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Deciding to seek care from the Indian Health Service and western health care facilities

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Title:
Deciding to seek care from the Indian Health Service and western health care facilities understanding health decisions on the Pine Ridge Indian Reservation
Creator:
Ferro, Erica F
Place of Publication:
Denver, CO
Publisher:
University of Colorado Denver
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Language:
English
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xii, 145 leaves : ; 28 cm

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Subjects / Keywords:
Medical care -- South Dakota -- Pine Ridge Indian Reservation ( lcsh )
Lakota Indians -- Medical care ( lcsh )
Genre:
bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Bibliography:
Includes bibliographical references (leaves 137-145).
Thesis:
Anthropology
General Note:
Department of Anthropology
Statement of Responsibility:
by Erica F. Ferro.

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|University of Colorado Denver
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|Auraria Library
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All applicable rights reserved by the source institution and holding location.
Resource Identifier:
71815144 ( OCLC )
ocm71815144
Classification:
LD1193.L43 2006m F47 ( lcc )

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DECIDING TO SEEK CARE FROM THE INDIAN HEALTH SERVICE AND WESTERN HEALTH CARE FACILITIES: UNDERSTANDING HEALTH DECISIONS ON THE PINE RIDGE INDIAN RESERVATION by Erica F. Ferro B.A., State University of New York at Buffalo, 2000 A thesis submitted to the University of Colorado at Denver/Health Sciences Center in partial fulfillment of the requirements for the degree of Master of Arts Department of Anthropology 2006 /-\ I I

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by Erica F. Ferro All rights reserved.

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This thesis for the Master of Arts degree by Erica F. Ferro has been approved by Krtty K. Corbett 131 2DO(e Date

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Ferro, Erica, F. (Master of Arts, Department of Anthropology) Deciding to seek care from the Indian Health Service and Western health care facilities: Understanding health decisions on the Pine Ridge Indian Reservation Thesis directed by Kitty K. Corbett, Ph.D., MPH ABSTRACT This thesis examines how Lakota people living on the Pine Ridge Indian Reservation make decisions about seeking health care at the Indian Health Service and other Western health care facilities. It examines the relationship between structure and agency; exploring the tensions that exist when making decisions about using these types ofhealth care options. Qualitative interviews were coded and analyzed, and survey data were used to gain information about utilizing Lakota medicine and Western biomedical care. Analysis revealed several main factors that influenced decision-making. I) Interactions with doctors and patients, including communication barriers, affect perceptions of care and usage ofhealth care facilities. 2) Past experiences also affected perceptions of care. Respondents were influenced by their own experiences and stories heard from relatives and friends about positive and negative health care experiences. 3) Bureaucratic barriers affect patient perceived quality of care, and actual quality of care received. Respondents identified three areas of bureaucratic concern: frustration with the new appointment system, extended wait time at the clinic, and high staff turnover. Personal networks are utilized to avert bureaucratic

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barriers. 4) Cultural expectations of the health care system, and beliefs about Western and Lakota medicine, also affect decisions about the type of care chosen for a particular illness. 5) Financial limitations were discussed most often among respondents, and caused problems when health care needs required transportation, food and lodging costs, and paying for expensive medical bills. Families help each other in times of financial need when possible. When looking at structure and agency, it was shown that people living on the reservation invoke agency in several ways, but because of structural constraints, people ultimately end up complaining about their situation. Some people are able to affect change in their current situation to attain immediate health care needs, but larger structural issues (e.g., the way IHS is constructed and the larger forces that control funding for IHS) are left unchanged. This thesis concludes with recommendations, as identified by respondents themselves, for future improvements to overcome barriers faced by interview respondents. This abstract accurately represents the content of the candidate's thesis. I recommend its publication. Kitty K. Corbett

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DEDICATION PAGE I would like to dedicate this thesis to all those on Pine Ridge who graciously welcomed me into their homes to discuss health care on the Reservation. I would also like to dedicate this to Bradley Morse for being amazingly supportive of my efforts as I completed this thesis at my own turtles pace, and for encouraging me to trust in my academic abilities.

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ACKNOWLEDGMENT First and foremost, I would like to thank Dr. Kathy Pickering for allowing me to be involved in the great work she is doing on Pine Ridge, and for encouraging me to expand her research into the area of health care. I would also like to thank my committee chair, Dr. Kitty Corbett for all ofher insightful academic support and financial support during this thesis process. In addition, I would like to extend my everlasting gratitude to Dr. Jean Scandlyn for being so available and unbelievably flexible when arranging meetings with me to discuss the progress of my first draft. I could not have done it without you Jean. Furthermore, I would like to thank the agencies that contributed to the funding of this research. The National Science Foundation provided funding through the Research Experience for Graduates Supplement grant that allowed me to attend Dr. Pickering's Ethnographic Field School, and begin collecting data for my thesis during the summer of 2004. I would also like to thank the Ruth Landes Memorial Fund for their financial contribution through the RISM Landes Award for Supervised Fieldwork that assisted in the completion of my thesis research during the summer of 2005.

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TABLE OF CONTENTS Figures ......................................................................................................... xi Tables .......................................................................................................... xii CHAPTER 1. INTRODUCTION .................................................................................... 1 Responsibility of the Federal Government ........................................ 3 Health Care Access ............................................................................ 4 The Setting: Pine Ridge .................................................................... 1 0 Health Care Resources ................................................................. 12 Specialty Referrals ....................................................................... 13 Chapter Overview ............................................................................. 13 2. LAKOTA CULTURE .............................................................................. 17 Family ................................................................................................ 17 Sharing Resources .............................................................................. 19 Lakota Medicine and Spiritual Beliefs .............................................. 21 3. A BACKGROUND OF DECISION-MAKING AND PERSPECIVES ON STRUCTURE AND AGENCY .............................. 26 Medical Pluralism: A Growing Need to Understand Choices ........... 27 Exploring Structure ............................................................................ 28 Ecological Frameworks ............................................................... 29 Critical Medical Anthropology Theory ........................................ 32 Searching For Ways to Understand Health Decision-Making: Maternal Mortality and an Examination of Specific Illness Episodes ............................................................................ 3 6 Vlll

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Agency ............................................................................................... 39 The Complex Interplay Between Structure and Agency ................... 44 Bourdieu and Practice Theory ....................................................... 44 Contextualized Decisions .............................................................. 4 7 The "Three Delays" Model.. .......................................................... 52 Going Beyond Emergencies and Specific Illnesses ........................... 56 4. METHODS .............................................................................................. 59 Study Design: Mixed Methods .......................................................... 59 Qualitative Design .......... ................................................................... 62 Quantitative Design ........................................................................... 63 SaJ11pling Strategy .............................................................................. 64 Study SaJ11ple ..................................................................................... 65 Analytic Techniques .......................................................................... 68 Study Limitations ............................................................................... 68 5. FINDINGS ....................................................... ........................................ 71 Doctor/Patient Interactions ................................................................ 71 Communication ....................................................... ..................... 73 Past Experiences and Perceptions of Care: Spreading the Word About Health Care Experiences ............................................... 76 Bureaucracy: Making Appointments, Waiting Too Long Losing Your Doctor ........................................................................... 80 Appointments and Wait Time ...................................................... 80 Staff Turnover .............................................................................. 87 Culture: Lakota Values and Beliefs Affecting Health Decision-Making ................................................................................ 88 Beliefs ........................... ..................................... ........................ 88 Family Values ......................................................... .................... 89 Personalistic Networks . ............................................................... 90 Perception ofTime ....................................................................... 93 ix

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Lakota Healing and Ceremonies .................................................. 94 Financing: Paying for Health Care Related Expenses When There Is Not Enough Money ................................................... 98 Transportation, Lodging and Food .............................................. 99 Unpaid Medical Bills ................................................................. 105 6. DISCUSSION ........................................................................................ 115 The Three Delays Examined ............................................................ 116 Universal Health Coverage: Does Free Health Care Still Cost Too Much? ....................................................................... 121 Culture of Complaint: An Examination of Structure and Agency ....................................................................................... 123 7. CONCLUSION ...................................................................................... 127 Recommendations ............................................................................ 128 Future Directions .............................................................................. 133 APPENDIX A. QUESTION GUIDE FOR INDIVIDUAL INTERVIEWS WITH TRIBAL MEMBERS ................................................................ 135 BIBLIOGRAPHY ................................................................................................. 13 7 X

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LIST OF FIGURES Figure 5.1 Use ofTraditional Medicine ....................................................................... 95 5.2 Percent Use ofWestem Medicine ............................................................... 97 XI

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LIST OF TABLES Table 1.1 Pine Ridge Reservation Demographic Characteristics ............................... 11 4.1 Comparison of Study Sample with Random Household Sample in 2004 ......................................................................................................... 67 xii

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CHAPTER 1 INTRODUCTION A number of health problems whose incidence occurs disproportionately on American Indian Reservations across the United States include, cerebrovascular disease, cardiovascular disease, cancer, respiratory illnesses, gastrointestinal diseases, diabetes, HIV I AIDS, drug and alcohol abuse, cigarette smoking, obesity, and suicide (CDC 2000; Parker et al. 2001; Harwell 2002). The Aberdeen area of the Indian Health Service (IHS), which includes the Pine Ridge Indian Reservation in South Dakota, has either close to or the highest rates of several of these health problems compared to other IHS areas in the U.S. For example, they have especially high rates of tuberculosis, cerebrovascular disease, death related to diabetes, influenza, lung cancer, breast cancer, colon-rectal cancer, prostate cancer and other malignant neoplasms (IHS 2002). In addition to these problems, this area also has the largest percentage of the population below the poverty level and the highest infant mortality rate of all the IHS Regions in the U.S. (49.6% below the poverty level; infant mortality 12.5/1000 live births) (IHS 2002). Life expectancy in the Aberdeen area is estimated to be only 65.4 years of age (compared to 77.6 years of age nationally) (IHS 2002; CDC 2005). Health care access issues are especially 1

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important in this area because ofthe high rates of various health problems, and the fact that half of the residents are living below the poverty line. The connection between poverty, inequality, and ill health is clear in the literature (Farmer 1999; Patel I999; Kosa et al. I969; Mackintosh 200 I; Kubzansky et al. 2001; Krieger 2000), and medical anthropologists have shown that improving medical technology is not going to create a healthier society by itself (Kunitz 200 I; McKeown I998). Health does not come only from having medical facilities available; they must be accessible and utilized. The issue of health care access is affected by poverty in many ways. One part ofthe experience of poverty is the vulnerability that one faces when attempting to access health care in a time of great need (Mackintosh 2001). The idea of facing fear or abuse when in a vulnerable position profoundly shapes perceptions of health care systems, thereby affecting health care access decisions. Poverty also exacerbates the number and severity of health problems existing in a community (hence, potentially increasing the numbers of people seeking care), the amount of money available to pay for services, the cost of transportation to and from health care facilities, and the cost of care for family members in the absence of an adult for medical reasons, to name just a few. The problem of access is complex and includes issues of equity, effectiveness of medical care, unnoticed or unaddressed cultural influences, education, gender, and the numerous problems faced by those living in poverty (Farmer I999; Mackintosh 2001; Kubzansky et al. 2001; Krieger 2000; McKeown 1998; Clark 1999; Hallet al. 2

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2000; Brandt 1995). This thesis explores the access issue by revealing several factors that affect how Lakota people on the Pine Ridge Indian Reservation decide to utilize IHS and other Western health care facilities. The factors that are identified through in-depth household interviews are examined through an exploration of structure and agency in order to understand the nature of facilitators and barriers to gaining access to Western health care options on this reservation. Responsibility of the Federal Government Over the past 300 years the U.S. Federal government has acquired tribal lands by ensuring that those nations that gave up their land would maintain tribal integrity and survival (Kuschell-Haworth 1999). Those guaranteed rights included health care (Kuschell-Haworth 1999). The first agency created to address American Indian health care needs was the Office of Indian Affairs in the War Department, which subsequently changed to the Bureau of Indian Affairs (BIA) in the Department of the Interior (Kuschell-Haworth 1999). The main focus ofthe Federal reservation health care plan for American Indians in the late 19th and early 20th centuries was assimilation to white culture (National Library of Medicine). By the 1920s, the effectiveness of the BIA in addressing public health concerns was questioned (National Library of Medicine). Today, the responsibility for providing health care to American Indians rests primarily on the shoulders of the Indian Health Service. This agency, housed within 3

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the Department of Health and Human Services (HHS) was established under the Transfer Act in 1955 (Chapman et al. 2003). IHS has been given primary responsibility for reducing health care disparities in American Indian communities, and has been successful in decreasing mortality rates for tuberculosis, pneumonia, influenza, infant and maternal mortality, accidents, injuries, and poisoning since 1973 (IHS 1998-99). A major problem facing IHS today is the increasing number of cases of chronic illness. These diseases are much more expensive to treat than acute illnesses and often have to be treated over the entire life course of an individual. With decreasing funds available to IHS from the Federal Government (U.S. Commission on Civil Rights 2004), the problem that exists for the IHS of paying for the care that is needed is exacerbated. Health Care Access Disadvantaged communities and minority populations are disproportionately affected by the problem of health care access in the United States. Lack of access in these communities comes from the lack of availability of several types of services, financial barriers, transportation barriers, lack of culturally competent practitioners, language barriers, and overt and covert discrimination (U.S. Commission on Civil Rights 2004 ). American Indian communities are hit hard by problems of health care access, which contributes strongly to the fact that they have worse health status and 4

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outcomes than any minority group in the United States (U.S. Commission on Civil Rights 2004). According to the U.S. Commission on Civil Rights, disparities in health care status and outcomes in American Indian communities are reported to occur because of five contributing factors: 1) Limited access to health facilities that can provide appropriate care 2) Poor access to Medicaid, Medicare and private health insurance 3) Limited federal funding 4) Issues surrounding poor quality of care 5) Issues related to poverty and lack of education (U.S. Commission on Civil Rights 2004: 15) Health care access issues are obviously a major factor contributing to health disparities among American Indians. The factors that do not directly mention access also arguably involve access issues. For example, federal funding limitations place restrictions on what services health care organizations can provide, so many patients will not be getting the care they need until it becomes an emergency. Poor quality of care will also affect access. Sometimes in conjunction with federal funding limitations, poor quality could result simply from the lack of funding to pay for the quality of care that is necessary for a particular individual. Poverty often limits the individual's ability (agency) to access quality care. Poor quality of care also affects individual and community perceptions, such that if people do not feel they are getting good care, they may not access health services even when they need them. 5

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Poverty and lack of education also affect access to care. Those living in poverty are less able to pay for all the costs incurred when utilizing the health care system; using health care might not be affordable for some, hence, it limits their access and adherence to the orders of the health care professionals. The first issue, limited access to appropriate health facilities, is a major problem for many American Indians for several reasons. IHS facilities primarily provide primary and emergency care. Specialty care must be referred elsewhere, sometimes to other cities or states. Moreover, some people living on the reservation who identify as American Indians are ineligible for IHS care because they do not have enough American Indian blood (based off of historical records indicating blood quantum), thereby decreasing access to care even further (U.S. Commission on Civil Rights 2004). Transportation issues are also involved in accessing appropriate care. If patients are referred to another city or state, they may not be able to receive help from the tribe to cover the numerous costs of traveling elsewhere, such as: fuel, public transportation, food, lodging, medical bills not covered by IHS, state or private insurance, and child care or money to take family along to out-of-state appointments. The second issue, poor access to health insurance, is a major problem for many American Indian people. Even those who are eligible for IHS coverage have problems getting the care they need because of limited or non-existent specialty care, and the IHS 's strict referral process that is based on the severity of the illness. 6

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Many American Indians are enrolled in public medical programs, like Medicare and Medicaid. These programs can be used to supplement the cost of health care, but many are not taking advantage of the benefits, either out of choice or because they are not eligible to participate. Lack of enrollment occurs because of several reasons. First, many believe that the federal government is required to pay for all health care as a result of treaty obligations; "so reimbursement should be neither costly or burdensome to the individual patient" (U.S. Commission on Civil Rights 2004: 112). Applying for Medicare and Medicaid programs is confusing and time consuming, so many do not even apply. They argue that their ancestors did not negotiate Medicare and Medicaid in the treaties, so many do not agree that they should abide by the "burdensome rules and regulations" of these programs (U.S. Commission on Civil Rights 2004: 112). Another reason for lack of participation is the fear that the IHS will be eliminated if they participate in public insurance programs (U.S. Commission on Civil Rights 2004). There is also stigma attached to the utilization of public programs that could cause people not to use Medicare or Medicaid. Some procedural issues decrease access to these programs as well. Currently, in order for the state to receive 100 percent reimbursement for state expenditures, American Indians are required to receive care only from IHS and tribal health facilities. With the contract care system that is in place, many are referred to other facilities for health care services that are unavailable on the reservation, so the state is required to 7

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pick up the remainder of the cost that is normally paid for by the federal government. Therefore, there is less incentive for the states to enroll American Indians in these programs. Finally, there are individual barriers to eligibility. For example, according to regulations, Medicare recipients must have forty quarters of Social Security to be eligible (U.S. Commission on Civil Rights 2004). Many American Indians do not meet that requirement. Also, with high unemployment rates, few individuals have private company paid insurance, and few can afford to pay out-of-pocket for health insurance (Census 2000; Chapman et al. 2003). Limited federal funding is also a major problem that affects access to health care. With chronic illnesses on the rise within American Indian Nations, more money is needed for complex treatment and for many years of continuing care. If there is not enough money to pay for chronic illness care, many needed services will not be available, hence limiting access to life saving health services. Funding limitations are part of the structural barriers that are outside of individuals to control, except through lobbying Congress to increase appropriations for IHS. Issues related to poor quality of care center around actual treatments available, interactions between practitioners or healers and patients, racism, and perceptions of health services. Good quality of care cannot exist if the appropriate treatments are unavailable to the patient. If a patient is seeking care and the treatment needed is not available due to lack of funding, quality of care lessens. 8

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Also, doctor-healer/patient interaction is very important in terms of perceptions of the quality of care received. If the patient does not feel comfortable in the interaction with the healer or doctor, that person is less likely to seek services in the future. The perception of the quality ofhealth services being sought is also an issue for health care access. If patients do not believe they are being cured or healed, or that the techniques used are not within cultural understandings of treatment, they may not seek care in the future. Poverty limits access as well. Expensive procedures not covered by IHS or private insurance, or only partially covered, may not be accessible for those without the means to pay for services. Transportation to and from health care providers may be impeded because an individual does not own a car or cannot pay for a ride. Discrimination most certainly plays a role in all of the aforementioned factors that contribute to health care disparities. In American Indian communities, overt discrimination is a problem, but more often than not, covert discrimination causes more problems for accessing care as is evidenced by the "continued existence of a chronically underfunded, understaffed, and inadequate health care delivery system" (U.S. Commission on Civil Rights 2004: 1). Federal funds are not prioritized for the health care of American Indian people despite the treaty obligations the U.S. government are supposed to uphold. 9

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The Setting: Pine Ridge The Pine Ridge Indian Reservation is located in southwestern South Dakota near the Nebraska border, and is home to the Oglala Sioux (Lakota) Tribe. The Oglala Sioux are part of the greater Lakota Nation (Chapman et al. 2003). The Reservation spans an area of 2 million acres, with I. 7 million acres owned by the Tribe or by individual landowners (Chapman et al. 2003). The landscape varies and consists of open grasslands in the south and east, with rolling pine-covered hills that extend to the western edge of the Reservation, beyond which lies the eastern edge of the Black Hills. To the North is a large area (160,000 acres) of Badlands, which consists of rolling hills, mesas and canyons (Chapman et al. 2003). Until recently, the population ofPine Ridge was estimated to be around 15,542 (Census 2000). This census number was challenged using data gathered from a random household survey conducted under the supervision of Dr. Kathleen Pickering from Colorado State University. Now the population number on the reservation is officially recognized as 28,787 (Letter to Jim Berg, July 15, 2005; See also Crash 2005 for Lakota Times article discussing the acceptance of the new census numbers). This still may be an underestimate as the Bureau of Indian Affairs (BIA) reported the population in 1999 to be 41 ,226 (Chapman et al. 2003 ). Data for Pine Ridge exclusively are not always available, so some statistics need to be estimated by using census data from Shannon County which is completely 10

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housed on the Reservation, and comprises 83% of the total Reservation population (Chapman et al. 2003). In terms of race and ethnicity, Shannon County's population is 94.2% American Indian, 4.5% white, 0.1% Black or African American, and 1.4% Hispanic of any race (Census 2000). There are approximately an equal number of females and males (50.1% female, 49.9% male), 4.36 individuals/household, and 45.3% of the population is under the age of eighteen, with the median age being 20.6 (Census 2000). Shannon County has a median annual household income of$20,916, with 26.7% of residents reporting an income under $10,000, 15.7% reporting an income over $50,000, and overall, 52.3% reported income that is below the poverty level (Census 2000; Chapman et al. 2003). According to the 2000 Census, the unemployment rate for Pine Ridge was 34.3% (Census 2000). See Table 1.1 for a summary of various demographic characteristics on Pine Ridge. Race/Ethnicity Percent% American Indians 94.2 White 4.5 Hispanic of any race 1.4 Black/ African American 0.1 Gender Female 50.1 Male 49.9 Percent Livin2 Below Poverty 52.3 Unemployment Rate 48.8 Table 1.1: Pine Ridge Reservation Demographic Characteristics 11

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Health Care Resources The main IHS hospital on the Pine Ridge Indian Reservation is located just east of the village of Pine Ridge. It is a new unit that has been in service since 1994 (Chapman et al. 2003). It has 46 beds, 16 physicians, full-service general surgery, and an acute care and obstetrics ward (Chapman et al. 2003; IHS Aberdeen Area). The hospital is documented to have several specialty clinics including, Diabetes, Pediatrics, Obstetrics and Gynecology, Optometry, Ear Nose and Throat, Cardiology, Dentistry and others (Chapman et al. 2003; IHS Aberdeen Area). In addition to the IHS hospital, smaller health facilities are located in Kyle and Wanblee, and there are field clinics in Manderson, Allen, and Martin (Chapman et al. 2003). All of these facilities serve approximately 20,000 individuals (Chapman et al. 2003), but this may be a gross underestimate because of the number of individuals that live off the reservation but still return to use the IHS facilities. Thus there may be upwards of 40,000 people that use the health care facilities on Pine Ridge. The Oglala Sioux Tribal Enrollment office shows a total enrollment of 44,542 people, including those living on and off the reservation (Oglala Sioux Tribe 2005). Also, in reality, some of the specialty care departments at the Pine Ridge hospital might be either not in use or at capacity so often that many reservation residents get referred to hospitals in border towns for their routine and emergency specialty care. 12

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Specialty Referrals The IHS often refers patients elsewhere for care that cannot be provided on Pine Ridge. During the years 2001-2002, 738 referrals were made by the Pine Ridge IHS hospital, and in 2002-2003, 636 referrals were made (Chapman et al. 2003). Patients are referred to a number of places including, Rapid City Regional Hospital (the main referral site); Sioux Valley and McKennan, and Regional West Medical in used only when Rapid City Regional does not have the services needed; The Mayo Clinic in Minneapolis, Minnesota, which provides specialized care unavailable in South Dakota; and various medical centers in Denver, Colorado (Chapman et al. 2003). IHS funds do not pay for all the referrals made to other hospitals (Chapman et al. 2003). They may be paid for by private insurance, Medicare or Medicaid, or out-of-pocket (Chapman et al. 2003). Also, the patient may be responsible for a co-payment if referred in South Dakota and on Medicare or Medicaid (Chapman et al. 2003). Chapter Overview This thesis aims to uncover a variety of factors that influence how decisions are made to seek health care at the IHS and other western health care facilities by those living on the Pine Ridge Indian Reservation. The following chapters will show that deciding to seek care is only the beginning. There are other factors that arise that 13

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inhibit seeking care at these facilities. These factors will be examined by explaining them in terms of structure and agency to better understand the facilitators and barriers to accessing health care on the reservation. An overview of each chapter is discussed below. Chapter 2 explains some of the background literature discussing Lakota culture. Family relationships and resource sharing are important aspects of culture that help to explain how resources are distributed in terms of health care. Lakota medicine and spiritual beliefs will also be addressed to provide background to these practices, as they are discussed in the findings ofthis thesis in terms of seeking care for certain illnesses. This chapter is an overview of aspects of culture that are important for understanding the context of decision-making that exists when seeking health care on the reservation. Chapter 3 explores the theoretical and literature background utilized in decision-making studies. Structure and agency are examined individually and collectively in order to highlight studies and theories that emphasize one perspective over the other and to examine those studies that attempt to create a balance between structure and agency. The "three delays" model used by Barnes-Josiah et al. (1998) will be explained, as it is helpful for understanding the facilitators and constraints that exist in health care decision-making. More exploration into access to health care and health care decision-making on American Indian Reservations is needed. 14

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Chapter 4 explains the methods used in this study, which used a mixed method approach that emphasized qualitative over quantitative methods. Eighteen in-depth interviews were conducted with household members living on the Pine Ridge Indian Reservation. Several themes emerged from these interviews that explain the context of decision-making around health care issues. Where appropriate, quantitative data from a larger seven-year economic study that is being conducted on the reservation under the direction of Dr. Kathleen Pickering at Colorado State University is used to support the information found in the interviews. Chapter 5 discusses the findings of this study. Key categories found to be useful for understanding health care decision-making are: doctor/patient interactions, past experiences as factors that affect perceptions of care, bureaucracy, culture, and finances. Direct quotes and stories from interview participants illuminate these factors. Chapter 6 bridges the theoretical discussion with the findings of the study. The three delays model is used to explore the barriers faced when deciding to seek care, trying to get care once the decision is made, and receiving quality care once at the hospital, clinic or healer. There is also an examination of the costs incurred even though IHS is supposed to cover all health care for American Indians. Finally, the structure versus agency debate is explored through the notion of a "culture of complaint." Individual agency is limited by structural constraints that make change 15

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difficult, so reservation residents commonly end up complaining about many situations they are unable to change. Chapter 7 is the concluding chapter that discusses recommendations for improving the problems the Oglala Sioux face when trying to seek health care on the reservation. Recommendations come directly from those interviewed in this study. Future directions for research are suggested. 16

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CHAPTER2 LAKOTA CULTURE In this chapter, I do not intend to explain Lakota cultural beliefs and practices in as much detail as is warranted to understand the many intricacies of their cultural system. Rather, I will gloss over some of the important aspects that will help to explain some of the cultural factors that affect decision-making discussed in this thesis project. Family In terms of health and health care, it is important to consider the cultural values of Lakota people because it provides context for familial and community roles in health care seeking behavior and maintenance of healthy lifestyles. For Lakota, family is very important. There are three terms that describe Lakota relations, Tiwahe, Tiyospaye, and Oyate. Tiwahe is a Lakota word that means family (Chapman et al. 2003). It includes the immediate family as well as the extended family. For example, your mother's sisters are all addressed by the same term as your mother, ina, and her children are considered your siblings (Maynard and Twiss 1969: 115; Pickering 2000: 6). The same goes for your father's brothers. They are called ate, which is the name for father, and their children are also your siblings 17

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(Maynard and Twiss 1969: 115; Pickering 2000: 6). This type of network brings family members closer together and increases the amount of responsibility each family member has for one another. Elders in Lakota culture are held in high regard and respected for their knowledge and wisdom of Lakota ways. They are the teachers of the next generation. By knowing your relatives, you can have a better understanding of where you came from and where your individual place is in the world. Tiyospaye refers to the extended family, and includes a kin network of cousins, aunts, uncles, adopted family members and elders (Pickering 2000). Traditionally, the tiyospaye was "a group of families usually related who banded together under one leader for the purpose of hunting and warring" (Maynard and Twiss 1969: 114). Today tiyospayes are not as extensive or cohesive, but they continue to be important social units that exist in contemporary Lakota society (Maynard and Twiss 1969). The Oglala Sioux Nation consists of many tiyospayes. Over time, after European contact, Lakota family units were disrupted in many ways due to continued stress during acculturation, which affected how the following generations adjusted to their roles in society. Many factors including, increased poverty due to a changing economy, boarding school practices and policies, the change in social organization to include a government role in what was traditionally taken care of by family units, the loss of kinship rules, and the increased influence of values taken from outside of Lakota society, contributed to the 18

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disruption of family units (MacGregor 1975; Maynard and Twiss 1969). Children were forced to leave their homes and attend government run boarding schools where they were stripped of their cultural identity (MacGregor 1975). Their hair was cut, their traditional clothes were taken away, and they were forbidden to speak Lakota. Those children (and their parents) who disobeyed the rules were punished and sent to jail. Acculturation also created a dependency issue for Lakota, and contributed to an overall sense of powerlessness. "Military defeat, confinement to the Reservation and the breakdown of traditional institutions left the Oglalas in a state of powerlessness that fostered an over-dependency on the U.S. government" (Maynard and Twiss 1969: 173). The government used handouts as a form of social control by using bribery in order to coerce Lakota people into signing treaties, forcing them into following government rules, and pacifying them so as to avert war and rebellion against the government (Maynard and Twiss 1969). This created a government bureaucracy that adopted many roles that were previously addressed by family units. Despite the changes that have occurred in Lakota society as a result of acculturation, family units remain as a main source of security for Lakota people today. Sharing Resources In the context of Lakota social organization, sharing and generosity of resources is highly valued (Pickering 2000). Individual accumulation of resources is 19

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not as important as the sharing aspect within community relationships. Sharing of resources occurs in public settings or at community "give-aways" that today are held for memorial services for lost loved ones, honoring ceremonies, adoptions and naming ceremonies, and are often combined with powwows (Pickering 2000: 7). Powwows are "Indian social dances divided by gender and styles of dance and accompanied by drumming and singing" (Pickering 2000: 7). Today they are inter tribal, and they follow a consistent form (Pickering 2000). Group cooperation is also important, and helps to keep the community harmonious. This could be an issue in terms of health care because people might seem to agree with the doctor or other provider, but not comply with what is suggested because they do not agree or understand, but do not want to cause any disharmony by disagreeing or asking for clarification. Humans are thought to be in harmony with the earth and all its creatures and the spirit world. Mitakuye Oyasin is a term that means, "all my relatives", or even more specifically, that one has to learn how to be a relative to all living things on the earth (Pickering 2000: 6). Those that understand and believe in the Indian Way, realize that they have an obligation to their people to "help out" whenever they can (Powers 1982: 16). "Helping out" refers to individuals actively or passively participating in Indian functions. By attending a community function of any sort, or by offering assistance in any way at the event, the individual is helping that function to continue as a cultural entity. Any active assistance (this includes just showing up at the gathering) 20

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given in any particular social interaction is framed as "helping out." Or if financial assistance is needed, one will "help out" another person by giving them some money. This act of"helping out" is thought to be hierarchical in that Lakota people are first to help out their relatives, then their tiyospaye, and then the rest of the oyate (Powers 1982). Lakota Medicine and Spiritual Beliefs As an outsider, I do not, and will not ever fully understand Lakota spiritual beliefs and rituals. During the course of this study, I respected participant's willingness or reservations about discussing spiritual practices and ceremonies. This section is meant to describe some of Lakota beliefs and practices as they have been discussed in the literature, not as a comprehensive analysis of Lakota belief systems and practices. Shamans or medicine men have been important figures historically in health and healing among Lakota people. They are thought to be curers, diviners, and they protect "the tribe's security through propitiation of supernatural forces" and they are "leader[ s] in the carrying out of rituals and custodian[ s] of sacred lore" (Maynard and Twiss 1969: 1 00). Today, some shamans are called yuwipi men, and they are used to contact spirits during a ceremony that may be done for one individual or with family members (Maynard and Twiss 1969). Yuwipi men conduct a few types of ritual acts including, Yuwipi rituals, sweat lodges, vision quests, and sun dances 21

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(Powers 1982). To be a part of a ceremony, the only prerequisite is that you believe in the Indian Way"One must believe, because if he does not the rituals will not be effective; the spirits will refuse to enter a dwelling where skeptics are present" (Powers 1982: 16). Before ceremonies, the environment of the ill person is cleansed by burning sage. Sweat lodges (or sweats) are also used to cleanse the environment. During sweats, the body is cleansed through actual perspiration and through cleansing the mind through ritual practices. The special ritual that takes place in the sweat lodge is meant to "reinstate a balance among all living things" (Powers 1982: 40). In addition to cleansing the environment before a yuwipi ceremony, a sacred area is created within the house where the ceremony will occur. The yuwipi man's ceremony paraphernalia are placed inside this sacred space, along with offerings of tobacco, which are put into small pouches. His assistants then tie him up, and in the dark he contacts the spirits and acts as a medium for their voices. The spirits make their appearance in a spectacular way that involves sparks and whistling sounds. A song is sung for this particular ceremony, and then the individual voices their problem. The yuwipi man answers through the voice of the spirits, and the person who the ceremony is being conducted for is touched with rawhide rattles. After this is complete the yuwipi man stands before the individual or group in the sacred space, unbound. The sacred pipe, which contains tobacco, is passed around and then the 22

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participants join together in a sacred meal that usually includes dog meat (Black Elk DeSersa et al. 2000; Maynard and Twiss 1969). Only certain Lakota are allowed to carry the sacred pipe. One person carries the pipe for the family, and it is passed on when another person in the family has a strong vision (Black Elk DeSersa et al. 2000). Women are not allowed to use the pipe in ceremonies, but they can watch over the pipe if the knowledge of the old ways skips a generation and the pipe is not being used. Sun dances are another part of spiritual life that is still present on the reservation today. Each sun dancer is committed to dance for one person who is sick. The sun dance is a religion in which the dancers are supposed to suffer through piercing (Black Elk DeSersa et al. 2000). Sun dances were banned between 1883 and 1934, and piercing was banned for a longer time until 1952 during acculturation which sought to repress Lakota religious practices and force Christian beliefs on the people (Holler 1995). Despite the ban, sun dances were still practiced in secret. Today, sun dances occur often, and many times they are conducted in a non traditional way, including women and outsiders. Even though outsiders are also increasingly found participating in these ceremonies, there are still some sun dances that are conducted in traditional fashion, where the men dance in the sun dance, and the women dance "underneath the shade among the people" (Black Elk DeSersa et al. 2000: 84). 23

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Another way that Lakota have cured illnesses is through the use of peyote in the Native American Church (Maynard and Twiss 1969). Peyote contains several alkaloids that produce hallucinations (or visions) when ingested. Curing of ailments can occur in two ways. First is through ingesting peyote with a group, then discussing the illness together as a way of purging oneself of the illness in the presence of others. Second, peyote can be used as a topical medicine to heal sores. Peyote is not something that has been traditionally used by Lakota (Black Elk DeSersa et al. 2000). The Native American Church is supposed to be representative of all Indian religions, but today it mostly uses peyote, which is used in Navajo and Hopi religion. Today, many Lakota have adopted at least some of the beliefs of the Christian church (MacGregor 1975; Maynard and Twiss 1969). This acceptance did not occur immediately, as many missionaries seeking to "civilize" the Indians caused conflict by doing all that was possible to suppress local Lakota rituals and customs. Eventually, many Lakota accepted Christianity without abandoning local spiritual beliefs (MacGregor 1975). Prayer and Indian medicine have the power to cure sicknesses. The actual knowledge of what is contained in the medicinal cures is not spoken about to nonIndian people. Many people think it's just the prayers that cure, but the Indians have medicine they don't tell anybody about, which they use when people get ill. They still use the medicine, and at the sun dances they have it 24

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and make it. They don't tell them how they mix it. After they take people out in the sun and pray for them, they bring them back and give them their medicine and the sickness is gone. The old-time medicines are still here, and there are a lot of young people who know about this medicine. They don't talk about it, because it belongs to the Indian people. It can help many people, but the people on the outside have a tendency to misuse it (Aaron DeSersa Jr. speaking in Black Elk DeSersa et al. 2000: 1 02). For the purposes of this project, it is important to understand these aspects of Lakota cultural life because decisions about health care seeking are influenced by local cultural beliefs. This is not to say that any health care decision made will be based solely upon culture. There are structural barriers that affect decision-making ability and restrict individual choice. The tensions between structure and agency will be discussed in the next chapter. 25

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CHAPTER3 A BACKGROUND OF DECISION-MAKING STUDIES AND PERSPECTIVES ON STRUCTURE AND AGENCY In general, there is usually more than one factor that influences an individual when making the decision to seek health care. Sometimes there are factors that lie outside of the individual, structural factors, which serve to enhance or inhibit one's individual ability to seek health care in certain circumstances. It is important to understand the tensions that exist between the structure of the system and the agency of an individual to make decisions and carry out health care seeking behavior. This chapter aims to provide a background to the health care decision-making literature, and explore the structure and agency debate so as to provide a conceptual framework with which to examine the findings of this thesis project. In addition, an examination of the "three delays" model, which has been used in the maternal mortality literature to understand facilitators and constraints to accessing health care and receiving quality care, will be discussed. "Three delays" is useful for explaining real world issues that arise when making the decision to seek health care. 26

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Medical Pluralism: A Growing Need to Understand Choices It is recognized that societies worldwide are medically pluralistic. This means "there is now widespread acceptance of many aspects of cosmopolitan medicine, often without any apparent sharp reduction in traditional beliefs and healing practices" (Pelto and Pelto 1997: 151). In 1978, the World Health Organization expressed the need for recognizing medical pluralism, in its seminal report on primary health care that included the "Alma-Ata Declaration" (WHO/UNICEF 1978). This declaration called for the inclusion of community participation in health care and for including indigenous healers in organizing and carrying out health care programs. Studies in Asia, Latin America and Africa have shown that many people use traditional medicine in conjunction with Western biomedicine (Pelto and Pelto 1997). Sometimes people use traditional medicine and biomedicine at the same time as one another, and other times they use one type of care and then tum to the other if they desire. There is evidence of people making the choice to use traditional medicine first, and then using biomedicine, but there is also evidence of the contrary, and of simultaneous use (Romanucci-Ross 1969; Pelto and Pelto 1997). As medical pluralism has become more recognized in health care studies, research is addressing the reasons why and how decisions are made to utilize one type of care over another. Understanding health decision-making in such a 27

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complex system is difficult and requires a deeper analysis of facilitators and constraints that affect choices made. Exploring Structure Structure can be defined as the social organization of a system or group that shapes the actions of those individuals within that group. Agency is the ability of an individual or group of individuals to affect some type of change in society. In terms of the structure and agency debate, the ability of a person or group to change some aspect of the structure of society is called into question. For the purposes of this thesis, structure and agency are understood in terms of the structure of society on the Pine Ridge Indian Reservation, and the interaction between that structure and the agency individuals and groups on the reservation have in changing some aspect of the structural forces that affect decision-making regarding accessing and utilizing the Western health care system. Choices are made about accessing health care on the reservation, but those choices are not made in a vacuum; nor are individuals passive in the face of these conditions or forces. The environmental factors that exist outside of the individual can assist or constrain a person's agency when making the decision to seek care. In other words, the structure of the system can enhance or inhibit agency. Social structure can influence decision-making, especially in terms of class and power relations in a society (Bennish 2005; McElroy and Townsend 2004; 28

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Scandlyn 1993). For instance, in Lane and Millar's (1989) study of structural factors that affect treatment choice for the eye disease trachoma in rural Egypt, it was revealed that the tier of care chosen (home remedy, traditional healer, or biomedical provider) depended upon the social structure of Egyptian villagers. The two hierarchies of resort that existed among this group were: home remedy then traditional healer, and home remedy then biomedical treatment. Biomedical treatment in this community is seen as superior to traditional healers, and because males are superior in terms of social status, they tend to be the ones who go to the biomedical provider if the home remedies do not work. Women and children are more often treated at home unless the condition worsens, in which case they will be taken to a traditional healer. So, delays in seeking care and choices oftreatment options are based upon beliefs that lie deep within the social structure of these Egyptian villagers. This example highlights gender differences and aspects of race and ethnicity in decision-making. Ecological Frameworks One way of examining the structure that exists in society is to use an ecological model. This perspective provides an analytic framework that is useful for decision-making studies in medical anthropology and public health (McElroy and Townsend 2004; Sallis and Owen 2002; Stokols 1992; Stokols 1996). This 29

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perspective looks at the environment as a whole in terms of decision-making. Environmental factors in this framework refer to "the space outside of the person" (Sallis and Owen 2002: 462). This broad interpretation of environment is useful for interpreting health decision-making on Pine Ridge because it allows for an analysis of the various factors identified by individuals in their community that inhibit or facilitate health care seeking behavior. By using ethnographic models, a better understanding of how and why people use health care resources can be examined. McElroy and Townsend explain: Just as ecology provides a model for studying the distribution of resources and energy in a natural habitat, ethnography provides models for studying and analyzing how people use health care resources in social settings and make decisions about what kind of care to seek. They are influenced by financial costs, perceived risks and benefits, the cultural acceptability of certain options, and other factors, all of which can be described in an algorithm (a decision tree) indicating values, priorities, and constraints (McElroy and Townsend 2004: 336). Ecological theory in medical anthropology has been criticized for ignoring political economic contexts and hence blaming the individual instead oflooking at larger issues as contributions to causation (Singer 1997). Ecological models today have attempted to incorporate "alternative models for studying human health," which includes the "interpersonal or behavioral environment rather than the physical environment, as in the discussion of stress, culture change, and political factors affecting health" (McElroy and Townsend 2004: 14). 30

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Building upon the ecological framework, Stokols has referred to a "social ecological" model, which adapts the ecological perspective to better understand human and environment interactions with regards to health. Four assumptions of the social ecological model are as follows: 1) There are many aspects ofthe environment that influence health, 2) Environments are composed of many dimensions including social, physical, objective, and subjective (perceived) environments, 3) Human and environment interactions can be understood at many different levels including individual, familial, community and population levels, 4) Feedback occurs between humans and their environment; meaning that people affect the setting in which they live, and the changes that result affect health behavior because individuals, families, communities, and populations must adjust to new settings (Stokols 1992; Stokols 1996). lbis model can be useful when examining health care decision-making on Pine Ridge. By uncovering what exists in the environment that helps or hinders access to the IHS hospital or other Western health care facilities, the current setting in which Lakota make their decisions can be revealed. An examination of the interplay of structure and agency can shed light upon how an overall ecological model is constructed. It can give context to the ecological factors that are identified by placing them into a conceptual framework that examines the forces that act upon 31

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those factors to either assist or constrain the decision-maker in getting to the final goal of their decision. Critical Medical Anthropoloi)) Theory The structure and agency debate can be examined using critical medical anthropology theory (CMA). The CMA perspective looks at all the factors that contribute to illness situations. It critically analyzes the tensions that exist between the macro and community level forces, and seeks to identify all of the linkages that affect health and illness. Power relations are a central theme in this literature. Singer ( 1998) and others (Baer et al. 1986; Scheder 1988) define critical medical anthropology as: A theoretical and practical effort to understand and respond to issues and problems of health, illness, and treatment in terms of the interaction between the macro level of political economy, the national level ofpolitical and class structure, the institutional level ofthe health care system, the community level of popular folk beliefs and actions, the micro level of illness experience, behavior, and meaning, human physiology, and environmental factors (Singer 1998: 225). Paul Fanner is a physician and anthropologist who is a proponent of the CMA approach (Fanner 1999; Fanner 2003). In his work, he has attempted to uncover the structural influences that affect health care decision-making (Farmer 1999; Fanner 2003). He uses the term "structural violence" to explain how human suffering is connected to the larger forces that constrain individual actors from attaining good health. According to Fanner, structural violence in terms of human 32

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suffering refers to suffering that is "'structured' by historically given (and often economically driven) processes and forces that conspire-whether through routine, ritual, or, as is more commonly the case, the hard surfaces of life to constrain agency" (Farmer 2003: 40). In other words, people are constrained by the structures that are in place in their lives when making choices to reduce their suffering. Racism, poverty and political violence subvert individual decision-making in their gravest sense and cause human suffering to be entrenched in the hopelessness ofbattling against these elusive, yet ever-present structures. Those who attempt to describe structural violence are often not heard because the type of violence and suffering being described goes through a process of "exoticization" which distances the ability to identify with the individuals going through the suffering (Farmer 2003: 40). Suffering from structural violence is magnified to degrees that are incomprehensible from reading facts and figures about the problem; the voices of the anonymous victims suffering from it go unheard. The last issue that causes those describing structural violence to be defeated is that the "dynamics and distribution of suffering are still poorly understood" (Farmer 2003: 41). Doctors can alleviate symptoms, but the expression of illness by the patients about their suffering is as important when trying to understand structural violence as the placement of those "illness narratives" (Kleinman 1988) into the larger context of globalization, political economy, history, and culture (Farmer 2003). 33

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Farmer argues that medical social scientists make "immodest claims of causality," meaning that they are prone to make conclusions about causality that are based on reductionist information. He would criticize them for not accounting for the macro level economic and political forces that limit access to medical care and create conditions of poverty that contribute to the causes of diseases. Disease causality transcends solely a biomedical approach. There are social, political and economic reasons for the spread of infectious disease. Immodest claims are made, according to Farmer, because social scientists generally think about disease causality from two opposing ends: some focus on disease persistence due to patient-related factors, and others "primarily target structural barriers to the delivery of effective care" (Farmer 1999: 229). Farmer believes that these immodest claims of causality detract significantly from public health initiatives addressing infectious diseases. Using tuberculosis (TB) as an example, Farmer wonders why TB is still a leadipg cause of death among young adults when it can be cured with existing, effective chemotherapy (Farmer, 1999). He argues that this is the case because the existence of inequalities and structural violence (shaped by political, economic, and cultural processes) create environments conducive to transmitting infectious disease, developing multiple drug resistant diseases, and limiting access to medical care for many people. Through two case studies, Farmer illustrates the variety ofbarriers faced when treating individuals with TB in poor countries. He shows the complicated relationship that exists 34

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between agency and structural violence, and the effects of social inequality in promoting drug-resistant strains. There are many reasons why TB is still a major cause of death, especially in poor countries, and why patients fail to comply with medical treatments. Social scientists and physicians that make immodest claims of causality, fail to recognize the complex relationships and circumstances that cause non-compliance in poverty stricken countries. Farmer provides examples of studies in social science that illustrate a continued focus on blaming patient behaviors and beliefs for program and intervention failures, and other examples that focus too much on cultural beliefs, neglecting economic and political forces that create health care barriers. Focusing too much on culture could result in the conflation of cultural difference with structural violence. For instance, when the U.S. explained the human rights abuses going on in Haiti, the explanation focused only on local factors, saying that Haiti has a "culture of violence". By doing this, the abuses were distanced from the structural causes that played an important role in the violence that ensued in Haiti during this time (Farmer 2003: 232). Farmer's work highlights the larger structural barriers that are in place that limit agency when trying to seek care, but also the barriers that are in place for the physician and public health worker who are trying to care for individual patients. This is very important when looking at health care decision making because it shows that many times in poor countries or communities, individuals are constrained by politics, economics, bureaucracy, and globalization. 35

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These larger entities contribute to suffering on the community and individual level, and they limit the individual's ability to change their situation in any lasting and meaningful way. Searching {or Ways to Understand Health Decision-Making: Maternal Mortality and an Examination o[Specific Illness Episodes Health decision-making studies have largely focused on choices that mothers make during childbirth and obstetric emergencies, and health care seeking for specific illnesses, such as acute respiratory infections, reproductive tract infections, TB, and childhood diarrhea (Thaddeus and Maine 1994; Pelto and Pelto 1997; Midhet 1998; Granich et al. 1999; Amooti-Kaguna and Nuwaha 2000; Griffiths and Stephenson 2001; Kanti Paul and Rumsey 2002; Whittaker 2002; Bantebya Kyomuhendo 2003; Needham et al. 2004; Xu et al. 2004; Stephenson et al. 2006; Berry, In Press). Maternal mortality has been used to understand decision-making because it is a good measure of population health, and there is a specific outcome, mortality, that can be measured. In a case-control study done by Midhet et al. ( 1998), they found that maternal mortality in rural Pakistan was strongly associated with structural factors. The contextual determinants identified in this study are consistent with those identified in several other studies that point to the role of the health services sector in 36

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maternal mortality. Difficulty in accessing clinic services because of the distance required to travel and lack of access to prenatal care were both found to be major factors contributing to maternal death. In a larger study that looked at determinants of maternal mortality in a hospital setting in developing countries, Sundari ( 1992) also found that lack of timely, adequate prenatal care and distance to the hospital were important factors in maternal death. Sundari argued that the reasons women are unable to get to the hospital during an obstetric emergency have to do with not having adequate health information, economic and cultural factors, and lack of transportation to the hospital. Studies have looked specifically at TB care seeking behaviors (Needham et al. 2004; Xu et al. 2004). The study done by Xu et al. (2004) used focus group discussions to uncover information about health seeking behavior in a rural Chinese province. They found gender differences in TB care seeking behavior. Women were found to seek care less often and to care more for their husband and children's health than their own health. Men's status in the familial setting was also a reason given for their priority in terms of getting care. They are the ones who mainly provide for the family; hence their health becomes more important. Delays were also seen in care seeking in the elderly population. The main reason for this was financial barriers. The children of the elderly would pay for their care if they had the money, but elders argued that the money could be better spent on their grandchildren's education because their children were not rich. Low socioeconomic status was also a barrier 37

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that affected TB care seeking. Those who are poor cannot pay for the care they need. There was also a connection between the poor and the uneducated. Usually women, elderly, and those who come from poor families are the ones who have the least education and end up with the least lucrative professions (if they end up working for wages at all). There was also limited health literacy about TB in this province so many people did not realize they had the disease. People indicated that they would have sought care earlier had they known more about the disease they had. Those who were able to utilize a subsidized TB program were supposed to get a break on the cost, but many complained that they still ended up paying more money than they could afford. Another barrier is that TB is diagnosed poorly, so people go for long periods of time having the disease and not knowing they have it. As is seen in literature focusing on health seeking behavior for other illnesses, TB care seeking behavior and access to TB care is found to be related to "the socioeconomic status of the patients including family income, occupation and medical insurance" (Xu et al. 2004: 146). Socioeconomic barriers have also been found to be problematic in other parts of the world when looking at TB control programs (Farmer 1999; Needham et al. 2004). 38

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Agency Some perspectives are more apt to emphasize the individual over the structure of society in terms of health decision-making. Cognitive theory provides a conceptual framework for many studies focusing on decision-making that use an agency-focused perspective as a guiding principle (Garro 1998a & b, Bauer and Wright 1996, Debacher 1979). The underlying assumption of classic ethnographic cognitive studies is that when members of a group are faced with a multitude of choices for any particular decision, they will tend to have a common set of rules, shaped by shared understanding of the world they live in, that guide their decision making choices (Goodenough 1963; Quinn 1978; Young 1981 ). In terms of medical decision-making, cognitive ethnographic studies aim to explain how individuals make decisions about seeking care for illnesses (Garro 1998a). Deciding whether or not to seek care in this perspective is more focused on individual cognition, with less emphasis on practical concrete barriers and facilitators that could influence individual action. It has been argued that theories that focus on decision-making fall short of explaining all ofthe social constraints that affect individual choices (Good 1994). Decision-making theories assume that people are free to make decisions as they choose when in fact there are several barriers that are outside of an individual person's control that influence the types of decisions that can be made. Garro 39

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( 1998a) disagrees with Good ( 1994) that decision-making theory cannot be used to explain social constraints. She argues for a perspective of"human cognition that is both flexible and grounded in social processes" (Garro 1998a: 323). This perspective does not exclude social constraints in the decision-making process. Health care decisions, she argues, have a "pragmatic cast," but "a decision-making approach does not necessarily entail a formulation of culture as 'practical reason' grounded in 'utilitarian calculus' in the way that the writings of Good (1994) and Brodwin (1997:73, 82) suggest" (Garro 1998a: 323). Although cognitive studies of decision-making can, as Garro (1998a) argues, be inclusive of social processes, this thesis looks more towards understanding decision-making through an ecological lens. Rather than focusing on identifying cognitive maps that underlie decision-making, I am more interested in identifying the various factors that exist for the people living on Pine Ridge that influence the type of care they seek and affect their ability to seek care and receive quality care once they decide what type of health care to use. Arthur Kleinman's use of"illness narratives" which focus on identifying "explanatory models" of illness is an important contribution to understanding treatment choices in a medically pluralistic world (Kleinman 1988). By uncovering locally shared "illness idioms," he argues that treatment choices can be understood in terms of individual belief systems. Explanatory models are utilized to identify "cognitive maps" so as to uncover "the cultural flow oflife experience" (Kleinman 40

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1988: 122). In terms of patient decision-making, Kleinman's model helps the doctor/patient relationship, in that a better understanding of illness can be elicited and decision-making can stem from an area of common understanding between the physician and the patient. The way that patients explain their illness sheds light upon the "pragmatic elements" of their belief system, so as to bring the conceptualization ofthe symptoms to a more concrete level (Pelto and Pelto 1997: 153). While this model is more of an interpretive anthropological approach, it can be helpful in eliciting the variety of influences that are faced by individual decision-makers when deciding whether or not to seek care for specific illness episodes. Kleinman's book The Illness Narratives: Suffering, Healing and the Human Condition, examined expressions of illness in China when looking at patients' perceptions of an illness called neurasthenia (Kleinman 1988). The symptoms of neurasthenia include exhaustion, stress, depression, anxiety, somatization disorder and other disorders describing the connection between psychology and bodily expressions of illness used in the United States and Western Europe today. It is the most common psychiatric diagnosis in China; therefore, it is an important category to understand when treating Chinese patients. Neurasthenia is a general term that encompasses many bodily and emotional complaints, such as chronic fatigue and weakness, and is thought to be associated with neurological causes. It is a useful label for illnesses related to various "stress symptoms" in China because in Chinese culture there is significant stigma attached to mental illness. Expressing symptoms 41

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of distress in bodily ways legitimizes the symptoms, but does not attach the stigma of mental illness. In the U.S. "stress disorders" have become the catch-all term used to explain these symptoms and decrease stigma attached with mental illness, but it has not been adopted in China because of historical and cultural conditions that favor neurasthenia as a useful explanatory concept. Historically, in China, mental illnesses were thought to express political disdain. Depression is thought to take away from someone's ability to participate in group political activities because it conveys alienation that is unacceptable in some communist countries. Neurasthenia is also a concept that has been integrated nicely into the existing Chinese medical framework because it is concerned with vital energy flow (qi), which is associated with problems ofweakness or fatigue, and in the balancing between yin and yang. In Kleinman's comparison of neurasthenia symptoms between China and New York, both patients' illness models had a place for family life, personal problems and work in their explanations of symptoms, which indicates that outside forces are very important for understanding the full scope of the illness affliction no matter where these individuals are in the world. Kleinman also examined neurasthenia in terms of larger political forces. There are major differences in the cultural, social and political situation between China and the U.S., which complicates the issue ofhow the individual will express their symptoms and how best to intervene. Yen, the woman from China in the case he describes, is stoic about her illness and has a sense of enduring her personal problems because of Chinese 42

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cultural norms, whereas Eliza, the woman he interviews in New York, expresses her illness in terms of psychological and emotional issues that can be changed with the right treatment. Yen is more focused on expressing her illness through social situations in her life, and Eliza focuses more on her inner being to explain her symptoms. That is why psychotherapy would be appropriate as an intervention for Eliza, but not for Yen. Social interventions focusing on family and work situations would be important for both patients. Chronically ill patients, like Yen and Eliza, could benefit from several therapies, but the structure of the societies in which these women reside does not allow for all the necessary interventions to take place because of ingrained cultural, social, and political beliefs that are not easily altered. Cultural forces are among the external factors that can influence decision making. A concept that has been utilized to describe the pathways that people follow in order to seek care is hierarchies of resort, or more recently strategies of resort, which refers to the cultural logic that guides health care decision-making (McElroy and Townsend 2004: 336; Romanucci-Ross 1969). In the earlier studies by Romanucci-Ross in Melanesia, "first resort" cures (where the individual turned to first) most likely involved traditional therapy, and "last resort" cures involved Western biomedical medicine. Basically, the argument is that individuals make decisions about seeking care based upon a particular order (hierarchy) that follows a cultural logic about the cause of an illness, the diagnosis of that particular illness, the treatment believed to cure the illness, the severity of the illness, the ethnic group the 43

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individual identifies with, their class, and the level of education they have (McElroy and Townsend 2004). Some researchers have sought to lessen the conceptual gap between structure and agency by examining how both concepts relate to decision-making and social change. The following section will address the theoretical debate of structure and agency as discussed by Pierre Bourdieu, and it will examine studies that expand their explanations to include "webs of influences" that affect decision-making. The Complex Interplay Between Structure and Agency Bourdieu and Practice Theory Pierre Bourdieu has theoretically examined structure and agency in his 1972 publication Outline of a Theory of Practice (and in subsequent publications on this matter; see Bourdieu 1990). He focused on identifying the routine aspects of daily life that exist within objective structures in society. With practice theory, Bourdieu is able to transcend objectivity and subjectivity. Practice emerges when the individual acts within the confines of collective symbolic and material structures, but the individual is not solely immured by these structures, she has agency to act within these structures to reinforce or resist them (but most likely to reinforce them). Although still following a very structuralist formula, Bourdieu incorporates the agent into his analysis of social structure. Bourdieu uses the concepts of habitus, doxa and 44

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hexis to explain how inequalities are reproduced in society (Bourdieu 1990). The taken for granted aspects of daily life, called habitus, are grounded in habitual bodily arrangements, called hexis. Structured inequalities are reproduced within the habitus. By internalizing inequalities in a subjective state, they become objectively manifested in the habitus. The internalized structures within the elusive aspects of habitus, called doxa, reproduce inequalities because the classifications and rules by which doxa is based tends to be hidden from open awareness or critique (Bourdieu 1990). Through the interaction ofhabitus, hexis, and doxa, a sense of"natural" time and action is established (Bourdieu 1990). Time becomes divided by an internalized tempo that supports status oppositions, fights for honor, and the strategic use of economic and political capital. Social, symbolic, and cultural capital are established through the "naturalized" negotiation of situations in society that are recognized as actions that increase one's status within a group. For instance, offspring of parents with an extensive amount of social and economic capital have influence to get their children into prestigious schools and universities. This situation is internalized as the "natural" course for their children, when it is not natural at all. Along with being passed off as natural," there is unequal access to these types of capital, which leads to the reproduction of the internalized notions of inequality. Knauft ( 1996) eloquently summarizes Bourdieu's perspective: 45

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Bourdieu suggests that individuals in positions of dominance receive disproportionate opportunity to practice and absorb "the rules of the game." They become effective strategizers. Indeed, their advantage is strongest when their strategies are deeply internalized; they appear to have that intuitive feel for success. As such, their acquisition of status through grace, style, and decisive confidence seems at once automatic and natural. Those who are disadvantaged, on the other hand, labor like workers in a contest of privilege whose rules they cannot effectively know; they follow the conservative and plodding "doxa" of mundane social life. Precluded from playing effectively in the game of status acquisition (much less overturning it), they are doomed to an ineffective habitus that reproduces the conditions of their own domination (Knauft 1996: 113). Modes of domination are established and maintained as a result of these processes. For Bourdieu, habitus is a system of structured structures that function as structuring structures (Bourdieu 1990). He does believe that there is some agency for social change within these structures, but agency is defined and delimited by the structures of habitus. Theories on practice are trying to explain the relationship between action and the elusive concept of structure, and can encompass issues of power relations as a modifying factor for whether action can actually make a change within the existing structure. In practice theory, the system that is spoken of is "a relatively seamless whole" (Ortner 1994: 392). The whole system does not need to be broken into parts to compare binary opposites, as in structuralism. Practice seeks to explain the workings of the whole system. But the system is not seen as equal at all levels. Rather it is a system that has inherent inequalities built in, as in Bourdieu' s discussion of social, symbolic, and cultural capital. By understanding the interplay 46

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of structure and agency against a backdrop of unequal relationships in society, a better understanding of an agents' ability to affect societal change can be understood. Situating this struggle within an ecological model will explain more of the specific factors involved in constraining and assisting individuals in affecting social change. In terms of the information gathered in this thesis about health care seeking behavior on Pine Ridge, I argue that people living on the reservation exercise agency in several ways, but because of structural constraints, people ultimately end up complaining about their situation since their efforts, more often than not, fail. Some people get what they need to take care of issues in the short-term, but the long-term issues are left unchanged, and end up becoming a problem for the next person. This end result of complaint without social change would be predicted by Bourdieu's theory of practice. Individual agents have some affect on social change, but for the most part, their actions just reinforce the existing structures that hinder their health care seeking efforts. Contextualized Decisions In any given situation, there are a number of factors that affect decision making. Looking at in-depth case studies of two women in Vietnam, Whittaker (2002) shows what factors influence these women in making health care seeking choices surrounding evidence of vaginal discharge, and how their choices are pragmatic in the context of their situations. The author has two years of in-depth 47

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ethnographic data that support the conclusions made from the case studies in this paper. In this study, she concludes that: The practice of managing vaginal discharge is mediated by concepts of body, self, and the body politic in Vietnam, especially regarding women's bodies and reproduction from the family, religion and political systems (Whittaker 2002: 55). There exists a "web of influences" that affects the choices that these women make when faced with vaginal discharge, and there are "multiple forms of reasoning" that occur each time a woman is faced with this particular health situation (Whittaker 2002: 43, 55). Some of the influences identified in this study that affect the decision to seek care in the face of vaginal discharge are: 1) the woman's concern with working and contributing financially to their families, 2) maintaining familial harmony, 3) and having an understanding of why she has vaginal discharge, which influences which treatment she seeks, when to seek care, and how long she should pursue treatment (Whittaker 2002: 54). All these influences in some ways are mitigated by the ability a Vietnamese woman has to make the choice to seek care. Many women indicated that they were not always able to decide and act of their own accord. Constraining factors included "body politics, gender relationships, health care management and economics, and social norms of cleanliness, family life and the boundaries of acceptable behaviour" (Whittaker 2002: 54). Ryan's (1998) looked at treatment choice sequence in a Cameroonian village and found that initial delays in seeking health care for acute illnesses were found to 48

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occur because laypeople were trying to minimize the uncertainty involved in the illness episode By waiting, a better understanding of the symptoms could be assessed, and more time would be allotted for deciding which health care options to choose. Ryan's model also found that laypeople minimize cost by seeking care that is less expensive, or by seeking only a limited number of treatment options. A third finding in this study was that people used a variety of treatment options to maximize the chances that their illness would be cured. This model is argued to be relevant in medically pluralistic "settings where people face constraints of time and money" (Ryan 1998: 222). He also argues that the three tenets of this model interact in various ways, guiding decision-makers, but not predicting "any single organizing principle" for their decisions (Ryan 1998: 223). Interactions are determined by "the circumstances of the illness and the social and economic conditions of the patient and caretaker" (Ryan 1998: 223). In earlier developments of decision-making models in anthropology, there was a focus on cultural belief systems as the determining factor for people's behavior (Pelto and Pelto 1997). The seminal study by James Young ( 1981 ), Medical Choice in a Mexican Village, shed doubt on this assumption. Through an analysis of various illness episodes in this medically pluralistic society, Young clearly showed that decision-making had to do with more than just cultural beliefs. It has to do with the seriousness of the illness, knowledge ofhome remedies, trust in the medical practitioner, and access to money and transportation. This shifted the focus in health 49

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care decision-making studies from solely including abstract cultural analysis to also including an analysis of more complex ecological factors that affect decision making, e g., Young 1981; McElroy and Townsend 2004. This framework added an emphasis on environmental, material, economic and political constraints that affect decision-making. In this developing perspective, the individual is seen to have agency in the choices made; they are not seen as passively acting out local cultural beliefs. There is a negotiation of a variety of factors that exists for individuals and communities when making health care choices, and resulting behaviors vary even within cultures (Pelto and Pelto 1997). Janzen's (1987) examination of medical pluralism and the use of the concept "therapy management" is also an important development when looking at decision making in health related instances. Larger forces are taken into account when trying to understand these choices. Originally, Janzen used this term in the book, The Questfor Therapy in Lower Zaire in 1978. The approach Janzen took differed from the "new ethnography" of the time, promulgated by Charles Frake and others, that "paid little attention to the decision-making process" and "to the social context of decisions" (Janzen 1987: 73; Frake 1969). Janzen's therapy management concept also differs from Romanucci-Ross's concept of hierarchies of resort in that it describes the steps for managing therapy as more fluid and less hierarchical. Among the Kongo in Zaire, 50

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Successive episodes of a therapeutic process are not as crisply determined by prior logics as "hierarchy of resort" would suggest but are open to ad hoc questions and issues that may arise in the midst of a case (Janzen 1987: 69). This is a much more useful concept for analyzing health decision-making because it provides another way oflooking at choice that takes into account the larger environment. In comparing data from Zaire and Quebec, Janzen and colleagues found that physical signs of illness commonly pointed to "wider social, psychological, or lifetransitioning crises" (Janzen 1987: 71 ). In the Quebec cases, it was found that when a member of the nuclear family was seriously ill and taken out of their familial role, a crisis arose. The lack of familial social support in nuclear families might not be as much of an issue among the Kongo in Zaire, but the Kongo have their own issues that arise during "lifecourse transitions" that cause social crises and distress for the sick person and their families (Janzen 1987: 73). In both sets of data, Janzen found that those individuals who were ostracized from their kin sought refuge in a nonfamilial social support system. In the Kongo, a man with chronic asthma moved from his village to live with a prophet because he believed his asthma was caused by living with members ofhis own lineage, and in Quebec, an alcoholic man joined Alcoholics Anonymous because his family and social ties were broken and he needed support to live an alcohol-free life (Janzen 1987: 73). Janzen and colleagues concluded that a theoretical perspective that sought to grapple with the complexity of 51

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the issues that arose during illness episodes had to simultaneously look at the "range of persons, classes, issues, and perspectives [that] had a bearing on the case" (Janzen 1987: 73). Therapy management is a middle range theoretical concept that can be more useful for understanding decision-making than more individually-focused theories that emphasize individual agency, and give less or no emphasis to the social context of decision-making. Harwood argued that therapy management is a "middle range" theoretical formulation between the micro-level of the individual sick role, the clinical and ritual process of healing, and the macro-level of political systems, institutions, and societies (Harwood 1978, cited in Janzen 1987: 77-78). Both Janzen and Kleinman conclude that there are larger factors that affect decision-making, and that there are outside forces that are expressed with physical symptoms of illness (Janzen 1987, Kleinman 1988). Janzen focuses more on uncovering who actually is controlling the explanatory models that Kleinman reveals through illness narratives. The "Three Delays" Model A more pragmatic discussion of structure and agency can lend itself to an understanding of the issues discussed in this thesis paper. Bourdieu's theory of practice is helpful in explaining the reasons why it is difficult to change situations when examining health care decision-making, but a more concrete way oflooking at the issues that surround health care seeking is through the "three delays" model 52

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(Barnes-Josiah et al. 1998). Barnes-Josiah et al. (1998) have used this concept as a way of framing the issue of maternal mortality in Haiti. This framework can be helpful in other areas of health care seeking behavior as well, for example, it can be applied to Pine Ridge to explain the varied reasons for delays in treatment actions and behaviors. The first delay in this model addresses the time when an actual decision is made to seek health care. This delay can result from cultural beliefs and influences, social status, "hierarchies of resort," personal beliefs, lack of childcare if one needs to leave town, and degree of severity of symptoms. It is not solely the individual agent that makes the decision to seek care. Sometimes it is the community that makes the decision, or it could be someone ofhigher social status within the family. This delay can also be influenced by structural constraints in society. For instance, on Pine Ridge, many people are poor. If they are required to go off the reservation for specialty care, they may choose to delay seeking that care because they are concerned about the financial hardship they may incur for transportation and possibly medical bills to pay for the costs not covered by IHS. The second delay involves traveling to a clinic or healer after the decision is made to seek help. This delay might be caused by transportation problems, financial problems, bad weather, and/or poor community infrastructure. It may be difficult for individuals or families to find a ride or the money to pay for gas to get to the hospital when they decide to finally travel there. It is much more difficult for the individual 53

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agent to change this second delay in care seeking, especially for poor individuals who cannot purchase a car or gas to travel with as readily as someone who has more money. The third delay is receiving quality care once the clinic or healer is reached. This can rest on a personal perception of care, and may be affected by discrimination or racism, lack of a connection with the practitioner, or a belief that the care being received is inadequate. Quality can also be measured by observing the condition of the facility, and by how much money the facility has to treat patients per capita in relation to the types and costs of the most common diseases at that particular facility. The study that was done by Bames-J osiah et al. ( 1998) using the "three delays" model in Haiti provides a framework for understanding the variety of factors affecting maternal mortality. Using "verbal autopsies" and "social autopsies," researchers were able to find out the medical and social circumstances that surrounded each death (Barnes-Josiah et al. 1998: 984). Verbal autopsies were conducted with close family members, and consisted of a structured list of the existence and timing of medical symptoms before the woman's death. Social autopsies, which were more open-ended discussions about the social circumstances that were happening before the woman's death were conducted more with friends, neighbors and birth attendants. Of the twelve mortality cases examined in this study, eight of the situations resulted in an initial delay in seeking medical care. A lack of confidence in the medical options available was said to be a major determinant in the 54

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initial delay to seek care. Two reported delays in transportation, and seven cases reported inadequate health care once at a medical facility. All of the women in this study were reported to have multiple delays during the obstetric emergency. They found that: Typically, families must balance the time lost in domestic labor and child care, the costs of transportation, services, meals, bribes and fees, and the emotional stresses of travel, with the dubious benefits of unproven care. In most cases, crucial decisions on the expenditure of scarce resources were made under the influence of the oppressive poverty in which these families lived (Barnes-Josiah 1998: 987). While maternal mortality can be measured in terms of mortality ratios, using this model to understand the variety of ecological and structural factors that affect an individual's ability to seek care in general is more complex and less easy to measure accurately. The "three delays" model can be useful in examining ecological factors influencing health care decision-making in general, not just in emergency cases. In this thesis project, delays in seeking health care were not measured specific to an emergency situation. The analysis includes a broader exploration of eighteen individuals living on the reservation in terms of understanding how they decide to seek care, how they get to the clinic once they decide they are sick, and whether they receive what they perceive to be quality care once they get to the health care provider. 55

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Going Beyond Emergencies and Specific Illnesses Decision-making during emergency situations does not provide information on general health care decision-making that goes on everyday for the larger population, although the "three delays" model can be a useful framework for conceptualizing all of the issues faced by those making health care choices (Barnes Josiah et al. 1998). Also, looking at specific illness episodes can be useful in uncovering decisions made for a certain case in a particular time and place, but pulling back from these specific cases and finding larger factors that affect decision making about health care seeking in general will be helpful in contributing to overall theories and models of health decision-making. Information that is general and information that is specific to a particular group of people for a specific illness are both useful in getting an overall picture ofhealth care decision-making. Although this thesis is a small study, it does look critically at some of the macro factors, discussed in the CMA approach, that affect decision-making on this reservation. It contributes to the literature that critically analyzes American Indian health and illness. Overall, this thesis utilizes ecologicaf theory to understand the factors that emerged regarding health care decision-making during semi-structured interviews done with individuals living on the Pine Ridge Indian Reservation. Ecological theory is a broad framework with which to situate general patterns of health care decision-making that have been identified by people living on the 56

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reservation. lbrough this framework, some of the aspects that are examined in the CMA approach will be revealed and discussed. These findings are not intended to explain all decision-making that occurs in terms of accessing health care on and off the reservation. Rather, they are a starting point for understanding the issues that individuals living on the reservation are concerned with when deciding whether or not to seek care at the IHS or other Western health care facilities. Theoretically, this study can be framed in an ecological context to better understand the constraints faced by Lakota when trying to seek health care. The structure versus agency issue will also be grappled with in hopes of understanding the myriad factors involved in decision-making that affect the ability of an individual agent to make change. As this is a small study, it is not meant to be exhaustive of all the possible decision-making processes. It is a descriptive study that can be used as a springboard for further inquiry into health care access issues, and hopefully begins to assist in informing policy-makers of the variety of factors that affect decision making in this particular Lakota community. This study will contribute to the literature because most of the literature on this topic focuses on developing countries. Not much information is available for access to health care and decision-making among American Indians in the United States, despite the disproportionate incidence of various diseases compared to the general U.S. population, and even compared with minority groups in the U.S. The reason for this lack of attention might have to do with the general assumption that 57

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American Indians have "free" health care via government funded health centers, and because they are geographically situated within the borders of the wealthy United States. With rising chronic and serious illnesses on reservations today, federal monies do not cover all the expenses necessary to prevent and treat these diseases. Lakota people on Pine Ridge are confronting similar situations when making the decision to access health care as those living in developing countries all over the world. This study seeks to give some attention to all of the factors that affect health decision-making on Pine Ridge, with the hope of being able to situate these factors within a larger ecological framework that teases out the structural constraints and facilitators that affect individual agency when deciding to seek care. This is important in terms of assisting health policy-makers in narrowing down areas to focus on for change at the structural level. Much of the policy debates in this area focus on trying to change the behaviors ofthose seeking care (Ryan 1998). I am proposing that policy-makers look critically at the structures that bind people when making health care decisions. My orientation is that we should seek to change some of the constraining factors that keep people on Pine Ridge from getting the care they need and deserve. 58

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CHAPTER4 METHODOLOGY Study Design: Mixed Methods This project uses a mixed method approach because using both quantitative and qualitative methods can help tease out the issues in a more comprehensive way. Those that advocate for this type of methodology follow what is called the "fundamental principle of mixed methods", which states that researchers should use mixed methods in a way that utilizes the strengths of both approaches while minimizing their common weaknesses (Johnson and Christensen 2004). The strengths of quantitative methods include: the ability to test hypotheses already formulated before entering the field; generalizable findings; hard numerical data; less time analyzing findings; the ability to work with large numbers of people. Statistical data has more clout amongst those in power, for example, those that are in decision making positions, possibly project funders (Patton 2002; Johnson and Christensen 2004 ). Some of the weaknesses are that categories and theories used in research might not reflect local understandings, the researcher might lose sight of the nuances because of focusing too much on theory or hypothesis-testing, and the information 59

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gathered might be too abstract to apply in local contexts (Patton 2002; Johnson and Christensen 2004). Qualitative research also has its strengths and weaknesses. In general, qualitative methods use locally-appropriate meanings for categorizing; they are useful for looking at smaller numbers of in-depth case studies; they tend to illuminate nuances; they provide detailed accounts of personal experience in local contexts; they are useful when studying dynamic processes because they are flexible, that is, the focus of study can change as situations arise in the field that redirect the study towards more relevant data collection; they can be used to interpret local constructs; they are responsive to local needs; they provide a better strategy for attaining information about how and why a phenomenon occurs; and pertinent illustrative case studies can be used to demonstrate a main point when reporting findings (Patton 2002; Johnson Christensen 2004). There are weaknesses to this approach as well: findings might not be generalizable; qualitative predictions are more difficult; it is much more challenging to test theories and hypotheses; it is more time-consuming to collect and analyze data; there is more chance that the results are influenced by personal bias and interpretation; and some funders and program organizers think qualitative data is less credible (Patton 2002; Johnson and Christensen 2004). Using both methods increases the chances that more information will be gathered on the topic at hand, and, because it utilizes the principle of triangulation, 60

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conclusions are more reliable (Patton 2002; Teddlie and Tashakkori 2003). More in depth case studies can give meaning to the numbers generated in statistical research, and vice versa, numbers can give a more precise look at issues illuminated in narratives. In some cases, it can be used to generate information in the initial stages of a project to better direct the design and purpose of the study, it might help for generalizing findings, and because quantitative and qualitative data provide more complete knowledge of a particular topic, it will better be able to inform theory and practice (Patton 2002; Johnson and Christensen 2004). There are also some limitations to this method. It is difficult to carry out alone. Several researchers need to collaborate, especially if both research methods are to be done concurrently. Mixing methods can be much more time-consuming than either one of the approaches used individually. It is more financially costly than any single method, and the research methodologies for this approach have not been extensively explored, so there may be some difficulty when putting it into practice (Patton 2002; Johnson and Christensen 2004). Mixing methods can be thought of in terms of a continuum, from "monomethod" to "partially mixed", all the way to "fully mixed" methods, and can be classified according to "time order" (concurrent or sequential) and "paradigm emphasis" (equal emphasis or focusing on one method over the other) (Johnson and Christensen 2004). This project used partially mixed methods in a concurrent time order with more emphasis on the qualitative than the quantitative data. The 61

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quantitative data is used more as a way to explain the qualitative data, than as an element of predictability. The design of each part of the study will be discussed below. Qualitative Design I conducted eighteen in-depth interviews specifically about health care access issues. Each interview lasted an average of forty-five minutes (with a range of thirty minutes to three hours). I probed several topics using a critical incident technique (CIT) (Flanagan 1954; Kemppainen 2000; Rosenal 1995). CIT is a method that is used to uncover memorable situations (remembered as positive and negative events) that are relevant to topic area of interest. In this study I asked participants to tell stories about accessing health care and treatment when they had positive experiences, as well as stories about negative experiences when accessing health care facilities and other health seeking behaviors. The interview guide was semi-structured in order to allow participants to fully develop their accounts in a conversational format (See Appendix A for the complete interview guide). I generally started the interview by probing into the last time the person was sick to get them talking about their experiences and then link their experiences to the general questions of health care access. Then I tried to get people to talk about overall patterns of what they normally do when they are sick, who they see (if anyone), what they do, what issues came up when trying to get 62

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health care and healing, what types of care they seek and why (Western medicine vs. Lakota healing), what their experiences have been (positive and negative) with health care systems on and off the reservation, what they do to help others get care when they are sick, and what recommendations they have to overcome some of the obstacles they face. Each participant in this portion of the study had already signed an informed consent during the year they participated in an initial random household survey conducted by Dr. Kathleen Pickering at Colorado State University. They were each compensated for participating in the health care access interview, and all interviews were recorded on a digital recorder. Overall participants were willing to talk and interested in discussing these issues and their concerns. Quantitative Design The quantitative portion of this study was conducted within Dr. Pickering's larger seven-year economic survey. I collaborated with Dr. Pickering's project by developing specific questions about health issues to add to the already existing household survey instrument that has been used for the past five years on the reservation. A total of 240 survey interviews were conducted over the summer of 2004 (sixty new randomly selected household surveys and 180 follow-up surveys). A variety of student research assistants, including me, carried out the surveys. Health questions were added to the questionnaire delivered to new random 63

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households, and other health-related items were added to one of the versions of the follow-up survey. Concern about the burden on respondents of a long encounter required that we split out the questions between two versions for the follow-up surveys. In the summer of 2005, sixty new random surveys were completed and 240 follow-up surveys. Those individuals that were not asked the health questions in 2004 were asked those questions in 2005. The data from 2005 was too recently gathered to be included in this analysis. Actual population (N) values are indicated in Figures 5.1 and 5.2 located in chapter five. For the purposes of this study, I only included survey data based on answers to two questions related to accessing Western medicine and Lakota medicine. Sampling Strategy The qualitative portion of the study used convenience sampling that is also purposive in the sense that participants were chosen based on their interest in talking about health issues on the reservation (Patton 2002). Convenience sampling is a rapid and inexpensive method, and often used by researchers who are using sample sizes that are too small for generalizations (Patton 2002). Those using true convenience sampling do not have any criteria for choosing participants. I did not select participants solely based on convenience. I chose participants based upon their response to a question on the follow-up surveys in 2004 asking if they would be willing to participate in an interview on health care access issues on the reservation. 64

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If the individual answered yes, I would contact them at a later date as time permitted. Survey participants who were interested provided their phone number for future contact for the health access interview, or else they agreed to conduct the interview that day or made an appointment for another day in the week. In 2005, I contacted some of the people that had agreed to participate in the additional interview from 2004, and the remainder of the people I solicited during surveys that I conducted in 2005. The sampling strategy for Dr. Pickering's household surveys is random probability sampling stratified by district on the reservation (Patton 2002). Dr. Pickering's current survey has been administered for the last five years, and I worked with her to add new health questions to the random household survey instrument and the follow-up survey instrument. Residences on the Pine Ridge Reservation have already been mapped using GPS coordinates for the purposes of Dr. Pickering's household interview selection. From these coordinates, random locations are chosen and recorded so as to not repeat the same residence twice, except for follow-up interviews, which occur each subsequent year until the seven-year study is completed. Study Sample Eighteen individuals participated in the qualitative interviews for this thesis. The study sample consisted of twelve (n=12; 66.7%) females and six (n=6; 33.3%) 65

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males. Ages of participants ranged from 33 to 82 with a mean age of 53.9 and a median age of 53. The highest level of education attained by respondents ranged from an 81h grade education to a Masters in Nursing. Only one (1) person or 5.6% of respondents had an gth grade education, two (2) or 11.1% received their GED, two (2) or 11.1% graduated high school, and there was an additional six (6) or 33.3% of respondents who completed some college courses (between 1-4 years), but did not attain a higher degree than their high school diploma. One (1) or 5.6% completed an Associates degree, five (5) or 27.8% completed a Bachelor's degree with two of the five also having two Associates degrees each and one individual completed one year towards a Masters degree. Only one (1) or 5.6% of respondents completed a Masters degree in Nursing. The mean number of people living in each household is five (5), with a range of two (2) to nine (9) person's per household, and a mode of two (2) person's per household. Average reported yearly income of ranged from $4,400 to $102,000 with a mean of $26,054, and a median of $18,900. In comparing my study sample with Dr. Pickering's random household survey sample in 2004, it is notable to mention that our samples were similar on several variables: gender, mean number living in the household, mean yearly household income, and several of the categories indicated in the highest level of education completed. The mean age of participants differed slightly (53.9 verses 44.6 in the larger sample), and a few of the education levels also differed between 66

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our samples. See Table 4.1 for a comparison between my study sample and Dr. Pickering's random study sample in 2004. My Study Random Sample Sample Gender (N=18; 227 respectively) Female% 66.7 71.3 Male% 33.3 28.7 Mean Age (N=18; 227) 53.9 44.6 Mean Number living in household (N=18; 223) 5.0 5.6 Mean Yearly household income (N=18; 219) $26,054 $21,229 Highest level of education completed W) (N=18; 217) 3rdGrade 0 0.5 5111 Grade 0 0.9 6111Grade 0 0.9 7111 Grade 0 1.4 8111Grade 5.6 4.6 9111 Grade 0 6.9 10111 Grade 0 4.6 11111 Grade 0 7.8 High School 44.4 41.5 GED ll.l 13.4 AA 5.6 2.8 BA 27.8 13.4 MA 5.6 1.4 Table 4.1: Comparison of Study Sample with Random Household Sample in 2004 67

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Analytic Techniques Quantitative analysis was only used for calculating percentages for two questions on the household survey instruments, and to attain household characteristics of the quantitative and qualitative study samples. The focus of this study was on the qualitative data, which was analyzed using transcription and coding. The majority of the interviews were fully transcribed. I also referred back to the notes that a research partner and I took during the interviews for clarification on words and themes that had emerged. After the transcriptions were completed, the data were imported and analyzed using ATLAS.ti software, version 4.2. Several initial codes were assigned, but during the review of transcribed material, those codes occasionally changed or became more specific to the analysis. Themes were then drawn from the codes that emerged during the interviews. The stories and quotes that were coded were then used to illuminate the themes that emerged during the interview process to explain the findings of this study. Study Limitations Using a convenience sampling technique has its drawbacks. It might not account for critical cases that can be crucial in explaining the variation in health care access issues. Also, everyone who participated in the qualitative interviews were interested in talking more about their health care access experiences, which means 68

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that the sample excludes those that are not interested in participating, even if they had interesting health situations in their answers on the survey. The quantitative portion of the study has its limitations as well. Questions that were added to the survey could have been more focused on decision-making and health care access issues. Most of the questions that were added to the survey were not utilized in this study because they were general illness questions that did not lend enough data about the access story. Also, while conducting the surveys, it was my impression that when people were answering questions about illnesses in their household and extended families, they may not have known exactly what illnesses people had in some cases, or were not willing to reveal information about stigmatizing illnesses, such as alcoholism, drug abuse, or mental health problems. From my experience asking the health questions on the survey, it seemed more likely that people in the extended family were alcoholics, abused drugs, or had some diagnosed mental illness, rather than those who were reported to be living within the household. That may have been the case because the person being interviewed might not want others in the house to overhear the information given, or they may have been embarrassed that someone living with them had such problems. Another possible issue is that the terms used for illnesses might not have been understood in the same way as I had intended when I developed the questions. This issue was brought up in one interview with a woman who had worked as a nurse at the Indian Health Service for a number of years. She thought that the questions we 69

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asked about the number of certain illnesses in the family were unfair and could be interpreted differently from their intended purpose. In reference to these health questions, she said: You're putting everything into a category, and, we don't categorize anything ... Everybody is depressed, you know? You can't tell me you're not. Whether it's diagnosed or not. Everybody has it, and everybody has bronchitis at one time or another, and that's right under COPD [chronic obstructive pulmonary disease] ... And it all goes under that category. Even a cold falls under that category. See, so if you're going to be working on Indian Reservations, those categories don't count. Maybe it does on the outside world, but it doesn't here. The possibility that illness categories were misunderstood is a limitation to the survey portion of the study. It could be possible to tease out these issues in a better way and improve on the survey instrument by using more in-depth qualitative interviewing. Finally, it could be argued that the small sample size for the qualitative interviews is a limitation, but because I achieved saturation of the themes that emerged during the interviews, sample size does not appear to be a limitation of this study. 70

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CHAPTERS FINDINGS In my eighteen interviews with residents on the reservation, their responses to open-ended questions helped me explore how people make decisions about when and who to go to for health care. Quotes from my informants illustrate influences on how people make decisions about accessing Western medicine on the Pine Ridge Indian Reservation in South Dakota, and what challenges they face when they seek health care. Themes that emerged from those interviews point to a variety of factors that influence decision-making. I classify these factors in the categories of: doctor/patient interactions, past experiences as factors that affect perceptions of care, bureaucracy, culture, and finances. These are discussed in detail in this chapter. Doctor/Patient Interactions A positive interaction with a health care practitioner is an important aspect of deciding whether to seek care from a particular person or facility. If the doctor does not believe that the person has a problem, the patient is less likely to go back to that person, especially if they feel that there is something wrong and it needs to be dealt 71

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with. Yet because many people in poverty do not have the option of choosing another doctor or clinic/hospital to go to, they may end up still going to the facility in which they had a negative experience. This will not be out of choice but out of necessity. Some people will not go back to a particular doctor because of a bad experience even if they do not have any other feasible option. The following quote is from a woman with a rare neurological disease. She tried to continue her physical therapy in Pine Ridge, which is much closer than driving to Rapid City for treatment. And I was going to go to the, they have a physical therapist in Pine Ridge, but I called him up and just then he was leaving for vacation. He was going to be gone a month. So I told him what I had and that I needed to make some appointments to go up and see him. And he's like, "Well, that should have been over with in at least 6 months. Why are you still trying to say you're like this?" So I just never did go to him. I didn't want to go to someone who thinks I'm faking or something, you know. So I never did meet him or go see him after we talked. I just didn't want to go. Sometimes not going to any doctor at all is better than going back to someone you had a negative experience with, especially if you have other remedies that you can employ at home. Interviewer: How are you treated when you go to the doctor? Respondent: I'm treated pretty good. The emergency room is not though. They're inconsiderate, they're not kind. They kinda seem crabby almost. I don't like going there at all, if I don't need to. Which is part of the reason I took that First Response course. If I can handle something myself at home, I'll do that. 72

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Some people felt that the doctors who work at the IHS hospital on the reservation, are only there to pay back their loans from medical school, and that many do not care about the people they are treating. Sometimes alternative locations for medical care are sought, even if it means spending more money, just to get better care from providers. It settles their student loan, so people, they don't want to pay, they come out here and their attitude is, "Who cares?" The majority of all diagnosis is done with that attitude, who cares? It's not their fault, but as soon as they get their loans paid off, then they transfer over to a different hospital where they're more closely supervised. Here there is no supervision. Sometimes there's just not enough staff working on one shift to do a decent job anyway. So that's the kind of medical care that exists. This is what, my only experience, that I just finally gave up on it. And whether it costs a lot to go to Hot Springs medical center, to me it's worth it. You feel a lot more better. If you go locally, you feel worse after you get out of there. You're tired; there's no compassion that exists in there. Everybody is so business. Communication Another issue that was discussed was communication with doctors. Frequently, doctors are hired who have English as their second language. They have heavy accents that many people cannot understand, especially elders who may speak Lakota as their first language. Elders might be afraid to go to the doctor if they speak mainly Lakota because they might not understand what is going on with their procedure or they may not be able to explain their aches and pains to the doctor in a way that s/he can understand. The following story illustrates the problems faced by the elderly when trying to get health care on the reservation: 73

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The elderly people, a lot of them speak Lakota. And they have no interpreter over there. The younger generation, even if they did get one, they could still come up with a different diagnosis because the younger generation doesn't speak Lakota. And they have what we call the slang term. So the original language that the older generation speaks is way different. So the meanings end up differently. I'll give you an example of an elderly ... She had what they call, heartburn, stomach reflux, the acid reflux, but her condition was actually ulcers, and so she explained these things, but when you translate that ... Muckoo is your chest, but the painful area is the description that she gave. And she said it in a way that the guy that was looking at the patient says, "Diagnose her as upset stomach," and gave her a bunch of that, what do you call it, the white stuff in the blue bottle ... [Mylanta}. But the reality of it was that she was suffering from ulcers. And I've seen a lot of that because I did a lot of interpretation for the elderly people, because I still speak Lakota. I can't understand the original language, but I can understand the idle conversation, and their description of pain, and having a little knowledge by working in a hospital, and I would be able to match up the pain, or whatever was bothering them, and I used to do that in Denver too. The medical, the VA center, if somebody came in speaking Lakota, then they would call me and I would go up there and talk to them. And the doctor would tell me what their procedure was going to be so I would have to translate that back into Lakota. It takes away a lot of the fear ... It makes it easier for them because at least someone there understands. But here, we're right in the middle of Lakota country. They have no interpreter. And they just assume that, these doctors that come in, they assume that all of these people understand English. Others expressed concern about the doctor's accent in general: Sometimes they get some, what they call, rolling doctors, and they, some of them can't even speak English. It's real hard to understand them. Well first of all, if all of those doctors spoke like you guys do so you could understand them, you'd be alright, but half the time they put you somewhere and you can't understand what they're saying. You have to keep saying "What?" My mom was still alive and it was my tum to take her to doctor, so I went with her. And they put us in this little room and this doctor came in. I didn't understand a word he was 74

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saying. I don't know if she did. And they said, "Can we help your mom in any other way?" I said, "Yeah, put these people in there with somebody they can understand." They say, "I know." They just laughed. From this woman's experience with her mother at the hospital, it seems that the problem of understanding the physicians' accent is a well-known issue that ends up becoming a joke to the clinic staff. Communication and understanding between the doctor and patient is an extremely important factor that needs to be addressed if health care workers are to be able to actually help heal people's illnesses. Without understanding, there can be confusion with which medicines to take and why, which may lead to non-adherence with treatment regimens. Deciding whether or not to follow doctor's orders is highly contingent upon understanding what medication is being taken and for what reason. It also affects the perceived quality of care. It is difficult to make a connection with a patient if understanding is not attained, and patients may leave feeling disenchanted or upset, which may influence him or her to ignore the recommendations of the health care practitioner. The following quote is from the woman in the beginning of this section who has a rare neurological disease: But I went to see the neurologist last, it must have been last summer, and he doesn't really do nothin'; squeezes my fingers, I walked a little bit and that was all. They wouldn't tell me nothin' you know. But I don't know if he could you know. 75

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She did not get any information about her progress, possible interpretations of her situation, or even an explanation that told her they do not fully understand what is going on with her body. She ended up leaving the office feeling dissatisfied with their interaction. Then she blames herself for not being able to ask the right questions to the doctor: Probably if I could express my questions better, it would be better, but I never know how to ask questions. And then the things I ask the neurologist, he says, "Oh you have to ask your other doctor; I'm a neurologist". Then I have to remember to try to ask a regular doctor. I don't know what I'm supposed to ask him. Past Experiences and Percg>tions of Care: Spreading the Word About Health Care Experiences Past experiences with the health care system and Lakota medicine affect people's willingness to utilize health and healing opportunities on the reservation. There were numerous stories people told about mistakes that were made at the hospitals or clinics that deter them from using those services in the future. People report being given wrong medications, being misdiagnosed, or not being helped when they knew that something was wrong. Some felt that they did not get the care that they deserved overall. If it did not happen to the person I spoke with, there was always a family member they could tell me about who had a bad experience. The following examples illustrate the range of feelings people have about receiving care on and off the reservation: 76

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You hear of all these accidents that occur up there [at IHS]. Wrongful deaths and stuff like that that went on. You just don't want to go up there; you're scared to go up there; you're scared to take your kids up there. They might give 'em the wrong medicine. Give 'em too much of this. I had one of my aunts die up there. They didn't give her the right kind of medicine. She went in; she had a heart attack. They gave her something she was allergic to. And she died. So you kinda don't trust them, and it's reservation wide. So that it's hard to, I guess they have a hard time trying to prove themselves. Or they end up not doing anything for you at all, and you just get worse. Like him [her husband], he's had a hacking cough for maybe 3 years now, 2, 3 years. He just coughs and coughs and coughs until he can't breathe. But when we go up there and tell him, "Oh it's bronchitis, give him bronchitis medicine." It doesn't do anything." Well, it's an allergy. Give him allergy pills." Still the same. And he just got over an ear infection and something. They gave him medicine for that. Still coughing the same. There's something going on with him, and they won't refer him. So now with our jobs, he's going to get some kind of health insurance where he can go to an outside doctor to see what's going on. He coughs hard sometimes, he can't breathe, and then like he's gonna pass out. And none of us are like that, so it's not something that's in the air here. And I have asthma and I know how it is, and I don't cough like that. I have heard the most outrageous things. One friend called. He's in our age group. And he said that he had pain when he urinated, and that he had been to the hospital, and they had sent him home and told him it was nothing to worry about, and within a month, he was operated on in Rapid City for a very fast growing cancerous tumor of the kidney. They removed his kidney. They removed the tumor. He had a major heart attack when he was coming out of surgery. He was sent home to recuperate, and then he was to go back again to be put on chemotherapy and it was too late. A second tumor developed on the other kidney. He died very quickly. But the health care at IHS was negligent. It was negligent. It has been negligent time, after time, after time. In February of this year, a woman died from negligent medical care at IHS. She went in complaining of stomach pains and they sent her home, and told her it was nothing. In the middle of the night, she was 77

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in horrific pain, and had her daughter bring her back there. This time the daughter yelled and screamed to get her medical care, and they transported her up to Rapid City. Her artery had burst and she had internal bleeding. By the time they got her to Rapid City, it was too late and she died. So I have absolutely no confidence in the medical care. There may be an occasional person that comes through and knows what the hell they're doing, but I think time after time after time that they just don't give a damn. Either that, or it's the one's that are at the bottom of their class at school, and they haven't paid attention. I've never witnessed such bad medical care. Whatever the case is, it's disgusting. The doctor that I seen, whenever he told me I had carpel tunnel, I think he was just there too long (laughs). Somebody who's, I don't know, I don't think he even examined me the way he should've. Cuz I was losing my balance and somebody said, well, when you get inner ear infections, you have no balance. And he didn't look in my ears. He didn't look in my throat. He didn't listen to my heart. He didn't even touch me. He just said you have carpel tunnel. Respondent: [Discussing medications] You might take the wrong thing or at the wrong time. Me, I say, "Well what is it for? What are these?" I know they get upset with me, but Interviewer: They get upset with you when you ask questions? Respondent: Uh huh. Like when you ask, they just get you in there, and hurry up. And then the people that they bring in up here [IHS hospital in Pine Ridge], it's like they don't care. You know they don't care if you live or die, to me. A couple of people believed that there is racism at the hospital in Rapid City. This belief would be a factor that affected whether or not a Lakota person chose that hospital for his or her medical care. But I didn't like the way Regional treated us. I was there for 5 days, and the first 3 days they never washed me up, changed my bedding. I had to ask for a tray to eat the food, when they bring the food in. And 78

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my sister wrote it up, she complained, the one that works at IHS, and they sent a letter apologizing. I don't know if they've changed. To me it seemed racist or something, ya know. Interviewer: Is there racism up in Rapid City? Respondent: Big time Interviewer: Like at the hospital? Respondent: Big time, big, big time Some people had good experiences at Rapid City Regional hospital. They may utilize that hospital more often because they feel that they are getting the care that they need, and that the doctors explain more of what is going on with their illness. In terms of Lakota medicine, people might be more apt to use ceremony, sweats and go to a medicine man for healing if they have heard or had positive experiences in the past. There were several stories told about healing of physical ailments, and prayer for others that are going through a tough time emotionally. Past experiences either support or deter people's use of health care or Lakota medicine on the reservation, depending on how the person felt after it happened, or after they heard a story from another person. These stories are important to look at because word spreads fairly quickly on the reservation. People may base their decisions on something that someone else told them or on a bad experience that they themselves had. These experiences accumulate and build a cultural consensus about the health care system. 79

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Bureaucracy: Making Appointments. Waiting Too Long. Losing Your Doctor Appointments and Wait Time Bureaucracy also affects decision-making. With the current same-day appointment system at IHS hospital, people have only a fifteen-minute window early in the morning to get in for an appointment during that day, and if they do not get in for an appointment, they might go in to the emergency department just to be seen. No matter if they have an appointment or not, they can expect to wait three or four hours to be seen and get their medications. Sitting at the hospital for so long is a deterrent for almost everybody I spoke with. A quote from a young woman explains that the wait time really affects her decision to seek care: "I dread the wait. If I could fix it at home, I'll do it." Fixing it at home is her first choice when she is sick. The last resort is going to the hospital because the wait is unbearable. A few did not feel that they had to wait excessively long. One reason for that might be because those folks lived close by the facility in Pine Ridge and could go home and come back for their medications, so they cut their wait time down significantly. One informant described the frustration of schedules and waiting as follows: You did have to make appointments before, and then all of a sudden they said that wasn't working so they switched to the same day appointment. And that seems to be a big hassle. It's even worse than before. No matter what you do, you go to the hospital, plan on sitting 80

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there at least 3 to 4 hours. It takes a long time. Even if you make same day appointments. There's no walk-in anymore. If you have to go in as a walk-in, they consider it an emergency. They send you to the Emergency Room. And in the Emergency Room, if you're not ready to drop dead, they won't consider that an emergency and they send you back to clinic. One woman said that she has to make an appointment at the clinic every time she needs to get a refill of her daughter's inhaler. When she cannot get in to see the doctor in time, her daughter ends up going without an inhaler for her asthma until they can get in to see the doctor. It is a hassle to wait so long at the clinic, but even more of a hassle when the diagnosis is made, the prescription is written, and just a refill is needed. I'm not happy with refills [at the clinic in Kyle] because my daughter, my little girl has asthma, and they put refills on her chart, yet when I go get them they say, "You have to see the doctor first," and you know, she's not sick, she just needs a refill. Then they don't give me any until I make an appointment to see a doctor. Then she runs out of her inhaler and so that's not right. I don't like that part. Like if I could just get a refill, and they don't want to do that. She needs to be seen. They know what's wrong with her already. Deciding whether or not to seek health care has to do with more than just the decision of whether one is sick or well and whether the hospital will be the best place to go for an illness. Many people do not have phones or transportation, so they cannot even call for an appointment in the morning or get in to the clinic, especially if they live out in the districts and need to go the long distance to the Pine Ridge hospital. The hospital changes their scheduling routine often enough for it to be a 81

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concern for people, particularly if they travel far and then find out that they cannot be seen because they did not follow new policies. Communication of changes in health system protocols cannot be expected to work efficiently in a context where many of the people served live in remote areas and do not pay attention to local print or other media. And then about every year or so, the hospital is changing their routine. And this last time, they put a little ad in the paper: "From now on you cannot walk-in. If you need to be seen by the doctor, you have to make an appointment." ... } wondered how the people in the districts were made aware. Come all the way to the clinic and find out it's changed, you can't walk in. And a lot of people don't have the transportation or the phone [to call for an appointment]. So, they're on their own. Sometimes you go in and they changed again. So they don't let you know. There's not like a flyer or anything, a newsletter, or anything that comes out to everybody and lets them know they're going to be doing this. You just have to go and find out for yourself what's going on. So the same day appointment making was a big surprise to everybody. You used to go in and sign up as a walk-in. You had 2 windows, walk-in or appointment. If you had an appointment you go to that one, if not you come to this one. Not no more. They went up there and everybody was like ... "Well we can't see you today, cuz you didn't call in," "Well, I didn't know we had to do that! When did that happen?" Now everybody knows that it's same day appointments. Then the phones are so busy, you can't get through, at 7:30 in the morning. And sometimes they're not even there at 7:30. You get security, security will come on, "Oh, they're not there now. Call back later." A nurse I spoke with from IHS hospital is worried that people are going to start making the decision to seek health care elsewhere because they are not getting in to see a doctor when they need to. She is also concerned that the hospital will lose 82

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money in the end because they are not getting in enough patients or satisfying patients by having appointments available when they need it. They decided they'd go to same day appointments, figuring it would be better to do same day appointments. As it ended up, it wasn't better because they can't get as many in, so people are going elsewhere, So I think we're going to lose a lot of money because, they've got Medicaid and Medicare, they're not gonna wait around and try and get an appointment. They're gonna go see a doctor they can get in to. Besides waiting to get an appointment and waiting to see the doctor once you actually get an appointment, people also complained about waiting for the ambulance to get them to the hospital in an emergency. As with appointments and clinic wait time, waiting for an ambulance to take you to the hospital is a constraint that is out of the hands of the individual decision-maker. In the following example, the woman's son made the decision to call the ambulance for her grandson because of his allergic reaction, but the ambulance did not leave to go to the hospital right away despite the fact that the child lost consciousness. Respondent: Like my grandson, he's allergic to bees, and one stung him that time, and the ambulance was taking their time, standing there, checking his vitals and my son, by then he passed out, and my son was just, yeah. We have to get the driver to just go, but he's just standing there. You know that's wrong, that's not right. I don't like the ambulance. Interviewer: Did they take him to Pine Ridge? Respondent: Yeah, they took him there and I guess they gave him some shots. They said if he waited any longer he would have closed up or something Interviewer: Closed his throat? Respondent: Yeah. So now we really watch out for those bees (chuckles). It's too hard to go in to ... 83

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Interviewer: How long did it take the ambulance to get there? Respondent: I don't know, I was in town then, and my son called. Said within 5 minutes he passed out. It stung him in the face. He just passed out. They got him and then they took him from the house, and they stood at that junction for about, I don't know how long, and my son was saying, "Take him!" but they just, you know, it's not even right. Her son could not do anything but yell at the ambulance driver to take the boy to the hospital. His agency was limited in this situation, and in this case, the ambulance was a factor that her son could not control in terms of getting the boy to the hospital in a timely manner. There were similar complaints about the ambulance being late or going too slow from other people I spoke with. I guess, they don't really do their job, I guess. They're just, they come too late, I mean, too slow. One of the explanations for the tardiness ofthe ambulance in recent years is the report that a lot of times the ambulance requires a police officer to check out the scene to make sure that the person in the household is genuinely ill and needs a ride to the hospital, not just a ride into town. Because people found a niche to get a ride into town due to the lack of transportation, some were abusing the ambulance system. This has resulted in a delayed pick up response, which could mean life or death in real health emergency situations. I think a lot of ambulance services have been abused by some of the local people, needing a ride to get to Pine Ridge, so they would invent some type of an illness. And due to that abuse, they require a policeman to check first, and if it was a real condition like a broken 84

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leg or possibly a heart attack, then they would call the ambulance in. But the travel time ... You can expect an ambulance to get to your house in something like about 25 or 30 minutes. So people have died because the ambulance didn't get there in time, so it's kind ofhard to ... Both sides, it's abuse. It's an abusive situation and it's done on both sides of the perspective. One woman I spoke with had a story to tell me about the ambulance service during a time when her uncle was really sick. The ambulance would not come until the police came to make sure that it was a legitimate run. This woman and her family finally made the decision to take her uncle to the hospital themselves because they had a working vehicle, but it was too late at that point. This one lady, they got rid of her now, but we all complained and complained about her. She was a non-Indian married to one of our Indian police officers. My uncle had cancer, and it was kinda towards the end there, but she would not go. I called her three times, get your tail out here, we need you out here right away because I think he's dying. He was throwing up this real dark stuff and she says, "Well I'm not coming out there til the police come." So then we had to wait again. Wait again, wait again. And finally the police officer, I don't know where he came from, but he finally got there to say, "No, they're not drinking, he really is sick." And so we called him again, twice more and finally, I said, "Well, let's just load him up and take him in." I had a station wagon so we took him, and we worked on him from Wounded Knee to Pine Ridge, and then they were just now coming. We were halfway over there and she was just now coming up. And then we were coming up to the hospital... We got him up there, they came out with that gurney and then they didn't strap him on there, they just pushed him, his whole bottom half went out, but he was already dead then cuz he died right by the housing office. And then that woman said, "They were all drinking" and I went out and she was telling some people that at the hospital. I went out there and I totally lost it on her. I just lost it on her. I told her, you know, "We don't even need people like you here, if you're going to sit there and talk about people," I said, "This man has been throwing this stuff 85

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up since last night" and I just got there ... He's my uncle so I just stopped in to check on him. This next quote is from a middle-aged Lakota man who used to work for the ambulance in 1988 and 1989. I think they take too long in responding actually. And when they do respond, sometimes they wait around too long to react. If someone's in an accident or a car wreck, they try to wait for the police to get there before they start helping people. If someone got in a wreck and they were dying, instead of helping them, they'd wait there. The ambulance response time is a reflection of how large the reservation is, but the financial constraints of the ambulance program also hinder being able to expand in any significant way to improve the issue of travel time. A woman I spoke with who works in health administration explained that the ambulance program has improved in recent years, but that response time can still be an issue. I think, there was some problems with it like three or four years ago. The time response now, they developed internal protocols, and procedures, and they got an award a couple of years ago for being in compliance and the financial part of it cuz it was always runnin' in the red. I think they have like fifty-three employees and it's 2417 and they're real involved now in training. The first response training just finished like two weeks ago, and I think eleven of them got, completed it, so that was good. So it's a lot better, but there's always going to be complaint you know ... In three years they've never been in the red so they've been able to live within their budget and I think the services are good. There's times where they have to make decisions because of the size of the reservation and the population, that you might have a car wreck and there's two units, maybe, there's six people in a car, and at the car wrecks you have to have two units there. Another call comes in and there's a unit maybe available in Wanblee to come clear in to cover that. So there's really a problem like with the distance, and that has a lot to do with the response time. 86

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Because the improvements have happened only in the last couple of years, the changes may not have altered the perceptions of those living on the reservation as of yet. It may also be that the improvements are not sufficient, and that the response time is still less than ideal for reaching patients on this large reservation and getting them to a hospital in an appropriate amount of time. Staff Turnover High staff turnover at the hospital and clinics is another aspect of the bureaucracy that affects people's decision-making. People get frustrated when they only have a practitioner for a short period of time. Providers at IHS often have a contract to work there for only a couple of years or a period sufficient for paying off their loans. This is especially frustrating when a doctor leaves who is very well liked by the people on the reservation. This aspect of staff turnover is also related to the cultural value placed on giving back to the community and not "using" the people just to get medical loans paid off. This value comes from a long historical relationship with the federal government. Residents believe that the government has long taken what they wanted in treaty arrangements, but not given back what was promised to the tribe. Staff turnover can affect the quality of care that is received also. If continuity of care is not assured, people may be less apt to want to utilize the services provided, 87

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particularly if they have other options to choose from. If people decide to still utilize the services, it may be detrimental to their health because of receiving conflicting diagnoses and medications from different doctors. A nurse who works at the IHS hospital in Pine Ridge explains what she observes in the clinic: We've got a lot of temporary doctors here, a lot of temporary doctors. The problem with the temporary doctors is because some of them are here for such a short time that they don't really know the patient when they see 'ern. So you tend to, plus with this walk-in system, you tend to see different doctors every time you go in. So nobody really knows who's doing what, and they change medications around and they change this around. That's hard too because then we get some of these elders, and they don't even have a clue what they're supposed to be on cuz they've seen three different doctors change the meds 3 times. So that's a big issue. This issue goes beyond perceived quality of care, and actually can affect the type of care received by the individual. Someone whose medications are changed repeatedly by each new temporary doctor might easily get confused and take the wrong medication, too much medication, or not enough medication. Culture: Lakota Values and Beliefs Affecting Health Decision-Making Culture has an influence on decision-making about accessing health care. Belief systems cause people to make certain decisions about health related issues that might not seem logical or practical to those practicing Western medicine at the 88

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hospitals and clinics. One Lakota nurse I spoke with told me a story about a woman who was afraid to seek care for her breast cancer because she believes she might be worse-off getting cut open at the hospital: I had one woman who told me she had breast cancer but she was afraid that if she, they wanted her to go to Rapid City, but she was afraid that if they opened her up it would spread faster ... And see here, you're tom between a person's belief system and what they're [the hospital] trying to do because they know that amongst that culture of people, if you're missing a part, it's not good. Familv Values For Lakota people, the family is highly valued, and decision-making is not always done out of self-interest. One thing that connects this factor to the financial theme in the next section is that families support each other or "help out" when they need money for gas or to be driven into town to get to a doctor's appointment. Money for medical expenses is not an individual household issue. Tiyospayes (family networks) are tapped when times are difficult. Sometimes family members get together to make goods to sell in the informal economy to raise money for health care expenses. Decision-making is sometimes affected by how many people in the family and extended family have jobs or ways of making money when it is needed. The woman in the following example wants to buy an electric chair for her mother to help her get up, but does not have enough money herself, so she has asked her brothers and sisters to help out in a time of need. The decision to utilize funds 89

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for helping out a family member is very important to this person, and she can ask her relatives to help out if they have any money to do so because it is culturally acceptable to do so. We've been trying to get her one of those stand up chairs which is about $800 and it would be nice if she would have one. {It's a chair with a remote control that lifts the whole body]. I've been doing it for two years now, but I've been trying to have my brothers and sisters help me try to get it. I might not be able to put that much money on it. It's $849. And it would be nice for her to have cuz she has a hard time gettin' up, standing up. Personalistic Networks Utilizing personal connections is another cultural aspect that affects health care decision-making. Some people get in to see the doctor quicker and feel that they are taken care of at the hospital because they have relatives who work there. Only three of my interview respondents discussed this issue. One elder I spoke to explained the phenomenon of receiving better treatment because of having a personal connection with an employee in the health system. He said that he does not mind going to the doctor because he is well taken care of: If people, they know you ... there was a nurse, she traveled all over. She came back here and worked for a while, and I got along real good with her. She's a priest's daughter. And I go in there to see the doctor, she would put me in before everybody else, do my vitals, and get me ready, prep me up, and then she'll ask what doctor I want to see. She'll pull my chart and put it on the door, ya know. And that's kind of the special treatment. The people like that cuz it's like that everywhere I suppose. 90

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He got special treatment because he knows people at the hospital. For this man, the decision to go to the doctor is less hindered by negative perceptions of accessing care because he does not have to wait long hours at the clinic like so many others do. I thought it was interesting that he also believes that special treatment is common everywhere, and not just specific to reservation life or a rural community life. This aspect of privileging your family and fiiends is seen less as a cultural aspect of Lakota people, and more as a universal phenomenon. When I was talking with a middle-aged woman about these types of personal networks in health care, she had this to say: Probably a lot of it going on. I know, like, a lot of'em work there, and here these people are coming in you know, from the districts, and they just bring their kids in and just take 'em right into that doctors office, you know, and here these people are just sitting there and sitting there. That goes on up there a lot. This same woman also explained how she sees this going on at the dentist's office. A lot of people really grumble because, if it's their family members, then, if somebody's kid needs braces, and you're their fiiends, they'll write little grants and stuff ... They'll get 'em their braces. And then some of these people aren't working and these people are both working, and then these people that aren't working they'll get that service. My sister works up there and I really chewed her out cuz they helped this person get teeth and he was working. And I said, "Well what about this kid that needs braces?" So it's disgusting. Even political at the hospital. This woman was really agitated that someone who is working can get dental services free, whereas someone who is out of work will be denied and unable to pay 91

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for the services out-of-pocket, unless they are related to someone who can get them the services at no cost. One younger woman with whom I spoke felt that personal networks affect receiving health care in general, but they also affect the amount of time it takes to receive that care. She believes that there are politics at the hospital that prevent or help people get the care they need: Interviewer: So there is still political motivation for why people receive or don't receive care? Respondent Yes. Interviewer: Does that extend into the hospital? Respondent: Yes, I think it extends into the hospital. Interviewer: Does it have to do with your last name? Respondent: Yeah and who you are and where you come from and how fast will they work on you, you know? Because this woman's family has had a long history ofbeing involved in politics and being very active around controversial issues, she may be more perceptive of the privileging that goes on around her at the IHS hospital. She and her family use Lakota medicine and ceremonies very often and believe in the old ways very strongly. Some of the political issues they have experienced within Western medical care settings may be what has caused her and her family to tum more to Lakota medicine and ceremonies more than to Western medicine. Distrusting the system of health care and the politics that go on in the health care setting could be a reason for turning towards the old ways. 92

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Perception o[Time Within Lakota culture, time is not defined by the clock, whereas the clinic schedule revolves around that concept (See Pickering 2004). Each patient has a certain number of minutes to be seen and get out the door. This time period lessens as funding gets tighter, fewer providers are on staff, and less space is available to see patients. In the day to day work of the health care setting, the time clock in the clinic gets tighter when more time is needed for special cases or people who have a multitude of issues for which they are being seen. From what I was told by a nurse who works at IHS, the clinic time clock is not adjustable based on the case, so if someone comes in and is seen for ten minutes of the half hour time slot, the doctor does not see the next patient until those thirty minutes are up, which might be utilized more effectively seeing another patient who needs more time with the doctor. For those who need more time and do not get it, their satisfaction with the care they receive is likely to be more negative. Patients who feel rushed will not feel they are getting the full care that they deserve and may try to avoid going to that hospital or seeing a particular provider. This is especially pertinent to Lakota people, who value getting to know medical providers, and who feel that they need to have enough time to talk about all the issues they feel are important in their lives in order to get to know the medical provider and to help them get better treatment. Their expectation is that the health care practitioner must understand the whole issue as 93

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opposed to just the symptoms of one illness; thus having one primary doctor is important to the people I spoke with. And then the bad part of it is, well, ask for a certain person cuz that's your, to kind ofkeep track of you, but every time you go up there you get a different person because they're not there. Lakota Healing and Ceremonies Lakota healing ceremonies have been utilized more frequently in recent years for prayer, psychological healing, and healing of physical ailments. Deciding whether or not to utilize Lakota medicine is based on several factors. Some people tum to Lakota medicine for personal healing or to pray for another person who is ill. One respondent, who uses Lakota medicine almost exclusively, also explained that you do not go to the hospital unless you absolutely need to "get cut open;" otherwise, you go to a medicine man. He also said that using Lakota medicine is based on belief. If you believe in the old ways, you can use Lakota medicine otherwise it will not work. Survey data indicate that traditional Lakota medicine is used for many different reasons. Figure 5.1 shows the types of illnesses Lakota medicine is used for. 94

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26% 13% 1 J% njury I% Gynecological 28% Chronic Illness 12% 0 Serious Illnesses Chronic Illness ; Acute Illness 0 Mental Illness Prayer/Spiritual ; Prevention i C Diagnosis/Causation 0 Injury : Gynecological L__ ______ Figure 5.1. Use ofTraditional Medicine (N=l39) Data in Figure 5.1 are compiled based upon response to the question "For what types of illnesses do you use Lakota medicine?" The primary reasons indicated were for acute illnesses (N=39; 28%), and for prayer and spiritual purposes (N=36; 26%). The categories indicated in Figure 1 are comprised of a variety of responses that were gathered during the survey collection. During the analysis phase, I created the categories that are listed using the answers gathered on the survey questionnaire. The serious illness category includes the responses: cancer, breast cancer, stroke, "life threatening illness," "serious disease," and "serious illness;" chronic illness includes: diabetes, heart problems (chest pains, heart attacks), kidney problems, arthritis, Lupus, and high blood pressure; acute illness includes: colds, flu, 95

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congestion, common illness, viral infections, bacterial infections, ear infections, "aches and pains," toothaches, sore throat, headaches, teething, backaches, cuts, stomach problems, stomachache, diarrhea, pneumonia, "fainting problems," and gall stones; mental illness includes: depression, stress, emotions, "life problems," and ADHD; prayer/spiritual includes: the "pipe," sweats, prayer, spiritual, Sundance, and healing ceremonies; prevention includes: "before sickness," and preventative; diagnostic/causation includes the phrases: "Find out disease causation," "help with diagnosis;" injury was the only term used for this category; and gynecological includes only one response, "uterus problem." Many people use at least some Lakota medicine in conjunction with Western medical practices. Figure 5.2 shows the percentage of people who said they use Western medicine versus Lakota medicine and healing, in response to the question "What percentage do you use Lakota medicine verses Western medicine?" From this graph, it is evident that most people (71%) are using at least 50% of Western medicine for their health care needs. But this figure also shows that there are a significant number of people who use more than 50% Lakota medicine (29%) (those indicated on the Figure as using less than 50% total Western medicine). 96

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.>75100% 0>50-75% .>25-50% co25% Figure 5.2: Percent Use ofWestem Medicine (N=240) One reason people say that they avoid Lakota medicine is that they feel they are unable to go seek help because they are in a bad place at the time (e.g., they are drinking or doing drugs), and they do not feel right attending "ceremony." One woman said that she thinks Lakota medicine does not have power anymore because her grandfather told her that the power would be lost when the "lips of someone from another nation touches the pipe" and today many non-Lakota people attend ceremonies and sweats. Others said that today it is hard to find some of the "special plants" that are used in Lakota medicine because the ecology of the land has changed and many do not exist anymore. Because we use both our way of medicine, and we use ... like we don't have any medicine for, anymore now for, heart disease, so we have to go to the doctor to get that. Because we used to have it but because of 97

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all the comrnercialize ... ya know, the ground has been ruined and we can't get it anymore. Cattle and drought are affecting what types of herbal medicines are still found on the reservation. Some people who do not use any Lakota medicine also say that they just do not believe the old ways anymore and that Western medicine and the Christian religion are what they believe in. Finances: Paving for Health Care Related Expenses When There Is Not Enough Money For many people and for many episodes of illness, as my informant below says, "Finances are really hard." That simple statement sums up the situation, but may mask the complexities faced by a person seeking care. Money shortages and concerns surface at every point in the quest for care. Financial factors include, of course, costs involved in receiving care and medications, and also costs when a person travels to seek care off the reservation. In this context of rural residence and poverty, a challenge may be coming up with the funds to travel, and also funds to have adequate shelter and food while off the reservation getting care. Getting the needed funds can require making requests of bureaucratic gatekeepers and filling out multiple forms and paperwork. Even with insurance or other assistance, many respondents who went for care off the reservation simply did not have enough money to cover transportation, food, and lodging. Many respondents told stories of getting saddled with bills that they may never be able to pay. Throughout these accounts 98

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were experiences of suffering while in the hands of the system, or illness experiences for which care was not sought because of fears about the economic consequences. Transportation. Lodging and Food A lengthy account by an informant merits inclusion in its entirety to illustrate the challenges that needing money for transportation, lodging, and food can mean: But the problem is finances. I go to the hospital, I get the ok, everything's ok right there. My insurance, everything's ok. But I have to make a request here at this CAP office. Ok at the same time I make this request I have to put one in at Pine Ridge with the Treasurer's Office. And then I have to put in another one with the hospital and these three you know the three they work with each other. They, urn all right, maybe these people here will get me a bus ticket. Somebody might get me lodging and then another one might get me, urn, you know meals. But urn that's good you know. But the last time I went in December last year in 2003, I got a bus ticket from these people and it was just one way. It wasn't a round trip so I was stranded. They give me meal money but they didn't give me gas money to get from here to there. See I didn't have a car. I don't have a car, the bus leaves at 9:30 ... and from here to Rapid City the minimum you pay is $50. So I didn't get no money for the trip over there. Urn, I got some meal money but that was for when I got there at the Mayo Clinic [in Rochester, Minnesota] and so I didn't have any meal money for the two days' bus trip. And when I got to the Mayo Clinic they moved the bus depot, it's like two and a half miles from urn where I would be staying at. And so I need taxicab money. And then when I got there, when I got to the motel, they didn't have a check. These people didn't give me the check to give to them. And so I waited like urn seven hours for them to finally straighten it out by then it was like II :00 at night and I didn't have nowhere to go. Didn't know anybody there. I didn't have you know no money for lodging. I had money for meals but like, the place, the Mayo Clinic, is a medical community. Doctors, nurses, all the people that make a lot of money. So I ate at a local restaurant right there where I was waiting at, and 99

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the meal was like $10.75 plus tax. You know and so like, finances are really hard. I talked to one of the Directors of a Program. He has to go to the Mayo Clinic now. He has to go to the Mayo Clinic and he said that he ran out of money the second day he was there. And he took his own check and he had money from the Tribe. And when I come back to tell these people you know it's like, well, you have to save your money. Maybe you can eat at McDonalds. And McDonalds is like three miles down the road from where I was staying. Because they put us in a hotel which was probably the most expensive hotel there. They could of called around about prices or maybe they could have called the City. They have, they should have something, the City has like maybe these brochures, pamphlets with all the hotels, their phone numbers. They didn't do anything like that. They just called over there to Mayo Clinic and Mayo Clinic said well, the closest hotel is the Grand. The Killer Grand Hotel and that's like for movie stars. I mean a pop is like $2.00 you know they have urn we have a Taco John's [unclear] that's like $1.99 for urn cheese {unclear]. Well they're like over $7.00 at that place where I was staying. And the medical community has their own, you know, hospital food, cafeterias, things like that. But even theirs, like a sandwich is $2.50, an egg salad sandwich. They have vending machines at the hotel there but you know like the pop was $1.50. At the one down the road it was $2.00, I mean that place was really expensive and so I try to tell them and they say, well if you don't have the money now, just cancel and reschedule. I said, do you know long it takes for those doctors to put you know their appointments together just for me to go up there? Before I have to go to the hospital, I mean I do a lot of praying, hoping that something will come up. Some kind of financial assistance. Because that's it, we have the CAP office, they get $2500 for everybody here if they need assistance you know. We have the Tribal Treasurer's Office, the Financial Accounting Office or something like that FAO, and they do the calling. Like they'll call Killer Grand, say well we have one person that's going to be coming in. How much do you charge a night? She's going to be there for three nights. And they take care of all of that. But what they don't realize is that sometimes while I'm there I might have to do my laundry or I might, like one time I had to do this test early, early in the morning about 6:00 before I had breakfast. They wanted to do this 100

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test four hours before my first appointment so they can check the blood. And so at 5:00 in the morning I didn't have taxi money, so I walked three miles to that certain clinic you know because the clinics are all based all over [unclear}. In Rochester there's hospitals here and there, you know they all work together but they're not close and so you have to go place to place. And it gets hard financially. You know there was a time where I even had to sleep in the waiting room with my baggage. And I was so sick I still had all of my staples in. I had tubes hanging out and it was, I had to have my medicine refrigerated you know I had [unclear} but there was nobody there to help so it was kind of rough. The next day I just got on the bus and I came home. The next, about four months later they told me I had to go back and I just didn't want to go through that again. And that's when I got really sick. I got sick because I didn't want to go back to my appointment to see what was wrong. And they told me that it's very important because they're conducting a test on me too, you know for the future you know, for the future generation, who's going to have this disease. And maybe they could learn something now you know studying me, in my blood or you know they, I know they send their, their cancer [unclear} to I think to Yale University or something like that, so they're doing studies too to try to help the future generations that develop or are born. So I'm hoping I'll get some money by the fifteenth so I could go. This lengthy story illustrates every aspect of the financial problems people face when they have to go off the reservation for health care, and it brings the reader a little bit closer to understanding all of the issues one person can face when trying to access health care for a serious illness that cannot be taken care of on the reservation. I this case, we will call her Diana, she goes through struggles at every stage in the game trying to get to Rochester, Minnesota for treatment of a rare form of pancreatic cancer. Once she gets there, she faces other obstacles, like getting food and finding a place to stay. Diana has some agency in this process, so she goes to all the offices 101

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she needs to go to in order to get the money she needs, she makes the appointments with the doctors that she is so grateful to see, and she prays. In the end though, the structural constraints, like the bureaucracy involved in trying to get money for a bus ticket, food and lodging on the long trip limit her agency. She faces financial obstacles all along the way. And the hassle of the whole experience even caused her not to want to return to the clinic despite her worsening condition. Her concern of the next generation really prompted her to do something and face the unavoidable issues of traveling out of state for her health care needs. Diana is a strong woman. She not only has faced a rare form of cancer with a positive attitude, she has also had to deal with the financial burden of getting to Rochester, Minnesota, and the difficulty of leaving her family and young children for extended periods of time to travel there. She prays, but should so much of her ability to get treated for cancer be left to prayer? Lack of finances was a major theme that emerged as a hindrance to accessing Western medical care. Many people discussed not being able to get to their doctor appointments all the time because they did not have the money to pay for gas to get there. For appointments that were out of the city or state, others had problems paying for lodging and food while out of town. Diane's story summarizes three of the major economic issues that people have on the reservation: transportation, food and lodging costs. These are immediate concerns that will determine whether or not someone gets to the place they need to go for medical care when they need to get 102

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there. If there is not any money, and for many people living on this poverty-stricken reservation, not having any money is a constant reality, the decision to seek care may be hindered. An elder explained that the cost of transportation is a big problem, especially for diabetics who need dialysis and can't get into the Pine Ridge dialysis centers because they are full. It is a problem, the cost. Even if you have your own transportation. Especially now with the gas prices the way they are. It would really be hard. And you don't get any assistance, medical appointments. If you're a diabetic, you have to go in to uh, if you have kidney problems, you have to go to Rapid [City, SD] for appointments to get evaluations, and that's pretty ... My wife was a diabetic and she was on dialysis, and she had to go to Rapid City at least once a month, sometimes twice a month. We'd make her appointments so they could evaluate her progress. And it was really hard to make those appointments because of the cost of transportation ... It probably cost, probably about $100 for the trip, with gas and everything else. Food. Probably close to $100 for the trip to Rapid City. And that's about 120 miles from here. But now it would probably be worse than that, more than that, with the gas prices. For travel to Rapid City for medical appointments, there is a van that will transport people from Pine Ridge to the hospital or clinic. Even though the purpose of the van is to help people who wouldn't otherwise be able to get to their appointments in Rapid City, there are problems with it that affect whether or not people decide to use the service. I heard complaints that because the van transports everyone to their appointments, if you have an early appointment, you have to wait until everyone is finished with their appointments before you can get a ride back. 103

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This causes problems for those who feel extremely ill when going to dialysis appointments, and those who cannot afford to buy food while they are waiting the whole day for the van to take them back to the reservation. The following stories explain the problems people face when using the van: There's a van that goes, I think now, cuz, the ambulance has what they call ... oh what is it called ... and they take patients up. So if you have an appointment at eight and one has an appointment at three, then the one at eight has to wait clear til three o'clock before they come back. So that, or else your family will find gas money or something to come get you, otherwise you have to come back on the van. They go and then they deliver them and maybe they have to go to a specialized clinic and maybe one has to go to orthodontist, and then once they're all finished, then they can gather them all up. A lot of 'em don't have money to eat. Respondent: A lot of people don't like to ride the vans, and I can't blame 'em cuz once you get out of dialysis, they're tired, it really makes them sick, and they're hungry, and they have to wait til that last patient gets off the machines. Interviewer: And they don't have money to get anything to eat? Respondent: Yeah. The van is available to help people who do not have enough money to get to their appointments in Rapid City, but the assistance is limited because it forces people to use an entire day for any length appointment, and the van does not provide lunch. Some who make the trip up to Rapid City or other cities to be with their loved ones who were transported via helicopter or ambulance, do not have enough money to pay for transportation around the city when they are there, they do not have 104

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money to eat or even to get lodging, so many end up staying in the hospital room or in the waiting room. [About using Rapid City hospital] It's really hard for all the Indians that go over there. They have nowhere to go, you know. Like I stayed one whole week with her up there. They were trying to keep her baby in her. And it was just, cuz it was too early. I stayed there for a week with her and it was just bad. Not enough money to be takin' a cab to go eat. The ride there's too expensive. And I see other Indians there too having a hard time. When I went with her, I went with her in the ambulance, but I was on foot up there, and I know a lot of them that went were like that too. [She had to pay for cab rides and food. They had no assistance for her. She didn't have to pay for a hotel because she slept in the hospital]. I slept there. [She slept in a chair in her daughter's room.] I hardly slept. Indian humor can make light of many difficult situations, even the problem of spending on health related expenses. The following quote is about a woman discussing the time her daughter was taken to Rapid City via the Flight for Life helicopter: We had to pay for our own way up. We went up and followed them up. She went in the helicopter. She was there like in 20 minutes, and we had to go up, go to the Emergency Room and wait for her. She got seen and then they released her. Well, when she was up here, they took her clothes off her, and she had a hospital gown on, and we didn't know that, so we had to go buy her clothes (laughs). She didn't have nothing to come back in (laughs). Unpaid Medical Bills Another major issue for people in terms of money was that they sometimes ended up with unpaid medical bills. People were often unclear about when and why 105

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IHS would pay for some things and not others, so if they were worried about finances and their illness did not seem like it was too troublesome, they might just not have the procedure done. Many of the people I spoke with who had an unpaid bill eventually arranged payment, but they had to spend a lot of time fighting with the contract services department at IHS to make that happen. Others could not find a way to get their bill paid, so they ended up with hospital bills they were unable to pay, that continued to generate interest and were probably never paid. The following dialogue is an example of a respondent who initially believed his hospital bill would be paid because he was referred to the hospital for a procedure, but in the end, he received a bill he could not pay. Respondent: The initial part got paid for, but after I went back for some surgeries like on my hand and stuff, something happened and they didn't pay for it, so I was left with the cost of that medical procedure. Where the IHS referred me and they were supposed to pay for it, but they didn't. I was working and had health insurance and the health insurance wouldn't pay for it. Neither would the IHS so I got stuck. It ruined my credit. Interviewer: Did you try and get it paid? Respondent: Yeah, I went up and talked to the contracts department over and over, and tried to get it paid and finally I just gave up. Some people said they were unable to pay for their deductible if they had private insurance, and if IHS would not pay for that portion, people would be charged for the high deductibles they could not afford. One service that Pine Ridge hospital uses that is very expensive is the Flight for Life helicopter to Rapid City. I was told that it cost anywhere from $3000-$6000 106

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per trip. A couple of respondents that live in Pine Ridge near the IHS hospital told me that they would hear the helicopter fly over their homes sometimes as much as once a day. For those that use this service, some end up having to pay for part or all of the cost of the helicopter, and expecting persons in poor communities to pay that high of a bill is unrealistic. It is also expensive for the IHS to pay for the Flight for Life as often as they utilize the service because they are not meeting the local financial needs of the ambulance service. A nurse I spoke with at the hospital voiced concern with the amount of money IHS spends on the Flight for Life: They use it way more than they should. Part of that problem is the fact that they can't find escorts and they can't find an ambulance so they're last resort is just call the helicopter ... and it's costing us. It's expensive. We're talkin' a lot. Calling the Flight for Life because an ambulance is unavailable is a short-term solution that is financially costly for the IHS. Sometimes large portions of bills are not paid by IHS or private insurance, so the patient gets stuck with a bill that they will never be able to pay, based on the income they bring in to the household. Respondent: [Respondent is talking about when she found out she had a rare medical illness] I went to Kyle, then I went to Gordon, then I went to Regional [in Rapid City}, and they put me in a hospital, and I was paralyzed, I mean, I didn't know what was happening, I thought I was dying or something. And you're supposed to call IHS within 72 hours, and I didn't. Nobody even thought to call IHS to let them know, so everything, my insurance didn't pay for, I had to pay for. And it's like, I don't know, it seemed to add up to almost $6000, I don't know, when it shouldn't be that much because, I think my deductible was $1500 or something. 107

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Interviewer: What was your insurance? Respondent: Blue Cross Blue Shield. They didn't cover like $6000 of it. I owe everybody. And I wrote to everybody trying to get IHS to pay, but they wouldn't. I wrote to Gordon, Pine Ridge, I wrote to Aberdeen, and I wrote to somebody in Washington (laughs). And they just wouldn't pay nothing. And it was just like $5000! Can you imagine what my bill was? And they wouldn't pay it. Interviewer: Are you still paying on it right now? Respondent: I pay like, 15 a month. And that's on just one of 'ern because, at Regional each department bills you separately, you know, so I don't know what I'm paying. I was thinking of calling them cuz whenever I start paying on it, whatever it was it was $400, so I said, well I'll pay you 15 a month. This was like last year. I was going to see if it was going down or ifthe interest was still adding it up. If it's still adding it up, I'm just going to quit paying it. Let them write it off or whatever they do. Cuz I'll be paying it the rest of my life and it's just going to get higher and higher and higher. If it's accruing interest and I'm only paying $15 a month. The previous dialogue illustrates a sophisticated understanding of this woman's financial reality in terms of the large bill she was faced with. She tried to invoke some agency by writing letters to local hospitals where she had been seen; she even wrote to here Congressperson, but when there was no response, she decided to do the next logical thing-stop paying the bill. Using health services off the reservation either happens because of an emergency, as in the previous example, or a patient is referred for care elsewhere by a doctor at the IHS hospital. Referral services are being used more frequently on the reservation because of the lack of funding to provide specialized care at the IHS hospital. Referral services are included in something called "contract care," and when someone is referred off the reservation to another doctor or hospital, they must 108

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go through the appropriate channels in order to get that visit paid for by IHS. A nurse with whom I spoke, who works at the IHS hospital in Pine Ridge, explained the structure of contract care to me. Contract care has a system where it used to be a category one, two, or three, so a category one was a matter of life or death or loss of limb. That was a category one and those were guaranteed payment. Category two, if you didn't get something done, something might happen, but you weren't gonna die on the spot, and category three was, "Oh he needs an allergist, dermatologist" type thing. Those ones aren't priorities, so if there's no extra money, they don't get taken care of. Contract care is only a secondary insurance, so they only pick up whatever your insurance doesn't pick up. They're not primary insurance ... Now they're getting even more strict on the category one's and doing a, b, c and one, two, three on 'em so it's even more because of the problems with money. Contract care, and hence health care funding, is a large barrier that affects people's perception of what is available for them when deciding to seek health care. Respondent: I was talking to one of my cousins and she said, "What did you do again?" cuz I was going around on crutches. I said, "I don't know, I moved some furniture and I did something to my leg or something." She said, "Well don't think you can go to surgery, I'm 218 on the list." And then she said, "If you're over a certain age, they won't send you for knee surgery." So I said, "So then we're doomed?" "Yes," she said. Interviewer: Why do they do it? Respondent: Trying to save their money. This woman feels like they are "doomed" because there is no way she will be able to get the surgery she needs on her knee because the wait list is too long, and she's older and might not be under the age limit for knee surgery. She may not even 109

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bother trying to seek care because her agency in the situation is no match for the structure of the contract care system. The nurse in the above example also explained that those who only have IHS coverage and no alternative sources of insurance, have to hope that they are in category one to get covered because very few category two's and three's get covered. One Lakota woman I spoke with who works in the health administration field explained that contract care is based upon priority. In her personal experience, she tried to get a colonoscopy because her mother had had colon cancer, and she was aware of preventative measures she could take. Because it was not an emergency, she was denied. She makes a good point that doing contract care in this way makes it impossible to do any preventative screening for serious illnesses such as cancer. Respondent: One thing I don't like, they have what they call priority, contract health and I was denied. It's called contract health, and to be referred out if they don't have a service here, it has to fall under life for limb. So they denied me, so I had to go back and appeal that at State. Because my mom had colon cancer, I was considered high risk. I still haven't got a response from them yet, so that's the only thing, I think there's no early intervention when it comes to cancer detection, and so when it's finally diagnosed it's already in a late stage. So it's hard for people here to survive cancer. Interviewer: How long have you been waiting since you submitted the appeal? Respondent: About a month. Even when the decision is made to be proactive with health issues, such as in this example, barriers such as the structure of contract care prevent that from happening. It is not just this woman's decision that matters in terms of getting 110

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access to the health care that is needed. The structural barriers to care are larger issues that are part of the larger political economy of care on the reservation. Many people said that alcohol abuse is a big problem on the reservation, but because sending someone to a detoxification center is not, in most cases, a life or limb situation, often nothing is done to correct the problem of alcoholism until the person suffers from cirrhosis of the liver or has a serious life threatening issue. They have detox centers in Rapid City, Hot Springs, Chadron, Gordon. They have some good detox, but they don't send anybody there. Because we don't help pay for any of that. They won't take anybody. Until you get cirrhosis or something, then they can go. Some people make the decision to go to a doctor off the reservation on their own without jumping through the appropriate hoops. When this happens, IHS will not pay for the bill and that person gets stuck paying. Then there are others, like in the example above, who have an emergency and end up at another hospital unexpectedly. They have to notify Pine Ridge hospital of this within a certain time period, or they have to pay the bill as well. The same nurse I spoke with explained how people end up getting stuck with a bill when they use contract care: And we get a lot of them that'll self refer themselves, and you know, self referring yourself is the worst thing to do because you self refer yourself, you can look at paying the whole bill. They just show up there and say, "Well ya know the doctor said I should do this" but they didn't go through the channels. You know and then the other thing with contract care is if you're in a seriously injured or say you're having a serious asthma attack and you end up at Regional Hospital, you have, what is it, within twenty-four or forty-eight hours or something to notify contract care to inform them that you ended up there, and if you don't do that, you're stuck with the bill. Gotta make 111

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the phone call, otherwise you're stuck paying that bill, and they won't put it through contract care. Even people who have health insurance have found that they end up with unmanageable bills from having received health care. Consequently, apprehension about the financial burdens that may ensue can result in not seeking care even for a condition perceived as serious. Diana, from the opening story in this section, talked of these issues in the following account: Respondent: Urn I know a lot of people who don't have any kind of insurance. And they're leery about going to Pine Ridge. Intervie\Ver: VVhy? Respondent: A lot of them are scared that their bills wouldn't get paid if they go out. You know because there's, when you go to the health and human services meetings here at Pine Ridge in front of the whole, the Council. Ok they get a lot of requests or they get a lot of complaints too about the hospital paying for their care. Like they would send them on the life flight. Send over there and then sometimes they would have to pay for some of that, which isn't right because IHS is the one that sent them there. You know, so that isn't right and they're scared because a lot of people don't have that kind of money. They just, like I think it was $15.95, I was charged $15.95 for one of the scissors that you get for cutting gauze. Intervie\Ver: Fifty dollars? Respondent: $15.95 plus the gauze. That was at Rapid Regional. You get charged for every little thing, even a little tube of bacetracin salve. You know, the gauze that they clean your nose with. You get charged for everything. Intervie\Ver: Even with insurance? Respondent: Yeah. My daughter in law got charged with the little [unclear] syringe you clean these, you know. Every little thing [unclear}. Diapers, they even charge you for the diapers that you use in the hospital. So half of the people, they always forget about having to go out to the hospital. They know that they're going to get the best of care there, but they just don't know how it's going to be paid. They're really scared about that. 112

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Not having enough money to pay for health care was the biggest complaint my respondents had when it came to decision-making about health care. But, although money was tight, people seemed to still go and try to get care. Some thought they could just "write-off' the bill if they were not able to pay it, others fought with IHS administration to get bills paid, and some used their social networks to get money for various things like gas and medical bills. Because the overall population is poor on Pine Ridge, and jobs are scarce, the money to pay for health care that is not covered by IHS or private insurance, in many cases, is just not available. Many people believe that the government "owes" the Lakota because of the treaties that have been signed that promise to provide health care for all people on the reservation. This belief may be a reason why, despite not having the funds to pay for the care that is sometimes necessary, Lakota people still go and seek care. All of the factors discussed in this chapter seem to affect decision-making in some way because respondents discussed them when they were asked how they make the decision of whether or not to seek care when they are sick. The financial situation is the biggest issue because of poverty on the reservation. There are some ways that culture has compensated for financial problems. One is through the use of family networks helping each other out when they need money for everything from fuel to medical bills, and the other is utilizing family connections to help pay for medical services that are normally not covered; such as the above example of the 113

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man who acquired false teeth from the dentist because he knew someone who could arrange for that to occur. These aspects of culture are not directly related to beliefs about iiinesses or treatments, but they are "cultural" in the sense that actions are taken in this Lakota community based upon the cultural notions of familial connections. The problems that many face when attempting to access health care or Lakota medicine cannot be solved solely by having the standard "cultural competency" training for health care providers. The issues run deeper than that, and require a deeper discussion of poverty. If any of the financial barriers are to be improved, solutions need to incorporate changes at the structural level because poverty is a major barrier to accessing health care. The next chapter wiii address how the factors discussed here are situated within the theoretical concepts discussed in Chapter 2. The explanatory power of the theories and models wiii help bridge academic discourse with the grounded explanations for health care decision-making as discussed by the Lakota people themselves. 114

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CHAPTER6 DISCUSSION This thesis has uncovered the variety of factors that influence health care decision-making for those living on the Pine Ridge Indian Reservation in South Dakota. The general framework that has been employed in these findings explains the variety of factors faced by individuals when they are trying to get care in time of illness: In the examination of peoples' decisions regarding the seeking of treatment, one inevitably encounters economic, geographic, social, and other constraints, as well as facilitating factors. These are part of a general ecological framework one builds up, step by step, to understand the cultural and behavioral system (Pelto and Pelto 1997: 154). This study has taken the first steps towards applying a general ecological framework of health care decision-making to the situation of the Pine Ridge Lakota population. The factors identified in the previous chapter indicate that there are structural and material constraints, beliefs, and cultural reasons that become issues for Lakota people on this reservation when they are trying to get health care. 115

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The Three Delays Examined In this study, the interview findings can be situated within the "three delays" model as examined in Barnes-Josiah et al. (1998). The first delay, deciding to seek care, is affected by all of the factors that emerged in this study. Poor interactions with health care practitioners, communication barriers with doctors, past experiences with the health care system or Lakota medicine, bureaucracy, culture, and finances affect how quickly, or if, a person will seek help for the illness slhe faces. One of the major delays that respondents discussed was bureaucracy. Nobody wanted to wait a long time at the hospital to be seen by the doctor, and the appointment system is seen as flawed by many people, so they would rather treat their illness at home ifthey have the choice. Culture also plays a part in this delay because some people, who have the personal connections at the hospital, will not have to wait as long to be seen by the doctor. Also, sheer geographic location will affect the delay in seeking care. Those living in districts far from the hospital, like Wanblee, would be less apt to drive for an hour, if they had a car or a ride, to go to the rns hospital, and they are more likely to wait longer because they do not have the ability to go home and return to pick up prescriptions than those living right in Pine Ridge. Another aspect of bureaucracy that affects the decision to seek care, but might not be as much of a driving factor as the others, is the high turnover of doctors at the hospital. 116

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Believing and using Lakota medicine is another factor that affects deciding to seek care for an illness. If someone believes in the "old ways" they may be more apt to seek care for an illness through ceremony and sweats. This would cause a "delay" in seeking Western medical care, but those who believe in Lakota healing and medicine do not see this as a delay. I heard numerous stories about illnesses that were healed through traditional ways, and some people had tried Western medical care first, but because it failed, they turned to Lakota healing. Perception of time and personal beliefs about illness also affect perceived quality of care, which in tum, affects the decision to seek certain types of care. As was found in Pickering's (2004) study, task-oriented time is preferred and still used instead of time that is measured by a clock, which is based upon a colonial history of trying to force clock based time upon Lakota in the workplace. Clinic time, which is based upon the model of labor that is timed by the clock, conflicts with the task-oriented sense of time that is still dominant on the reservation. Limited time in the clinic to talk about an illness can be frustrating to Lakota people who may need more time to discuss the issue at hand and related issues that are affecting the illness. Limiting time in the clinical encounter also may affect the relationship the patient has with the physician because the physician can only spend a certain amount of time with each patient. If one person feels that they need more time discussing the issues, but they are forced out of the office before that "task" is completed, it may adversely affect the perception of 117

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care the individual feels they are receiving, hence influencing the decision to seek care in the future. Financial reasons were another major factor that affected delayed care seeking. If there was not enough money for gas or some form of transportation, to pay for medical bills incurred by using services off the reservation, or to pay for food while traveling for medical care, individuals were forced to cancel appointments that were necessary for their continued medical care. Still others did not let finances get in the way, as evidenced by several individuals who mentioned that they believed the outstanding bills would just disappear if they could not be paid. Also, politics plays a role. Some spoke of treaty agreements and the obligation of the Federal government to provide health care for all. If those individuals whom I spoke with received a bill for medical care, they would fight until it got paid, or they would just not pay it because they believe it is covered under their treaty rights. Finances turned out to affect delayed care seeking, but there is variation in the ways that financial issues influence decisions to seek care. The role that racism plays in affecting decision-making for seeking care needs to be further examined. Because only a couple of respondents discussed this issue, it was not clear if this would be a major driving force for delaying care seeking. Once an individual has decided to seek care, the second delay is actually getting to the facility or location of health services. Finances also play a part in this 118

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delay because of the issue of transportation costs. Bureaucratic issues, mostly the appointment system, caused some issues in delayed care once deciding to seek health care. Because of the structure of the new same day appointment system used by the hospital, some people are unable to get an appointment because the appointment book fills up too quickly. For those who cannot get in by appointment, they resort to using the Emergency room, with its much longer wait time. Same day appointments are also an issue for those that have jobs because they are unable to plan ahead to take the day off if they need to see a doctor. Also, some people who live in remote rural areas of the reservation do not have telephones, so the lack of technological infrastructure delays seeking health care. For those without cars, or who must share cars with other family members, driving into town, especially from the far reaches of the reservation, is difficult and expensive. Also, for those who are unable to get an appointment with the same-day appointment system for whatever reason (e.g., they cannot get through during the appointment-making window in the morning or do not have phones to call in), financial issues increasingly come into play because multiple trips to town might be necessary to utilize emergency care. If they cannot get an appointment and must stay in town for an entire day, it may become an inconvenience for other family members. This delay illustrates the issues that are sometimes outside the scope of individual efforts to change. There are structural barriers that delay care seeking once deciding to seek health care. Culture is a factor at this level as well, in terms of utilizing personal networks at the hospital in order to 119

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see the doctor faster. Individuals are unable to change the structural barriers, but they can change how they negotiate those barriers in any given episode of illness. The last delay is the quality of care that occurs once the clinic or healer is reached. This aspect ofthe study was not examined in terms of measuring specific health outcomes at the hospitals and clinics to determine quality of care. Rather, information was gathered from stories told about experiences with the health care available from the perspective of the patient, with the exception of a few participants that worked either as nurses or health care administrators. The information gleaned from interviews with health care workers provided more information about the perspective of those working within the system and often resulted in a better understanding ofhow the system functions as a whole. These participants were invaluable in assisting me in understanding the complexity of the reservation health care system. Overall, this study found that communication barriers at the hospital or clinic, cases of misdiagnosis, wrong medications given to the patients, racism, staff turnover, and culture all affect quality of care. Personal networks are a cultural feature that can affect quality of care by giving someone more ''capital" in terms of receiving better care once at the hospital. Individual perception of the quality of care is also affected by the clock-time versus labor-oriented time. As was discussed above, those who need more time in the clinic, but do not get that time, might feel that they are not getting the quality of care that they deserve. The reported cases of 120

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misdiagnosis and prescribing of wrong medications were numerous; everyone had either had a direct personal experience, or a relative or friend with a direct experience. Staff turnover affects quality of care because with high turnover there is less chance to get to know and follow up with patients who have long-term illnesses. Universal Health Coverage: Does Free Health Care Still Cost Too Much? Although Lakota people on the Pine Ridge Indian Reservation are eligible for free health care through the Indian Health Service, the cost of care that is contracted to other hospitals, and the associated additional costs that are not calculated into the full amount that people have to pay for care (transportation, gas, lodging, food). These expenses can add up to a considerable amount that many people cannot afford. This is a problem that occurs in other parts of the world as well (Xu et al. 2004). In rural China, even when tuberculosis (TB) programs were subsidized, the costs were still considerable (Xu et al. 2004). Patients had to pay for transportation for three visits to the clinic, for subsequent smear tests after the initial test, for their chest x-rays, and for their prescriptions. The costs ended up being more than many could afford. One person in this study said that once they felt better, they just stopped taking their medication because they had spent too much money already. Cost of care is a problem even for those who have subsidized care, or for those with full health care coverage, as with the Lakota people living on Pine Ridge who have 121

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full health care coverage under the Indian Health Service. Respondents' focus on financial barriers to accessing care highlights the issue. Many are unable to pay for the fuel for their car (or someone else's car) to get to the clinic. They are unable to find the money to pay for food and lodging when they need to leave town because there are not many specialty health care services on the reservation, or they are at capacity and patients have to go elsewhere to get care. The sheer size of the reservation creates an environment in which many residents have to travel long distances to receive health care (on and off the reservation). And many have to travel often because of the disproportionate burden of several chronic diseases that exist on Pine Ridge and more broadly, in the Aberdeen region of the IHS. When utilizing services not covered under the IHS budget, the actual cost of care is most often also unaffordable for reservation residents. Other studies have verified that financial barriers cause problems for those that utilize services not covered by IHS (Cunningham and Cornelius 1995). Some reservation residents may try to obtain health services off the reservation at facilities that are not covered under the auspices of the IHS, but because of the lack of private providers in many of the areas inhabited by IHS eligibles as well as their generally lower incomes and lack of private or public health care coverage, it is likely that non-IHS services are out of reach for most IHS eligibles (Cunningham and Cornelius 1995: 394). Congress only allocates a fixed amount of money to IHS for health care use on reservations, and when that money runs out, health care services suffer, and those 122

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using IHS services suffer. If residents use other services, the bills add up quickly, and many of them are never paid. Culture of Complaint: An Examination of Structure and Agency One aspect of this study that stood out during the interviews was the large number of complaints. According to Bourdieu's practice theory, this is not unexpected, because agency is delimited by the structures of the habitus in which individuals enact their everyday lives. Many who were faced with financial problems, for instance, because they were billed for health services that they thought would be paid for by IHS, were eventually able to get the bill paid by pestering the contract services department at the hospital. Despite this small amount of effective agency, the system remains unchanged. The structure of contract services and the amount of money for health care on the reservation is left the same. People continue to complain about IHS not paying for services, and many are left with large bills when their petitions to IHS, the Tribe, and Congress fail. Social capital has been defined as "social networks, the reciprocities that arise from them, and the value of these for achieving mutual goals" (Schuller et al. 2000: 1 ). Some are able to use social capital, in terms of personal networks, to get in to see the doctor faster, hence overcoming one of the bureaucratic barriers-wait time at the IHS hospital. Most Lakota who go to the hospital to get care must wait 123

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long periods of time to be seen, and they end up complaining about the wait. The current structure of the health care system does not allow for much agency in decreasing wait time, except on the individual level when utilizing personal networks. It seems as though Janzen's discussion of therapy management groups is less helpful in understanding health decision-making among the Lakota. In Janzen's research, it is not solely the individual making choices for health care. Families and those within one's social network have roles in the decision-making process. On Pine Ridge, it seems that those within one's Tiyospaye do not necessarily actively participate in decision-making regarding health care, but they are most certainly available for assistance with the financial resources needed for health care (and related expenses like transportation and medical bills). One woman I spoke with told me that Lakota do not interfere in each other's lives and that if someone needs help, they ask. Advice is not offered unless it is asked for. Health decisions do not seem to be made by a therapy managing group, but using social connections in the community is useful to the individual when seeking care. Overall, complaints about the health care system usually fall on deaf ears. Any substantial changes going beyond the individual's limited ability to avert the issues faced when attempting to seek health care are thwarted long before they have any substantial societal impact. Laura Nader's examination of consumer complaints in the article Disputing Without the Force of Law (1979) lends perspective to the 124

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issues complained about by interview respondents in this thesis. She explains that "individual complaints about consumer goods and governmental benefits seldom reach courts", and "the legal system is seldom responsive in a complex industrial society to issues that affect the quality of everyday life" (Nader 1979: 1001 ). Complaints on Pine Ridge about wait time at the hospital or clinic, cost of care not covered for health related expenses, high staff turnover, and perceived quality of care received, all affect individual and community attitudes about the health care system. These complaints might seem trivial individually, but collectively they speak to the larger issues of poverty and lack of appropriate health care funding on the reservation. Those who complain to the IHS are attempting to highlight individual problems faced, in the hopes that IHS will act as an agent to change structural barriers that cause those utilizing the services to complain. Unfortunately, complaints are not attended to because agencies that are dependent upon federal funding are hesitant to report failures or complaints about their services. This lack of reporting failures occurs because of the fear of more budget cuts in an increasingly expensive health care market. Nader explains that consumer complaints do not get resolved, and consumers are essentially discouraged from making complaints because of the structure of the market system, in which exchanges occur between parties ofunequal power (Nader 1979). The complaint handler, in this discussion the IHS, is supposed to be an intermediary to assist the complainer in gaining leverage to change the structural barriers they are complaining about. What 125

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occurs instead is that the complaint handlers do not effectively compensate for the inequalities the complainer is attempting to overcome. In the end, the complaint mechanisms continue to exist despite the lack of successfully addressing consumer grievances. This results in an atmosphere that discourages complaints and diffuses "pressures for systematic change" (Nader 1979: 1 008). Nader's discussion also helps to explain why people on Pine Ridge continue to use the services of the IHS hospital despite numerous complaints and dissatisfaction. She uses an example of a community that has only one store that accepts credit for purchases. Customer's can complain, but they continue to return to the store because it is the only one available in the area. On Pine Ridge, for many, the IHS and other clinics on the reservation are the only options for health care needs, so despite complaints about the system, many continue to return to those organizations for health care. Many are too poor to afford the medical costs and transportation costs they would incur by using health care services off the reservation. 126

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CHAPTER 7 CONCLUSION The care that we're getting isn't what it should be, really, but it's the best that we get, and we have to make the best with what we get. We have to be satisfied with that until our government sees it differently and tries to help individuals. Until then, not much we can do. Sit back and do the best we can. Make the best of everything that's available to you. Cuz we're lucky, we have IHS, free medicine, but it could always be better. You have to know how to make things better. But we're not learning it. We're not being taught to improve. Quote from an elder interviewed The above statement largely explains the structure and agency debate. The situation is the way it is because of the structure of the system that is in place. This elder believes things can change if the government changes the way they are doing things, or the people learn how to improve their situation themselves. He said the people are not being taught, but when I asked people in my interviews to suggest recommendations for improving the problems they were facing, they had many ideas and suggestions that could be useful for policy-makers and other decision-makers on Pine Ridge. Maybe there are some things the people need to be taught, but possibly the people also need to teach. I used recommendations from interview informants because I believe that they are closest to the issues, and that they have suggestions that should be addressed by those making decisions about several issues, including, 127

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but not limited to, funding allocation and procedures at the clinics and hospitals. This final chapter discusses some of the recommendations for improving the challenges that are faced by many living on the reservation when they are deciding whether or not to seek care when they are sick. It also addresses future areas of focus that could improve understanding of the issues addressed in this thesis. Recommendations Almost all participants interviewed had at least one suggestion on how to improve the health care situations of concern to them on the reservation. Twenty-six quotations were identified using the code "recommendations" in the interview transcripts. People face practical barriers on the reservation when trying to access health care and health services. Some people I spoke with recommended concrete structural changes that could improve some of the barriers faced, including suggestions to improve transportation issues, wait time at the hospital, and quality of care at the IHS. Several people had suggestions to improve transportation issues. One person suggested creating a wheel chair accessible bus system that people can call to be transported to the hospital; like the "dial-a-ride" program in Rapid City. Another believed that having home visits for routine care for the elderly would be very helpful. It is much more difficult for the elderly to get to the hospital than it is for younger people, especially for those who do not drive or do not have a car, due to the 128

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distance necessary for many to travel for health care. Elders usually have more chronic health problems as well, so they need to go to the hospital or clinic more often than younger, healthier people. Each of the communities on Pine Ridge do have Community Health Representatives (CHR's) that drive people to and from doctor appointments, which helps in some respect. There are a few problems with the CHR system that need to be addressed though. The first is that if there is a functioning car at the household, the CHR will not drive the person to their appointment. This could be a problem for the elderly, who either do not drive, cannot drive, or have to rely on a younger person in the household (or several younger people) who is unavailable, needing the car for work related purposes or other necessary travel needs. Also, talking with a woman in health administration, it is evident that the computers at the CHR program are obsolete, which causes problems for billing purposes. There is no money to purchase new computers for their program: CHR's ... we have a program in Rapid City that they can bill, third party bill, but they don't have the computers. They're obsolete. Their computers are obsolete, so they're not compatible with the software that you need to third party bill, and there's no money to buy the computers. So that was one of the needs there. One other person suggested using the postal service to mail medications to people who need medications regularly, which would be helpful for those that need to drive from the far out districts to Pine Ridge hospital just to get a refill. A couple of people thought that having larger field clinics or small hospitals in every community 129

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that are open longer hours than existing field clinics and had emergency capabilities would help with the distance and quality of care issue. Quality would be improved by the addition of other health services to locations that do not currently have them. Some suggested ways to decrease the wait time at the hospital. One person thought that it would be beneficial to hire more doctors in the hope that there would be more staff to see patients and fewer people waiting to see someone. Another thought that it would be helpful to build an even larger health center on the reservation to help with the capacity of patients being seen. A non-Lakota nurse I spoke with believed that going back to at least some advanced appointment options at the hospital, instead of the same-day appointment system, would be beneficial to decreasing wait time for patients. Most of the people I spoke with made suggestions on how they think the quality of care could be improved on the reservation. One person suggested having specialty doctors travel to the reservation for appointments certain times during the week. This would save on transportation for reservation residents, and improve the quality of care received by those living on the reservation. This same individual thought that building more staff housing might help to draw specialty doctors to live on the reservation. A Lakota nurse also stressed the need for specialty doctors on the reservation: "You need specialty care. And those are the kinds of things that they should try to get in order to take care of the Indians." An elder I spoke with also suggested having more incentives, such as social activities, and more stores for 130

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doctors so that they would be more interested in living on the reservation. One woman thinks that Pine Ridge needs more Indian paramedics, doctors, and nurses because they are more sensitive to local issues. A couple of other people were concerned about seeing different doctors every time she goes to the hospital or clinic. One woman suggested changing the system so that people have a regular doctor to see every time they go in. Another woman recommended getting more experienced doctors, not interns, to work at the IHS. A few people focused their recommendations on specific diseases that are disproportionately high on Pine Ridge. One thinks they need a cardiologist on the reservation. Another believes that diabetics need to have their own clinic. A couple of people were concerned about substance abuse on the reservation. One suggested that there be a larger capacity substance abuse program, and the other suggested that alcoholics should have their own staff so that when they come to the hospital they are not just sent home with Mylanta by the hospital staff to help the immediate symptoms, but ignore the larger issue of alcohol abuse. Substance abuse is a major problem on the reservation, and more money is needed for this area of health care: And then we have the substance abuse program that's in a condemned IHS house, and it serves, I think eight males and four females ... lt's ten people anyway, or visa versa. And there's a waiting list, people have to wait. And alcoholism is really a problem here, and they have to wait six months, maybe a year. And we lose ... A lot ofthem die before they can go into treatment because it's not large enough. If they had a larger facility, where they could provide a service, and that's what I'm talking about, how do we access those increases? What do we do to make Congress listen to us? Hey, look, our people are 131

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dying of substance abuse. You give us this money, which is probably, I think their budget in Rapid City is $320,000, you know, for the substance abuse program, for the treatment center. And that's just for salaries and operation costs, but to have a larger facility where you would hire more counselors and you would be able to maybe have a facility where you could have twenty-four people, you know. Or more than that, thirty people, forty people. But they're still in that house and they've been there since they're origin. It's been a long time, twenty years. But there's no money to get a larger facility. One woman was concerned about having more prevention and interventions for the most common health problems on the. reservation. She believes that there should be more programs targeted towards older adults because many programs focus on children (e.g., school programs). Adults are neglected, and it is important to teach adults because they are the ones who take care of the children. A specific program she suggested for adults is one in which public health nurses go to people's homes and teach them how to cook healthier foods to prevent diabetes. She also discussed prevention in terms of stores carrying healthier foods instead of just soda, chips, and other junk food: Because some people they know that it's wrong for them to drink all of the pop or all the chips, candy you know like that. But look at all of the stores; what they carry most is junk food. You know and so it's got to be a lot of prevention and intervention. I think that's the key to a lot ofhealth problems around here. There was one person who said she noticed that the suggestion box at the IHS hospital is never used. She thinks that IHS should get more input from patients, but 132

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that they should find another way to do it because the suggestion boxes are not working. And then there are those few people who suggested general solutions, like a total restructuring of the health care system, or more money for health care. Those are very important suggestions, but may be the most difficult to change. A tribal council member with whom I spoke was attempting to work on the cost of care issue. He first thinks that individuals and the tribe need to "tighten up their belts and not be overspending too much on unnecessary things." He also suggested that tribal members should tap into Medicare and Medicaid resources more to help with the cost ofhealth care. Besides suggestions made about specific diseases and common health issues on the reservation today, all of the recommendations made in this study mirrored suggestions of those in an earlier study (Maynard 1969). There is an obvious need to address these concerns, as they are the same as recommendations that were made almost four decades ago. Future Directions A useful endeavor for future studies of this kind would be to embark upon a comprehensive literature review of specific cases of illness decision-making so as to create a model that incorporates several common themes that exist across the board. This will be helpful for understanding general themes that exist across cultures and 133

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geographic areas, and may help others embarking upon this type of work, to get a better understanding of the common themes that constrain or facilitate decisions to seek health care. It will also be helpful to do an additional qualitative study with the staff at the hospitals and clinics on Pine Ridge to gain the perspective of the providers on issues of decision-making, and practical barriers that arise to hinder their ability to provide the care that is necessary for their patients. Since time and money prevented me from doing this during my project, I hope to design such a study for the future. In addition to the qualitative work, more quantitative analysis of the health care questions on the household survey could be useful for looking at other aspects ofhealth issues on the reservation. 134

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APPENDIX A Question Guide For Individual Interviews With Tribal Members First, ask about demographics (record gender and age of participant), describe the setting the interview was done in (Where did it happen? Who or how many people present? Any interruptions?). Start with questions about specific incidences/stories: 1. Tell me about the last time you were sick? PROBES: What was wrong? How did you feel? What did you do? Who did you see? Did you ask family or friends for help? In what ways did these individuals help? Did you get any medicines? Did you use them? 2. Tell me about the last time a family member was sick. PROBES: What was wrong? How did you help this person? Where did they go to get help? General Questions about health care access: 1. In general, what do you usually do when you're sick? Do you always go to a doctor, or are there things you try at home before going to the doctor, or do you do more than one thing when you're sick (see doctor, healer, get advice or meds from friends or relatives and/or self-medicate)? 2. In general, how do you feel about going to the doctor? How do your family members feel about going to the doctor? 3. Are there any issues that you have come up when you were trying to get care from a doctor or healer in the past? What can you tell me about this/these time/s? 4. Is there any time when you would seek care from someone besides a medical doctor, eg: someone practicing "traditional" or Lakota medicine-using herbs or religious rituals instead of biomedicine, or in conjunction with biomedicine? Please explain. 5. What kinds of experiences have you had with health care systems on and off the reservation? Probe, positive and/or negative stories. 135

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6. What about helping others with health problems to access health care? Getting to the doctor, hospital, or other healer. Helping to pay for health services for others in your social network. 7. What kinds of issues come up for you when deciding whether or not to go to a doctor or hospital? 8. Were there any years that you can remember when you or a family member paid much more than usual for health care? What was/were the reason/s?] 9. What are recommendations for how some of the obstacles you and your family face can be overcome? 1 0. Please explain any other special concerns you have when you are sick and trying to feel better. 136

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