 43, personal interviews, 2012 13) In orde r to do their w ork, the Native Patient Navigators had to attempt to mitigate that mistrust of Western society and Western medicine. They did this even as they understood the historical and experiential basis of the mistrust. Importantly, they may have shared it through personal experience. Scientism In addition to confronting, and quite possibly repressing their personal reactions to racism, Navigator s had to negotiate the compartmentalized scientism of Western medicine (See Appendix H). Scientism is characterized by the style, assumptions, techniques, practices, and such, typifying or regarded as typifying scientists. This rigidity was exp a criterion for choosing problems that, while the paradigm is taken for granted, can be assume d to have solutions. To a great extent these are the only problems the community will admit as scientific or encourage its members to undertake (p. 37). It is with this strict and u nyielding paradigm that Native Patient Navigators as border crossers fre quently find themselves working: And there will always be a Western medicine that none of us will touch. There will always be those kinds that just violate who (transcript, 4 00028, personal interviews, 2012 13) This quote w as used previously, but here it demonstrates the differences between Western and Native paradigms. Native Americans you know, of course with history, they don't you know, they don't always trust the Western way and that includes Western medicine. Especial ly if they are going to be working

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297 with their body, Native Americans believe that you know, their body is part of their spirit ( transcript, 400042, 43, personal interviews, 2012 13) Setting and crossing b oundaries. Navigator s not only crossed borders bu t their work required that they also set boundaries. Navigator s developed views on limitations to their duties and what the ir priorities should be. As a Navigator comments: If the patient the role of the Navigator Perhaps a Navigator needs to make sure that the patient has family members set up who will monitor their medications, not only that they have some in the cupboard, but how many are available to that patient ause some patient s over medicate, some under medicate, but if the Native Patient Navigator has like five or ten patient s, you want to be everything for that patient shopping. I will m ake your bed. I will take you to the doctor, to do is to figure out how to put together all those pieces that that patient needs. (transcript, 4 00029 personal interviews, 2012 13) In drawing the line around professiona l responsibiliti es and setting boundaries, the Navigator s were forced to contradict the cultural and community pull to see their work holistically, as part of their role as community member, kin, and helper. This contradiction between the professional com partmentalization and the Native way of being had the potential to be spiritually and emotionally challenging. Contradictions emerge in terms of bounding the professional role of Western healthcare worker when dealing with their own culture which views he aling as holistic: They know they are not medical people so they are careful not to say something. But the boundaries are different and may not be the same as with non Native Navigator s. People can Native Patient Navigator You need to see, (transcript, 4 00029, personal interviews, 2012 13) Navigator s commented on the necessity of restraint and knowing their own boundaries and capabilities in their work. Navigator s understood their professional boundaries. Seve ral Navigator s stressed the importance of knowing those limitations and engaging in a delicate balancing act.

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298 There is a very thin line there and you have to know when to know when to kind of step back. (transcript, 4 00025, personal interviews, 2012 13) Native Patient Navigators work with border crossing implementing their inhere nt knowledge from experiences of successfully navigating a treatment for their client both as insider and outsider Tribal critical race theory (Br ayboy, 2005) explains what the Native Patient Navigators must do consciously in order to do border crossing knowing that, at times, thi s separates the Native Patient Navigators from the community. This separation was noted by Navigator s: ing it [the work] by m yself and it does get stressful (transcript, 4 000G, personal interviews, 2012 13) Al so, for a traditionally raised Navigator s : There is also a lev el of acculturation in the city some one closer to their land or their ceremonies. (transcript, 4 000G, personal interviews, 2012 13)) This quote was used before, but here in this instance it is demonstrating a n advocacy stance which in turn, may cause separation from others for the Navigator : I had disagreements with IHS. I've been intrusive and annoying by the clinical director. I've had encourage them to just keep writing, you know, write back. Go bac k to the clinic. Don't give up. even encourage some people to take it to the health board. Because [the] health board meets with all health programs and IHS. And I've gotten scolded over that too. Not by my supervisors, or my work place, 'cause th ey've always supported everything that we do 100%, but from IHS. from people in those positions. So you really have to be a fighter, if you will. And be a very strong advocate (transcript, 4 00044, 45, 46, personal interviews, 2012 13) Native Patient Nav igators are both insider and outsider. However, commu nication about the role of the Navigator s and being descriptive about what they are able to do allows them to access both Western and Native ways of treatment. It does not require acceptance or applica tion of either paradigm completely. It allows the Navigator s to be both insider and outsider in Western and Native practices that are most appropriate to the client.

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299 There is a very thin line there and you have to know when to know when to kind of step b ack. (transcript, 4 00025, personal interviews, 2012 13) A grant is a grant. It could be gone any day, or the money could just run out and then where does that leave me at. (transcript, 4 00052, personal interviews, (2012 2013 ) As noted, border crossing can be problematic and at times can cause conflict. From a critical theory both an insider with access and trust, and as an outsider with important knowledge and re lationships that facilitate health care access through education and navigation. The Navigator s critically examine both their roles and the inherent drawbacks and inherent conflicts associated with those roles. Using border crossing allows negotiations, but also can serve to separate the indiv idual from their community. Navigator s commented on being an insider to Western medicine as a protector: [Native people] (transcript, 4 000G personal interviews, 2012 13 ). Yet, the Navigator s can be out sider s to some by not adopting the Western paradigm: I think for me that is a constant struggle, bec ause I was raised traditionally. (transcript, 4 000G, personal interviews, 2012 13) And still the Navigator s can be an outsider with other Natives: But for o traditional medicine, you are only invited (transcript, 4 000G, personal interviews, 2012 13) ot being the for Navigator s : I'm a different kind of an Indian. I'm not your usual Indian. So, the person that is a Native Navigator s has to be very open to talk to people and whether that be one on one, or a group full of women or men. (transcript, 4 0 0034 personal interviews, 2012 13) Nonetheless, Navigator s try to maintain professionalism while being culturally sensitive: [A]nd I think that Navigator s maintain their professionalism while figuring out how to meet all the needs of their patient s (transcript, 4 00029, personal interviews, 2012 13)

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300 he describes this insider/outsider separation as be ing of them but not one of them Challenges In addition to the emotional and spiritual challenges mentioned above, Native Patient Navigators face unique practical challenges in their role to be border crossers between the worlds of Native ways of knowin g and being, and Western medicine. Some of these issues stem from AI/AN choices for care in the form of Western, IHS and Contract Health Services. For example: There is no electronic record that can get passed between Indian Health Service and other faci lities. The only way that medical records and so forth get released, is the patient says they be Indian Health Service mails it, faxed it over or have the p atient pick up the scans and so forth and take it over. So, it's sort of, just some issues that prevents a lot of folks from going in for continue doing this t and try to deal with Indian Health Services it's a challenge and people drop out. (transcript, 4 00048, personal interviews, 2012 13) I think if you're familiar with any of the reservation health systems, the one that I work for in particular, they don't always have money and resources to help people with their treatment. And it can be very, very tough for them too, even though they've had a diagnosis of cancer, actually get ting in and getting treatment will sometimes depend on funds available. (transcript, 4 00038 personal interviews, 2012 13) Health Board provides a limited number of services. They have, at times, provided some income, you have more limited ability to access healthcare in an urban area. A lot of people in that cat public health program. (transcript, 4 00029, personal interviews, 2012 13 ) So Navigator everybody. (transcript, 4 00032, personal interviews, 2012 13) So, I feel like I'm walking in two worlds all the time. I am a bridge. And that's part of my job as a Navigator as well. (transcript, 4 00014 20 personal interviews, 2012 13) The Native Patient Navigators assumed an advocate role in the attempt to improve healthcare access for their clients despite the economic disparities between the resources

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301 of the W estern medical system and the health resources available to AI/AN. As well, the Native health care systems were beyond the Navigator s attempt to mitigate inequity while being confronted by it as an element of their work. We are here to help with Contract Health, push the paperwork through. Instead of having your to know we handed it in radiation. Why is this paperwork taking so long? Has it been pushed through? Hey, let me have it wal k it through, if I have to call [healt h facility], if I have to call [health facility] (transcript, 4 00032, personal Interviews, 2012 13) The upside elements of their work were many, but there were downsides like sometimes peop le avoid, ev because they have not followed through with their Navigator s adv ice (Rivera, Cancer Today, Fall 2014, p. 41). But, the ultimate goal of the Navigator s and their roles was to help empower clients and their families at any point in their journey through diagnosis, and if necessary, treatment, cancer survival or end of li fe decisions. For some of these heart w renching decisions, there is immeasurable stress for the witness: Li ke I said it, sometimes it does, the load gets a little heavy, but I always have to remember in the do, to push and to search and to get answers and to get up and go to meetings, even if or five hours long, never, never been turned away by my tribal l (transcript, 4 00032, personal interviews, 2012 2013) Because I've noticed that too 'ca use some patient s don't want to tell their family, or their significant other. You become that support person for them as well. (transcript, 4 00039 personal interviews, 2012 13) [T] hat's a tremendous amount of responsibility and knowledge that we carry ju st as being a Native [ P atient ] Navigator (transcript, 4 00014 20, personal interviews, 2012 13). For Navigator s border crossing between Native ways of knowing and being and inducing cont radiction in the Navigator

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302 in Native culture. This is alluded to in the comment from one of the Navigator s when (transcript, 4 00029). However, it is the ultimate border and as such, it provoked extreme stress for Navigator s Despit e addressing these challenges, Navigator s are important bridges between Western and Native traditional medicine our next topic. Making Bridges b etween Western and Native Tradit ional Medicine: A fundamenta l aspect of the work of Native Patient Navigators was to build understanding, trust, and access to health care across the borders of Native ways of knowing, Native traditional medicine and Western medicine (See Appendix I). Acc ording to Native Patient Navigators for the Native Navigator s across the Cancer Continuum program [NNAC] : P atient s frequently see the Navigator s as an insider to the health care system, but not a d irect part of the system. The Navigator s is able to under stand the needs of the patient as well as the requirements of the health care system/team and facilitate coordination between the two while providing both personalized emotional support and comprehensive access to care and resources. Thus, the Navigator s serves as a bridge between the patient and the health care system and can help both to identify strategies that support survival and qua lity of life [NNACC] Navigator s. ( P ersonal communication, 2012, as cited in Krebs et al., 2013 ) The practice of Native p atient n avigation is essentially the practice of buil ding bridges. The role of the Navigator s was not only to cross borders, but to use that experience and the knowledge gained to build those crossings permanently. Yes I do. I feel like it's a necessity at times because I want their treatment to be holistic and not to the traditional healers and what the traditional healers are giving them. And I want the tradi tional healers to know what the Western medicine is giving them. If they're getting chemo, if they're getting radiation right now, and I need so, it's a lot of education on both sides. So, I feel like I'm walking in two worlds all the time. I am a bridge. And that's part of my job as a Navigator as well. (transcript, 4 00014 20 personal interviews, 2012 13) Importantly the Native traditional medicine can contribute: [urban city] and who went home to home areas and had ceremonies and eventually came back, were re examined

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303 types of salves, different types of poultices, whether it was for burns from radiation or dealing with lymphoma, which is when you get the swelling in your arm, and so by them sharing their h our survivors and in the community about alternate ways has been shared with us or we connect people with sources where they can go and perhaps access more directly other information. (transcript, 4 00029, personal interviews, 2012 13) The creator has given us medicine. That's how our medicine is made made through plants and it's made through insects. It's made through various forms that already ex ist, so I think that there is a lot of medicine that western medicine has not even discovered that is still carried on through many of our elders, many of our medicine men. I think it's important to know that the academi c world has not recognized [pause] has not recognized the insights the values, the contributions that N ative tribes, Indigenous tribes throughout the world, but especiall y in the Americas, [the] total nation[s] have possessed. There's been a lack of communication, a lack of respect or inve stigation as to the knowledge that is out there. (transcript, 4 00014 20 personal interviews, 2012 13) Often building bridges required hard work and knowledge, persistence, and ultimately, the establishment of trust. Navigator s have become experts at est ablishing trust where there was none before: in their yard and knock on that door and be asked to come in. I walked up in that yard many times, many times, times when the door would not even open, times when the curtains ar or notice it coming down the drive. But, sooner or later, if I show up where they are, as many times as it (transcript, 4 00028, personal interviews, 2012 13) Building bridges involves facilitating dialog between Native ways of knowing and Western medicine, as in this example about the nature of healthcare and restrictions that limit Native approaches that can contribute to healing: We had an incident at the hospital where someone wanted to bring in something spiritual. think it was maybe even sweet grass that they wanted to burn or some sage that they wanted to burn, but it was a conflict in the hospital. How do you do that? You know what I mean? I know the importan ce of the sage. I do. I mean, I burn it almost daily, so I get the spirit, but on the other hand, I know what it is to be in the urban medical, you know, in the hospital, the difference rough, I think we were able to actually negotiate a very short smudge, and that was it. But, he at least got what he wanted. He some peace. We were able to do that (transcript, 4 00025 personal interviews, 2012 13)

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304 The bridge making example above involves Western medical practice within a hospital. The example of bridge building b elow involves change and bridge making that can happen using an indivi dual Native Patient Navigators and Western medical practitioners: I do talk to them, you know, as just when it permits, to a patient for, you know, if they're doing traditional medicine. I do talk about, you know, with the doctors, oncologists, what, I guess what it includes and everything like that. That the doctor will know exactly the type of treatment plan too. Because we've had patient s fully want to do traditional and just a little bit of Western medicine if that was going to help is what the pat ient stated, but the doctor totally worked out a treatment plan so that the patient could do both. (transcript, 4 00035 personal interviews, 2012 13) Just kind of really by understanding both medicines and how they work. I've had patient s that decided tha t I don't I'd rather not do any more chemo. I'd rather just try this [Native] traditional medicine. I explain the difference to them, what certain Indian medicine will do and what it won't do, as compared to chemo. But I never, ever push Western medici ne on any of my patient s if that's not what they want. I always kind of leave that open to them to decide. (transcript, 4 00035, personal interviews, 2012 13) Yes. Exactly. I mean like I said, we're the liaison between the patient and you know, the physici an. If the physician is just looking for these lifesaving measures and doctors point of view, they want to do everything they can when they can, but sometimes the patient may not want that. I mean it's having the conversation with that patient and advocati ng for you know, how they want to be treated. How they want their care of prime to be and involving them in that process. If they want a spiritual healer to be involved and some of these things, speaking with the physician and making sure that the physicia n understand that so the patient can do what they believe they need to do for themselves safely and not har m with the physicians care plan (transcript, 4 00042, 43 personal interviews, 2012 13) I think people a lot of people that I know do it on their own They go back and forth. So they seek traditional services back home, wherever that may be. And then when they need medical services that IHS can't provide then they try to bridge them together. (transcript, 4 00036 personal interviews, 2012 13) If someon e is going to take some type of vitamin, or using some type of oils or if they're going to use yoga or some type of meditation or, or massage, again, acupuncture. All that stuff is, b ut, again informing the doctors of what you're participating in. Due to w hat's going on with their body, it may not be ad visable to do that at this time (transcript, 4 00053, personal interviews, 2012 13) Yeah. I mean like I said I support the patient in whatever they decide so if they, while there using their traditional medic ine as well as western medicine, I support both as long as they are making b oth aware. Both providers aware ( transcript, 4 00039 personal interviews, 2012 13) The building of bridges was an important part of the practice of Native patient n avigation, as in dicated below: Western medicine and the traditional medicine. And I personally believe that the two will work together. (transcript, 4 00026 personal interviews 2012 13)

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305 patient s who were in patient to burn sage in the hospital room. They would use some rubber gloves to cover up the smoke detector. So, I think that they're taking steps to be more sensitive and to realize that we still do have our spirituality and it's very much alive and it's strong (transcript, 4 00044, 45, 46, personal interviews, 2012 13) Bridges built were a lso a cause for reflection for Navigator s on the overall practice of Native patient n avigation, Western medicine and outcomes for AI/AN healthcare. I was always brought up that those two really don't mix together. You know Western medicine and Traditional medicine, however, I have several patient s who are actually mixing both of them now, and their prognosis to me been a lot better by mixing those medicines compared to just staying strictly on chemo or just nothing but Indian medicine. I actually have a lot of patient s that their prognosis is a lot better now, which I find ve ry interesting. (transcript, 4 00035, personal interviews, 2012 13) them, which had already given them some insight that this might, could work. But, even today, t I also follow up with my cultural (transcript, 4 00028, personal interviews, 2012 13) Notably, bridge making is also vitally important because Native traditional medicine incorporates sp iritual elements that, without Navigator s leading a dialogue, leave a critical gap on with both sides: [I] always let them know that [that no] matter how you pray, it doesn't or who y ou pray to, you're praying. People just want to know. They were afraid that if they were going to the sweat, that and ta king something from there that is it going to work because they were taking chemo. And they just needed to hear from somebody that w ill work with you. You don't have to stop doing this in order to go throug h your treatments. I think at I've heard people say, they don't know how to ask. So, they would ask us and then we would ask the patient So, we were the go to person For both people, the patient and the provider. (transcript, 4 00044, 45, 46, personal interviews, 2012 13) Western and Native traditional medicine can work together. Garrett (1991) notes the unique system of health service practiced by the Cherokee Native American Indian hospital in North Carolina, which sees the individual choice of the patient as paramount with regard to Native traditional medicine and Western medicine: Anybody in the hospital who wanted to go to a medicine man, or have a medicine man, visit them could do so, as long as the mode of treatment didn't interfere with the treatment modality used by the clinicians in the hospital. And if it did, then the patient could sign a waiver, or release themselves from the care of the hospital physicians. That way they could make a clear choice about which medicine pathway they wanted to follow. That was the whole idea. There was no

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306 judgment made about the way they were going. It gave the choice back to them, so that they could become a part of their own ca re (Garrett, 1991, p. 171 ) Native Patient Navigators Western medicine or Native traditional medicine Therefore, when helping their clients with decisions concerning their personal cancer jou rneys, while at the same time honoring t heir clients as Native people, Navigator s are willing to help make a permanent bridge for dialo gue on both sides. This bridge making honors both Western and Native Traditional w orldviews, the client, and the Navigat or s as well. around and people share their stories. We have at least two of our Native surviv ors who were diagnosed here in [urban city] and who went home to ho me areas and had ceremonies and eventually came back, were re survivors use different types of teas, different types of salves, different types of poultices, whether it was for burns from radiati on or dealing with lymphoma, which is when you get the swelling in your arm, and so by them sharing their experiences, it kind of opens each of them up to another in what we do is share information that has been shared with us or we connect people with sources where they can go and perhaps access more directly other info rmation (transcript, 4 00029 personal interviews, 2012 13) The way I see that is that, Native Americans intertribally. We have grown up and been taught by our parents and our grandparents to really respect our elders and the medicine that they have and o ur medicine women and men who carry on the healing that was given to them by the creator. Many of it is given through prayer and suffering so the medicine that they give us is passed on orally, is very much respected and so it's not well written. It is ve ry much carried on through the clans and the people that are re cognized within our respective Nations The reason being, ironically so, is that people came to this country seeking religious freedom. But, we did not get American Indians, Alaska Native, Fi rst people, Indigenous people of North America, did not get their religious freedom until 1978. And then it had to be rewritten because it was exclusionary on government policy. The amendment was done in 1993 and that's a shame that the original people did not get religious freedom. And the religious freedom is very much connected to traditional medicine because our traditional medicine comes from the creator. It comes through prayer. And it's very much respected and it can't be taken away. That's why it's carried on from generation to generation orally. That's a preciousness of what the creator gave us is medicine to cure our bodies and to heal our mind, to heal our spirit. It's very sacred to us. It's done through the weekly ceremonies, Peyote, the Blessin g Way, the Beauty Way, the Kivas, the Sun Dance, and many other ceremonies. They are very sacred to us. I think as a Native person that's a tremendous amount of responsibility and knowledge that we carry just as being a Native Navigator To be the bridge b etween Traditional Medicine and Western medicine. (transcript, 4 00014 20, personal interviews, 2012 13).

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307 These bridges are the accumulation of the Native Patient Navigators work and philosoph y; in essence, who are the Navigator s This is described and summarized in the final quote below: I have clans, I have bands, I have these beliefs, and so you understand when somebody else starts we all have those different aspects in o ur own tribes and so it kind of and it to a non Native Patient Navigator so that they could understand why they ma y be making a decision or why they might need that Navigator things the non Native Patient Navigator might not understand the importance of, or might need to be taught more about. It is real hard for a patient have to also teach the Navigator so you hope that the Navigator s the Native Patient Navigator then can also be the bridge or the connection point to the healthcare provider because, more often than not, for a Native person, it is not a Native provider. (transcript, 4 00029 personal interviews, 2012 13) Summary and Chapter Conclusion Native Patient Navigato rs are Native and Navigator s The uniqueness of these two concepts run deep ly within the consciousness and their characteristic roles. Native people know of the depth of consciousness of these simple facts, even though, at times, in the modern world, it may seem like a contradiction. Shawn Wilson, a leader in the adoption of Indigenous methodologies, in his presentation in 2013, remarked on the deception of depth and perception with regards to Native culture in his conference presentation to the American Indigenous Research Association (AIRA). Wilson referenced Native culture as being like an island. With hat one sees on the top of the water is only the visible part of the island underneath the water and what is in visible to the observer, is a culture, a way (Wilson, S. Conference presentation, AIRA October 11, 2013). A similar analogy would be of only seeing the tip of an iceberg with the most expansive part of the iceberg underneath

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308 the water. Thus, the island underneath is the inherent complexity and astute perception of Native culture that Native Patient Navigators bring to their work. Their unique attributes and strengths may not be visible to others, but these features are apparent to their work of patient navigation and education for Native people Summary of Native Patient Navigators Chapter findings and contributions can be summarized in the followi ng: 1. Native Patient Navigators identity: A Native Patient Navigators identity emerged from the data. Native Patient Navigators have a unique identity that exists among themselves and is inclusive of their tribal identity. Native Patient Navigators express ed this characteristic identity both with each other with their own group membership and with how they viewed themselves in the context of the larger social world. Through this identity, which involves a mix of Native, community servant and pro fessional realms, Navigator s expressed their Navigator s frequ ently drew upon Native ways of k nowing and being self determination, and intertribal understandings that support and ground the Native Patient Navigators domain and practice. The author suggests it is safe to say that the client would know they were working with a Native Patient Navigators 2. Native Patient Navigators community of practice : Native Patient Navigators engage in a community with a shared practice. Navigator s organize themselves around a specific area of knowledge and activity.

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309 Through this shared practice and in the process of sharing in joint enterprise, mutual engagement and shared repertoire, Naviga tor s have developed characteristic values, views, and ways of accomplishing goals. Within this practice, Navigator s have also developed ways of sharing information and knowledge. Identity as participants within the group plays a chief role within this pr actice; participants situate themselves within the group and understand power in relation to the larger social order. 3. Crossing Borders: Native Patient Navigators cross borders between n on Nat ive and Native worlds. Native Patient Navigators act as skill ful border crossers between Western and Native worldviews. Navigator s are interpreters among two distinct outlooks and ways of viewing the world. Add itionally, as border crossers, Navigator s work as mediators, translators and advocates for understanding across many areas ongoing stigma and historical mistrust among Natives with regard to Western institutions. Navigator s use their roles as border crossers to inform individual and collective choices of those they guide, using both Native and community perspectives as well as their knowledge of Western medicine. At times, when these differing worlds collide, these issues pose conflict and tension for Navigator s and their commun ities. As part of their role, Navigator s find themselves cont inually negotiating with these negative encounters and pressures. The roles of border crossers then become those of bridge builders in order to addr ess reconciliation between

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310 the Navigator s clients and community; utilizing discussion, prayer, ceremony an being. Typically, through shared company, prayer, follow up visits and tangibles such as traditional and Western medicines, foods and ceremony; r econciliation is reached. The emphas is on humility allows the client and community to make wise and best choices for the client. The role as border crosser, adds to overall reconciliation between Western medicine and American Indian and Alaska Native (AI/AN) people and communities. Navigat or s negotiate the conflicts and tensions as part of this role. 4. Making Bridges -Forming a Permanent Bridge for the Equal Sharing of Cancer Treatment Options using Western medicine and Native traditional medicine for American Indian and Alaska Natives: Nav igator s also act as bridges between Western medicine and Native traditional medicine Using this bridge, a permanent and lasting c onduit can be facilitated with Navigator s with regards to Western medicine and Native traditional medicine uses within a clie Navigator s expressed hope that the two approaches would eventually be part of the overall prescription for Native people facing cancer. In their view, the two approaches could either work together or could both be equal and viable options depending on the desired self journey of the Nativ e person facing cancer. Bridge making in this regard differs from border crossing where Navigator s visit and act in two worlds (as in the case of Western medicine

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311 and Native traditional medicine ). Bridge making develops a space where the two worlds work together in tandem to bring the vision of the patient to fruition. This research study set out to examine how Native Patient Navigators experience their roles within their AI/AN communities and t he larger society. Native Patient Navigators overcame their challenges and contradictions with Western medicine by negotiation and education. The interpretation and the discussion of findings draw on Native ways of knowing Amerindian circles of learning s ociocultural theory critical race theory and tribal critical race theory The findi ngs suggest the use of Native Patient Navigators as a hybrid of Western and Native rules and content. The findings dra w attention to a unique Native Patient Navigators id entity, a Navigator s community of practice Navigator s as border c rossers, and permanent bridge maker s between Western medicine and Native traditional medicine Native Patient Navigators special skills have contributed to improvement for A I/AN along the cancer continuum. According to the findings, Native Patient Navigators face challenges and contradictions in order to make important contributions to reduce barriers and increase access to health care options for AI/AN. 1. Challenges: At times when these two differing worlds collided, these issues posed conflict and tension for Navigator s and their commu nities. As part of their role, Navigator s found themselves continually negotiating with these negative encounters and pressures. Racism and t he need to confront it as part of thei r role was important to Native Patient Navigators to the point that they have acted as shields and assumed the role of

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312 protectors of AI/AN people. These roles as border crossers, therefore added to the overall reconc iliation among the Western medicine, AI/AN communities and clients. 2. Contradictions: Traditional Native treatment looks for balance and harmony. Native treatment is holistic and is collective in approach. In contrast, Western medicine looks for eradica tion of disease and illness in the patient Moreover, from a Western paradigm the focus is on individual treatment, sc ientism and authority. Native Patient Navigators direct Native and Western treatment to look at disease and illness from another lens. 3. Contributions: Navigator s have contributed to make a permanent and lasting conduit th at can be facilitated with the assistance with regards to Western medicine and Native traditional medicine uses within a

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313 CHAPTE R V IMPLICATIONS AND CONCLUSION And while I stood there I saw more than I can tell and I understood more than I saw; for I was seeing in a sacred manner the shapes of all things in the spirit, and the shape of all shapes as they must live together like one being. Black Elk The purpose of this study was to explore t he lived experiences of Native Patient Navigators (Native Navigator s ). Community acceptable and culturally tailored interventions are necessary to address the cancer incidence, mortality and ov erall cancer burden that the American Indian and Alaska Native (AI/AN) population co ntinues to experience. Native Patient Navigators offer an innovative and culturally responsive intervention to addres s the increasing affliction caused by cancer in the AI /AN community. The cancer burden among Native American (NA) communities continues to rise despite efforts to decrease this trend (Cobb, Wingo & Edwards 2008 ). Changes in AI/AN life styles, which today include urban migration, increases in obesity and dia betes, alo ng with the high use of tobacco; affect cancer incidence a nd mortality. New data that were previous ly masked due to misclassification and other issues reveal an increased canc er burden for AI/AN communities. T his condition, along w ith the fra gmentation of health care and speci fically cancer care, contribute to the increased cancer burden for AI/AN populations (Kaur, Burhansstipanov & Krebs, 2013). This burden includes the numerous ways a cancer diagnosis can affect an individual and h is/h er f amily, such as the loss of a patient appointments at healthcare facilities and unexpected transitions, e.g., the necessity for family members to move home to become caregivers (Eschiti, Burhansstipanov &

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314 Watanabe Galloway, 2012). Disparities in cancer mortality and incidence, along with the ever growing cancer burden, require interventions to help increase access of AI/AN patient s to prevention and treatment services to lower the cance r burden (Eschiti, Burhansstipanov & Watanabe Galloway, 2012). Patient Navigator s with their education and navigation roles offer one option for mitigating these burdens through increased cancer screening and other services. H owever, their success wi th specific cultural groups depends on culturally appropriate, as well as innovative approaches (Edwards et al., 2010). Native Patient Navigators provide an important key for AI/AN health improvement; patient n avigation approaches found successful in AI/A N communities may help to provide the foundation for culturally relevant and evidence based models in the future (Eschiti, Burhansstipanov & Watanabe Galloway, 2012). There is growing evidence of the positive effect of Native Patient Navigators on Nativ e health. Such Native N avigation has a supported success record for navigation in areas such as screening (Burhansstipanov, 2000; Dignan et al., 2005; English et al., 2006 ), recruitment (Burhansstipanov, 2000), rescreening (Burhansstipanov et al., 2010), use of facilitators to screening (Burhansstipanov et al. 1998), and perceived barriers (Burhansstipano v, et al., 1998). Furthermore, Native Patient Navigators have been shown to increase cervical cancer tests and P ap tests, as well as to assist in increa sing comfort in discussing cervical cancer awareness and the sensitive issues surrounding cancer (Burhansstipanov, 2010; Christopher, Watts, McCormick & Young, 2008). Interventions for cancer mortality are increasingly important for the AI/AN population Cancer has emerged as a leading major cause of premature death among

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31 5 American Indian and Alaska Native (AI/AN) populations (Health, United States, 2011 and US Department of Health and Human Services.) Special Feature on Socioeconomic Status and Health H yattsville, MD: N ation al Center for Health Statistics; 2012 AI/AN cancer incidence rates vary among AI/AN populations and are also found to be different from non Hispanic Whites (NHWs) when these populations are compared in the same geographic region (Wig gins et al., 2008; Haverkamp et al., 2008). Regional differences occur for most cancer sites for AI populations with AI populations residing in the Northern and Southern Plains having the highest incidence and mortality when compared to AIs living elsewh ere in the US (Haverkamp et al., 2008; IHS, 2008). Compared to all other ethnic/minorit y groups, AIs have the poorest five year relative survival ( N ation al Cancer Institute, NCI, Cancer Trends Progress R eport 2011 2012). As well, excluding American India n (AI) women, short term trends in death rates for all cancers combined decreased for all racial/ethnic groups and bo th genders between 1997 2006 (Edwards et al., 2010). disparities and inequities. Principal among these population health inequalities is that, AI/AN mortality is higher than that of most other Americans. AI/AN die at a higher rates than all other racial /ethnic groups from commonly known diseases and preventable injur ies. For example, AI/AN die at higher rates from diabetes (182% higher), unintentional injuries (138% higher), homicide (83% higher), alcoholism (552% higher) and suicide (74% higher) (IHS Fact Sheet, 2013). Contributing to these negative disease and in jury outcomes is that AI/AN also have less access to quality health care. According to the N ation al Healthcare Disparities

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316 Healthcare Research and Quality, Blacks and AI/AN rec eived worse ca re than Whites across 40% of core indicators. Also, when Blacks and AI/AN were compared with other populations having similar dis parities, this worse care than W hites for Blacks and AI/AN is below levels of care when compared to these other populations. Blacks and AI/AN have lower access to quality care compared to Whites for low income people (80%), for Hispanics (60 %) and for Asians (20%) ( N ation al Health Care Disparities Report, Health and Human Services, 2003). Interventions are impor tant to seek solutions and improve accessibility to burden (Eschiti, Burhansstipanov, & Wat anabe Galloway, 2012). Native Patient Navigators lived experiences are imp ortant to understanding their roles as strategic interventionists with regards to cancer in AI/AN communities. However, there i s a lack of research on Native Patient Navigators and their lived experiences. to the understanding of those Native Patient experiences. Specifically, this study focuse d on how this sample of Native Patient Navigators (Native Navigator s ) experiences and understa nds health and cancer screening. As well, how does th is par ticular sample of Native Patient Navigators (Native Navigator s) see issues of stigma and historical mistrust around these issues, in their work, AI/AN communities, and own lives? Conclusions and Discussion of Findings Facets of identity. Native Patient Nav igators incorporate three facets of identity, that of being Native, a community servant, as well as a professional identity. Native

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317 tribal understandings of being Native. The commu nity servant facet of Navigator s identity pulls on Native ways of knowing, being and learning as part of an AI/AN community. These teachings are learned within the soci o cultural and Amerindian circles of learning contexts, in Native communities and ways o f life. Learning as wel l occurs in association with a professional identity, also within the background of Amerindian circles of learning both for AI/AN people and the Navigator s themselv es. The third facet of Native Patient Navigators ident ity is a professional one, in which individuals are continuum. Native patient n avigators cancer screening. Native Patient N avigators have a deep and insightful understanding of health and cancer screening in AI/AN communities. This understanding comes from their very personal and intimate experience with cancer and its effects wit hin their communities. Native Patient Navigat ors experience first hand the devastating effects of cancer incidence, mortality and the overall cancer burden on AI/AN individuals, thei r extended families and tribal Nations Native Patient Navigators use their unique identity in relation to those expe riences and understandings. It is through this identity, which involves a mix of Native, community servant and professional realms, that Navigator s express their representation Navigator s These roles in turn, draw strongly upon Native i ntertribal understandings that support and ground the Native Patient Navigators in their doma in and practice. Within their community of practice Navigator s organize themselves around

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318 these understandings with regard to their specific areas of knowledge a nd activity. Through this community of practice and in the process of involvement in joint enterprise, mutual e ngagement and shared repertoire; Navigator s develop their professional practice regarding health and cancer screening. Importantly, this pract ice is branded with their own characteristic values, views, and ways of accomplishing their goals; while sharing information and knowledge both among themselves and with the outsid e world. As well, identity as community of practice participants is exceedi ngly important and within the group identity plays a chief role as participants situate themselves both within and in relation to the larger social order. As border crossers, Navigator s work as mediators, advocates, educators and translators between Wes tern medicine and Native people. Navigator s work to increase regard to Western institutions and the larger society so as to mitigate that mistrust and stigma in the inter est of access to Western healthcare for their AI/AN communities. Navigator s are critical listeners educators, and translators who decipher two distinct outlooks and ways of viewing the world. It is through these two lenses using both Native and Weste rn medicine perspectives, that Navigator s use their role as border crossers to inform individual and collective choices of those they guide in understanding. Tribal critical race theory (Brayboy, 2005) in its application towards public health explores the ongoing legacy of imperial ideology, racism, and on going colonization on AI/AN population health. Included in this legacy is the seizure of AI/AN lands, the ignorance and violation of AI/AN treaty rights, the forceful overt and hidden efforts to

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319 assimil ate AI/AN, and the ongoing destruction of their knowledge systems, language, religious beliefs, and practices amounting to cultural genocide ( Brayboy, 2005 ) Significantly, with regard to AI/AN health this legacy also includes the privileging of Western medicine and it s tenets over Native traditional medicine and by default, invalidating Native philosophy and worldview. Typically, for Western colonized countries, marginalized individuals are forced to a dopt the colonizers perspectives within every aspect of their lives including Western rules, organizations, norms and education (Kirmayer, Brass, & Tait, 2000). Native Patient Navigators look ing through their critical lens, examine colonialism and imp erialism ideology directly and address their work within the limitations of Euro Western racism and discrimination. Colonialism, in this regard, is defined as Europe an thought, knowledge and power structures that dominate U.S. society and thus, Western p ublic health institutions and systems (Brayboy, 2005). It is wi thin these considerations that Navigator s act as bridges between Western medicine and Nat ive traditional medicine. Their bridging help s to form a permanent cond uit between the two worldviews, the bridging which is facilitated with Native Patient Navigators Cent ral to Native Patient Navigators perceptiveness is a need for deep understandings of Native ways of knowing talking, and holistic perceptions of health and healing. Native Patient Navigators incorporate Native ways of knowing and being such as respect, reciprocity oral tradition, kinship, spirituality, communication norms, and the meaning of community into their perceptions and un derstandings of the roles they play. Navigator s incorporate their Native worldviews within their professional practice,

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320 respecting spaces for traditional values and spirituality. T raditional Native values, according to Garrett & Garrett (1994), consist o f sharing, cooperating being, using a time orientation toward living in the present, living in harmony with nature, not interfering as well as a preference for the explanation of natural phenomena according to the supernatural, the importance of the grou p and extended family, along with a deep respect for elders ( See also DuBray, 1985; Pedigo, 1983; Sanders, 1987; Trimble & LaFromboise, 1985) Communication and how we communicate remains an essential part of Native ways of knowing and being The impac t of being a good listener and by transference, the meaning of t he role of listener for Native Patient Navigators is reflected upon by Phillip Duran, MS, who states the following about the priority of stories within a tribal content: The stories are part skills, transmit the history of a tribe, teach moral lessons and respect, clarify concepts, and more. (Duran, P, 2013, p. xxi) a pproach toward health. Physical health from this Native perspective does not exist in isolation from the spiritual, mental and emotional aspects of an individual. As well, instead of a Euro Western perspective that focuses on an adversarial rel ationship with disease, Native Patient Navigators using a Native worldview, conversely see the relationship with health and wellness as a return to balance and harmony using a traditional perspective. And as always, at the heart of Native Patient Navigators work i the people ; assisting Native communities and tribal Nations and making a difference in the health of AI/AN communities for seven generations to come. Giving back is part of the self fulfillment on this journey to being individual ly a whole human being The

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321 this personal journey and being According to Garrett & Garrett (1993), Native American Indian culture, for many individuals emphasizes b eing as opposed to doing This concept of being according to the authors means the purpose in life is enough just to be and develop the inner self. Navigator s in honoring Native traditional values, do not only help the patient Within their profes s family as well. If a Native Patient Navigators were referred to a family because of a diagnosis, the Navigator s would try to help not only the patient but a lso their support system. The s work w as done when the family was finished being helped. Thus, a cancer diagnosis does not end with the individual but is shared with the family. Navigator s as border crossers negotiate between these Native traditional values and their direct conflict with mainstream values ( i e., European Western values ) These Euro W estern values tend to emphasize doing individualism, the nuclear family, saving, domination, competition, aggression, winning as much as possible, a time orientation toward living for the fut ure, a preference for scientific explanations of everything, "clock ultimate mastery over nature, as well as the reverence and importance of youth (DuBray, 1985; Sanders, 1987). Native traditional values differ greatly from Euro Western percep tions, but the two worlds can be bridged by those who work in both worlds and are knowledgeable of both paradigms In these roles, using their knowledge and keen perc eptions, Native Patient Navigators help AI/AN people and communities make sense of Wester n medicine

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322 and conversely, help Western medicine make sense of AI/AN self determinant decisions about when, where and how they wish to die. Native Patient Navigators historical mistrust among and ongoin g racism toward AI/AN people. According to tribal critical race theory (Brayboy, 2005), colonization and racism are endemic in Western society and public institutions. Colonization at its root expressly pushes the agenda of European American thought, kno wledge, and power structures. This agenda dominates present day society in the United States. Because of this, colonization and racism have discrimination are often unseen except to those individuals subjected to its effects. Within this paradigm, other cultural views are dismissed and an on going effort is made to replace them with the dominant discourse (Brayboy, 2005). Navigator s acknowledge and intimately unde rstand the racism Native people have Navigator s are empathetic when dealing with their clients on these issues. However, Navigator s also know that there is benefit to overcoming and mitigatin g the fear and mistrust; by the mutual building of trust on both sides through presence, respect, listeni ng, translation, and education. Their attempt to address historical trauma and racism through their often quiet style, using their spheres of influence can cause reconciliation in the areas of Western medicine and Native communities. This is accomplished through the many facets of their prof essional roles resulting in on going education and navigation. Navigation: a pragmatic approach of helping AI/AN within the experience of colonization. T hese findings p oint to the ability for Native Patient Navigators to act

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323 practically within their local spheres of influence and profession, to help and care for their AI/AN communities using a critical lens within the confines of the colonial experience. The number one priority of many AI/AN people, including Native Patient Navigators is to help the people The People in this regard, me ans people of their own tribal n ation and Native people in general. The find ings of this study suggest a pra gmatic approach used by Native Navigator s to have compassion and empathy for the people. Being empathetic in this sense does not mean seeing the person as pitiful, beyond help or in need of charity. Empathy as I have been taught, from a Native point of reference, refers to is havin g understanding and nurturing to move beyond the current situation to have heart and very deep compassion for the people, for their experi As a Native way of helping, Native patient n avigation is a reach out of a hand for those most downtrodden and discriminated against. Native women (and men) here a re showing compassion and care for the political, social and historical experience of AI/AN people and for thei r present state in a Western society riddled with racism and discrimination that is often invisible to others. Within their roles as practitioners, as border crossers, as bridge makers and at times, protective shie lds against oppression, Native Patient Na vigators serve ultimately with this deep and heartfelt compassion for the people. As one Native Patient Navigators succinctly expressed within his/ her interviews, although s / he would hope otherwise, s / he knew what Indian people go through and what it was like within these racist institutions, and s / like a person (transcript, 4 000G).

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324 Treading dangerous territor y: e motional and spiritual toll of n avigator s roles. There is an e motional and spiritual toll to Navigator s they tread dangerous (to them) territory. Their roles utilize important elements such as discussion, prayer, ceremony and family members as personal advocates well being; u sing the methods of shared company, prayer and follow up visits as well as tangibles such as traditional and Western medicines, foods and ceremony, reconciliation i s reached. However, Navigator s roles of professional practice, of border crossin g and of bridge building in order to address reconciliation between the AI/AN clients, tribal communities and Western medicine can be problematic. Border crossing is not without its personal costs. For example, it is notab le that Native Patient Navigato rs were in tune with their these Navigator s seldom talked about their own negative experiences within their practice and roles. A lack of emphasis on their own experiences is probably rooted in the Native traditional core value of humility, as well as modesty; from a Native perspective, it is not of good character to t t & Garrett 1994). The Native Patient s emphasis on humility and their willin gness to examine critically the Western medicine, despite personal sacrifice, allows community sensitive and culturally appropriate wise and best choices for the client However, one wonders if this lack of disclosure, along with the negative experiences t hat Native Patient Navigators go through at the hands of racist Western institutions and in other areas, may ultimately result in an emotional and spiritual toll over time.

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325 Yet, at the same time, Native Navigator (to them) territory fits with their other important roles as community servants. Thus, this border crossing can b e individually treacherous, but simultaneously, it also permits Native Navigator s to make a contribution to Western medicine. The distancing connection to an extended community for Native Patient Navigators because it is not only essential for their professional life, but for the community of practice It is within this community of practice that Native Navigator s have built together community connections with distancing which is required in their resulting professional life. Giving back is part of the self fulfillment on this journey to being in dividually a whole human being therefore, is a commitment to this personal journey and being An additional toll on Native Patient Navigators for their role which ten ds to be horre ndous. This is because Native Patient Navigators jobs are typically grant funded and the people are frequently hired in two year cycles. One contempl ates the toll on these Native Navigator s to be without emp loyment when the grant ends, in w hich case the y are forced to find new or gap employment with the ending of each grant cycle. Similarly, one needs to consider the toll on important bridge building relationships in AI/AN communities due to on and off again funding because of grant cycles ending, or the end of community programs due to the withdraw al of federal funding (for example, in the form of targeting and pulling AI/AN funding due to federal

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326 sequestering) and how these actions undermine the building of trust in the AI/ AN communities that the Native Patient Navigators are struggling to work with and serve. One also wonders what these short term grant cycles will do to undermine health and health research in AI/AN popula tions in general. As related to this study, one of the primary reasons for not having more representation of Native Patient Navigators from the Northwest is that the grant cy cle had ended and these Native Patient Navigators had dispersed and gone on to different jobs (although as noted in t his study, the role of Nati ve Patient Navigators is a permanent, if unpaid, one within AI/AN communities), making it difficult to track them and to bring their important voices into this research. F inally, one also contemplates whether or not the ever present reality of AI/AN mor tality associated with cancer in AI/AN communities does not take an emotional and spiritual toll or cause secondary trauma on individual Native Patient Navigators over time. Their work is not only about pay, but the continuance of life and the restoration of health for AI/AN individuals and communities Individual self determination of the cancer journey within the collective. One of the core differences between a Native worldview and Western medicine is that of determ ination with regard to making decisions regarding healing and in this case, the path of their cancer journey. From a Native worldview, a return to health and harmony does not always align with the Western views of e radicating a disease (Duran, E. 20 06) Native Patient Navigators support the ultimate decision of an individual and their chosen journey within their collectivist c ulture. As one Native Navigator s related to me, when s /he gets a new client, s/he has a meeting with all the interested parties, p roviders and all the peo ple the person wants to be present, so as to

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327 journey can include Native traditional medicine Western medicine or a combination. From that poin t forward, the Native Patient Navigators honors that vision for their Implications of the Findings For cancer education. Because the success of patient navigation within numerous specific cultural groups often depends on if those appro aches are innovative and considered culturally appropriate (Edwards et al., 2010), Native patient n avigation is critical for cancer education within AI/AN populations. There is a pre ssing need for a knowledgeable Navigator s from a local community who is f amiliar with and a member of local AI/ AN customs, culture, and health care systems accessed by AI/AN in their respective comm unities (Harjo, Burhansstipanov, & Lindstrom, 2014). As found in this study, Native Patient Navigators play important roles in tran slating and e ducating through their roles as border crossers and bridge builders for cancer education for AI/AN communities at all points along the cancer continuum. Furthermore, patient N avigation appro aches are the future. Patient N avigation programs found successful today in AI/AN communities may help to provide the foundation for culturally relevant and evidence based models in the upcoming future (Eschiti, Burhansstipanov & Watanabe Galloway, 2012). Using their education and navigation within a c ommunity sensitive, culturall y appropriate approach, Native Patient Navigators and other approaches based on their cancer education model (and tailored to their own communities), may help address the cancer incidence, mortality and the overall burden in ot her cultural groups

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328 Cancer education, to be effective needs to be customized to the group receiving the information. Although, much has been written concerning AI/AN traditional values, practices, norms and communication, not all that exists within a cu lture can be written about and recorded, or even verbalized. Shawn Wilson speaks of visible culture, i.e., only the tip of the island and what others see, as visible culture. However, underneath the lake is a whole part of the island (and the main part o visible (Wilson Shawn American Indigenous Research Association ( AIRA ) Conference presentation, October 11, 2013). It is this underlying part of the isl and and of culture that Native Patient Navigators can tap into to m ake their cancer education effective. For AI/AN people. Native Patient Navigators are invaluable in AI/AN communities for successful interventions addressing AI/AN cancer incidence, mortality and overall cancer burden. Until such time as Western medic ine can change in order to research and accommodate alternative worldviews (and further adopt associated strategies within their overall paradigms) ; the community of practice, the roles of border crosse rs and bridge makers of Native Patient Navigators are irreplaceable. With regard to Western medicine, this modification or changing of paradigm will not likely happen in the near future. For w estern medicine. Conceivably, the most importan t part of the role that Native Patient Navigators play is their abili ty to translate, show respect and build bridges that are community appropriate and culturally respectful. The present movement for the profe ssionalization of the field of Patient Navigator s with increasing requirements for formal education will not addres s these essential skills within AI/AN communities. Although standardization in any professional field is a requirement, this should not

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329 overshadow what is critically and essentially needed with Native people. Emphasis is needed in the AI/AN community to retain and focus on tailoring navigation for the community. Training in culturally responsive health care and health education must be a requirement, but inherited Native knowledge and the disposition to live in two cultural worlds are far more culturally relevant. For n avigator s in general. A central part of navigation is the understanding of the potential contribution of Western medicine to individuals who do not have or who resist access to the public health system. However, an equally and more esse ntial part of addressing health issues in AI/AN communities is knowing the clients and communities deeply in order to be able to help others to cross borders and build bridges. For th e study p articipants and Native Patient N avigators The value of Nati ve Patient s work should be acknowledged and the lessons learned from their work incorporated into the l arger system. For individual Navigator s their community of practice should be supported so it can serve to be a support for them and indire ctly the larger outside social wo rld. Navigator s are in need of support because of the personal and emotional toll of this essential, but a systemically tenuous role that they willingly accept on behalf of their communities. This role includes extreme contradictions and the constant dealing with negative forces and emotions, and thus, they need support from those who best understand these on going challenges. It can be e asily argued that these Native Patient Navigators and the work they accomplish in their c ommunities are the best that the communities have to offer. Commonly th ese individuals come from grass root s beginnings and have served as community servants for their Native communitie s their whole careers. Native Patient

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330 Navigators seeing the nee ds in their communities get their training and take action. their work. This is an unfortunate reali ty, because these Navigator s and their hard work have been integra l to the success of programs and grants in AI/AN communities. Native Patient Navigators need to have their work respected and appreciated both locally and nationally. They need to be compensated appropriately as professionals, have employment that lasts, and have their voices and perspectives respected and heard. Lastly, they need to be appreciated for the difficult and important work that they do of For researchers and further r e search. Native Patient Navigators have a unique and potentially consequential role as powe rful border crossers and bridge makers with insider/outsider knowledge. There still exists a lack of research concerning Native Patient Navigators he cancer continuum, from screening to palliative or survivorship roles These aspects, as well as their effects need to be studied further. A future plan of research would be to contin ue to compare groups of Native Patient Navigators and their effect s. Research concerning Native Patient Navigators should be conducted with attention to the three facets of Native Patient Navigators identity, community of practice border crossing and bridge making with a focus on their roles, tasks and specific impacts on stages of the cancer continuum (i.e., screening and early diagnosis, cancer treatment in i tiation and adherence, survivorship, quality of life and end of life decisions). Variables in this inquiry could be IHS regions of country, rural in contrast with ur ban communities including the d iverse needs of where a Native

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331 Patient Navigator works, and differing trib al nation communities with the intention of improving Native Patient Navigator (and non Native) training programs. Specific ally research should ad dr ess several elements. Native Patient Navigators community of practice should be thoro ughly explored with attention to the role of supervisors; th e role of mentoring within the community of practice ; the impact of outside the community of pract ice relationships; the benefit of teams for Navigator s burnout, employment sustainability, interactions with clinical and non clinical staff and their effects also for the purposes of refining training programs and education. Navigator s roles as border c rossers should be investigated, their impact on ifically to analysis of Native Patient Navigators work. This work would provide the basis of a cost b enefit analysis of funding for Navigator s from the cultur al and/or ethno linguistic communities they serve. Such analyses can l ead to sustainable funding for patient n avigation in the future. Importantly, this would also include material, as well as cultural costs for AI/AN in dividuals, communities, tribal Nat ions and Western health systems and institutions. Navigator s roles within the content of bridging Western medicine and Native traditional medicine should be explored and used for training both Western medicine providers and tribal members to the benefit s and risks of choosing either (or both options) as a choice for cancer treatment. Research is also needed to continue to evaluate quantitatively the contribution in health and health education of Patient Navigator s with pa rticular attention to Native vers us n on Native and non certified versus medically certif ied Navigator s. More research is needed to evaluate the continued movement toward a set, c linical

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332 professionalism of the patient n avigation field and its appropriate future directions. This will hel p answer the questions regarding priorities such as: Where do we really need to go as a field? To what degree do we need universal professionalism or should we allow ind ividual programs to continue ultimately to weigh the advantages and disadvantages of co mmunity versus clinic based Navigator s and appropriate corresponding levels of education for their programs? Likewise, wher e does this professionalism of patient n avigation within the field of cancer still fit with emerging opportunities in the form of hea lth legislation such as the Affordable Care Act ( Obamacare ) ? Does professionalism lead to certification, credentialing or mandating minimal training programs for core competencies? Reflecting on Research in Native Communities In examining research in AI/A N communities, what becomes immediately apparent are the variety of hazards and genuinely negative effects to Native people and their cultures. Researchers have considered AI/AN people and their cultures objects of study for generations; as persons to be defined exclusively and distinctively from the perspectives of others rather than their own (Chester, Robin, Koss, Lopez & Goldman, 1994). Researchers have exploited Native people by extracting information and knowledge. This exploitation has caused irr evocable harm and damage and given researchers academic degrees, professional advancement and status while giving nothing back to Native communities and their people (Zinn, 1979). In the report, Our Voices, Our Vision: American Indians Speak Out for Educa tional Excellence (College Board and

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333 American Indian Science and Engineering Society (AISES) 1989). A cau tionary note goes out for the need to protect Native communities: Just as the exploitation of American Indian land and resources is of value to corpo rate America, research and publishing is valuable to non Indian scholars. As a result of racism, greed, and distorted perceptions of Native realities, Indian culture as an economic commodity has been exploited by the dominant society with considerable dam age to Indian people. Tribal people need to safeguard the borders of their cultural domains against research and publishing incursion (p. 6). These negative incursions into AI/AN communities have been destructive resulting in a years of suspicion and a disparaging legacy of mistrust of researchers in AI/AN communities. Researchers have historically, through the years, and repeatedly to this day carried out researc h in Native communities that can be characterized as irrelevant to Native realities The se realities, which are distinct from Western realities stem from Indian lives and experiences. F urthermore, researchers have carried out this resarch without Native people explicit considerations and concerns (Bubar & Jumper Thurman, 2004 ). As well researchers have through dynamics reinforced by history, domination and power, repeatedly tended to re create colonial type and unequal relat ionships (Smith as cited by Kenny, 2006). One needs only to look at the example of the Arizona State University ( ASU) researchers and the Havasupai tribe in 2010, to see a recent example of a powerful institution creating a colonial relationship with all its faades and then exploiting Native people to the point where 41 members of the tribe had their blood improperl y used in the name of research (Mello & Wolf, 2010). Lastly, researchers have arrived at Native communities, carried out their research and then left, frequently without even reporting their findings to Native participants and their communities (Weaver, 1 997). It was within this background that I began my study. While my identity as a Native American gave me insider status, my role as a university researcher also gave me

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334 outsider status. Knowing the potential dangers of research to AI/AN communities a nd not wanting to engage in anything that would endanger the communities in which I live and work, I had a desire not to repeat previous research that had elements of exploitation, but t o conduct a study where Native Patient Navigators were truly considered and heard. This was opposite of having their voices not truly heard because of their marginalization by the agenda of a dominant society (Kenny, 2006). Throughout my study and at the conclusion I realized the increa sing importance of Native patient n avigation most pointedly portrayed in the story of the elder cancer patient who just narrowly missed a second and unnecessary biopsy that could have endangered his health and possibly his life due to his elderly status. What was not po rtrayed in the written transcript was the sound of conc ern and sometimes panic of the s voice as s / he in the oral tradition relayed his/ her story from one Native to another. It was here that I realized my thoughts on the importance of Native pat ient n avigation. Guiding Process and Cultural Assistance I found guidance and direction for these research concerns through the research caveats of Native American Cancer Research Corporation (NACR, 2014), illustrated below, which helped guide my research endeavor, cultural guidance, community sensitivity, and helped my path of approach for this study: The community must directly benefit from participating in community based research ("benefit" includes some type of service or education intervention that i s beyond taking part in a survey). I originally began my study with inquiring about Native American Breast Cancer survivors and their barriers to care. However, there is a significant amount of research

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335 done on this topic. Benefit to the community was essential for my approach. What I found would be more benefit to the AI/AN community were interventions for cancer that were proving effective in addr essing these barriers. Native Patient Navigators and their experience with regard to their success in A I/AN communities was directly applicable, and research on their role would benefit the community. I therefore changed my research focus to reflect the realities of the AI/AN communities that I was in touch with. The research needs to address the community 's health priorities in a culturally respectful manner, w hile at the same time address health research priorities of the funding agency. Throughout my study, gathering and analyzing data in a culturally respectful manner was an important personal priori ty. Interviewing elders using an intrusive ethnographic interviewing technique was not seen as respectful for the individuals from the tribal Nations I began interviewing with in my beginning focus. This view of disrespect may be centered in the importanc e of oral t radition in many Native Nations Taking care to listen with great attention to accuracy in what I was hearing was more important than asking probing questions. According to Herring, (1990) and Richardson, (19 81), in the field of psychology, re statement, silence, restatement and general lead (following the lead of the speaker and their pace of the conversation) tend to be most successful with Native American Indian clients because these methods are found to be the least intrusive to these indiv iduals and therefore allow plenty of room for clarification during interactions. I cho se not to continue on a path that would be seen as not culturally respectful; primarily interviewing AI/AN elders with breast cancer with an intrusive technique ; and

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336 t herefore I changed to interview ing the more bicultural Native Patient Navigators researching and using respectful and sensitive interviewing for my interviews with them. The value of having a community group of advisors includin g elders who are overse eing my work cannot be overemphasized. I was fortunate to have an informal group who advised me all along on my study, including the inappropriateness of my interviewing technique in the beginning of my previous stud the ad vice and guidance of my aunties also served as a way to keep me connected to my priority of doing my work for the people in a culturally respectful and community sensitive way. Applied research in the community must be culturally respectful and invariab ly will include modifications that differ from academic theory. I have continued with the guidance of my group and community to be culturally r espectful. Important to this approac h is to connect with people who are local. To have that on going guidanc e from those who know local tribal culture, customs, mannerisms, as well as the historical, social and political knowledge of the Native community is vital In my future work, this will also be the case. I also am hopeful for the development of Indigenou s research methods and decolonizing research strategies that may address some issues of the disconnect of applied research in AI/AN communities and academic theory. Members of the community based "team" need to be included in leadership roles in every st ep of the research project, including the planning phase through dissemination. I acti views and voices for equal partnership for this study and I plan on disseminating the results in a culturally appropriate and

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337 approac hable manner. I performed numerous member checks in the community throughout my research. AI/AN communities need to be equal partners in research done in their communities. This includes equal leadership, equal compensation and owning of their communities data. It is my hope that I have respectfully honored these research caveats in my work. And although insider/outsider status has been debated for at least 30 years ( La baree, 2002), it is also my hope that I have displayed wha t is described by Ohnuki Tierney, (1984) as heightened or specialized ability to interpret and describe the culture of the group or community I have come in contact with as an insider, thus showing the benefit of insider research. Below I offer, from my p erspective as an insider/outsider, Native American/university researcher, a list of other ideas regarding research in Native communities and with respect to this study: A ban on deficit research in Native American communities: Research needs to be done onl y from a strength perspective with AI/AN populations. Historically, research has always been done from a deficit model that further stigmatizes Native communities. Future research in AI/AN communities needs to be done from the perspective of the many str engths of Native individuals, families and communities. The use of scientifically rigorous Indigenous research m ethodologies and decolonizing strategies for research: A more culturally congruent research model with AI/AN people is essential and the use of Indigenous methodologies for research and inquiry as well as decolonizing strategies. More exploration and research needs to be done in the use of Native traditional medicine for its use in the treatment of cancer and/or the

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338 management of cancer tr eatment symptoms: T his research would include adopting a paradigm where Native worldviews, Native ways of being and knowing are on equal par with Western treatments for individual choices in cancer treatment. Strategies and support for the increa sed r ecruitment of male Native Patient Navigators : Male Native Patient Navigators may be better able to discuss AI/AN gender sensitive cancer topics such as prostate, colon and testicular cancer. These issues and conversations are gender specific in many Nati ve American communities Therefore, r espectful communication in these gendered, medical areas may be best delivered by males, if at all possible. Research needs to be done to target what is the most effecti ve recruitment for male Native Patient Navigators in the field. In addition to these needs for more research to recruit males to honor gender lines in AI/AN, this study suggests the importance of culturally relevant and respectful research in general, for all study participants. Culturally respectful application of Community Based Participatory R esearch: The application of Community Base d Participatory Research (Israel, Shulz, & Parker, 2013) currently has many versions in Native communities. Community Based Participatory Research (CBPR) is frequentl y handled without regard to its true meaning, which when inappropriately applied, is often to advan ce the careers of researchers. Intrinsic to the appropriate and correct application of CBPR is the meaningful and respectful inclusion of AI/AN participants and community

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339 members from the beginning and all stages of the research with an equal percentage of the budget ( a part of the budget which is not token but equitable), dissemination of study results and the owning of the data by the AI/AN community in whi ch the research was conducted. Limitations of the Study The limitations of the study were a small sample size and geographic location. Native Patient Navigators were not representative of the tribal Nations from the Pacific C oast IHS region. Although there were numerous attempts by the researcher to get representation from this part of the country, via email, phone a nd in person to recruit Native Patient Navigators from this geographical area; there was a general lack of repr esentation from this area of the country. The study participants therefore, are a convenience sample from other regions of the country (i e., n ot generalizable to all Native Patient Navigators programs). One of the major reasons for this lack of represen tation was related to problems with short term granting cycles and the termination of a grant, as noted above. Navigator s who could have represented this geographic locale had already served their grant terms, had dispersed and were employed i n other proj ects. An additional limitation of the study and a potential bias of the research was my own insider status. As related above, much has been written on the virtues and drawbacks of having insider status (Brayboy, 2000). I have a Native lens and importa ntly, I have a desire not to want to overstep bounds I was extremely vigilant with this lens and cognizant of this possi ble bias. As a result, I put in place several checks to mitigate this potential bias. For example, I maintained an on going electronic and paper

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340 journal throughout my research process, including while I analyzed my results. I verified the results continuously with on going member checks to substantiate my findings. I also consulted before, d uring and while I was writing my research stu dy consulting with other rese archers who were non Native, critically to examine my own biases in analysis and interpretation. Another bias is sin gle investigator bias, although I attempted to address this in many ways. I invited my advisor, an outside academic writing group and colleagues to review the coding and give feedback throughout the dissertation process, but the rigor for external reviewers was intermittent and single investigator bias may remain. As well, I used a phenomenology approach tha t specifically utilizes the idea of epoche or the inhibition by the researcher previous experience and knowledge and preconceived ideas of how things are for the research, a technique of putting former assumptions aside (Moustaska, 1994). I strove to inte rrogate preconceived ideas, while using my insider knowledge of Native American ways of knowing and being of the world to enhance the depth, breath and meaning of this study. Conclusion A personal reflection : Throughout my study, I have reflected on the many times know. place where Indians go or a place of shared perspectives. Not all of this is talked about, or even openly acknowledged. In some cases, it is even a mystery to thos e experiencing it. It is a shared perspective of those who have experienced colonization, discrimination and racism first hand, though it might be invisible to others. It is a shared perspective of those who have lost aunties (my Aunt Dawn Star), uncles and other elders (my

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341 Grandmother Cornelia, Uncle John and my father Edward) who are not here to tell the stories because of cancer and the on going health disparities and inequities of Native populations and their tribal Nations no a pa nic, to do something that will make a difference now for the people, something to help stop the raging cancer and death in our families, our communities, our Native people. Native Patient Navigators with their inclusive Native identity, professional commu nity of practice, role s as border crossers and bridge makers ; act on this panic to help in AI/AN communities. Native Patient Navigators based on my findings, clearly make a difference based in areas subtle and not: L anguage, listening, non verbal commun ic ation and other areas. Native Patient Navigators and their roles will benefit from dedicated funding. It is f acilitation from people who know and are community sensitive, culturally responsive, who understand oral tradition, and are dedicated to making a difference that has the greatest potential for success in working with AI/AN community members. Through those who know about AI/AN historical trauma, experiences and history of their communities, greater access to healthcare and health for AI/AN people is in the future. Through knowing Native Patient Navigators help AI/AN communities access Western medicine an d support integratio n of its resources with Native ways of knowing and being resulting in the restoration of Native health and well being The world above me is covered in beauty The world below me is covered in beauty The world behind me is covered in beauty The world in front of me is covered in beauty

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342 My voice is finished in beauty It is finished in beauty It is finished in beauty It is finis hed in beauty It is finished in beauty (Navajo Benediction). This project reflected a movement in providing a foundation towards restoring health in American Indian and Alaska Native Nations Th is foundation is consistent to the Seventh Generation as predicted by Native American prophecy, and it is demonstrated by faith, love, charity and hope as shown by the Navajo Benediction.

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389 APPENDIX A. Table: Abbreviation Table Abbreviation Definition ACS American Cancer Society AI American Indian AI/AN American Indian / Alaska Native BIA Bureau of Indian Affairs CBPR Community Based Partic ipatory Research CHSDA Indian Health Service Contrac t Health Service Delivery Area C ounties IHS Indian Health Service NCI NIH NHW TIM Na tion al Cancer Institute Nation al Institutes of Health Non Hispanic White Traditional Indian Medicine

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390 B. Table: E xamples of Advantages and Disadvantages of Where N avigators Work Note. Adapted from Burhansstipanov, L. (2008) Native Sister/Patient Navigation: American Indian/ Alaska Native pdf. Copyright 2008 Native American Cancer Research Corporation Reprinted wi th permission. (http://natamcancer.org/handouts/01 22 08_Navigation.pdf)

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391 C. Figure: Examples of Questions Prepar ed by Native Sister and Family t o Ask the Doctor (The Native Sisters Culturally Relevant N avigator P atient Support) Examples of Cost Issue Q uestions: Do I have to go through Indian Health Services (IHS) "Contracted Health Services" '(CHS) to receive my treatment? I be treated here and have IHS CHS pay for the treatment? If I have to go through IHS CHS and they do not pay travel for my family to accompany me who will be available to provide emotional support during the treatment? May my traditional Native American healer perform a ceremony in the hospital before the surgery? Treatment Options Is lumpectomy an option? If no why not? Will I need radiation therapy?* What are the side effects? Will I need chemotherapy?* What are the side effects? If I have a mastectomy what are my options for breast reconstruction? Will I have to take tamoxifen or some other type of estrogen therapy?* W hat are the side effects? Examples of Recovery Questions: How much help will I need after the surgery? Will I need help bathing? Cooking? Driving? Dressing? With what other things may I need help? What is a I y mph node dissection? How should the arm b e cared for after Iymph nodes have been removed? What is a good way to explain my treatment choices to my family? ( Examples of Questions Prepared by Native Sister and Family To Ask the Doctor (The Native Sisters Culturally Relevant Navigator s P atient S upport cont. ) Examples of Results Questions What stage cancer do I have? What is a good way to explain this to my family? How long will it take to get the results of the pathology report? How likely is my type of cancer to recur? What is a good way to explain this to my family? Are any women in my family now at higher risk for breast cancer? Where are support groups where both my family and I can express our feelings and our sense of loss fear frustration and so on? *doctor may not be able to an swer these questions until after surgery. Note. Adapted from Native American Cancer Education for Survivors: Questions Prepared by Native Sist er and Fam ily To Ask the Doctor, Copyright Native American Research Corporation, 2015, Used with permission, Na tive American Research Corporation W ebsite (2015) available at : http://www.natamcancer.org/page16.html

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392 D. Figure: States and Contrac t Health Service Delivery Area C ounties By Indian Health Service R egion: United States, 2009. *CHSDA Contract Heal Service Delivery Area. Note. Adapted from Espey, D. K., Jim, M. A., Richards, T. B., Begay, C., Haverkamp, D., & Roberts, D. (2014). Methods for improving the quality and completeness of mortality data for American Indians and Alaska Natives. American journal of public health 104(S3), S289.

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393 E. Figure: Study Interview Guide : Interviews Questions for Study Participants: 1. Please tell me about yourself as a Native Navigator s 2. What does it mean to you to be a Native Navigator s ? 3. How do you feel you may be different from a N on Native Navigator s ? 4. In what ways do you feel you help people in your role as a Native Navigator s ? ("l really want to understand what Navigator s do help me understand what Native Nav igator s do?") 5. How has being a Native Navigator s affected or changed your way o f seeing cancer health and cancer screening? 6. How have you helped people bridge the gap between traditional Native Medicine and Western medicine ? 7. Are there other important thing s about being a Navigator s that I ought to know? (What are the things that you think are most important about being a Navigator s ?

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394 F. Table: Native Patient Navigators Identity : Overarching Codes Major Codes, Sub Codes/Second Level Codes, Initial Code s from in person interviews A. Overarching Codes B Major Codes C Sub Codes s econd Level Codes D Initial Codes Identity 1. Identity Native 2. Identity Community Servant 3. Identity Professional I Inclusiveness of Tribal Identity II AI/AN Inter T ribal Community Membership III AI/AN Intertribal Understandings of Serving the community IV Giving back to the People V Commitment to the Seven Generations to come VI Navigator s Professional Identity portrayal i. Tribal N ation Self identified ii. Federal State Clan Family Identified iii. Motivation to do Navigator s Work iv. Pathway to be a Navigator s v Community Norms v i. Community Culture v ii. Perception of Navigator s Professional Identity

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395 G. Table: Patient Navigator s Communit y of Practice List and Examples of Overarching Codes Major Codes Sub Codes/Second Level Codes Initial Codes from in person interviews A Overarching Codes B. Major Codes C S ub Code Second Level Codes D. Initial Codes Communities of Practice 1. Joint E nterprise Shared Domain of Interest 2. Mutual Engagement 3. Shared Repertoire I. Professional II. Navigator s understandings and Collective goals III. Navigator s Engagement within their Professional C ommunity IV. A rtifacts S hared Narratives E xperiences V. D ialog i. Navigator s Per ceptions ii. Values iii. Views iv. Navigator s Dialogue v. Resource Building vi. Knowledge Attainment vii. Discussion/Exchange viii. Problem Solving ix. Discussion of New x. Developments (internal/external) xi. Information Seeking xii. Requests for information xiii. Planning xiv. Coordination xv. Inform Community xvi. M utual and Emotional Support xvii. Knowledge Self G rowth xviii. Resource Gathering Experiences xix. Resources Exchange xx. N avigators Experiences

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396 H. Table: Navigator s as Border Crossers List and Examples of Overarching codes Major codes Sub codes/ Second level codes an d Initial codes of in person interviews A Overarching Codes B Major Codes C Sub codes Second level Codes D Initial Codes Border Crossers a Native ways of knowing and being 1 Native Worldview 2 Holistic Way of Looking at the Life World and Health 3 Spirituality 4 Ways of Talking Oral Tradition 5 Communication 6 Self Determination 7 Kinship 8 Navigation as a Native Way of Helping I. Holistic Attitude toward Health II. Spirituality as a Way of Being III. Collective Spirituality IV. Respect for Sacred Space V. Stor ytelling VI. Narrative traditions VII. Cultural VIII. Listening/Speaking Norms IX. Communicating/ Access to Community Gatekeepers X. Tribal Self Determination XI. Autonomy and Independence XII. Understandings of Relationships XIII. A Social Way of Helping i. Balance among Emotional, Spiritual, Mental and Physical H ealth ii. Religious Expression Individual iii. Religious Expression Community, Collective iv. Christian Beliefs v. Traditional Native Spirituality vi. Integration of Sacred and Mundane (not separate) vii. Tribal Oral Tradition viii. Family Oral Tradition ix. Familiar C ommunication x. Use of Familiar L anguage xi. Two Way C ommunication xii. Can R elate to them i. e. Share their A ttitude xiii. Help them Feel Comfortable, Trusting not Out of P lace xiv. Individual Determination of Cancer Journey xv. Extended Family Relationships xvi. Resources from Nativ e Community

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397 A Overarching Codes B Major Codes C Sub codes Second level Codes D Initial Codes b Western medicine XIV. Historic Mistrust of Western World xvii. Challenges xviii. Collective xix. Individual xx. Psychosocial xxi. Emotional xxii. Stigma xxiii. Trust xxiv. Lack of Cultural Understanding/ Sensitivity/Education xxv. Building Better Re lationships with Western M edicine 1 Ra cism XV. Barriers XVI. Society Racism 2 Mistrust XVII. Barriers XVIII. Historic Mistrust o f Western World XIX. Overcoming Mistrust through Action xxvi. Skepticism xxvii. Suspicion xxviii. Mistrust of Western Medical Institutions xxix. Mistrust through Cultural Oppression xxx. Advoca cy and Mediation 3. Scientism XX. B arriers XXI. Western Universal XXII. Understandings and Practices XXIII. Barriers XXIV. Approaching Problems and S olutions from a Scientific Approach xxxi. Conflict with Native Worldview xxxii. Mediation xxxiii. Advocac y

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398 I. Table: N avigators Bridge Making ; List and Examples of Overarching codes Major codes Sub codes/Second level codes and Initial codes of in person interviews A Overarching Codes B Major Codes C Sub Codes Second level code D Initial Codes Makin g Bridges: Forming a Permanent Bridge for the Equal Sharing of Cancer Treatment Options Using Western M edicine and Native Traditional Medicine 1. Bridging 2. A Conduit Across Two Worlds: Western M edicine and Native Traditional Medicine 3. Expanding and Joining Worldviews I. Equal treatment of Western a nd Native Traditional Medicine O ptions II. Resolving / Worldv iews not L imited in Perspective i. Acknowledging Differences: Western M edicine and Native Traditional Medicine ii. Open Communication iii. In corporation of Native Traditional Medicine into P atient Care Plan iii. Incorporation of Alternative and Complementary Medicine into P atient Care Plan iv. Willingness to Other Ways of Thinking/B eing

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399 J. Figure: R ecruitment Flyer

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400 K. Figure: Task s of Cancer Patient Navigators o ver the Cancer Care Continuum Tasks Phases* 1 2 3 4 5 6 A 1 Understandable 1. Offer education x x x x x x 2. Help clients and families find additional information from websites & agencies. x x x x x x 3. Maintain library of appropriate materials. x x x x x x needs, as well as the cultural appropriateness of their approaches and materials. x x x x x x A 2 Available 1. Ma intain directory of services and services logistics, procedures, & amenities. x x x x x x 2. Maintain a bank of application & eligibility forms for programs. x x x x x 3. Encourage providers to expand programs and ability to serve community of interest x x x x x x 4. Develop relationships with providers, eligibility workers, & programs offering free & low cost services. x x x x x x 5. Develop new services to meet needs e.g., ethnic specific support groups. x x x x x x 6. Advocate for additional serv ices & reimbursement for services. x x x x x x A 3 Accessible 1. Offer education through cultural gathering sites and events. x x x x x x 2. Utilize ethnic minority media & ethnic venues to promote message & PN service. x x x x x x 3. Build brid ges to diverse service organizations. x x x x x x 4. Help clients make appointments, & remind them of appointments. x x x x x 5. Assist clients with intake & other forms. x x x x x 6. Arrange transportation & accompany client if appropriate x x x x x 7. Assist families in renegotiating roles so that client can get screening & treatment. x x x x x 8. Address other structural, cultural, & emotional barriers to care. x x x x x A 4 Appropriate 1. Offer free or low cost education & PN services x x x x x x 2. Identify free or low cost resources. x x x x x x 3. Help client w/ paperwork for insurers & free & low cost programs. x x x x x 4. Work with others to secure grants to support PN & cancer care services. x x x x x 5. Coordinate w/ othe r agencies & providers to co sponsor events. x x x 6. Collaborate w/ local and national companies for appropriate incentives & services. x x x x x x A 5 Appropriate x x x x x x 2. Provide or link to medic al interpretation x x x x x 3. Help clients maintain modesty & respect during screening, tests, & care. x x x x x x x x x x 5. Encourage providers to hire diverse s taff. x x x x x

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401 Tasks Phases* 1 2 3 4 5 6 6. Clarify preferences for cultural practices; if appropriate, contact cultural or spiritual leaders to support client & family with traditional practices. x x x x A 6 Accountable 1. Understand the available culture of care. x x x x x x 2. Help clients secure & maintain records. x x x x x 3. Help client document treatment choices & care preferences. x x x 4. Document PN services provided, as well as barriers & successes. x x x x x x 5. Participate in quality assurance & e valuation of PN services. x x x x x x 6. Establish agency and self as trustworthy, credible resource. x x x x x x 7. Provide reports to community on PN & other cancer care services. x x x x x x *Phases include 1=education/outreach, 2=screening, 3=diagno sis/staging; 4=treatment; 5=survivorship; 6=end of life Note. Adapted from p.409, Braun, K. L., Kagawa Singer, M., Holden, A. E., Burhansstipanov, L., Tran, J. H., Seals, B. F., & Ramirez, A. G. (2012). Cancer patient navigator tasks across the cancer c are continuum. Journal of health care for the poor and underserved 23 (1), 398 413. Doi:10.1353/hpu.2012.0029.

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402 L. Table: Comparison of Traditional Indian Medicine and Modern Western Medicine (Hollow, 1999 ) 1 Approach: Traditional Indian Medicine Approach: Modern Western Medicine Mind, body, spirit holistic approach patient along with physical, social, and spiritual data to make diagnosis Teach (via healer) the patient to heal self Ceremonies teach patient how to be well Healing/harmony emphasized Honors the patient for restoring wellness History, physical, family assessment used along with treatment plan Herbal medicine from nature may be used Preventative medicine taught to patient and family Reductionist approa ch Reductionist data biochemical, physiologic, anatomic, lab data used to make diagnosis (social/spiritual not emphasized) Physicians taught they do the healing Teaches patient to be dependent on the medical system and remain sick Disease/curing emphasized Honors the physician for curing History, physical, lab data, and treatment plan Pharmaceutical drugs from US Food and Drug Administration may be used Preventive medicine taught to patient and family Note. Adapted from Table 1, p. 213, in Burhansstipanov, L., & Hollow, W. (2001, August). Native American cultural aspects of oncology nursing care. In Seminars in oncology nursing (Vol. 17, No. 3, pp. 206 219). WB Saunders. 1 Cited r eference: Hollow, W. (1999). Traditional Indian medicine, in Galloway JM, Gold berg, BW, Alpert, JS (eds ): Primary Care of Native American patient s: Diagnosis, Therapy, And Epidemiology. Boston, MA, Butterworth Heinemann, pp.31 38

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403 M. Table: Sample Questions from the American SPIRITual History to Identify American Indians or Alaska Natives Using Traditional Indian Medicine (Hollow, 1999 ) 2 S.P.I.R.I.T. S Spiritual belief system : What is your spiritual belief system? Are you culturally identified with a tribe? Do you follow or ascribe to the traditional beliefs of your trib e? P Personal spirituality : Describe the beleifs and practices of your spirtual system that you personally accept. What does your spirituality mean to you? Do you participate in the spiritual ceremoines of your tribe? Do you know the purpose of your tribal ceremonies? I Integration with spiritual community : Do you belong to the Indians spiritual or religious groups such as? Shaker church Native American churc h Tribal specific religion What is your position or role? Is it a source of support? Could this group help in dealing with health problems? Who are the traditional healers or herbalists that may help you with health problems? Would you like me as your phys ician to collaborate with your healers in regard to your health? R Ritualized practices and restrictions : Do you participate in the spiritual ceremonies of your tribe (sweat lodge smudg ing, shaking tent, blessing way, peyote, to name a few)? Which ce remonies used varey by trieve and geographic location? Do you use herbal medicines recommended by your tribal healer? If so, how often? Are you allowed to share the herbal medicine you use? Are using both TIM [Traditional Indian Medicine] are MWM [Modern W estern Medicine] to treat your heath problems Should you become hospitalized are the ceremonies to be performed in this setting? Do you speak your tribal language? Are you knowledgeable of your tribes native medicines?

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404 S.P.I.R.I.T. I Implications for medical care : Whare aspects of your spirituality would you like me to keep in mind as I care for you? Do you wish me to collaborate with your TIM [Traditional Indian Medicine] healer as you make your decisions about your health care? Is it important to you that I am aw are of the TIM [Traditional Indian Medicine] practices and herbs you use? Do you wan MWM [Modern Western Medicine] perspective in the TIM [Traditional Indian Medicine] practices and herbs you use? (to acknowledge a positive outcome or to prevent side effect s or potential harm with drug interactions.) Do you want me to particiate, if asked, in TIM [Traditional Indian Medicine] ceremonies used as a part of your health care? T Terminal events planning : As we plan for health care near the end of your life, how does your faith impact your decisions? Are there particular aspects of Western allopathic health care you wish to forego because of your faith? Area there TIM [Traditional Indian Medicine] ceremonies that may be requred near the end of your life where my role may be to facilitate these occuring in a hospital, nursing home, or long term care facility? s (i.e., Nav ajo should only be done, if at all, with special technique.) Note. ( Adapted from Ta ble 2 p. 214, in Burhansstipanov, L., & Hollow, W. (2001, August). Native American cultural aspects of oncology nursing care. In Seminars in oncology nursing (Vol. 17, No. 3, pp. 206 219). WB Saunders.) 2 Cited r eference: Hollow, W. (1999). Traditional In dian medicine, in Galloway JM, Goldberg, BW, Alpert, JS (E ds): Primary Care of Native American patient s: Diagnosis, Therapy, And Epidemiology. Boston, MA, Butterworth Heinemann, pp.31 38

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405 N. Figure: Circular Pain Model [Concept adapted from The Sacred T ree. Four Worlds Development Press, 1985 ]

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406 O. Figure: Interviewing Techniques Examples of Respectful Interviewing Crow Cultural Communication Patterns from Messengers for Health M anual (Christopher & Knows His Gun McCormick, 2001) Respectful Intervie wing 1. Asking Questions To get accurate information from the women participating in the project, it is important that questions be asked in a uniform manner. That is, ask all women the same questions in the same way and in the same order so that the an swers can be compared. THINGS TO BE CAREFUL ABOUT WHEN ASKING QUESTIONS: Questions should be read slowly. Use a pleasant tone of voice which shows interest, confidence, and a professional manner. sions that indicate judgment. Be aware that the woman may not always respond to you with eye contact, but respect this behavior as it is part of Crow culture. Read each question exactly as written. Emphasize underlined words to enhance meaning. skip questions or change the sequence of questions unless the instructions say to. If the woman has already provided information that probably answers the question, you can refer to this by saying something like: Read all possible responses when there is a multiple choice format. in boldface print. Never try to ask questions from memory. Know questions thoroughly, but you must read them exactly as written. If they are wondering about certain questions, let them know that the information will be used to understand about cervica l health among Crow women and used to educate all Crow women about cervical health. If a woman starts to answer the question before you read all of the responses, pause and listen to the or you are not sure, repeat the question with her answer inserted to make sure you have the correct information. this must be done in a standard manne r. Use one of the following methods: Repeat the entire question. (For example, if the woman did not hear it).

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407 Respectful Intervie wing Repeat part of the question, when the woman is unsure of a word. Repeat all response categories if the woman asks you to repeat any one of t hem. Define the meaning of a particular word if it is not understood by the woman. If both you and the woman speak the Crow language, it may be necessary to interpret the question from English to Crow. This will not only help the woman to better under stand the question, but will also allow her to feel more comfortable and provide effective communication. The woman will be able to express herself and respond to the question especially when she shares a comment or opinion. This will take place naturally between you and the woman during the course of the interview. Never rush a woman through her response or interrupt her. 2. Recording Open and Closed Ended Questions Closed ended questions are questions that have response categories on the interview for you to circle. Open ended questions have lines for you to write the response. Open ended questions are harder to record. The following information will help to record closed and open ended questions. For closed Circle the number next to her answer Write down any additional information the woman may provide If a woman starts to answer the question before you read all of the responses, pause and listen to the not seem to answer the question or you are not sure, repeat the question with her answer inserted to make sure you have the correct answer. The answer must be the same as one of the response options. If the answer does not fit into one of the response choices, use a probe to find the response option. (see probe section below) For open abbrevi ations but leave space to write out the complete words when you edit the interview later. You may repeat what the woman has said while you write it down to get more time to write, or you may For open ended questions, always ask if there is anything else the woman would like to add until she says else to share.

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408 Respectful Intervie wing It is very important that the information that the woman gives you be recorded exactly as you hear it. When there is not enough space provided for an answer to an open ended question, you can write on a blank sheet of paper. Make sure yo u note the number of the question you are writing about. 3. Feedback Give feedback to let the woman know that you are listening and appreciate her responses. Give short feedback for short responses: Uh huh ok thank you thanks Give longer feedba ck when the woman gives longer or difficult answers: Its useful/helpful to get your ideas on this think about this thank you for sharing your experience words, facial expression, or gesture surprise, pleasure or disapproval of any answer given by the wom an. For Pause before giving feedback. It signals the woman that you have considered her answer carefully and that you have waited until she was completely done answering. Never suggest an answer or give your opinions, even if a woman asks you your opinion. 4. Probing ended questions or focus her on the s pecific content of the question. Here is an example of an unclear response to a closed ended question:

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409 Respectful Intervie wing test appointment? 1. Yes 2. No Wom This response is unclear because the woman did not choose one of the two options. The woman must be asked in a neutral way to clarify which option she would like to choose. Here is an example of an unfocused response to a closed ended question: 1. Yes 2. No These situations req not biased by HOW you asks for clarification. It is important that the probes are neutral and do not appear as if you ses. Some neutral probes: Pause. A pause gives the woman time to think. Repetition of the question or part of the question. This may involve just repeating the response choices. Repetition is used if the woman does not seem to understand the question nd the response. down to two choices or is having trouble making a choice. ion. This would be used with an open ended question. You should continue to probe open ended questions until the woman says that

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410 Respectful Intervie wing end ed questions when you feel that the woman may be able to give more information. Never interpret the meaning of an answer. Always probe for clarification if you are not given one of the responses provided (close e (open ended). Always write down the exact response of the women, word for word. 5. Crow Cultural Communication Patterns Long Pause With Crow women you may find a long pause from the time you end your question to the time the woman responds. This long pause may be noticeable. You may find yourself repeating the question at the patient and wait for the woman to respond. Slow Speaking Some women may speak much slower than you will be used to. They may also respond to your questions with the long pause between phrases. Be patient take your time in listening. All people are valued in the Crow culture, and therefore, what they say has v alue. It is considered disrespectful to speak while someone else is talking. This communication pattern is different from other cultural groups. For example, in other cultures it is valued to interject affirmatives (uh huh, yes, no?), or even to interru pt. If you interrupt, most likely the woman will stop speaking in mid sentence. She may have been offended, but she may woman will then likely take a pause and respond. You should be aware that the words cancer, breast, and cervical (cervix) may bring about feelings of discomfort in some of the women that you talk with. The use of the word cancer, especially has had neg ative associations with its use. For example, there is no word in the Crow language for the word cancer and when it is diagnosed with cance r, they are going to die. Because of outreach education that has been done in this area of health, women are responding better to the use of these words and people are understanding that not all people who are diagnosed with cancer will die. Now we have Cr ow cancer survivors. We want women to feel comfortable to use barriers to using these words. 6. Important Techniques for Interviewing

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411 Respectful Intervie wing t give advice. If women ask questions about cervical health, general health, family problems, etc., Let them choose which person they prefer or if they want the question passed on at all. Write the question down on Kermani, or Suzanne will contact you, regarding they are saying. You should feel that your time with each woman will be pleasant and satisfying. Write down any observations that may need to be brough t to the attention of Alma McCormick. These may be nervousness about answering certain questions, refusal to answer certain kinds of questions, etc. Remember the woman being interviewed is the most important person in the interview process. Her feeling s, opinions, and ideas should be of the utmost concern to you. When the interview ends, the woman should have a good feeling about having been interviewed. Tone of voice is very important: tone should sound warm, caring, interested and compassionate vers us the Note : Adapted from Messengers for Health Training Manual, Christopher, S. & Knows His Gun McCormick, A. (2001). Messengers for Health Interview Training Manual, (pp.34 4 2 ) use d with permission Examples of Cultural Communication patterns: Crow Cultural Communication Patterns Long Pause with Crow women you may find a long pause from the time you end your question to the time the woman responds. This long pause may be not iceable. You may find yourself repeating the or heard. Be willing to be patient and wait for the woman to respond. Slow Speaking Some women may speak m uch slower than you will be used to. They may also respond to your questions with the long pause between phrases. Be patient take your time in listening. All people are valued in the Crow culture, and therefore, what they say has value. It is considered disrespectful to speak while someone else is talking. This communication pattern is different from other cultural groups. For example, in other cultures it is valued to interject affirmatives (uh huh, yes, no?), or even to interrupt. If you interrupt, m ost likely the woman will stop speaking in mid sentence. She may take a pause and respond.

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412 Respectful Intervie wing You should be aware that the words cancer, breast, and cervical (cervix) may bring about feelings of discomfort in some of the women that you talk with. The use of the word cancer, especially has had negative associations with its use. For example, there is no word in the Crow language for the word cancer feel that when someone is diagnosed with cancer, they are going to die Because of outreach education that has been done in this area of health, women are responding better to the use of these words and people are understanding that not all people who are diagnosed with cancer will die. Now we have Crow cancer survivors. We health and we hope that this interview will help to overcome some barriers to using these words. Note. Adapted from Messengers for Health Training M anual Christopher, S & Knows His Gun McCormick, A. (2001). Messengers for Health Interview Training Manual, (pp.34 42 )

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413 P. Figure: Death Rates, Ranks, and Rate Ratios of the Top 15 Leading Causes of Death for American Indians/Al askan Natives Compared with Whites by Indian Health Service Region: United States, 1999 2009 Note. Adapted from Espey, D. K., Jim, M. A., Cobb, N., Bartholomew, M., Becker, T., Haverkamp, D., & Plescia, M. (2014 a ). Leading causes of death and all cause mortality in American Indians and Alask a Natives. American journal of public health, p. e8 Published online ahead of print.

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414 Q Figure: Conceptual Framework

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415 COMRIB APPROVAL

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416