Cultural and social aspects of the treatment of TB: Diachronic and synchronic perspectives

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Content INFORMATION TO USERS This manuscript has been reproduced from the microfilm master. UMI films the text directly from the original or copy submitted. Thus, some thesis and dissertation copies are in typewriter face, while others may be from any type of computer printer. The quality of this reproduction is dependent upon the quality of the copy submitted. Broken or indistinct print, colored or poor quality illustrations and photographs, print bleedthrough, substandard margins, and improper alignment can adversely affect reproduction. In the unlikely event that the author did not send UMI a complete manuscript and there are missing pages, these will be noted. Also, if unauthorized copyright material had to be removed, a note will indicate the deletion. Oversize materials (e.g., maps, drawings, charts) are reproduced by sectioning the original, beginning at the upper left-hand comer and continuing from left to right in equal sections with small overlaps. 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CULTURAL AND SOCIAL ASPECTS OF THE TREATMENT OF TB DIACHRONIC AND SYNCHRONIC PERSPECTIVES by Laura Rose Reiter A Thesis Presented to the FACULTY OF THE GRADUATE SCHOOL UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree MASTER OF ARTS (Visual Anthropology) May 1999 Copyright 1999 Laura Rose Reiter R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. UMI Number: 1395115 Copyright 1999 by Reiter, Laura Rose All rights reserved. UMI Microform 1395115 Copyright 1999, by UMI Company. All rights reserved. This microform edition is protected against unauthorized copying under Title 17, United States Code. UMI 300 North Zeeb Road Ann Arbor, MI 48103 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. U N IV E R S IT Y O F S O U T H E R N C A L IFO R N IA T H E G R A D U A T E S C H O O L U N IV E R S IT Y P A R K E O S A N G E L E S . C A L IF O R N IA 0 0 0 0 7 This thesis, written by under the direction of hSB.— Thesis Committee, and approved by all its members, has been pre sented to and accepted by the Dean of The Graduate School, in partial fulfillment of the requirements for the degree of Laura Rose Reiter Master of Arts D tan Date . 4 p , r i l _ 23., . 1.999 THESIS C < „ C hairm an a R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Dedication This thesis is dedicated to my daughter, Kim Suzanne Delson. R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Acknowledgments Many individuals have made significant contributions to my thesis. A special thanks to the members of my thesis committee: Andrei Simic, Chair, Joan Weibel- Orlando, and Robbert Flick. Each of them contributed in a very special way. I would also like to acknowledge the invaluable help from so many people in the TB Control Program and in the Department of Health Chest Clinics. A special thanks to Dr. Paul Davidson, Director of the Tuberculosis Control Program. Without his permission and the permission of the TB Control Program’s Research Committee, this study would not have existed. Thanks also to Laura Knowles for her brilliant epidemiology updates and statistical analysis reports and to Bob Miodovski who answered all my questions and most graciously provided me with numerous documents needed for my thesis. I would also like to thank my interpreters, my eleven informants, and the physicians and other caregivers who gave their time and energy to make this thesis a reality. For the Phoenix research, I am indebted to Dr. Bertram Snyder for his insightful interview and for all his help during the lengthy process of producing this iii R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. thesis. Very special thanks also to Polly Martino, Dr. Robert Kravetz, Anthony Mitten and James Me Allister. I would also like to thank the faculty, staff, and the special students in the Department of Linguistics for putting up with me during these long Graduate School years. I am also very appreciative of Robert Bauer’s creative help in preparing the visual aspect of my thesis. And, a very special thank you to Gloria Day who is a very competent and supportive Thesis Editor. Thank you, Gloria. Also, I could not have completed my thesis without the almost weekly long distance phone calls from my sister, Grace Cratch. Without her encouragement and loving support, I would not have been able to produce this thesis. Thanks also to her daughter, Robin Goellner, who provided insightful suggestions to this endeavor and who believes in me. I would like to dedicate this thesis to my daughter, Kim Suzanne Delson. There are no adequate words to express my love, respect, and admiration for her. Thank you for all your help, dear Kim. R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Table of Contents Dedication............................................................................................... ii Acknowledgments................................................................................. iii List of Photo Credits and Captions....................................................viii Abstract...................................................................................................x I. Introduction.............................................................................1 II. Project History and Methodology........................................ 8 III. Historical Perspectives: Tuberculosis, Idealization, and Fact..........................................................18 IV. Historical Field Research: Visualizing the Past........................................................................................23 V . The Nature of Tuberculosis: Present State of Knowledge............................................................................41 V R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. VI. Population Sample................................................................48 Interviewed Informants.................................................................. 49 Field Observations........................................................................ 51 VTI. TB Treatment Compliancy: Data and Analysis.................................................................................57 Introduction................................................................................... 57 Responses to Research Questions................................................ 58 Question 1.................................................................................................58 Question 2 .................................................................................................59 Question 3 .................................................................................................59 Question 4 .................................................................................................61 Question 5 .................................................................................................62 Question 6 .................................................................................................62 Question 7.................................................................................................64 VIII. Discussion............................................................................. 66 Hypothesis 1................................................................................... 66 Hypothesis II.................................................................................. 69 Hypothesis I I I ................................................................................ 70 Hypothesis IV ................................................................................. 71 Hypothesis V .................................................................................. 73 Hypothesis VI................................................................................. 74 vi R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. LX. Conclusions and Significance of the Project..................76 Comparative Summary:................................................................ 76 Original Hypotheses:................................................................... 78 Findings......................................................................................... 79 Practical Applications.................................................................. 81 Ethnographic Significance.......................................................... 82 Suggestions fo r Future Research:............................................... 84 References Cited.......................................................................85 Selected Bibliography............................................................... 89 Appendixes............................................................................... 91 Appendix A: Interview with Dr. Bertram L. Snyder.................................................................................... 92 Appendix B: Informed Consent Form & Informant Questions..............................................................99 Appendix C: Formidario De Consentimiento & Preguntas............................................................................. 103 vii R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. List of Photo Captions and Credits Figure Page Figure 1 A Botcmica (lierb shop) on Vermont, near the University of Southern California campus. Photo by Laura Rose R eiter.................. 5 Figure 2 The building that houses the offices of the TB Control Program, County of Los Angeles, on the comer of Adams and Grand, Los Angeles, California. Photo by Laura Rose R eiter..................... 10 Figure 3 3.1. Central District Health Center, County of Los Angeles Health Department, Los Angeles, California. Photo by Laura Rose Reiter............................................................................................15 3.2. Curtis Tucker Health Center, County of Los Angeles Health Department, Inglewood, California. Photo by Laura Rose R eiter.....................................................................................................16 3.3. Hollywood-Wilshire Health Center, County of Los Angeles Health Department, Los Angeles, California. Photo by Laura Rose Reiter............................................................................................17 Figure 4 Tent-like dwellings for tuberculosis patients in the 1900s. St. Luke’s Home, Phoenix, Arizona. Courtesy of the Academy of Medical Sciences of Maricopa Medical Society, Phoenix, Arizona..................................................................................................25 viii R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 5 An early 1900s Tuberculosis cabin on the grounds of St. Luke’s Hospital, Phoenix, Arizona. Photo by Laura Rose R eiter...............26 Figure 6 A plaque marking the former site of Desert Mission, Sunnyslope, Arizona. Photo by Laura Rose R eiter..........................29 Figure 7 One of the still existing TB dwellings near the site o f Desert Mission, Sunnyslope, Arizona. Photo by Laura Rose R eiter.......... 31 Figure 8 8.1. A photograph depicting the way of life of TB patients in the late 1800s and early 1900s. The photograph is part of the permanent TB exhibit at the Phoenix Museum of History, Phoenix, Arizona. Courtesy of the Museum. Photo by Laura Rose Reiter........................................................................................... 33 8.2. A photograph depicting the isolation of a TB patient in the early 1900s. The photograph is part of the permanent TB exhibit at the Phoenix Museum o f History, Phoenix, Arizona. Courtesy of the Museum. Photo by Laura Rose R eiter..................... 34 Figure 9 9.1. A TB cabin in Cave Creek, Arizona. Canvas fabric covered the windows to keep the sun out during the day. In the evening, the canvas was lifted to allow cooler air into the cabin. Courtesy of Cave Creek Museum, Cave Creek, Arizona. Photo by Laura Rose Reiter...........................................................................35 9.2. Spartan furnishings inside one of the three remaining TB Cabins in the State of Arizona. Courtesy of Cave Creek Museum, Cave Creek, Arizona. Photo by Laura Rose R eiter 36 9.3. A view of the interior of the Cave Creek TB cabin. Courtesy of Cave Creek Museum, Cave Creek, Arizona. Photo by Laura Rose Reiter...........................................................................37 ix R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Abstract This study examines issues related to the utilization of “modem” medical care in the diagnosis and treatment of tuberculosis (TB) among Guatemalans in the Los Angeles area. The topic was conceptualized against the background of a double historical context: as it was viewed and culturally conceived over past centuries, and how TB was treated during the early part of the 20th century in Arizona. Fieldwork was carried out among eleven Guatemalan TB patients receiving care at public clinics in the Los Angeles area. The thesis’ original hypothesis was that these patients would rely significantly on traditional folk medicine. This was not bome out by the study. Rather, all informants appeared to have accepted contemporary medical treatment as their therapy of choice. Thesis Committee Andrei Simic, Ph.D., Chairperson Joan Weibel-Orlando, Ph.D. Robbert Flick, M.F.A. x R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. I. Introduction Even though Latinos are the fastest growing ethnic population in the United States and are projected to be the largest ethnic group by the year 2000, relatively little health care research has been reported on this population (Molina and Aguirre-Molina (eds.) 1994: 70-72). Moreover, no studies concentrating on the indigenous people of Guatemala have been done in the Los Angeles County Chest Clinics. General awareness of Guatemalans in Southern California, most specifically in Los Angeles, has been obscured by the area's very large Mexican population. While Guatemalans share many characteristics with their neighbors to the immediate north, they are, nevertheless, ethnically distinct in their many cultural and linguistic nuances. For example, many Guatemalans in Los Angeles continue to speak one of the Mayan dialects, most commonly Kcmjobal, in their homes (McDonnell 1998:1; personal communication with Mayan couple 1995). However, in public and in their workplace, they often, though reluctantly, find it necessary to speak Spanish and, at 1 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. times, very limited English. This reflects the fact that they are experiencing a dual acculturation into American society. Prior to beginning my thesis, I became interested in researching Guatemalans with a Mayan background who had migrated to Los Angeles in search of a better life. A significant number of Hispanic Guatemalans, and perhaps as many as 20,000 Mayans, have settled in Los Angeles' poor urban barrios, namely the Pico-Union, West Lake, and South Central districts (McDonnell 1998: 1). Most of these people represent either an economic migration or are refugees from the violence of Guatemala's brutal civil war which has plagued much of the country's Highlands for decades, most seriously since the 1980s. Of this immigrant population, the majority are from poor rural backgrounds and have little formal education (McDonnell 1998: 1). Historically, because of their rich language, sophisticated writing systems and knowledge of math and astronomy, the Mayans remained distinct from the rest of the Latino population (McDonnell 1998: 1). Since they cherished and maintained their culture for centuries under adverse conditions, I questioned to what extent their traditions influenced their accommodation to life in a large American urban center. Specifically, I wanted to explore whether Mayans in Los Angeles preferred to seek medical treatment within their own folk system (derived in large part from the Classic Greek Hippocratic system of humoral medicine introduced into the Americans by the Spanish) (Harwood 1971: 1153) or, because of their assimilation into the 2 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. contemporary Western culture, did they seek treatment within the confines o f modem medical institutions, e.g., emergency rooms, clinics, private doctor's offices, and the like? I was first introduced to a Mayan couple who attended Saint John's Episcopal Church near the University of Southern California. An interview with the young couple was arranged by the priest and his wife, Gladys. Since she knew the Mayan couple well, she acted as an interpreter. The still traditional orientation of this couple was suggested as Emiliana, the young Mayan wife, wore a beautiful Guatemalan costume; the skirt (corte) was made of a thick multicolored fabric and the blouse was peasant-style (shupi). When I commented on the red-stripe colors of her corte, both the husband and wife smiled. They seemed pleased that I had admired the multicolored traditional Maya costume. During the interview, which dealt with whether they utilized folk medicine or visited ciirranderos(as) (healers) and/or botcmicas (herbal shops) (Figure 1), I found that, in times of illness, they generally first turned to family remedies, neighborhood healers, and then to Western medical doctors. However, I was also interested in knowing whether they believed in the Hippocratic humoral theory of disease. This theory, as previously noted, was introduced to Latin America by the Spanish and Portuguese during the 1500-1600s. The system is based on the belief that if the four humors (blood, phlegm, black bile, and yellow bile) are in balance, a person is healthy (Harwood 1971: 1153). In contrast, when there is an imbalance of the humors, an 3 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. individual becomes ill. These humors correspondingly exhibit qualities of hot and cold, and wet and dry. Each body is thought to have its own particular balance of these qualities. In the simplified Latin American variant, diseases are grouped only into hot and cold categories. Significantly, the couple's one-year-old child, tucked into the mother's serape, was recuperating from a bad cold. On the day of the interview, the mother had taken the child to several clinics in order to obtain a prescription for penicillin from a doctor. Since penicillin can produce a rash and/or diarrhea and is considered a hot substance (Harwood 1971: 1154), the mother believed that the penicillin would be the best treatment for the cold. Even after the mother used a home remedy (Vicks Vapor Rub), she indicated to us that she would continue to try to find a doctor who would give her penicillin for the child. Based on the mother's seemingly frantic attempt to obtain the drug, I am inclined to believe that the Hippocratic humoral theory of disease still played a considerable part in the mother's medical belief system. In other words, the couple had synthesized both systems of belief. R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 1 A botcinica (herb shop) on Vermont, near the University of Southern California campus. Photo by Laura Rose Reiter R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Although I had succeeded in finding a Mayan couple to interview before the onset of my research project, I soon learned that it would be difficult to locate people who had TB in such a small ethnic group within the Los Angeles medical community. This fact was later confirmed after reviewing the patients' charts at the Department of Health Chest Clinics. There was no mention of the patients' ethnic backgrounds, only their place of birth. This difficulty was also verified by Bryon Vasquez, the Presedente o f Casa de Cultura. His organization offers legal and immigration services to Guatemalans in Los Angeles. Although he had numerous clients who were bom in Guatemala, their ethnicity was not listed as Mayan. Thus, I realized from the very beginning of my research that it would be difficult to factor out of the general Guatemalan population in Los Angeles those individuals who were essentially Mayan, in contrast to those who had a more generalized Guatemalan or Hispanic identity. The study, in part then, examined issues related to the utilization of modem medical care among Los Angelenos who were bom in Guatemala and who had been diagnosed with TB while living in the city. Another aspect of the complexity of the project was that I was unable to photograph TB patients who I interviewed or observed at the Department of Health Chest Clinics. Although a photograph of a patient is generally in the patient’s file (in order for health caregivers to ensure that they are giving medicines to the proper person), the confidentiality of each patient had to be preserved. Therefore, I had to link a visual component to my thesis which did not include patients from the 6 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Department of Health clinics. Since this research took place in the western part of the United States, it seemed logical to search for locations in the Southwest where there was a history of TB camp sites and/or sanitaria. One such place was in and around Phoenix, Arizona. Thus, part of the thesis highlights the history of the TB patient in the Southwest, specifically Arizona in the late 1880s to the mid 1900s. The third section of the thesis focuses on the history and present condition of the tuberculosis culture. Although this information is limited in my discussion, at the very least, I wanted to emphasize to the reader that TB disease has not been eradicated in any culture. It is still a leading barometer of the social and economic climate of all societies. R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. II. Project History and Methodology Before the actual start of my research in January 1996 in Los Angeles, I made initial contacts with the American Lung Association and the CIGNA Infectious Disease Clinic in downtown Los Angeles. Although the American Lung Association (ALA) contacted some community health nurses on my behalf, all leads were futile as each agency and health care worker had to protect the confidentiality of patients. Therefore, they were unwilling to divulge any information to me without proper clearance from the County of Los Angeles Health Department. Needless to say, it was extremely difficult to map out the route which would allow me to obtain data for this project. In January 1996, I contacted TB Control, Department of Health, in Los Angeles (Figure 2), and discussed my research proposal with an epidemiologist and a Public Health Analyst. I prepared an abstract of my proposed study (including its visual aspect) and submitted both to the TB Control Research Committee for approval. In May 1996, I met with the Research Committee which consisted of both 8 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. physicians and public health nurses. They approved my research. At the end of July 1996, the Director of TB Control, Dr. Paul Davidson, informed the physicians and public health nurses that I would be contacting them in order to begin my research on Guatemalans who had been diagnosed with TB. During this period, I designed and wrote an Informed Consent Form in English and Spanish and submitted it to the Director of TB Control. It, too, was approved by the appropriate persons at that agency. In August 1996, I signed forms regarding the confidentiality of information contained in the TB Control reports and Department of Health patient files. At the end of August, I completed an application for employment at the Department o f Health, and had my picture taken for an ID badge. It identified me as a "Special Health Officer" with the County of Los Angeles, Department of Health Services. I was required to wear the badge each time I entered a Department of Health Clinic and when I attended the monthly TB Conferences at the Orthopedic Hospital in Los Angeles. R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. C O U N T Y OF L O S ’ A hlG E L E S Figure 2 The building that houses the offices o f the TB Control Program. County of Los Angeles, on the comer of Adams and Grand. Los Angeles. California. Photo by Laura Rose Reiter R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. In early September 1996, I sent a formal letter to the relevant clinics introducing myself to the medical staff. I attached the abstract and a copy of the letter that Dr. Davidson had written to the clinic doctors and nurses. During this time, I prepared a questionnaire in Spanish and English and submitted it to the various clinicians for their approval. Since I am not fluent in Spanish, I requested an interpreter for some of my interviews. As it turned out, my interpreter was very cooperative and helpful, but he left the Department of Health not long after my first interviews. Further delays in finding another interpreter caused a halt in interviewing for over six months. In early October 1996, before I could begin my project, I had a TB skin test performed (Mantoux) at the University of Southern California's Health Center. The test was negative. It was necessary to have another test done three months after I completed my interviews. It, too, was negative. After obtaining a list of suspect/confirmed patients from TB Control who were bom in Guatemala, I contacted the relevant staff at three of the Department of Health Chest clinics, namely Central, Curtis Tucker, and Hollywood-Wilshire. I initially made some contacts during the summer months with a few doctors and nurses at the clinics, but it was not until I had the clearance from the Department of Health that I was accepted as a researcher from the University of Southern California. I assured them that I had conducted confidential interviews prior to this 11 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. study and that I had previously successfully completed a nationally funded research project.1 The procedure for reviewing the charts was complicated. I first had to contact the District Health OSheer in the relevant clinic, informing him/her of my research plans. Then I made contact with nurse managers in each clinic, informing them that I needed to review the charts and to arrange a convenient time for them to help me. Once I was able to request the charts from the Record Room, I spent a number of hours reviewing them. After taking copious notes on the history of each patient, I then determined when each patient had an appointment at the clinic. Sometimes it was difficult to find the required information. The charts were divided into various sections, and in many cases the handwritten notes were illegible and confusing. At one point, I became aware that there was an error in a patient's history. In this case, the record stated that the patient was bom in Mexico City. However, when I interviewed him, he said that he was bom in Guatemala. Nevertheless, in spite of this error, I generally found the demographic information accurate at TB Control. Perhaps when the initial interview occurred, there was a language barrier that caused this confusion. 1 “Well-Being and Pet Ownership Among Single Senior Adults,” funded by the Retirement Research Foundation, Chicago, Illinois at the Center for Gerontological Education, Research and Services of the University of Notre Dame, Notre Dame, Indiana. 12 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. The logistic complexity of the project became evident in many ways. For example, I next needed to be fit-tested for a mask as a precautionary measure. The Occupational Safety & Health Administration (OSHA-N95) mask is the most effective mask used by health care workers in treating TB patients. The process was rather interesting. Once the mask was properly situated on my face, saccharin was pumped into the mask a number of times. I had to move my head from side-to-side and speak while the saccharin was infused. If I smelled the saccharin, the mask was not fitting properly. It was a proper fit; I smelled nothing. After reviewing the relevant patients' charts, I was finally ready to interview the first informant on October 29, 1996. It took almost six months from the time my research was approved by TB Control in May 1996 to obtain clearance to visit the clinics and interview patients. I have been told that this was a relatively short time to obtain all the preliminary research protocols approved by TB Control and the Department of Health. The interviews, as previously indicated, were conducted (with one exception) over a period of two years at the Chest Clinics of the Los Angeles Department of Health (Central, Curtis Tucker, and Hollywood-Wilshire) (Figures 3.1, 3.2, 3.3). One informant was interviewed at a clinic on USC's Health Sciences Campus. However, she was also a patient at Central’s Chest Clinic. In one instance, one of the interviews continued at the informant's house. Since she was a participant in another study and 13 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. was familiar with the research protocol, she was eager to cooperate in my study. I was also fortunate to have the interpreter with me on both occasions. 14 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 3.1 Central District Health Center. County of Los Angeles Health Department. Los Angeles. California. Photo by Laura Rose Reiter 15 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 3.2 Curtis Tucker Health Center. County of Los Angeles Health Department. Inglewood. California. Photo by Laura Rose Reiter 16 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. i m m * Figure 3.3 Hollywood-Wilshire Health Center. County of Los Angeles Health Department. Los Angeles. California. Photo by Laura Rose Reiter 1 7 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. III. Historical Perspectives: Tuberculosis, Idealization, and Facts In order to better understand TB and the relationship of this disease to the behavior of my Guatemalan informants, I endeavored to explore its historical context. This underscores the issue of cross-cultural variation in medical beliefs and practice, be this viewed in a historical or a regional frame of reference. Tuberculosis (TB) has been present since ancient times. Archaeological evidence suggests that TB afflicted prehistoric peoples; both men and women have been afflicted with TB since at least the Neolithic period. In China, for instance, a woman's body from the early Han Dynasty (206 BC-AD7) showed scarring from TB in her lungs (Kiple 1993: 1062). There is evidence of tuberculosis in the thoracic spine of a young man who died in Germany around 5,000 BC (Ryan 1992: 5). Even though TB was, and still is, the greatest killer in history, the majority of the world's population still dismiss it as a disease that afflicts poorer and less fortunate persons (Garrett 1994: 513). The word "TB" appeared in the middle 1800s, but the word was not used very often until the early 1900s (Rothman 18 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. 1994:180). In 1882, Robert Koch, a German scientist, discovered that TB was caused by a bacterium, Mycobacterium Tuberculosis (Feldberg 1995: 36-37). It was surprising to many people that this bacterium can cause TB disease in any part of the body, not just the lungs (Centers for Disease Control, TB Fact Sheet 1993). During the 19th century TB was romanticized and was often mentioned in the literature of the time. According to Susan Sontag, "the romantics invented invalidism as a pretext for leisure and for dismissing bourgeois obligations in order to live only for one's act" (Sontag 1978: 33). TB, or consumption as it was called at that time, was a convenient disease to justify the “artiste's” odd behavior. For example, Stephan Crane, author of The Red Badge o f Courage, a novel about the Civil War and a book that marked the beginning of America's modem fiction (Chowder 1995:109), contracted TB in the early 1890s while living in squalor with artists and students in New York City. In 1898, after participating in the war in Cuba, Crane returned to England and died a miserable death from TB at the age of twenty-eight. Franz Kafka, the Czech-bom German-Ianguage writer, also died at an early age of TB in a sanitorium near Vienna, Austria (Encyclopedia Britannica 1999: 3). Although he literally starved to death because TB had destroyed his upper larynx, he used his suffering to foster his brilliant writing (Simic 1996:1). Numerous other artists, musicians, poets and even an emperor, also died at an early age from TB—among them were Edgar Allan Poe, Thomas Mann, Charles 19 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Dickens, Henry Thoreau, John Keats, Frederic Francois Chopin, and Napolean Bonaparte (Bryder 1988: 199). TB was considered a “disease of the soul” since it most frequently appears in the lungs (Sontag 1978: 17-18). Lungs were viewed as the organs of life, of breathing, and were, therefore, thought to be the spiritual part of our existence (Sontag 1978: 17-18). It is understandable, then, that the Romantics thought of themselves as soul-searchers, sensitive, and different from the rest o f the society. The disease made the TB patient in some ways quasi-sacred, special and set apart. It was also fashionable to appear thin, pale, and gaunt—all representative of the suffering TB patient (Barnes 1995: 48-62). In essence, the myth of TB allowed the creative person to adapt to a Bohemian lifestyle. It was also permissible in the eyes of the Romantic to drift in and out of society and to cultivate a lifestyle (Sontag 1978: 32) where travel provided a form of frequent escape from reality (Sontag 1978: 36). Some favorite escapes for the TB patient in the 1800s were to sunny locations in Italy and other areas on the Mediterranean Sea (Sontag 1978: 33). For many years the warm climate was thought to be a cure for the disease. It was also common in many parts of the world to isolate TB patients from the rest of society and, because of this isolation, a feeling of sadness or melancholy on the part of the patient was considered a mark of refinement (Sontag 1978: 28). During the late 1800s and well into the 20th century, there was a movement to create separate institutions (sanitaria) for TB patients. Dr. Ed Trudeau, a physician 20 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. from New York who had TB, introduced the concept o f isolating TB patients. He founded the Adirondack Cottage Sanitarium at Saranac Lake in Upstate New York (Feldberg 1995: 34). The idea of rest in an idyllic setting, proper nutrition, and fresh air (either hot or very cold), all were regarded as an effective treatment for TB, even though it could not be cured completely by these methods. In 1890, Denver, Colorado, became a haven for TB patients. The city provided clean, cold, dry air. The lure of the mountains or desert continued to draw TB patients even after streptomycin was discovered in 1944 (Ryan 1992: 230). It proved to be a miracle drug of its time. In 1946 and 1952 respectively, para-amino salicylic acid and isoniazid (TNH) also proved to be an effective treatment for TB when it was used in conjunction with streptomycin. Once these medicines could cure the TB disease, many of the myths about TB vanished (Feldberg 1995: 7). No longer could the medical profession look to individual passion to explain this illness, as this concept was now replaced by germ theory and the realization that social conditions such as overwork, low wages, poor sanitation, etc. caused an increase in TB disease (Feldberg 1995: 34-35). Tuberculosis, then, was no longer considered an artist’s disease, nor was it considered a mark of refinement in those that had contracted it. Thus, the success of the various drug therapies and the fact that the TB patient was now able to be cared for outside a sanitarium lead to the decline of the romantic literary vision of TB (Barnes 1995: 58-73). One of the last TB Sanitoria in the 21 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. United States to treat patients was the National Jewish Center in Denver, Colorado. It closed its doors in 1990 (Garrett 1994: 524). Although TB declined after WW II, it has been on the rise since the mid- 1980s. In 1993, the World Health Organization (WHO) declared that TB was a global emergency (World Health Organization [WHO], Tuberculosis Fact Sheet 1998). • It is estimated that by the year 2020, nearly one billion more people will be newly infected. Two hundred million will get sick, and 70 million will die from TB—if control is not strengthened. • Someone in the world is newly infected with TB every second. Nearly one percent of the world's population is infected with TB each year. Overall, one-third of the world's population is infected with the TB bacillus, and five to ten percent of people who are infected with TB become sick or infectious at some time during their life. (World Health Organization [WHO], Tuberculosis Fact Sheet 1998) These are alarming statistics; yet, many people in the world are complacent about this disease, believing it will not affect them. 22 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. IV. Historical Field Research: Visualizing the Past In the spring and summer of 1997, I embarked on the historical and visual aspect of my thesis. Since I was a frequent visitor to Phoenix, Arizona, I soon discovered that the city and its environs were the sites, during the late 1880s and well into the 20th century, of desert communities for TB patients. These health seekers, called "lungers" (Rothman 1994: 216-217), traveled from all parts of the United States to Arizona. By the time they had reached their destination, they had little or no money left for housing (Kravetz, Kimmeiman 1998:52). Moreover, they were also shunned by the permanent residents because of their contagious disease. Since there were few hospitals and few, if any, hotels that would accommodate them, they had to find other lodging (Kravetz 1995: 51). Tents were set up within the city limits to house them, but discrimination continued. For instance, shortly after WW I, the city of Tucson, Arizona, passed an ordinance that restricted those ill with TB, other lung ailments, and influenza from spitting on the streets or living in tents (Sunnyslope Historical Society Archival materials). Thus, tent-like camps sprang up outside the 23 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. city limits. Although many of the WW I veterans with TB were given cottages in which to live, others had to continue living in tents or shacks outside the city limits (Kravetz 1995: 49). TB camps continued to flourish, not only in Arizona but in many other parts of the country until after WW E L Tent-like sanitaria in the Phoenix area also sprung up in the early 1900s, and one of the first institutions that treated TB patients in such facilities was St. Luke's Home (Figure 4). In 1907, the Home, which was situated just outside the city, became the largest and most successful sanitorium in the area (Kravetz 1995: 52-53). Even today one is visually reminded of how TB patients were treated during this period. On its property, St. Luke's has an original TB Cabin (Figure 5). It is now only used during the Christmas season as Santa's House. As with other hospitals in the Phoenix area, St. Luke's Home (in 1950 it became St. Luke's Hospital) was founded by an East Coast clergyman who later became the Episcopal bishop of Phoenix. His wife died of TB in 1907 and, shortly after her death, he founded St. Luke's Home. He was distraught over the lack of medical facilities and the previous poor care of his wife, and, in 1911, an infirmary was built in order to care for TB patients. Eventually, the tent-like dwellings gave way to cottages (Kravetz 1995: 51). 24 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 4 Tent-like dwellings for tuberculosis patients in the 1900s. St. Luke's Home. Phoenix. Arizona. Courtesy of the Academy of Medical Sciences of Maricopa Medical Society. Phoenix. Arizona. R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. m S B w m Figure 5 An early 1900s Tuberculosis Cabin on the grounds of St. Luke's Hospital. Phoenix. Arizona. Photo bx Laura Rose Reiter 2 6 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. During the early 1900s, another location populated by the TB patient was an area called Sunnyslope, about nine miles north of Phoenix. At the time, it was a convenient haven for TB patients who continued working in and around Phoenix (personal communication with the Director of Sunnyslope Historical Society, 1997). Sunnyslope, too, has its own impressive history of helping TB patients with their medical needs. During the WW I period (1914-1919), people living in tents and shacks desperately needed medical, spiritual, and emotional support (Thome 1981: 2). These people were also practically penniless. They had traveled from various parts of the United States seeking the warmth and dry desert air in order to cure their diseases. A number of women, most importantly Elizabeth Beatty (who later donated her home to the Desert Mission) and Maraguerite Colley (a practical nurse and social worker), realized the dire emotional, spiritual, and physical needs o f the TB patients in this camp-like setting. They were aptly called the "Angels of the Desert" as they went from one dwelling to another helping the poor and the sick (Kravetz and Himmelman 1998: 53). They cared for TB patients, giving them medicine, food, and spiritual and emotional hope. Usually, they would find the patients outside on their porches in hammocks as fresh air was thought to be part of their cure. Many of the sick were isolated from the rest of their families, but in some cases other members of the family, some healthy, some sick with TB, would also live in cramped quarters. There were also missionaries and other clergy interested in helping the ill, and in 1925 a Sunday School in Sunnyslope was established for its TB patients. In 1927, 27 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. a chapel was dedicated and, from that time on, this mission station was identified as the Desert Mission of Sunnyslope (Thome 1981: 4) (Figure 6). In 1929, the first medical clinic was established in Sunnyslope, and physicians would go to the clinic twice a week in order to care for the sick. In many cases, the cost of the treatment was nominal or free if the patient could not pay for treatment. The Desert Mission grew fast, and by 1930 there were over 700 people in the community. It continued to expand with numerous buildings built for convalescent needs, entertainment, schooling, and religious purposes. In 1935, the Desert Mission was incorporated. The community continued to grow, and, in 1951, it was licensed by the Department of Health and Welfare in Arizona (Thome 1981: 15). In 1954, the Convalescent Hospital became an acute care center, distinguishing itself from the rest of the Desert Mission. Today it is called Lincoln Hospital and is highly respected in the Phoenix and Sunnyslope community. 28 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. t ' » » > ' U i r * < - . . • '• J i c W i i ' L r f • J * > : . ’ . • • - • ' ; > • f / • < - « • ' : T -T t> > v« i i / m i l l i o n • •• . ' ‘ * ;‘ArJ iin i r r i '■ [h e r. C o n ■ ' ...■ : i > u k t > ->* - './i i- j iu ' V V u J i i t r I'.-.'- - t J > « / < » i o > r W n s f i o n Hi 'J j - l l t r /A V r* * .'-'. . " • ’ . inf-* I v / ^ V . 1 4 / 'yV**, Figure 6 A plaque marking the former site of Desert Mission. Sunnyslope. Arizona. Photo bx Laura Rose Reiter 2 9 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. In order to photograph the area that was once home to TB patients, I contacted the President of the Sunnyslope Museum. At the museum, I reviewed a scrapbook depicting the TB camps and other archival materials. With the generous help from the Sunnyslope Museum President, Polly Martino, I was able to locate and photograph a few cottages that once housed TB patients and their families (Figure 7). One of the oldest structures still remaining was built in 1914. In researching the rich historical material that was documented by the Sunnyslope Museum, I was also fortunate to learn that a doctor who cared for TB patients in the 1940s was still living in the area. Dr. Snyder, now in his eighties, was himself diagnosed in 1936 with TB while he was in medical school. In subsequent years, he was afflicted with TB two more times, the last in 1941. In 1942, coming from the Midwest and having settled in the Sunnyslope area, he became interested in helping the TB patients who were living in the area. Dr. Snyder soon became director of the Desert Mission Clinic and served the community until 1946. (see attached interview in the Appendix section). Other treatment centers in the Phoenix area were established during the early decades of 1900, namely St. Joseph's and Good Samaritan Hospitals. A state sanitarium was also built in Tempe, Arizona. It was close to downtown Phoenix and was the last sanitarium built in the United States for TB patients. 30 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 7 One of the still existing TB dwellings near the site of Desert Mission. Sunnyslope. Arizona. Photo by Laura Rose Reiter 3 1 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. In my continuous search to document more TB cabins in Arizona, I met with the staff from the Phoenix Museum of History. They helped me locate relevant archival materials and allowed me to photograph the permanent TB exhibit in their museum (Figures 8.1 & 8.2). On another trip to Arizona, I was able to photograph a TB Cabin in Cave Creek (Figures 9.1, 9.2, 9.3). This area outside of Phoenix was also a favorite place for a TB cure during the late 1800s and early 1900s. The TB cabin normally had very little furniture or other comforts in its small space. Patients would often lay in hammocks outside on their porches. Canvas slats on the windows or other openings were closed during the day to keep out the extreme heat, and at night opened, to let in the cooler air (Cave Creek Museum Archives). In most cases, cabins were situated in sparsely populated areas and TB patients were often isolated from other healthy family members. 32 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 8.1 A photograph depicting the way of life of TB patients in the late 1800s and early 1900s. The photograph is part of the permanent TB exhibit at the Phoenix Museum of History. Phoenix. Arizona. Courtesy of the Museum. Photo by Laura Rose Reiter 3 3 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 8.2 A photograph depicting the isolation of a TB patient in the early 1900s. The photograph is part of the permanent TB exhibit at the Phoenix Museum of History. Phoenix. Arizona. Courtesy of the Museum. Photo by Laura Rose Reiter 34 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 9.1 A TB cabin in Cave Creek. Arizona. Canvas fabric covered the windows to keep the sun out during the day. In the evening, the canvas was lifted to allow cooler air into the cabin. Courtesy of Cave Creek Museum. Cave Creek. Arizona. Photo by Laura Rose Reiter 3 5 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 9.2 Spartan furnishings inside one of the three remaining TB cabins in Arizona. Courtesy of Cave Creek Museum. Cave Creek. Arizona. Photo by Laura Rose Reiter 3 6 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Figure 9.3 A view of the interior of the Cave Creek TB cabin. Courtesy of Cave Creek Museum. Cave Creek. Arizona. Photo bv Laura Rose Reiter R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Even though the desert climate was helpful to TB patients, before Streptomycin was discovered in 1944, the treatments consisted of drastic surgical measures. Some o f the procedures that Dr. Snyder described in his interview were common during the early twentieth century. For example, pneumoperitoneum was a procedure by which air was introduced into the peritoneal cavity. The air would collect under the diaphragm and push the diaphragm up, thereby collapsing the lung (Snyder personal interview: 1997). This procedure allowed the diseased cavity of the lung time to heal (Ryan 1992: 28). Artificial pneumothorax was a similar procedure by which air was forced into the pleural cavity to cause the collapse of one lung. This allowed the lung to rest the cavities in it to heal. An operative procedure called thoracoplasty was carried out on the thorax. It removed portions o f the ribs in stages in order to collapse the diseased areas of the lung (Kiple (ed.) 1993: 1727). Obviously, these methods were drastic and were not used unless there was little other hope of recovery. Although these methods o f treating TB have been abandoned today in the United States, I found that there were common characteristics in respect to how TB patients were treated in the early 1900s through the late 1940s in Arizona and how those contrasted with contemporary methods employed by today. For instance, in the first half of the 20th century when TB was diagnosed in the patient, rest, sunshine, extreme weather conditions, such as a hot or cold climate, were recommended for 38 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. the cure. Once streptomycin and other TB medications were used to treat TB (from 1944 forward), however, the patients were free to return to their normal way of life. According to Dr. Snyder, many patients got better without isolation, but others had to be isolated either in their homes or in the hospital for an extended period of time. Dr. Snyder stated that “nowadays they don’t want to wait that long.” Today, TB patients are usually isolated for a few days in a hospital, immediately started on TB medications, and if they feel well enough, they soon resume their normal way of life. Another example is that today, community health nurses or other relevant caregivers go to the patient’s home, work-place, or other designated place to give medication (Directly Observed Therapy [DOT]). If the patients are not on DOT, they are still monitored by caregivers in the Department of Health Chest Clinics. Likewise, the TB patients in Arizona in the early decades of the 1900s were treated much the same way. The “Angels of the Desert” visited the TB patients in their homes and dispensed medicines, food, clothing and other needs (Kravetz and Kimmelman 1998: 53). In the Sunnyslope area, the doctors visited the ill at the Desert Mission Clinic at least twice a week. Although the patients in Los Angeles are usually seen once a month in the clinics, they may go to the clinic daily for their medications and, if there is an adverse reaction to one or more of the TB drugs, the patients are immediately seen by the doctor(s). When I asked Dr. Snyder if he knew whether any of his patients used folk remedies or had gone to non-Westem physicians, he stated that there were many 39 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. quacks attempting to treat the sick; however, he minimally knew if his patients saw other types of doctors or had used folk medicines. Likewise, with the Guatemalan patients, as one nurse stated, “as long as they take their TB medicines, as required, it is OK if they use a folk remedy. However, it is very important to tell the caregivers that they are taking such a remedy.” The nurse also stated that he had no acknowledge of patients seeking non-Westem physicians. Thus, my study indicated that both societies, though perhaps not to the same degree, have converged in the direction of greater application of empirical knowledge regarding the origins and treatment of TB. 40 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. V . The Nature of Tuberculosis: Present State of Knowledge TB is spread by tiny airborne germs. A person who has active TB can spread the disease simply by coughing, sneezing or talking. Once TB has been diagnosed, it is urgent that the patient be started on medications immediately. At the same time, it is imperative that those who have come into close contact with the patient also be tested for TB disease. It is also significant that some persons may be infected with TB bacteria but do not develop active TB disease. The person who is infected with TB does not have any symptoms nor can the disease be spread. However, if that person's immune system is weakened at some point in his/her life, TB disease can develop. As previously mentioned, the bacterium Mycobacterium Tuberculosis causes TB. The bacteria multiply and can attack different parts of the body (Centers for Disease Control 1994: 5). According to the CDC, the population at most risk for TB may have one or more of the following conditions: 41 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. • They may be infected by the HTV virus. • They may be abusing drugs or alcohol. • They may have cancer (leukemia, Hodgkin's disease, etc.). • They may have diabetes. • They may be homeless. • They may be in prison or have been in prison. • They may be a migrant worker. • They may have come to the United States from parts of the world that have a high rate of TB disease, such as Central and South America, the Caribbean, Asia, or Africa, among others. Since TB is spread through the air from one person to another, spending long periods of time with a person infected with the TB bacteria can greatly increase the risk of contracting it. Once the person has been diagnosed with active TB, he/she must be treated immediately with appropriate medicines. It must be emphasized that TB can be cured. Symptoms of TB include a bad cough lasting longer than two weeks, a pain 42 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. in the chest, blood or phlegm coughed up from deep inside the lungs, fatigue, weight loss, loss of appetite, chills, fever, and night sweats. The Mantoux test is commonly the first step in TB diagnosis. A small amount of tuberculin is injected under the skin, usually on the lower part of the arm, and the result is read after 48-72 hours. The diameter of induration (which is a hardening of an area at the locus of injection) is based on its measurement not the erythema (the extent of redness) (National Tuberculosis Training Initiative. (1994): 13). If the test proves to be positive, a person must have a chest x-ray. A sample of phlegm must also be taken. If further testing shows a positive reaction, then a person must be started on TB medications. It must also be noted that some people test positive but do not have TB. Among other causes, a positive reaction may be the result of previously being administered the Bacille Calmette-Guerin (BCG) vaccine. This vaccine is not widely used in the United States (Ryan 1992: 412). However, it is a common procedure in other countries. Once a person has been vaccinated with BCG, he/she will most likely have a positive TB reaction throughout life. It is important that this information be given to health caregivers so that a person is not automatically started on TB medications. Another reason for a positive reaction may be a case where a person has spent a great deal of time with a TB infected person. According to the Centers for Disease Control, a tuberculin reaction of 5mm or more is classified as positive if: 43 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. 1 . a person had recently come into contact with a person who has infectious TB, 2. a person had an x-ray that showed previous TB disease, or 3. a person was an HTV suspect or known as having HTV infection (National Tuberculosis Training Initiative 1994: 13). Note that up to 30% of patients who do not have HTV infection, and 60% of patients with AIDS may have skin test reactions less than 5mm even though they are infected with the tubercle bacilli. Also, a newly infected person may not yet have a reaction to the tuberculin skin test. According to CDC, a tuberculin reaction of 10mm or more is classified as positive if: 1. a person has other medical risk factors such as diabetes, silicosis, or 2. prolonged corticosteroid therapy, or 3. a foreign bom person comes from a low-income populations with a high rate of TB, or 4. a person uses intravenous drugs, or, 5. a person is living in a long-term facility, such as a prison or nursing home. A tuberculin reaction of 15mm or more is classified as positive in all other persons (National Tuberculosis Training Initiative, 1994: 11-18). 44 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. In recent decades, treatment of TB has become increasingly sophisticated as reflected in the broad spectrum of effective drugs in use. For instance, the most common l'Mine drugs used to treat tuberculosis are isoniazid (known as INH), rifampin, pyrazinamide, ethambutol, and streptomycin. Some adverse reactions to 1 st-line drugs are hepatitis (INH can cause this), stomach upset, and rash, among others. Since there are many TB bacteria in the body and they are difficult to kill, several drugs are used in combination to combat them. Whenever a patient has to take two or more drugs together, there are changes in the body due to the numerous drug properties. A TB patient who has a susceptibility to one or more of the 1 st-line drugs is likely to become contagious again (Ryan 1992: 40-71). Doctors and other health caregivers must, then, become involved in the new treatment which consists of 2nd-line drugs. These medications are more potent and damaging to the body than the 1 st-line drugs. Some of the 2n d -line drugs are amikacin, capreomycin, cycloserine, ethionamide, kanamycin, ethambutol, ciprofloxacin, ofloxacin, clofazimine, and rifabutin. Susceptibility to the 2nd-line drugs is also a possibility. If this occurs, the patient is considered to be critically ill and death could occur from the TB disease. Some of the adverse reactions to 2nd-line drugs affect the auditory, vestibular, and kidney functions (American Thoracic Society 1994: 1359-1374). 45 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. In April 1998, Directly Observed Therapy (DOT) became the required method of treatment for all patients in Los Angeles County’ s Department of Health clinics. Many doctors in private practice refer their TB patients to the Department of Health clinics to ensure that they complete their course of treatment. "DOT is defined as delivery of every dose of medication by a health care worker (HCW) who observes and documents that the patient actually ingests or is injected with the medication. Delivery alone to the patient without observation and documentation is not DOT." (Davidson and Haughton 1998: 1). DOT can be administered several times a week or every day with Saturday and Sunday's dosage left with the patient on Friday. Once on the TB medicines, a patient is monitored closely by the physicians, nurses, and other health caregivers. It usually takes six to nine months to kill the TB bacteria. For patients with HTV infection, the time period is longer, usually nine months or longer. If a person is resistant to one or more of the Inline drugs, the length of time is considerably longer, sometimes taking over two years. In order to keep TB from spreading further into the population, a patient is advised to follow a new routine and lifestyle. These routine changes include: 1. taking all medicines as prescribed and on time. As previously noted, the medicines are usually taken daily, and in some cases, 46 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. several times a week. Now that DOT is required, it is easier for the health caregiver to monitor compliance and potential resistance to one or more drugs; 2. keeping all clinic appointments. The TB patient is usually seen every month from six to nine months, if not susceptible to 1 st-line drugs; 3. repeating tests (x-rays and sputum collection) to monitor the progression of the disease, and 4. isolating him/herself for several days to several weeks depending on the length of the contagious state. The patient is usually put in an isolation room in the hospital for several days after seeing a physician in the Los Angeles hospitals. Later when at home and once the medicines have started to work, the patient may resume work and a normal routine. However, it is important that he/she avoid close contact with other people as much as possible and stay in well-ventilated rooms until the contagious state is under control. 47 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. VI. Population Sample Although I am continuing my research with Guatemalan patients in Los Angeles, for the purposes of this project, I have limited my sample to eight informants (five females and three males) whom I interviewed, and three informants (two females and one male) whom I observed. One other informant (female) broke numerous appointments, so I was unable to interview her. Although I was not successful in this respect, I thought it significant that she did not show up for her appointments. It turned out that she was the only informant in my study who was not diagnosed with TB. All others had TB disease.2 2 TB disease is caused by a bacterium called Mycobacterium Tuberculosis. It is an illness whereby the bacteria multiplies and attacks different parts of the body. This differs from someone who has TB infection. A person who has TB infection is one who has inactive TB bacteria in the body. It can, however, become active TB if the immune system is compromised at a later date. For further discussion of the characteristics of TB, see the pamphlet entitled Questions and Answers About TB, Centers for Disease Control 1994: 17. 48 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Interviewed Informants The informants' ages ranged from 16 to 75 with a mean o f 36.5 years. Of the eleven informants interviewed or observed, only two spoke enough English to answer my questions in English. The remaining nine informants understood little or no English. Ail informants were bom in Guatemala. All had lived in Los Angeles for quite sometime. For example, one informant had been living in Los Angeles since 1979. Five informants were working (three males and two females) and two informants (female) were not. One informant (female) was in school. Lastly, all the informants lived with family members in Los Angeles. In addition to the above informants, I reviewed a much larger number of patient charts, but due to the following issues, I was unable to include them in my research: 1. The patients’ scheduled appointments overlapped and the three clinics were not close in distance. 2. Some patients had completed their treatment and their charts were not yet administratively closed. 3. Some patients failed to keep their appointments. 49 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. 4. Some charts were with the community nurses or were in the process of being given to them. For example, at the beginning of my research, I alerted one of the managers in the Curtis Tucker Business Office that a patient had broken an appointment and her chart did not indicate a follow-up appointment. The staff person was grateful that I had caught the error and the community worker involved was notified. 5. In other cases, many of the charts indicated that the patient was not yet diagnosed as having a confirmed case of TB. As noted, all the informants whom I interviewed or observed were diagnosed with TB disease. The informant, who continuously broke her appointments, was a TB suspect, and later turned out not to have the disease. 6. Another reason that charts were missing was that doctors, nurses, staff in the Business Office, and public health nurses all had access to them, and they were often unavailable. In still other cases, patients had moved away and could not be traced. Although eleven informants represent a very small sample, I believe that the results of my research can contribute insights for further research within a larger R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. population. Moreover, there is no reason to believe that my informants are atypical of Guatemalan immigrants in terms of their attitudes and behavior regarding this disease. Field Observations In this section, then, I will discuss my observational experiences with the three informants I could not interview and, in the next section, I will present my seven questions and responses to them by the eight informants. Since I could only observe two female informants and one male informant (due to a lack of an interpreter), I decided to communicate with them in nonverbal ways in order to compensate for our limited conversational abilities. For example, I played with their children and laughed and smiled with each of the family members. In fact, if the informants understood some English, I would ask them for the Spanish word that best described what we were talking about. In other words, I wanted to establish a rapport during their clinic visit as I had hoped that I would be able to interview them at another time. One advantage to not having an interpreter with me on these occasions was that I could devote more time in observing the communication between the patients and doctors. I left each clinic visit greatly encouraged by the professional expertise of the doctors and nurses who cared for these patients, and I 51 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. was also greatly enriched by the patients’ acceptance of me even with a language barrier. The first informant that I observed only had previously broken his clinic appointment. He, however, was a patient on DOT and was still being monitored daily by the community worker. In this type of situation, the patient is contacted after the missed appointment and a new appointment is scheduled. Since I was aware that the patient frequently missed his clinic appointments (based on information in his chart), I did not ask for an interpreter. I arrived at the clinic and waited until long past his appointment time. He eventually arrived; however, I had to leave soon after he started his office visit. The patient did not show up for the next month’s appointment. While waiting for him (thinking that he would arrive late), I spent some time talking to one of the doctors. I questioned him about why vitamin B6 was commonly given to TB patients. He stated that it lessens an adverse reaction to the INH drug. Our conversation aroused the interest of a nurse who joined in. The doctor showed me a chart displaying various ways of treating TB and, during the course of the conversation, handed over the chart. The nurse then asked the doctor if he could get the same chart for his use. During our discussion the doctor claimed that clinical symptoms of TB were just as important in diagnosing TB as lab and x-ray reports. I then asked him if he had communication problems with his patients. He said “no” because the nurses were bilingual. He emphasized the importance of team work and 52 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. said that the Department of Health instilled this teamwork morale in all of the health caregivers. The third attempt at an interview with the informant also proved fruitless. Similarly, he broke the next month’s appointment. Finally, at the following month’s appointment the patient arrived and, since he had previously missed appointments, I did not contact the interpreter for fear of another broken appointment. Subsequently, I asked a nurse if she would ask the patient if he would take the questions home and bring them back the following month. The informant agreed but he did not return the questions. In regard to broken appointments, he explained that he frequently missed his clinic appointments because it was difficult to take time off from work as no one there knew he had TB. The second informant was a patient the nurses labeled as illiterate. The caregivers seemed impatient with her as the mother seemed disinterested in what they were instructing her to do. She continued to look down at her baby while they were talking to her, and I sensed that this was an example of a problematic communication between the patient and health caregivers. Unfortunately, I was never able to find the root of this problem. However, I did make my own connection with the informant by playing with her children in the waiting room. When the mother was called to get an x-ray, she smiled and handed the baby over to me. This was an interesting experience as it seemed she had quickly established a bond with me in the clinic setting. The child, however, would not eat or sleep while I was holding her but, once she was put 53 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. in her mother’s serape, she fell asleep. It is interesting to note here that this informant was the only Mayan patient observed in my study (her ethnicity was reported to me by one of her family members). When I mentioned the miscommunication to a doctor at USC, she was aware of another similar situation where the patient, a Mayan, was difficult to treat. Is it possible that this population is different from the Hispanic Guatemalans studied in this report? This would be an issue worth further investigation in respect to cultural barriers to contemplating Western medical treatments. At the third visit, a number of relatives came with the mother and child. I spent time again playing with the older children in the waiting room while the mother and baby were examined. I learned from the nurse that the baby was going to be taken off the TB medicines that day. This showed compliance, whether it was mainly due to the diligence of the health caregiver or, at best, sufficient cooperation from the mother to restore the child’s health. I then asked one of the family members if he would ask the mother to complete the questionnaire and bring it back the next time they had a clinic appointment. He said that he would see to it. Of course I never received the information. One interesting comment made by the relative though, was that the informant’s husband was in Guatemala while other members of the family were in Los Angeles. This is unusual since men are usually the ones who come to the United States first, leaving wives and children in Guatemala. As reported by Bryon 54 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Vasquez, the Presedente of Casa de Cultura, such men customarily send remittances to their families. The third informant (female) was already seeing the doctor when I arrived at the clinic. Since the patient was not on DOT, the doctor asked to see the medications she was taking. The doctor asked questions about how the patient was recording her dosages. The doctor pointed out to me that this procedure showed whether the patient was compliant or non-compliant. Although the patient understood the questions in English, the doctor had a bilingual nurse translate them into Spanish. The doctor frequently asked the patient if she understood the directives. The doctor also listened intently to the instructions in Spanish. I noticed no miscommunication between the patient, doctor and nurse. Again, since I had no interpreter with me, I asked the bilingual nurse if she would ask the patient to take the questionnaire home and return it by mail. I put the questionnaire in a stamp-addressed envelope for easy processing. The patient eventually sent in the responses, but they were not answered thoroughly or completely. However, what she did say was important in my findings as she claimed that when she knew she was sick, she immediately sought help and went to a hospital. At the next appointment, the doctor asked the patient the same question: “Where are your medicines? Let me see how you wrote down the dosages in your notebook.” The patient was still compliant and the doctor was pleased with her cooperation. The doctor then asked if the patient had any questions (in English). The 55 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. patient wanted to know about birth control methods as she was on Rifampin, and the drug is known to weaken the effectiveness of birth control pills. She was referred to another clinic. Even though I could only observe the patients and the caregivers in these three cases, I believe that all were able to communicate and understand each other in the clinical setting, even in the case of the informant who was said to be illiterate. As previously mentioned, the mother had successfully completed her child’s TB drug therapy, thereby, complying, at least in this sense. 56 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. VII. TB Treatment Compliancy Data and Analysis Introduction On the basis of a library search which surveyed the literature on medicai issues related to Hispanics in the United States, I formulated a number of hypotheses which I tested on TB patients from Guatemala who lived in Los Angeles. The following questions were posed of my informants and the resulting responses indicate that their perception and behavior were at considerable variance, not only with the literature I had reviewed, but also with my derived presuppositions. Reflecting the descriptive nature of this study, the responses elicited from my questionnaire are presented after each question. Seven questions were asked of each informant who was a patient in either Central, Curtis Tucker, or Hollywood-Wilshire Chest Clinics. 57 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Responses to Research Questions Question 1: Tell me about your fam ily and where you came from ? All eight informants lived in Guatemala with multiple family members. All eight also lived with family members in Los Angeles. One informant claimed to have gotten TB from his brother when they were both living in Guatemala. One informant stated that all the family members were on preventive TB medicines in Los Angeles. Of the eight informants interviewed in the clinics, five previously lived in Guatemala City, one lived near the Mexican border, one lived near the Honduras border, and one resided approximately three hours away from Guatemala City. As reported by several of the informants, they went to a clinic for their health care in their native country rather than seeking out a curranderos(as). One informant stated that Guatemalans living in an urban setting in Guatemala sought Western medicines and Western physicians, whereas Guatemalans living in the Highlands were poorer and more dependent on curranderos(as) and non-Westem medical cures. They also stated that they paid for their health care at the clinic in their native country. Thus, it was not unusual for the majority of the informants to be cared for by caregivers in the Los Angeles County Department of Health clinics. 58 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Question 2: What were some o f the reasons people got sick there? Questioning the eight informants about the reasons people became ill in Guatemala elicited several responses: people became sick from malaria which they said was caused by mosquitoes. Other illnesses and symptoms were chickenpox, smallpox, flu, fever, diarrhea, stomach ache, food related illnesses, hepatitis, and cancer. One informant stated that a plastic birth control device from Mexico caused ovarian cancer. One informant mentioned that people in the city got hepatitis from unsafe drinking water and inadequate sanitation. One informant stated that children got yearly TB chest x-rays in Guatemalan schools and that this procedure helped control the spread of TB. Question 3: What kinds o f illnesses did the informants have arid in what ways were they treated? The informants answered this in the same way that they responded to question two. In other words, they repeated the same illnesses. In regard to the ways 59 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. these illness were treated, the informants all stated that physicians took care of them. No one claimed to have gone to a currandero(a) or had used alternative medicines. Although question two and three seem similar in nature, I was seeking to ascertain if the informants would distinguish the difference between disease, illness, and sickness. The contrast between these three entities has been noted by (Rubel, O’Neil and Collardo-Ardon 1991: 2) in their study of Susto (fright disease) in Southern Mexico. According to the authors, disease is a pathological process, illness is defined by the patient’s perception and description of his/her discomfort, and sickness is defined as an acknowledgment o f the patient’s problem and the response to it by the patient’s family or other support group. In essence, the informants equated the above mentioned illnesses with being sick from a virus or bacteria and not from a folk disease. I purposely did not want to pursue the subject of Susto with the informants as the intentions of my questionnaire were not to lead them into an emotional/folk disease label, unless, of course, they alluded to it themselves. However, I did have an opportunity to ask two of the informants about Susto after we had completed the formal questions. One informant stated that her mother knew someone who believed in it but she did not. In another instance, I asked the informant’s son and he became very agitated and said that susto was just a word. I immediately changed the subject so as not to offend him further. Again, it is interesting to note that the Mayan couple I interviewed before my initial study began described Susto without any 60 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. embarrassment or anger. For example, they described what they did when their daughter fell off the bed. Instead of consoling the screaming child, they beat the floor with a diaper. This act was to ward off the evil spirit that caused the child to fall, according to the couple. Question 4: When did you suspect that you were sick? All eight informants responded that they were surprised when they were diagnosed with TB. One had pneumonia and was completely surprised by the TB diagnosis. Although the others had TB symptoms (cough, coughing up blood, weight loss, etc.), they did not recognize these problems as TB-related. One informant, however, claimed to have had the same TB symptoms in Guatemala, so he knew that he probably had a recurrence o f TB in Los Angeles. When I asked one informant what made her sick with TB, she immediately said that her immune system was down and that she probably sat next to someone who had TB. Two of the informants had wanted to be volunteers in a school and hospital. Fortunately, they were prevented from starting their jobs due to diligent health professionals who recognized their TB symptoms. This, indeed, may be an example of how health professionals in Los Angeles are trained to recognize the symptoms of TB disease. 61 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Question 5: When did you first seek help? Where? From Whom? All eight informants sought treatment either at a hospital or clinic rather than from traditional folk resources. One went to a private clinic and then to Los Angeles County/USC Hospital. One went to a free clinic in East Los Angeles where they delayed his diagnosis and treatment. The informant previously had TB in Guatemala and knew its symptoms. He persevered as he insisted in getting medical help from that particular clinic. Again, all eight informants stated that physicians took care of their TB disease, and no one claimed to have used alternative medicines. Question 6: In respect to health-care, would you like to tell me about your experiences here in Los Angeles in contrast to your experiences in Guatemala. One informant stated that treatment for TB in Guatemala was not very good compared to the care he received in the Los Angeles Chest Clinics. According to him, tc the doctors and nurses there [LA Chest Clinic] are polite and friendly.” One informant said that he could not elaborate on the difference but that he was very 62 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. satisfied with the progress and help that he was getting at the clinic. One other informant thought that the treatment was the same, but another said that it was quite different in Guatemala. For instance, doctors usually don’t tell their patients or even the family about the disease or how TB is treated. Instead, they hospitalize the patient for a lengthy stay. This same informant also complained that the treatment for TB was too long in Los Angeles. One informant said that there was testing for TB in both places and there was no major difference between the care in Guatemala and the care he received in Los Angeles. Another informant could not make a comparison between the two because she was too young when she left Guatemala. However, she was very pleased with the doctors and with the staff in the Los Angeles clinic. One informant, a nurse from Guatemala, specifically complained about the way several doctors treated her once they knew that she was a TB suspect. She stated that the doctors and nurses immediately put on their masks and rushed her to the hospital’s isolation room without telling her or her husband about her condition. Even though a period of months had past since the incidence, the informant was moved to tears during the interview when she retold her experience. Clearly, this type of situation demonstrates that communication must be improved in that particular emergency room. Other comments were: “Doctors in Guatemala don’t have the same experience with TB as they do in Los Angeles.” “They also don’t give out free TB 63 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. medicines like they do in Los Angeles.” “However, there were more TB medications prescribed in Los Angeles.” It is interesting to note that when I discussed the issuance of free medicine with a nurse, he stated that the patients often think that the medicines are inferior because the government pays for them. He takes the time to show the patients the bottles of medicine and the cost of each. He then emphasizes that the price is the same from a private doctor or clinic. Question 7: Do you feel that there is, at present, a problem communicating with a health-care provider (s)? I f so, please explain the nature o f this difficidty. One informant stated that she had no problem communicating with the doctors, nurses, and other caregivers. She thought that Directly Observed Therapy (DOT) was helpful and that she was getting better because of it. Four other informants said there was no problem. One informant did not know. One informant said that there was no problem at that time, but that there was a problem in the past with a nurse. The patient’s son stated that even though the clinic service was free, they were not going to tolerate the nurse’s behavior. They complained to the clinic staff and the nurse no longer took care of the patient. The family stated that they were very satisfied that the situation was handled so well. Lastly, the eighth 64 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. informant said that the service at the clinic was excellent: “I am respected, they explain everything to me, they ask me to put a mask on. They treat me with a smile. The nurses are good. I think DOT is a blessing in disguise.” 65 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. VIII. Discussion As previously stated, the narratives based on the questions I asked suggested that a number of my presuppositions were not borne out by my findings, albeit on the basis of a very small sample. It is, nevertheless, significant that in one way or another, my informants also negated most of the assumptions listed below. In this regard, these hypotheses will now be examined in the same order on the basis of the observations and interviews with my informants, as well as in light of statements made by doctors, nurses, and other health caregivers. Hypothesis I: Guatemalans would resist Western medical treatment fo r their TB disease because they are still dependent on traditional fo lk cures. For example, did they believe their TB was a folk disease caused by Susto (that is, caused by fright) and could it only be cured by a currandero(a)r l 66 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Based on the interviews and observations, I found that the eleven informants did not generally resist Western medical treatment for their TB disease. Although the informant who was labeled “illiterate” was uncooperative in the clinic, she was monitored by the community worker at home and therefore had to comply with her TB medication regimen. As previously stated, the twelfth informant did not have TB disease so she was not interviewed. I also learned that patients often were unaware that they had TB until they had to have a routine X-ray or if they had gotten ill with pneumonia or had other symptoms of respiratory disease which brought them to the hospital or clinic. Because the informants interviewed were already getting better, they clearly understood that this was due to the medications that they were receiving. They were also reminded by the health caregivers that their treatment would be extended if they did not comply with the required drug regimen. Also, prior to my study, the patients were informed by health caregivers in the hospitals and the clinics on the causes and treatment of TB. They also listened to a TB Educational video (in English and in Spanish) while sitting in the waiting rooms. Numerous flyers and fact sheets were also available in Spanish and in English, emphasizing that TB disease was caused by bacteria and not by a folk disease. Although none of the informants claimed to have used non-Westem alternative methods of curing TB, it is interesting to mention that one clinic nurse stated that as long as the patients take their TB medicines, they can 67 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. use non-Westem approaches to getting better. However, they should inform the caregivers that they are using alternative methods to getting well. It should be noted here that reliance on non-traditional medical systems is not simply an artifact of non-Westem people. For instance, a recent report in the Journal o f the American M edical Association, stated that 83 million Americans have reported using some type of alternative medicines (Eisenberg et al. 1998: 1571). It is interesting that, in responding to the first hypothesis, seven of the eight informants interviewed did not admit or suggest that they used any kind of alternative medicines or folk remedies in order to cure their TB disease. The one exception was the informant who ate watercress, believing that it helped her get better. She, nevertheless, took her TB medicines daily. She also stated that watercress was used quite frequently by TB patients in Guatemala and it had helped them. Clearly, one cannot conclude from the evidence from this study that the majority of my informants do not turn to alternative methods of treatment. However, I believe, again, on the basis of their apparent honesty and cooperation in answering my questionnaire and the numerous pamphlets available to the patient about the cause of TB, that they were aware that the disease can best be cured by Western medicine. For example, most patients were initially seen at the UCLA and USC Emergency Rooms where they were counseled once they were TB suspects. During their experience in the hospital isolation room, health caregivers enforced the need for the patient to take the TB medicines. One informant reported that she thought 68 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. that she was going to die of the disease but that the counseling she received in the hospital eased her fears. By the time I had interviewed her, she no longer thought she would die of the disease. She was also someone who was compliant without Directly Observed Therapy (DOT). Hypothesis II: There would be a distrust o f Western doctors and a belief th a t non-Westem practitioners would treat them more effectively. Although I did not question whether the informants mistrusted Western doctors in general, there was no indication among the Guatemalans I interviewed, that they disputed the diagnosis of TB disease. When they had gotten ill with symptoms of TB, as previously stated, they all sought medical attention in the Los Angeles Hospitals or health clinics. Once they were considered a TB suspect, they were evaluated, given counseling about TB disease and monitored by numerous health caregivers. Since the patients were monitored daily (Directly Observed Therapy) or several times a week by the district health nurse or another caregiver, they usually adhered to the TB treatment. Since the patients’ health improved several weeks after their TB drug therapy began, they had no reason to believe that they were not being cared for properly by Western doctors. 69 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Hypothesis III: The Guatemalan patients would perceive the scientific approach as too slow in effecting a recovery from TB. Although one informant complained about the length of treatment for TB disease in Los Angeles, he was grateful that the doctors and other health caregivers did not keep the patient in the hospital for a long period o f time. As previously stated, several informants told of people living in Guatemala who were hospitalized for an extended period of time for their TB disease. The patients and families were also given very little information regarding the illness while in the hospital. In Guatemala, the TB patient is given injections and pills for the disease and these medications must be purchased by the patient. The informants stated how thankful they were for the free medicine they were given at the Los Angeles hospitals and at the Department of Health Chest Clinics. Again, it should be noted that a nurse commented on the fact that he frequently had to convince patients that the medicines were the same quality as those that were given to patients in private practice. Since the medicines were free at the clinic, the patients thought that they were inferior to those that were dispensed privately. 70 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Hypothesis IV: There would be difficulties o f cross-cultural communication because o f language differences. As cm example, the explanation o f their TB disease might be misunderstood by the patient. Contrary to Asch, Leake, and Gelberg's article (1994: 373-376), "Does Fear of Immigration Authorities Deter Tuberculosis Patients from Seeking Care?" I did not find that physicians who spoke only English and very limited Spanish had a problem communicating with the patients. My study indicated that treatment success was due at least in part to having bilingual nurses or other health caregivers readily available at the clinic for interpreting purposes. For example, one o f the doctors who was originally from Vietnam (and who did not speak Spanish fluently) would ask the patient in English how he/she felt. The patient would respond and if the doctor did not understand what the patient was saying, he would ask a bilingual nurse to translate for him. In observing this and other similar situations, I was reassured, at least in my small sample, that there was little miscommunication between the patient, doctor, nurse or other health caregiver. Also, after the physician had completed the examination, a nurse would emphasize again the importance of the instructions. The patient did not leave until this closure session took place. 71 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Although Asch, Leake, and Gelberg state that three quarters of those interviewed preferred speaking a language other than English (1994:375), I did not notice any resentment when I informed the patients that I did not speak Spanish and that I would have to have an interpreter for the interview. I did not detect any other communication problems except with one patient. Although, as previously stated, I was only able to observe the patient who was labeled "illiterate," it was obvious that the nurses had become frustrated with her lack of attention to their instructions. They claimed that she would nod her head in agreement when the instructions were given to her, but when the community worker visited her at home, she was found not to be compliant with her own drug regimen. It was a problem because she also had to give TB medicines to her two young children. Without the Directly Observed Therapy (DOT) and the caregivers intervention, the family would probably not have received the appropriate treatment. This is an example of how important DOT is in eradicating tuberculosis. Asch, Leake, and Gelberg also state that one out of ten informants claimed that language problems kept them from seeking medical help (1994: 375). I did not find this to be true of the patients whom I interviewed or observed. In other words, the informants sought medical help because of their symptoms, even though they were unaware that they had TB. In one situation, the informant did not seek medical treatment when the TB symptoms first occurred because she feared that she had lung 72 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. cancer. However, she worked in the medical field and knew more about medicine than the other patients interviewed. Hypothesis V : Cultural attitudes and differences regarding time and schedules would be a problem. Although the concept of TIME is sometimes considered a compliance issue, I found that the protocol implemented by the Department of Health Chest Clinic personnel has worked well with the patients. If the patient missed an appointment, the District Health Nurse or other caregiver would bring them into the clinic within a day or two of the previous appointment. Some patients, however, ignored the designated scheduled appointment and just walked into the clinic when it was convenient for them. If a doctor was available, the patient was seen, but otherwise, the appointment was rescheduled. According to one doctor who spoke about the inconvenience that occurred when a patient broke his/her appointment, she stated that the practice was across cultural lines, e.g., that there was no one particular culture that habitually ignored the time of the appointment. However, in researching some of the reasons for patients’ broken appointments, many had legitimate excuses. Many patients could not leave work for various reasons. Others had no form of transportation. Others claimed they 73 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. were too busy when the holidays were approaching to keep their clinic appointments. In another case, the patient had gotten off work late and was too tired to get on a bus to go to the clinic. In many situations though, the community worker would pick the patient(s) up at their home and transport them to the clinic. Nevertheless, even if the patient did not make the appointment, it was up to the community worker or District Health Officer (DHO) to locate the patient(s) and to bring them into the clinic within a day or two of his/her previous appointment. Hypothesis VI: Going to a clinic was a social stigma. Although one informant out of eleven stated that having TB in Los Angeles caused her much anguish, the informant did not indicate that there was a stigma within her family unit or among her friends. The informant’s opinion was based on how she was treated in an emergency room and while she was a patient in an isolation room at the same hospital. However, once she was being seen regularly at Central’s Chest Clinic, her anxiety disappeared. In another case, one informant stated that although he told his boss he had TB, he did not inform his coworkers. This was interesting because he was the only English speaker I interviewed who worked for a corporation. The other employed Spanish-speakers worked in factories. Although most were given time off to go to the clinic, they sometimes did not inform their boss 74 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. that they were ill with TB disease. One informant said that she left her factory job because coworkers were suspicious when she became ill and had to take time off from work. When she started another factory job, she withheld all information about her TB illness; she was, however, no longer contagious with TB disease. 75 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. IX. Conclusions and Significance of the Project Comparative Summary After reviewing earlier historical antecedents, this thesis examined how TB patients were treated in the early 1900s, most specifically in Arizona, and compared this with how Guatemalans are currently treated by the Los Angeles Department of Health Chest Clinics. For example, I mentioned that, in search of a cure, the TB patients traveled to Arizona from many parts of the United States during the early part of the 20th century, leaving many of their family members behind. They, therefore, had to adapt to new surroundings, sometimes experiencing isolation from their families and discrimination from the host community (Snyder 1997; personal communication). They were forced to adapt to a different environment, in this instance, adjusting to the extreme heat and sun of the Arizona desert. 76 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. In like manner, Guatemalans in this study also left a familiar environment, leaving their native country and families behind. They also experienced isolation in their new surroundings when they were either hospitalized or isolated for weeks at home. As I had expected, in my visual depiction of how TB patients lived in Arizona in the early 1900s-1940s, the TB cabins and cottages that I photographed were relatively isolated from the rest of society. Although there was a sense of isolation and remoteness because the cabins were in rural or semi-rural areas outside Phoenix, other TB patients lived among the healthy residents in town (Snyder 1997: personal communication). In Sunnyslope, Arizona, for example, the TB patients lived in the Desert Mission area. At the mission, the patients had available medical care, schools and other educational facilities. Nevertheless, once they had recuperated enough to return to work, they were integrated back into society. I found that the above described lifestyle was not that different from what I found to be the case of Guatemalan TB patients in Los Angeles. That is, several weeks after a patient is hospitalized or isolated at home, and is no longer contagious, he/she is free to return to work and is thus integrated back into society. Likewise, in my visual depiction of the buildings that house the Department of Health Chest Clinics (Figures 3.1, 3.2, 3.3) and the building that houses the TB 77 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Control Program (Figure 2), I found that these buildings represented an institutionalized setting for TB patients and Health Department employees. I am reminded of Erving Goffman’s example of a “total institution.” He states that “every institution captures something of the time and interest of its members and provides something of a world for them...” (Goffinan 1961:4). Original Hypotheses A major thrust of this thesis examined the utilization of modem medical care in the diagnosis and treatment of TB among Guatemalans living in Los Angeles. At the time of my study, all eleven informants were being treated in the County of Los Angeles Department of Health Chest Clinics. My original hypotheses were: 1. that I would find a dissonance among Guatemalans in their conceptions related to contemporary Western medical beliefs and indigenous Hispanic concepts of the etiology and treatment of TB disease; 2. that problems in cross-cultural communication between doctor/patient and other caregivers would hinder the care received by Guatemalan patients; and, 78 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. 3. that the culturally derived attitudes regarding time and schedules among the Guatemalans would pose a barrier to adequate health-care delivery. Findings While eleven informants is not a large sample, I believe, based on the results of my study, that Guatemalan TB patients cared for by the Department of Health Chest Clinic caregivers conformed to the patterns of modem medical concepts and care. Furthermore, I also did not find that they used non-Westem folk medicines to treat their TB disease. In part, this probably reflects their adaptation to Los Angeles urban life, and, in most cases, their derived willingness to adhere to the strict requirements set out by the Department of Health and the Centers for Disease Control (CDC). The caregivers also had to comply with the internal regulations from the Department of Health and from the Centers for Disease Control in Washington, D.C.. Thus, both the TB patients and the caregivers had restrictions placed on them by both internal and external agencies. I did not find in my sample population that patients coming from a different ethnic origin than their doctor or other caregiver caused any undue problems in the delivery of care to Guatemalan patients. Again, DOT and the strict adherence to the 79 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Department of Health guidelines in monitoring each TB patient was, in most cases, adequate in the maintenance and successful completion of drug therapy. Another reason I discovered leading to the mostly successful cooperation between the patients and caregivers was a team effort approach among the caregivers and administrative employees in the Department of Health and in the administrative offices of the TB Control Program. Also, the current and longitudinal care of TB patients is constantly reviewed in educational settings. For example, in order for the caregivers to become knowledgeable not only with local trends in the spread and control of TB, but also to become aware of the current TB data released from the Centers for Disease Control, monthly educational conferences are held at the Orthopedic Hospital in Los Angeles. Also, a monthly newsletter from TB Control on up-to-date TB statistics in all the county clinics is widely circulated to relevant health caregivers, researchers, and administrators. In fact, since the caregivers in the Department of Health clinics are experts in DOT deliverance, many physicians in private practice now recommend that their TB patients be treated by them. The third hypothesis, that Guatemalans had a different attitude regarding time and schedule and that this would affect their treatment, did not materialize. Although some patients did miss their appointments, many had the usual excuses that are made among patients in general. For example, all but one of the informants who worked were factory employees. Sometimes they were unable to leave their jobs because of their employers’ demands and, in other cases, they missed appointments because they 80 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. did not want their employer to know that they had TB. They, however, usually showed up early in the morning at the clinic to get their medications or, in other cases, the caregiver went to the home or another designated location to give the DOT. As previously mentioned, community workers are responsible for locating patients who miss appointments, and they attempt to bring them into the clinic within a few days after the missed appointment. Essentially what I found was that the majority of the informants were working or going to school, and they had already adapted to the schedules placed on them in their daily life, and, thus, they generally adhered to their clinic appointment times as well. Practical Applications The practical applied aspects of this study suggest a need to continue the dialogue between caregivers and indigenous patients whether it is in English or another language. The following guidelines may help future researchers in their cross-cultural studies of other Hispanic populations in the treatment of TB or any other medical condition. First and foremost, the researchers must not make an assumption that a particular indigenous group has a set of beliefs and norms leading to certain health practices. This can stereotype the patient's cultural heritage. Therefore, communication is fundamental to healing (Barker 1992: 250). Most importantly, 81 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. caregivers must listen to the patient and listen to the symptoms, not simply depend on the laboratory or x-ray results. A bilingual support staff is a necessity in all Department of Health clinics. A team effort approach to health care must continue, especially with patients who have TB. In order for them to be compliant and to remain compliant, the reinforcement of taking the TB medications regularly must continue through the use of educational videos, fact sheets, Directly Observed Therapy (DOT), and continuous dialogue between patient and caregiver. As previously mentioned, after the initial doctor’s examination, the closure appointment with a nurse or other caregiver is critical to the adherence of TB drug therapy. Although the above suggestions are certainly not all-inclusive possibilities in caring for the indigenous TB patient, they are, perhaps, baby steps leading to the understanding of the patient’s adherence to TB's drug therapy. Ethnographic Significance The ethnographic significance of this study suggests that there is now an eroding of traditional folk medical systems within the Hispanic population, in this case among the Guatemalans and specifically among those who are treated for TB. It has been documented that Mexican-Americans in Los Angeles have relinquished some of their folk beliefs (Edgerton 1970: 124-134). Perhaps, the Mexican-American experience has influenced the Guatemalans I studied in Los Angeles. It is, 82 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. nevertheless, clear that my informants have been assimilated sufficiently into the Los Angeles/American culture to alter their traditional view of health. As stated in an article in The New York Times (Sontag and Dugger 1998: 1, 12-14), immigrants have a foot in both cultures. This seems true of my informants who have lived in the United States for a number of years (one informant since 1979). However, in my interviews, I did find several informants who planned to return to Guatemala. They typically had maintained close ties with other family members in their homeland. As previously mentioned, many Guatemalans still send remittances to their families in Guatemala, thereby, continuing their strong family ties. Nevertheless, these same informants who were young men and women (with a mean of 36.5 years) were either working in factories or for a corporation or were in school, and thus, had assimilated well enough to be responsible employees and students. In contrast, the informants who were not working showed little interest, apparently, in learning English. Therefore, it seems that they are attempting to maintain their culture in a foreign and culturally diverse environment. To conclude, the informants interviewed were, I believe, entering at least the lower middle class. According to Kraut (1990: 1810), “middle-class immigrants tend to share with their physicians common standards and faith in scientific medicine.” Could this mean that social mobility among Guatemalans in Los Angeles has culturally sensitized them to scientific medicine and diminished the reliance on traditional folk remedies and practices? 83 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Suggestions for Future Research My study then, must invite other researchers to investigate further the interplay between Western and non-Westem medical systems among other Hispanic groups. This can provide future guidelines for social policy in a rapidly changing medical environment. 84 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. References Cited American Thoracic Society (1994), Treatment of Tuberculosis and Tuberculosis Infection in Adults and Children, American Journal o f Respiratory and Critical Care M edicine 149: 1359. Asch, S. Leake, B. and Gelberg, L. (1994), “Does Fear o f Immigration Authorities Deter Tuberculosis Patients From Seeking Care?,” Western Journal of Medicine 161: 373-376. Barker, J. C. (1992), “Cultural Diversity: Changing the Context of Medical Practice,” In “Cross Cultural Medicine— A Decade Later,” Western Journal o f Medicine 157: 248-254. Barnes, D. S. (1995), The M aking o f a Social Disease: Tuberculosis in Nineteenth- Century France, Berkeley, CA: University of California Press. Bryder, L. (1988), Below the Magic M ountain: A Social H istory o f Tuberculosis in Twentieth-Century Britain, Oxford: Clarendon Press. Centers for Disease Control and Prevention, Questions and Answers about TB (1994) U. S. Department of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention, National Center for Prevention Services, Division of TB Elimination, Atlanta, Georgia. Centers for Disease Control and Prevention, Tubercidosis Facts-TB Can Be Cured, Fact Sheet in Spanish and English (1993), U.S. Department of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention, National Center for Prevention Services, Division o f TB Elimination, Atlanta, Georgia. 85 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Chowder, K. (1995), “A Test of Character: the Life of Stephen Crane,” Smithsonian 25 (10): January, 109-121. Clark, M. M. (1983), “Cultural Context of Medical Practice”, In “Cross-Cultural Medicine—A Decade Later,” Clark, M. M. (ed.), Western Journal o f Medicine 139: 806-810. Davidson, P.T. and Haughton, J. (1998), Los Angeles County Department of Health Services, Tuberculosis Control Program fo r Medical Standards, Directly Observed Therapy (DOT), Handout distributed at the Orthopedic Hospital TB Conference, Los Angeles, CA, January 5, 1-7. Edgerton, R. B., and Fernandez, K. I. (1970), “Curanderismo in the Metropolis— The Diminished Role o f Folk Psychiatry Among Los Angeles Mexican Americans,” American Journal o f Psychotherapy 24: January, 124-134. Eisenberg, D., Davis, R , Ettner, S., Appel, S., Wilkey, S., Rompay, M., and Kesslep, R. (1998), ‘Trends in Alternative Medicine Use in the United States, 1990-1997,” JAMA 280 (18): November, 1569-1575. Eisenberg, L. and Kleinman, A. (1981), The Relevance o f Social Science fo r Medicine, Holland: D. Reidel Publishing Company. Encyclopedia Britannica. (1999). Kafka, Frantz. [On-line] Available: http://search.eb.com/bol/topic?cu=45321&sctm=T. Feldberg, G. D. (1995), Disease and Class: Tuberculosis arid the Shaping o f M odem North American Society, New Brunswick, NJ: Rutgers University Press. Garrett, L. (1994), The Coming Plague, NewYork, NY: Penguin Books. Goffinan, E. (1961), Asylums, Anchor Book Edition. Garden City, NY: Doubleday & Company, Inc. Harwood, A. (1971), “The Hot-Cold Theory of Disease,” JAMA 216 (7): May, 1153-1158. Kiple, K.F. (ed.) (1993), The Cambridge World History o f Human Disease. Cambridge, MA: Cambridge University Press, 1059-1068. 86 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Kraut, A. M. (1990), “Immigrant Attitudes Toward the Physician in America—A Relationship in Historical Perspective,” JAMA 263 (13): 1807-1811. Kravetz, R.E. (1995), Hucksters, Healers and Heroes: M edicine in Territorial Arizona, Phoenix, AZ: McMurry Publishing, Inc. Kravetz, R.E. and Kimmelman, A. J. (1998), Healthseekers in Arizona. Phoenix, AZ. Academy of Medical Sciences of Maricopa Medical Society. McDonnell, P. J. (1998), ‘Maya: Ancient Culture Faces Assimilation Threat,” Los Angeles Times, May 27. Molina, C. W. and Aguirre-Molina (eds.) (1994), Latino Health in the US: A Growing Challenge, Washington, DC: American Public Health Association. National Tuberculosis Training Initiative, (1994). Core Curriculum on Tuberculosis: What the Clinician Should Know, U.S. Department of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention, National Center for Prevention Services, Division of TB Elimination, Atlanta, Georgia: 11-20. Rothman, S. M. (1994), Living in the Shadow o f Death: Tuberculosis and the Social Experience o f Illness in American History, New York, NY: Basic Books. Rubel, AJ. and Garro, L.C. (1992), “Social and Cultural Factors in the Successful Control of Tuberculosis,” Journal o f the U.S. Public Health Service 107 (6): 626-636. Rubel, A.J., O’Neil, C., and Collardo-Ardon, R. (1991), Susto, a Folk Illness. Berkeley, CA: University of California Press. Ryan, F. (1992), The Forgotten Plague, Boston, MA: Little, Brown and Company. Simic, J. (1996), Kafka, Unpublished manuscript. Sontag, S. (1978), Illness As Metaphor, New York, NY: Farrar, Straus and Giroux. Sontag, D., and Dugger, C. (1998), “The New Immigrant Tide: A Shuttle Between Worlds, New York Times,” July 19, 1 and 12-14. 87 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Thome, C.H. (1981), From Desert to Distinction-A History o f John C. Lincoln Hospital. Phoenix, AZ: John C. Lincoln Hospital Community Relations Department. World Health Organization (WHO), Global Tuberculosis Programme. (March, 1998), Tuberculosis Fact Sheet [on-line]. Available: http ://www.who .ch/gtb/publication/fact sheet/index, htm. 88 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Selected Bibliography Altman, L. K. (1995), “As TB Surges, Drug Producers Face Criticism,” The New York Times, September 18. Centers for Disease Control and Prevention (1994), Treating Tnbercidosis-A Clinical Guide, U.S. Department of Health and Human Services, Public Health Service, Centers for Disease Control and Prevention, National Center for Prevention Services, Division of TB Elimination, Atlanta, Georgia. Cockbum, A., Cockbum, E., and Reyman, T., ed. (1998), Mummies, Disease & Ancient Cultures. Cambridge, MA: Cambridge University Press. Cole, S.T., Brosch, R., Parkhill, J., Gamier, T., Churcher, C., et al. (1998), “Deciphering the Biology of Mycobacterium Tuberculosis from the Complete Genome Sequence,” Nature 393: June, 537-544. DiMatteo, M. R. and Friedman, H. S. (1982), Social Psychology and Medicine. Cambridge, MA: Oelgeschlager, Gunn, & Hain Publishers, Inc.. Hafiner, L. (1992), “Translation Is Not Enough—Interpreting in a Medical Setting,” In “Cross-Cultural Medicine-A Decade Later,” Western Journal o f M edicine 157: 255-259. Hall, E. T. (1983), The Dance o f Life: The Other Dimension o f Time, Monochronic and Polychronic Time (Chapter 6), New York, NY: Doubleday and Company. Kleinman, A., Eisenberg, L., and Good, B. (1978), “Culture, Illness, and Care. Clinical Lessons from Anthropologic and Cross-Cultural Research,” Annals o f Internal M edicine 88 (2): 251-258. 89 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Madsen, W. (1964), Mexiccm-Americans o f South Texas. New York, NY: Holt, Rinehart and Winston. Maduro, R. (1983), “Curanderismo and Latino Views of Disease and Curing,” In “Cross-cultural Medicine,” Western Journal o f Medicine 139: 868-874. Rosenkrantz, B. G. (ed.) (1994), From Consumption to Tuberculosis: a Documentary History. New York & London: Garland Publishing, Inc. Scheper-Hughes, N. and Stewart, D. (1983), “Curanderismo in Taos County, New Mexico-A Possible Case of Anthropological Romanticism?,” The Western Journal o f Medicine 139 (6): 875-884. Sontag, S. (1989), AIDS and Its Metaphors. New York, NY: Farrar, Straus and Giroux. Torrey, E. F. (1972), The M ind Game— Witchdoctors and Psychiatrists. New York, NY: Bantam Book, Inc.. Trotter, R. T. and Chavira, J. A. (1997), Curanderismo: Mexican American Folk Healing. Athens (Georgia) and London: The University of Georgia Press. U.S. Congress, Office of Technology Assessment (1993), The Continuing Challenge ofTubercidosis. Washington, DC: U.S. Government Printing Office. 90 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. A ppen dixes Appendix A: Appendix B: Appendix C: Interview with Dr. Bertram L. Snyder In English: Informed Consent Form Informant Questions In Spanish: Formulario De Consentimiento Preguntas 91 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. A ppen dix A Interview with Dr. Bertram L. Snyder 92 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Interview with Dr. Bertram L. Snyder on August 23, 1997 (Verbatim) Open-Ended Questions: Dr. Snyder states Question 1 : What was it like being a doctor back then? Dr. Snyder: Well, I think it is just the same as any doctor after going into practice, you know, after leaving medical school. In my case, however, I had TB in my senior year o f medical school. I came to Phoenix in 1942.1 think most o f the doctors who were treating TB in those days did the best that they coidd which wasti't very much. They tried to isolate these people and keep this communicative disease from being past around. Fortunately, there is a lot o f sunshine in Arizona which I think in those days was considered helpfid because all o f these people who went out on the desert, they weren’ t too hygienic as fa r as their cough and spitting was concerned, and so the sun, I think, killed all those germs. In those days we had nothing but bed rest particularly fo r these poor people who came to the Stmnyslope area. Dr. Fred Holmes was instrumental in years past to visit them, I think, every two weeks or so, [he] did the best he could as fa r as treatment was concerned. In those days there was pneumothorax which was compressing the lung [on a] temporary basis and receiving refills periodically to keep the lung at rest. In matiy instances this did a lot o f good. In other conditions and treatments a phrenic nerve was crushed, paralyzing the diaphragm which would elevate itself Fortunately this was something later on was found to be contraindicated but in most cases an auxiliary nerve prevented the diaphragm from being paralyzed. Those who d id have a paralysis o f a diaphragm really, I think, caused them to die an earlier death. Even pneumoperitoneum was used in those days where they put air in the belly to raise the diaphragm. Thoracoplasty was removal o f the ribs, also, was one o f the things that was done fo r treatment o f TB all over the country. But, a doctor in those days, he had to go where the cases were and here in the Phoenix area that was the county hospital. [And], St. Luke's R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Sanitoriiim, now called St. Luke's Hospital was actually a private place fo r the treatment o f TB, but those cases were paid fo r by the county and the state. Dr. Snyder states Question 2: What most impressed you? Dr. Snyder: What impressed me was the feeling o f these people who came out here. It wasn’ t one o f fiitility but one o f looking forw ard to a better life. M any o f these people went on and recovered, but some o f them didn ’ t, and, unfortunately, passed away. And their spirit influenced me in the long run. Interviewer: How so? Dr. Snyder: Well, there was a togetherness, you know. They kriew that I had TB which was a big plus because Ife lt sorry fo r those people. Interviewer: They knew before that you had TB? Dr. Snyder: Oh yeah, they knew that. That was well-known. Sure, Mr. & Mrs. Lincoln knew that, and they provided all the money out there at the Presbyterian Church, so they knew that. Interviewer states Question 3: TeU me what was most interesting to you. Dr. Snyder: Well, I think the fa c t that I related to these people who had TB— the same thing that I had. I think that’ s what impressed me. At this point. Dr. Snyder asked to have the tape recorder turned off. Dr. Snyder then talked about one of his experiences with a young couple. This was an experience for him. Interviewer states Question 4: What were some of your experiences? (question is continued) But as fa r as experience at Simnyslope, it was a m atter o f gradual growth because now the war was over and air conditioning was what made this Phoenix area and Tucson and they had very little o f it except flaps on these little cabins with swamp coolers and that's all we had. Well, they would 94 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. hang sheets up and wet them and so it was a kinda you take care o f me and I take care o f you business, you know. And I think as fa r as I was concerned, it was wonderful. And I think that has to do with my most vivid memories, the success that we had trying to take care o f these people. Interviewer states Question 5: What were your most vivid memories? Sure, we lost some. I remember a fellow who was vice president o f . I knew he had a positive sputum, he was a patient o f Dr. Holmes. He was running around here—it was hard to control. We had a hard time isolating—we had a law, but how are you going to isolate them all. So, as time went on, pretty soon the Health Department, they had to be more selective. They had to go out and give the shots. They do now when people don't come in. The biggest danger even now is the development o f resistant organisms. We d o n ’ t have new drugs coming out every two weeks. Interviewer interrupts Dr. Snyder and explains that the government doesn’t want to fund TB research for new drugs. Specific Questions Asked: Interviewer states Question 1: Were the TB patients isolated from the rest of the population? Dr. Snyder: Well, that was impossible. We try to do the best that we ccm. Sometimes we threaten them with having the sheriff come out and we did isolate a few o f them, but they didn’ t want them down there either. See as time went on, I think that we have to recognize that the studies that they did, oh, I think it was a long time ago where they set up a unit in a hospital. See hospitals have all central air conditioning. In other words, they fin a lly had some isolated units where they didn’ t recirculate, and they found out by testing animals, you p u t a patient over here in one room and he is coughing, doing whatever, and the pipes are in the other room, and the rabbit or whatever they had, go t TB. So, they knew how it was circulated. R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Interviewer talks about the Department of Health’s ultraviolet lights and the separate sputum room in the various clinics. Also, the interviewer talks about being fitted for a mask but that she only wore it once. In all other instances, she did not wear the mask because the doctors and nurses did not. This spurs a comment about the use of a mask from Dr. Snyder. Dr. Snyder: See, you know who is responsible [in speaking] about the TB mask ... that was OSHA. It was a bunch o f baloney. I never wore a mask going out there to the Ccnmty [hospital], I never did. Maybe, I was ju st lucky, you know after all, I never had anymore trouble. Dr. Snyder: You know, I was the first one to get a telephone booth at the County Health Department to collect sputum. You know the kind that you open up the door. In fact, I think that it is still down there. On Roosevelt. County Clinic... 18th Street and Roosevelt. That's that o ld telephone booth where there was a fo ld in g door, you know, and w e'd have them cough and give us the sputum. Interviewer states Question 2: Did large numbers of people live together in small cabins? If so, were they family members, friends, or others? Dr. Snyder: Well, I don't know about that. But, I am sure that they all lived together in whatever living facilities they had. These cabins, I think, we tried to isolate them, we wanted the ones that had the disease in the cabin. We didn't want the other people in there. Interviewer gives an example of how some immigrants in Los Angeles live in small spaces with large numbers of people sharing one bed. If one person contracts TB, many others may become infected with the disease. Dr. Snyder: No, I don't think we had much o f that. Well, wherever they lived if they lived under those conditions [crowded], you can bet your boots that X numbers—some o f them didn't. I t ’ s fim ny about TB. You have a man and his wife and she's got TB and a positive sputum a n d he doesn't even have a positive skin test. It's strange, that is something that we don't know about. These people came out with old cars and they built these shacks out there in the desert and, o f course, they were all together there. You've got photographs from Lincoln Hospital. 96 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Some o f them were split [the cabins]. Same cabin. Yon'd have one mart in one place and another man in the other place. The County Hospital before we got a new building—my mother and dad came out every winter and I went down to the Jewish Merchant downtown, and I got a bolt o f muslin that I took out and my Dad and I put wire hangers between two patients-they were dying- practically out in the open. We cut those things and stitched them so we cotdd put a curtain between them; otherwise they were wide open. Then one o f the radio places here got them to build a central radio and we got earphones through surplus, so they wired up the building, and these fellow s coidd get two or three stations/selections. Dr. Snyder states Question 3: Did they work? If so, did they work in Sunnyslope or did they work in Phoenix or in another place? Some o f them did. Sure. They worked in any place where they got a job. They did not tell anyone that they had TB. Interviewer tells Dr. Snyder about patients in Los Angeles not telling their employer that they have TB. Dr. Snyder states Question 4: Did the other townspeople accept the people with TB or were they discriminated against because of their illness? Dr. Snyder: In most cases i f they knew [that they had TB], they wouldn ’ t take them in. I think that there was some discrimination. Dr. Snyder states Question 5: Did they tell their employer that they had TB? Most o f the time they didn't tell them. More Specific Medical Questions: 1) What was the treatment for TB during those years in Sunnyslope? 97 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. The treatment was the same every p la c e :.bed rest. When therapies evolved, everyone took advantage o f them. 2) What kind o f follow-up did they have? Same as everybody else. 3) Where were the TB patients treated? A lot were treated m homes and in isolation facilities until negative. Interviewer: When did they get negative without medication. A lot o f people got negative even with bed rest. They don't want to wait now until they are negative. 4) Who treated them? A lot o f quacks. Interviewer: Did anyone tell you that they were going to quacks? Dr. Snyder: I knew, but it was minimal. 5) Did they use alternative medicines such as herbs or specific desert remedies? Dr. Snyder: I d o n ’ t know i f they used alternative medicines. R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. A p p en d ix B In English: Informed Consent Form Informant Questions 99 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. INFORMED CONSENT FORM Research Project: Health Care Alternatives Among Los Angeles Guatemalans: Contemporary Standard “ Scientific ” Versus Traditional Medical B elief Systems. You are being asked to participate in a study about your health-care experiences and practices after you have been diagnosed with TB. The researcher seeks to explore to what extent Guatemalans in Los Angeles combine indigenous Guatemalan folk practices with Western medicine. The goal o f this research is to help you and your health-care provider to achieve a better mutual understanding, and thus, improve the level of health-care delivery. The role o f the researcher in this project will be to observe you and the health-care provider while he or she is explaining the condition of your health. At no time, would the researcher be present if and when a physical examination occurs. After you have finished your appointment, the researcher would like to conduct a brief interview with you. Questions will relate to your background, health-care experiences in Guatemala and Los Angeles, and your concepts regarding health and sickness in general. Interviews are generally thought not to hold any risks to the physical or mental well being of the subject. However, you have the right to decline to answer any question. Furthermore, you may withdraw from the study at any time with no adverse prejudice from the researcher. Confidentiality: Your information will be kept confidential. Reports written about this study will give only group information and will not identify specific names of individuals. If you understand the description of this study, if you have no questions, and if you agree to be in this study, please sign this consent form. Do you have any questions before you sign? 100 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Participant’s Consent: I voluntarily request that I be included in this study. Participant’s Name (please print): Participant’s Signature: Date: Researcher’s Name and Signature: Date: If applicable: Translated by:_____________________________________ Translator’s signature Into:___________________________ Language Translated for:_____________________________________ Participant’s Signature Date:______________________________________________ Month Day Year 101 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. informant Questions 1. Tell me about your family and the place where you came from? 2. What were some of the reasons people got sick there? 3. What kinds of illnesses did they have and what ways were they treated? 4. When did you suspect that you were sick? 5. When did you first seek help? Where? From Whom? 6. In respect to health-care, would you like to tell me about your experiences here in Los Angeles in contrast to your experiences in Guatemala. 7. Do you feel that there is at present a problem communicating with a health-care provider(s)? If so, please explain the nature of this difficulty. 102 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. A ppen dix C In Spanish: Formulario De Consentimiento Preguntas 103 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. FORMULARIO DE CONSENTIMIENTO (TRAS HABER SIDO INFORMADO) Proyecto de investigation: Alternatives de Asistencia Sanitaria entre los giiatemaltecos de Los Angeles: el Sistema AdentificoQ Standard Contemporaneo versus Sistemas Tradicionales basados en Creencias Medicos. Tras habersele diagnosticado Tuberculosis, le pedimos su participation en un estudio sobre experiencias y practicas de salud. Tratamos de explorar en que medida combinan los guatemaltecos de los Angeles practicas tradicionales guatemaltecas con la medicina occidental. El objetivo de esta investigacion es ayudarle tanto a usted como al personal sanitario que le atiende a alcanzar un mejor nivel de entendimiento mutuo para, consecuentemente, mejorar el nivel de asistencia sanitaria. En caso de que usted acepte, la investigadora estaria presente cuando el personal sanitario le explique su estado de salud, pero nunca cuando el personal sanitario le este examinando. Despues de finalizada su cita, al investigador le gustaria tener una breve entrevista con usted. Se le haran preguntas sobre su pasado, sus experiencias de salud en Guatemala y Los Angeles, y sobre su opinion en relation con la salud y enfermedades en general. Las entrevistas estan pensadas de manera que no conlleven ningun riesgo para la situation fisica o mental del individuo. Sin embargo, usted tiene derecho a no contestar a cualquiera de las preguntas. Ademas, puede dejar de participar en este estudio en cualquier momento, sin que la investigadora se vaya a formar una mala opinion de usted. Confidencialidad Toda la informacion ofrecida por usted sera confidential. Los informes escritos durante este estudio solamente daran informacion acerca de grupos y nunca daran los nombres de las personas que participaron. 104 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Si usted entiende la description de este estudio, si no tiene preguntas y si acepta participar en este estudio, firme por favor este formulario de consentimiento. Antes de que firme, ) tiene usted alguna pregunta? Consentimiento del Participante Voluntariamente solicito que se me incluya en este estudio. Nombre de la persona Participante Firma de la persona Participante (por favor, con mayusculas) Nombre de la Investigadora Firma de la Investigadora 105 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. Preguntas 1. Hableme sobre su familia y el lugar donde nacio. 2. ^Por que la gente se ponia enferma alii? 3. <i,Q ue tipos de enfermedades son comunes y como se tratan? 4. ^Cuando penso por primera vez que estaba usted enfermo/a? 5. ^Cuando busco ayuda por primera vez? £,A quien le pidio ayuda? 6. ^Me podria contar en que se diferencian sus experiencias en Los Angeles y en Guatemala en materia de salud? 7. ^Cree que existe algun problema comunicativo entre usted y el personal sanitario que le atiende? Si es asi, expliquelo, por favor. 106 R eproduced with perm ission of the copyright owner. Further reproduction prohibited without perm ission. L <s -n IM AGE EVALUATION TEST TARGET (Q A -3) / f / / - IM/4GE . Inc 1653 East Main Street Rochester. NY 14609 USA Phone: 716/482-0300 Fax: 716/288-5989 © 1993. Applied Image. Inc.. All Rights R eserved perm ission of the copyright owner. Further reproduction prohibited without perm ission.

Asset Metadata

Creator Reiter, Laura Rose (author)

Core Title Cultural and social aspects of the treatment of TB: Diachronic and synchronic perspectives

Contributor Digitized by ProQuest (provenance)

School Graduate School

Degree Master of Arts

Degree Program Visual Anthropology

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag anthropology, cultural,health sciences, medicine and surgery,health sciences, public health,OAI-PMH Harvest

Language English

Advisor Simic, Andrei (committee chair), Flick, Robbert (committee member), Weibel-Orlando, Joan (committee member)

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c16-29267

Unique identifier UC11341279

Identifier 1395115.pdf (filename),usctheses-c16-29267 (legacy record id)

Legacy Identifier 1395115.pdf

Dmrecord 29267

Document Type Thesis

Rights Reiter, Laura Rose

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the au...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus, Los Angeles, California 90089, USA