INT J TUBERC LUNG DIS 8(11):1355–1359 © 2004 IUATLD
Health-seeking patterns among Chinese immigrant patients enrolled in the directly observed therapy program in New York City M-J. Ho Department of Social Medicine, National Yang-Ming University, Taipei, Taiwan SUMMARY S E T T I N G : Outreach services and chest clinics of the Department of Health in New York City. O B J E C T I V E : To investigate the health-seeking behavior patterns of Chinese immigrant patients enrolled in the directly observed therapy (DOT) program in New York City, and to suggest service provision strategies. D E S I G N : Data were collected by means of participant observation, semi-structured interviews, and patient narratives. These data were then analyzed statistically as well as qualitatively, based on grounded theory. R E S U L T S : Of 60 patient informants, 38 had sought treatment for the relief of symptoms, and 22 were diagnosed by physical examination. Among 125 consultations made by 38 symptomatic patients during the period of their illness, there were more Chinatown physicians,
including traditional Chinese practitioners, than other types of health providers, but they proportionally made the fewest referrals to the DOT program. C O N C L U S I O N S : Chinatown physicians are the main health providers to whom Chinese immigrants with tuberculosis resort. Education and collaboration with Chinese doctors, practitioners of both biomedical and traditional Chinese medicine, in New York City’s Chinatown, are essential to reduce enrolment delays in the DOT program. The free services of the DOT program should be made more widely known to the Chinese immigrant population. K E Y W O R D S : tuberculosis; health care seeking behavior; immigrants; New York City
TUBERCULOSIS (TB) among foreign-born persons has become a major concern among public health authorities in the United States1 and other industrialized countries such as Australia,2 Canada,3 Italy,4 and the Netherlands5 since the late 1980s. In New York City (NYC), the TB case rate increased from 17.2 per 100 000 population in 1978 to 52.0/100 000 in 1992. In addition to the emergence of the human immunodeficiency virus (HIV) and multidrug-resistant tuberculosis (MDR-TB, resistance to at least isoniazid and rifampin), surveillance data from NYC suggested that foreign-born immigrants were a contributing factor to the epidemic. While the proportion of HIV and MDR-TB cases has declined since 1992, the proportion of immigrant TB cases has continued to increase, reaching 66.9/100 000 in 2001.6 After the containment of TB among US-born patients since 1992, with directly observed therapy (DOT) programs,7 the application of the DOT program and preventive treatment of latent tuberculosis infection among immigrant patients has become the main focus of the TB control effort in NYC.8
Although the increasing number of immigrant cases accounts for the majority of TB cases in industrialized countries, not much is known about the health-seeking patterns among these immigrants with TB. Previous researchers have focused on the health beliefs of immigrant communities rather than on their actual behaviors. Carey et al., investigating the health beliefs of Vietnamese refugees in New York State,9 suggested that targeted education to address incorrect beliefs about TB among refugees could enhance adherence to the program. However, patient healthseeking behavior does not necessarily follow their beliefs; there are many other factors that influence patients’ care seeking patterns. Farmer et al. reported that 85% of patients in a Haitian TB program adhered to biomedical treatment despite their belief that sorcery was the cause of tuberculosis.10 To improve enrolment in and adherence to TB treatment programs, researchers must go beyond studies of health belief and investigate possible points of intervention in health-seeking behavior. As China has been the largest contributing source of foreign-born
Correspondence to: Dr Ming-Jung Ho, Department of Social Medicine, National Yang-Ming University, 155 Li-Nong Street, Section 2, Taipei, Taiwan. Tel: (1886) 2-2826-7346. e-mail:
[email protected] Article submitted 10 October 2003. Final version accepted 16 March 2004.
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TB cases in NYC, this study investigates patterns of health-seeking behavior of Chinese immigrant patients enrolled in NYC DOT programs. Once the healthseeking patterns of Chinese immigrant patients are understood, service provision strategies can be suggested to increase their enrolment in the DOT program. The methods of data collection and data analysis described in this study could be applied to other immigrant communities with a high incidence of TB.
STUDY POPULATION AND METHODS The present study was based on data collected from 60 Chinese patients with TB enrolled in the NYC Department of Health’s (DoH) DOT program. Patient informants were recruited from DoH chest clinics or outreach services between June 1999 and June 2000 on a face-to-face basis while they attended chest clinics, or were observed by DOT workers in the field. Random sampling was not conducted according to the contact information listed in the TB registry. Some patients did not want their roommates to know of their illness and therefore did not want to be contacted. Nevertheless, the patients’ socio-demographic characteristics are comparable to data on Chinese patients in the DoH 1999 TB registry (unpublished computerized data set). A number of methods were used to collect data from these patients: participant observation, semistructured interviews, illness narratives, reviews of medical records, and analysis of epidemiological data. Informants were first encouraged to freely describe their illness experience. A semi-structured, open-ended interview was then used to fill in the gaps in their illness narrative. The interview questions were modified from Kleinman’s explanatory models on how those engaged in clinical transactions make sense of given episodes of illness in terms of etiology, symptoms, pathophysiology, course of sickness, and treatment.11 Participant observation was carried out mainly at DoH outreach offices and chest clinics; however, the researcher also had a chance to participate in and observe the daily lives of Chinatown immigrant workers, in addition to their more specific medical activities. Medical records and epidemiological data were also utilized to supplement data gathered from patients and participant observation. Patterns of health-seeking behavior were extracted from descriptive data, and were analyzed statistically as well as qualitatively. The SSPS 10.0 program (SSPS Inc, Chicago, IL) was used to generate descriptive statistical results such as frequencies of study sample characteristics. Grounded theory was applied to analyze qualitative data. By coding data closely and systematically, practitioners of a grounded theory ‘develop’ theoretical propositions instead of being confined to preconceived theory.12,13
RESULTS The median age of the patients in the study sample was 45.5 years (25th percentile 30 and 75th percentile 65). The largest age group were those between 25 and 34. Twice as many males as females were infected with TB in both the study sample and in the general Chinese patient population in NYC. Recent immigration to the US, i.e., within the past 5 years, is a wellknown risk factor for active TB.14,15 However, data relating to the 1999 DoH Chinese patients as well as those in this study sample demonstrate that the majority of patients had been in the US for more than 5 years. At the time of interview, patient informants had been in the US for anywhere between less than 1 month up to 33 years, with an average length of 8.6 years. The majority of informants (83.3%) were laborers, working an average of 13 h per day. One noteworthy characteristic was that although 40% of the informants interviewed had medical insurance, the majority did not have comprehensive coverage. As a result, the vast majority of the patients in this study had financial incentives to join the DOT program. The health-seeking patterns of Chinese DOT patients will be described in terms of: 1) initial treatment seeking strategies, 2) multiple providers consulted, and 3) final referral patterns. Of 60 informants, 22 reported that they had not sought treatment for TB, and were diagnosed as having TB by physical examination. By order of frequency, 10 patients were diagnosed as having TB as a result of immigration-related physical examinations; five had medical examinations for conditions other than TB, such as pregnancy and cancer, and TB was an accidental finding in these disease work-up processes; four discovered that they had TB disease at an annual physical examination; and three were diagnosed at a school entrance physical examination. The majority of patient informants (n 5 38), however, initially sought treatment for their TB-related symptoms. The majority of these (n 5 24) initially saw a private physician in Chinatown, NYC; nine presented to a hospital with life-threatening symptoms such as hemoptysis and shortness of breath, without having consulted a physician; three had first consulted physicians overseas by telephone or while they were abroad; one had consulted a private general practitioner outside Chinatown; and another presented directly to the DOH chest clinic. The fact that only one informant first consulted the DOH chest clinic reflects the lack of awareness about the DoH TB treatment program among the Chinese immigrant community. Of the 24 patients who first sought treatment in Chinatown, 16 consulted general practitioners, six consulted traditional Chinese medical practitioners, and two went directly to a pulmonologist. Compared to the patients diagnosed with TB as a result of a physical examination process and referred
Health-seeking patterns of Chinese immigrants
to the DoH without intermediate health providers, the 38 symptomatic patients each saw an average of 3.29 doctors before presenting to the DoH DOT program. Among the 125 consultations made by these 38 symptomatic patients during their illness period (including the final DOH consultation), Chinatown providers were again more frequent than other types of health providers. A total of 53 health care providers in Chinatown were consulted, among whom 24 were general practitioners; 12 practiced traditional Chinese medicine; nine were lung specialists; and eight were radiologists. An additional 34 health care providers outside Chinatown provided services to the symptomatic patients: 25 of these worked in a hospital setting, seven were abroad when consulted, and one general practitioner and one radiologist outside Chinatown were consulted. The identity of the final referral provider is also revealing in this investigation of health-seeking patterns. The majority (n 5 25) of the symptomatic patients were referred to DoH DOT programs by hospital staff. Although Chinese TB patients most frequently consulted Chinatown providers, only seven patients were referred to the DOT program by these providers. In addition to hospital and Chinatown providers, health care workers at the DoH recruited six patients based on mandatory laboratory reports. These patients did not follow up their laboratory results with the physicians who ordered the tests.
DISCUSSION This study of health care seeking patterns of Chinese DOT patients has several implications for service provision. The providers to whom these patients first present, the physical examinations for immigration, disease conditions, regular check ups, and school entrance exams, can all detect asymptomatic TB patients. Screening for TB as part of a physical examination should be continued and strengthened. Although there are doubts as to whether active case finding by postmigration screening is cost-effective,16 most studies have concluded that screening of immigrants is effective, particularly screening of immigrants from countries with a high incidence of TB.17,18 The majority of symptomatic Chinese patients initially resorted to private physicians in Chinatown. An analysis of their illness narrative reveals that their reason for provider selection is convenience. Chinatown is where Chinese immigrant laborers work, shop, and live.19 Unlike those Chinese immigrants who are skilled professionals, seen as a model minority, and live outside Chinatown,20 the Chinese DOT patients are mainly laborers who hold menial jobs in Chinatown, or have retired from doing menial jobs in Chinatown. They have a poor command of the English language, and are dependent upon Chinatown, where street names are in Chinese and Mandarin and/or one
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of the major Chinese dialects such as Cantonese or Fujianese is spoken. Chinese immigrant laborers work long hours (averaging 13 h in this study) at below minimum wages. They live in overcrowded, poorly maintained tenement buildings in Chinatown in Manhattan and satellite Chinatowns in other boroughs. Undocumented (illegal) immigrant workers face the most severe economic difficulties, bearing the debt of the smuggling fee (around US$60 000 in the research period) and usury. For these overworked immigrant laborers without medical insurance, it is most convenient to consult a private Chinese physician practicing in Chinatown. Public health policy makers may be concerned that fear of exposure of illegal status might deter Chinese immigrant laborers from seeking treatment at public health facilities.21 Another study of 122 Chinatown laborers suggests that a substantial proportion of informants (47.5%) were convinced that the DoH would not notify the Immigration and Naturalization Service of a TB patient’s illegal status.22 Only a small number (7.4%) thought that TB patients who were illegal immigrants would risk deportation, while the remainder was not sure and open to information. The fact that nine patients initially presented to public hospitals further suggests that Chinese immigrant laborer patients are not deterred from seeking care from public health facilities for fear of deportation. Patient illness narratives demonstrate that it is commonly known among Chinese immigrant laborers that the emergency services of public hospitals in the US do not refuse patients based on their insurance or legal status. Chinese immigrant laborers do not utilize public hospitals as their primary medical resource mainly because of the language barrier and inconvenience. However, if they suffer from conditions for which they consider hospitalization is necessary, they will readily present to a public hospital. Nevertheless, the DOT programs are not as widely known as the public hospital emergency service. Only one informant was aware that this free service was provided by the DoH. Many informants suggested that if they had known about the DOT program, they would not have had wasted so much time and money seeking treatment from multiple providers for their condition. NYC’s TB control program is aware of this situation, and has launched a social marketing campaign to raise the profile of the DOT program among five immigrant communities with a high incidence of TB, including Chinese immigrants.8 The main target populations of this campaign are community leaders and community health care providers. It is important to increase awareness about TB-related issues among community health care providers and community leaders. However, in the present campaign only those doctors who practice biomedicine are included. This study suggests that traditional practitioners are also frequently consulted by immi-
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grant patients, and that they should also be part of the DOH referral system. In addition, patient informants point out that the community health care providers and leaders recruited in the social marketing campaign are socially and economically superior to the immigrant laborers. These ‘elite’ immigrants may take advantage of their intermediary position and exploit both the public health agency and the marginal immigrant workers. For example, some physicians advertise that they offer free medication for treating TB. The patients do eventually receive free medication through the DOH DOT program, but they end up first having to pay for the initial diagnostic tests and office visits to the Chinese physician in Chinatown, services that they could have received free of charge if they had known about them and if they had attended the DoH chest clinics. Instead of relying on the intermediary providers, the DoH could involve more community members who share the same background as the immigrant laborers. Patient informants have suggested hiring people at the grassroots level such as ex-patients, family members, and hometown association members to supervise the DOT program, and that conducting health education in the immigrant laborer community would enhance the awareness of TB and the DOT program more effectively than using intermediary elite Chinese. Studies have shown that family members serving as guardians to supervise TB treatment achieve better adherence than the officials for health centerbased DOT.23 To enhance community awareness of TB and DOT services, efforts need to be made to increase referrals from Chinatown’s primary physicians, both biomedical and traditional. The fact that Chinatown physicians see the majority of symptomatic patients yet make the fewest referrals to the DOT program clearly highlights the need for further collaboration with, and education of, these providers. In addition to the implications for service provision, the design of this study also calls for further discussion. The methods used to collect data are qualitative in nature. As the majority of the study population did not possess medical insurance and consulted private doctors on a fee-for-service basis, it was not possible to triangulate patient reports of health-seeking behavior with registered clinical records. Nonetheless, this study is a subset of a larger study that includes biomedical doctors, traditional Chinese medical practitioners, Chinese immigrant laborers, and public health workers in Chinatown.22 The patient reports are parallel to the accounts of the health providers and the general Chinatown laborer community, and thus the results of the study are quite reliable. The study design could be applied to study health care seeking patterns of other immigrant communities that lack medical insurance and rely on private health care providers in the community. In conclusion, Chinatown’s physicians are the
main health care providers to whom Chinese immigrants with TB resort. Education of, and collaboration with, both biomedical and traditional Chinese physicians in New York City’s Chinatown is essential to reduce delays in enrolment in the DOT program. The free services of the DOT program should be better publicized among the Chinese immigrant laborer population. This analysis of health-seeking patterns of Chinese DOT patients also suggests that empowerment of Chinese immigrant laborers, instead of reliance on intermediary elite Chinese immigrants, could enhance the awareness of TB as well as the availability and subsequent utilization of the DOT program among this immigrant community. The methods of data collection and analysis could also be applied to other immigrant populations. Acknowledgements This article is based on dissertation research conducted with the financial support of the NYC Department of Health and the Wu Tzun-Hsian Foundation. I thank the patient informants and the staff members of the NYC Department of Health who kindly facilitated the research project on which this article is based.
References 1 Centers for Disease Control and Prevention. Tuberculosis among foreign-born persons entering the United States— recommendations of the Advisory Committee for the Elimination of Tuberculosis. MMWR 1990; 39(RR18): 1–21. 2 Heath T C, Roberts C, Winks M, Capon A G. The epidemiology of tuberculosis in New South Wales 1975–1995: the effects of immigration in a low prevalence population. Int J Tuberc Lung Dis 1998; 2: 647–654. 3 Long R, Sutherland K, Kunimoto D, Cowie R, Manfreda J. The epidemiology of tuberculosis among foreign-born persons in Alberta, Canada, 1989–1998: identification of high risk groups. Int J Tuberc Lung Dis 2002; 6: 615–621. 4 Codecasa L R, Porretta A D, Gori A, et al. Tuberculosis among immigrants from developing countries in the province of Milan, 1993–1996. Int J Tuberc Lung Dis 1999; 3: 589–595. 5 Wolleswinkel-van B J, Nagelkerke N J, Broekmans J F, Borgdorff M W. The impact of immigration of tuberculosis in The Netherlands: a model based approach. Int J Tuberc Lung Dis 2002; 6: 130–136. 6 New York City Department of Health and Mental Hygiene. Tuberculosis in New York City, 2001: information summary. New York, NY: New York City Department of Health and Mental Hygiene, 2002. 7 Frieden T R, Fujiwara P F, Washko R M, Hamburg M A. Tuberculosis in New York City—turning the tide. New Engl J Med 1995; 333: 229–233. 8 Fujiwara P I. Tide pools: what will be left after the tide has turned? Int J Tuberc Lung Dis 2000; 4: S111–S116. 9 Carey J, Oxtoby M, Nguyen L, Huynh V, Morgan M, Jeffery M. Tuberculosis beliefs among recent Vietnamese refugees in New York State. Public Health Report 1997; 112: 66–112. 10 Farmer P, Robin S, Ramilus S L, Kim J Y. Tuberculosis, poverty, and “compliance”: lessons from rural Haiti. Seminar Respir Infect 1991; 6: 254–260. 11 Kleinman, A. Patients and healers in the context of culture. Berkeley, CA: University of California Press, 1980. 12 Glaser B G, Strauss A L. The discovery of grounded theory: strategies for qualitative research. Chicago, IL: Aldine, 1967.
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13 Strauss A L, Corbin J. Basics of qualitative research: grounded theory procedures and techniques. Newbury Park, CA: Sage Publications, 1990. 14 Centers for Disease Control and Prevention. Targeted tuberculin testing and treatment of latent tuberculosis infection. MMWR 2000; 49(RR-6): 1–51. 15 Chin D, DeRiemer K, Small P, et al. Differences in contributing factors to tuberculosis incidence in U.S.-born and foreign-born persons. Am J Respir Crit Care Med 1998; 158: 1797–1803. 16 Marks G B, Bai J, Stewart G J, Simpson S E, Sullivan E A. Effectiveness of postmigration screening in controlling tuberculosis among refugees: a historical cohort study, 1984–1998. Am J Public Health 2001; 91: 1797–1799. 17 Gounder C F, Driver C R, Scholten J N, Shen H, Munsiff S S. Tuberculin testing and risk of tuberculosis infection among New York City schoolchildren. Pediatrics 2003; 111: 309–315. 18 Verver S, van Soolingen D, Borgdorff M W. Effect of screening
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of immigrants on tuberculosis transmission. Int J Tuberc Lung Dis 2002; 6: 121–129. Kwong P. Forbidden workers: illegal Chinese immigrants and American labor. New York, NY: The New Press, 1997. Ong, A. Flexible citizenship: the cultural logics of transnationality. Durham, NC and London, UK: Duke University Press, 1999. Asch S, Leake B, Gelberg L. Does fear of immigration authorities deter tuberculosis patients from seeking care? West J Med 1994; 161: 373–376. Ho M. Discourses on immigrant tuberculosis: a case study of New York City’s Chinese laborers. PhD thesis. Oxford, UK: Oxford University, 2001. Manders A J, Banerjee A, van den Borne H W, et al. Can guardians supervise TB treatment as well as health workers? A study on adherence during the intensive phase. Int J Tuberc Lung Dis 2001; 5: 838–842.
RÉSUMÉ
Les services extérieurs et les polycliniques thoraciques du Département de Santé à New York City. O B J E C T I F : Investiguer les types de comportement de recours aux soins chez les patients immigrants chinois enrôlés dans le programme de traitement directement observé (DOT) à New York City et suggérer des stratégies de prestations de services. S C H É M A : Les données ont été recueillies par l’observation des participants, par des interviews semi-structurées et par les récits des patients. Ces données ont ensuite été analysées sur le plan statistique ainsi que de manière qualitative en se basant sur une théorie fondée. R É S U L T A T S : Parmi les 60 patients fournissant des informations, 38 ont commencé à recourir au traitement pour soulager leurs symptômes et 22 ont été diagnostiqués par l’examen physique. Parmi les 125 consultations des CONTEXTE :
38 patients symptomatiques pendant la période de leur maladie, les médecins de Chinatown, y compris les praticiens chinois traditionnels, l’emportaient sur les autres types de pourvoyeurs de soins, mais référaient proportionnellement le moins vers le programme DOT. C O N C L U S I O N S : Les médecins de Chinatown sont les principaux pourvoyeurs de soins consultés par les immigrants chinois atteints de tuberculose. L’éducation et la collaboration avec les médecins chinois du Chinatown de New York City, tant ceux pratiquant la médecine biomédicale que la médecine chinoise traditionnelle, sont essentielles pour réduire les retards d’enrôlement dans le programme DOT. De plus, il faudrait faire connaître plus largement, dans la population immigrante chinoise, la gratuité du programme DOT.
RESUMEN M A R C O D E R E F E R E N C I A : Servicios extrainstitucionales y consultorios de neumología del Ministerio de Salud en la Ciudad de Nueva York. O B J E T I V O : Investigar los tipos de comportamiento de búsqueda de atención sanitaria de los pacientes chinos inmigrantes inscritos en el programa de tratamiento directamente observado (DOT) de la Ciudad de Nueva York y proponer estrategias de prestación de servicios. M É T O D O S : Los datos se recopilaron mediante observación de los participantes, entrevistas semiestructuradas y el discurso de los pacientes. Estos datos se analizaron estadísticamente y cualitativamente con base en una teoría confirmada. R E S U L T A D O S : Entre los 60 pacientes informantes, 38 comenzaron a buscar tratamiento para mejorar los síntomas y en 22 pacientes se estableció el diagnóstico durante un examen físico. En las 125 consultas que tuvie-
ron los 38 pacientes sintomáticos durante el periodo de su enfermedad, los médicos del barrio chino, entre ellos practicantes de la medicina china tradicional, fueron mayoritarios sobre los otros tipos de proveedores de servicios de salud, pero ellos a su vez remitieron proporcionalmente menos pacientes al programa DOT. C O N C L U S I O N E S : Los médicos del barrio chino constituyen los principales proveedores de servicios de salud a los cuales recurren los inmigrantes chinos. La educación y la colaboración con los médicos en el barrio chino de la Ciudad de Nueva York, practicantes de la medicina china biomédica y de la medicina tradicional, son primordiales para reducir el retraso de inscripción en el programa DOT. En más, debería difundirse más ampliamente en la población inmigrante china la disponibilidad gratuita del programa DOT.
