It is important for US healthcare providers to know the historical underlying social stigma of tuberculosis in many immigrant and refugee communities. The negative implications surrounding a TB diagnosis in many cultures are driven by a poorly understood disease course, contagion risk, and differing treatment protocols. A little under 100 years ago, similar attitudes towards tuberculosis were common in American society as well. Similar to the HIV/AIDS epidemic of the 1990s, a diagnosis of TB in the 1940s was scary, and patients commonly felt isolated and alone with an unclear prognosis. A survey conducted in the 1990s showed that three quarters of recently arrived Vietnamese immigrants to New York said that community members would fear and avoid someone known to have TB. The adverse social impact of tuberculosis has also been noted in Honduran and Hispanic communities, and historically has been used as an insult for the Sidama people of Ethiopia.
The fear and stigmatization is rooted in fear of social isolation and ostracization. In Somali culture, children learn early on that TB is a horrible disease that results in loved ones no longer sharing food and drink with family members. It is unknown to many living in rural areas that TB is a treatable disease and anti-tuberculosis medications are available. Thus, persons with chronic coughing or other symptoms may refuse to see healthcare providers because they fear the diagnosis.
This stigmatization has obvious consequences for health care providers. In addition to complicating adherence to diagnostic and therapeutic plans, it makes household contact tracing a sensitive issue. In a close-knit community where two or three families may live under one roof, people are as reluctant to share information about their diagnosis of TB as they might be about HIV.
Tuberculosis is not just a disease to be treated with antibiotics, but an entity with historical and cultural roots that run long and deep. The following recommendations were suggested by Seattle Somali community members regarding the approach a physician should have when diagnosing a patient from any refugee or immigrant background:
- Treat the diagnosis of tuberculosis with the same sensitivity and confidentiality you would reserve for sexually transmitted diseases and HIV.
- Educate your patient about the curable nature of tuberculosis and emphasize the good health that will result from treating the disease.
- Take time to discuss the social ramifications of the disease. If the patient is not infectious, reassure him or her that full social participation should continue as before the diagnosis.
Common Miscommunications in Disease Management
Although this page mostly focuses on non-English speaking patients, the question should nonetheless be raised; how are these issues any different than those facing our English speaking patients? The answer of course is that the only difference is that of tone or flavor, but the general issues are the same. The reason for this is that medicine is itself a linguistic and cultural system with assumed values and priorities. The assumed difference between medical culture and everyday life lies behind much of this discussion.
The most common cross-cultural miscommunications in our clinic can be grouped according to the following categories:
- The (illness) or “diagnosis” is unheard of.
- The diagnosis is known, but has been re-interpreted.
- The diagnosis is known, but management is not agreed upon.
- The diagnosis and management are agreed upon, but the relative costs (financial or social) of diagnosis are unacceptable.
Tuberculosis Unknown
In 1990 we conducted structured interviews of a small sample of patients in our clinic: 20 adult respondents chosen at random from one of five ethnic groups: Lao, Mien, Chinese, Vietnamese, and Cambodian (Thai, 1990). We were interested to know what sense refugee patients made of common biomedical diagnostic terms. Words like “cold,” “parasite,” “tuberculosis,” “epilepsy,” “hypertension,” and “heart attack.” In this survey we asked if participants could name the major symptoms of an illness, and beyond that if they had any biomedical notions associated with causation or disease process.
The Mien, Lao, and Cambodian patients could identify TB appropriately in about 1/3 of the cases. The ethnic Chinese and Vietnamese gave appropriate responses 47% and 52% of the time, respectively. The pathology and etiology of TB could be elaborated on by about 20% of the Chinese and Vietnamese, 13% of the Cambodians, and only about 5% of the Mien and Lao. Similarly, in a survey of 102 patients in Wardha District in India, 2/3 had never heard of the disease tuberculosis (Barnhoorn and Adriaanse, 1992). In this situation the physician is confronted with creating a new illness category for a patient, and describing what the experience of having this illness would be like. The patient must then make sense of the diagnosis within their experience of illnesses and according to their understanding of disease categories.
Tuberculosis Re-Interpreted
The use of the word tuberculosis becomes more complicated when the word is known, but the symptoms are misunderstood and associated to a different illness. Nichter and Nichter (1994) report that in Oriental Mindoro, located in the Philippines, some of the early stages of latent TB are understood and discussed as “mahina ang baga” which literally translates to English as “weak lungs.” Weak lungs is a well known concept for many Filipinos in this region, but one that carries none of the specificity that TB suggests.
Physicians may use this term out of sensitivity to the harsh social stigma attached to TB as they offer treatment plans to someone who is Tuberculin Skin Test positive (TST, otherwise known as ppd), or who has an abnormal chest x-ray and requires preventive therapy. However, this then leads patients to understand “weak lungs” as an illness associated with recurrent acute respiratory tract infections, especially in children. For patients in Mindoro the phrase describes loss of weight, lack of appetite, low grade “inside” fever, and/or prolonged cough and cold.
TB, in contrast, is associated with many of these same symptoms, but is a very serious illness that must be diagnosed by a doctor, and generally involves coughing up blood. Weak lungs can be an antecedent to TB, but should be considered a separate category of illness in this culture. In this example, the use of the word tuberculosis is a known diagnosis in this culture but it has been redefined in a very limited way.
The situation becomes even more convoluted when Isoniazid (INH) therapy is advertised in this culture, referring to it in a way that suggests it is a vitamin for “weak lungs.” When people experience recurrent respiratory tract infections they may take a week or two of INH to “strengthen” their lungs. The implications for drug resistance or confusion around the true purpose of INH is obvious.
In situations like this physicians need to know something of the local semantics of illness to know what key words will convey to the patient, as there may be unknown uses of the words that complicate the diagnosis.
TB Managed Differently in Home Country
Many people from varying cultures, including our own, find the idea of treating subclinical or latent disease suspicious. If there are no symptoms, then what are you treating? In the US, approach to chronic illness is based on empirically derived evidence, statistics and algorithms. In other parts of the world, spiritual healers may promote health traditions that are highly individualized, and take into account a person’s date of birth, living situation, symptoms, and health history when determining the diagnosis and management of the illness.
Another common situation in which the diagnosis of tuberculosis is not questioned, but the treatment strategy is unacceptable, is in the case of medication side-effects. From the patient’s point of view, a treatment should make you feel better, not worse. This especially applies to LTBI treatment when a person has been asymptomatic from the start.
In the US, it is a physician’s responsibility to relay all known risks and side effects associated with the medications they are taking. Additionally, the physician must monitor the patient for worsening states of health due to medication side effects. For example, it is known that Isoniazid therapy can lead to elevation in LFTs, therefore, monthly lab draws are recommended especially in high risk populations. When the side-effects are objective and severe, alternative drug regimens may be prescribed.
When the side effects are subjective and the physician considers them to be mild, they may be insensitive to the overall effect the symptoms are having on the patient. For example, many older Vietnamese patients will complain about INH making them feel “hot”, sometimes this means warm, sometimes it means flushed, but often this complaint refers to a constellation of symptoms (hot breath, rapid pulse, dry cough) taken to indicate too much “heat” in the body.
To a prudent person this should mean that their system is out of balance and requires a dietary or medicinal intervention. If the TB clinician minimizes the complaint, or pooh-poohs their concern, the trust that is supposed to comprise the therapeutic relationship is jeopardized.
Consider the following example, Cambodian patients will often complain of being “ahh kaamlang” (without strength), a condition by itself or in association with other illnesses. This complaint refers to more than just being out of strength, it means losing balance in a way that has left them without adequate “internal strength” to sustain their health. In a study of “non-compliance” among Cambodian patients in our clinic, Shimada (1995) found that Cambodian patients were often concerned that medication was too strong for them (43%), and concluded that when someone feels “ahh kaamlang,” the solution was to adjust the medication or discontinue it altogether.
In some cases people are more sophisticated and are well aware of the TB diagnosis, but take issue with our treatment algorithms. Most of the patients in our clinic come from cultures that hold the physician in very high regard. While they are inclined to trust physicians and to trust their diagnoses, they may feel that treatment decisions are made with reference to regular Americans and not with their community in mind.
For example, Brudney and Dobkin (1991) report that in the developing world the average annual risk of infection with mycobacterium tuberculosis is 2% to 3% so that by age 20, virtually everyone is TST positive. Given the prevalence of recent infections and the scarcity of diagnostic resources, the strategy in many of these countries is to track and treat active infections only, and not to treat inactive but TST positive cases.
People that immigrate from a health system operating according to this logic, to another health system where the opposite strategy makes sense given our epidemiologic context, fail to appreciate this epidemiologic shift. If they are aware of our different treatment strategy, they may feel that biomedicine is operating differently here, and it must have more to do with their minority/immigrant status, and less to do with concern about their health or the health of their community.
Social Costs of TB Unacceptable
In our clinic, fear of the diagnosis is more common than disagreements about diagnosis or appropriate management. This is again related to the risk of social isolation. In some cases there is a frank denial of the TB diagnosis because it will create unacceptable financial and social costs. Norman Bethune, a surgeon to the liberation forces of China in 1939, reflected on these costs when he said, “and as a doctor I suffered from two very different diseases. I was only beginning to make my way as a surgeon when I came down with a bad case of tuberculosis…My second sickness…well that wasn’t so simple. I caught it from no one, and I caught it from everything. I got it as a boy, as a man, as a doctor. It was much worse than tuberculosis. It wasn’t like curing an infection. I couldn’t get rid of it by drugs. And many of the things I saw as a doctor only made it worse…But there came a time when I no longer gave into it. That was after I came to understand that tuberculosis was not merely a disease of the body but a social crime…” (Waitzkin, 1983).
Case Study
Biyu was a 73 year old, Chao Jho speaking Chinese grandmother, who presented to her medical clinic with several months of fatigue, dry cough, and shortness of breath. Chest Xray suggested widely metastatic lung cancer, and subsequent biopsy showed very poorly differentiated non-small cell carcinoma. On the day she was informed of her ultimate diagnosis, her physician began by explaining that she had a very bad lung illness that was not treatable, and would probably continue to get worse. She began to cry and asked her physician in an urgent tone “Is it TB?”
She was told it was not, but that it was lung cancer for which there were no treatment options. To this she appeared somewhat relieved. She was clearly grieved that she had a terminal illness, but she went on to explain that the possibility that she would not be able to spend the remaining months holding her grandchildren or cooking for her family out of the risk that her cough might infect them was the worst possible scenario. The cancer was tragic, but it would not impose the sentence of isolation that she felt TB would require.
Steve Nachman (1993) found that this was the worst aspect of the disease for the detainees of the INS camp in Krome, Florida for Haitian boat people diagnosed with TB. For the Haitians TB is translated into creole a variety of ways, maladie de poitrine, maladi touse, teve, tibekiloz. Nachman explains that Haitians traditionally consider TB to be the worst of all afflictions since the sick person must be isolated. Maldi pwatrin (TB) is considered the worst possible diagnosis that presaged certain death. “The diagnosis was terrifying because traditional Haitian culture defines family relationships as warm, close, and enfolding. To be barred from one’s own family is nearly unbearable and because illness is a time when one is supposed to want and need companionship” (Nachman, 1993).
There are numerous other examples throughout Asia and the Pacific where the presence of TB in the family is a social humiliation, it jeopardizes marriage contracts of the family, it results in the isolation of the family, and can affect business relations. The importance of this is that no amount of individual patient education will help TB patients to deal with the larger community attitudes about TB. The community must be addressed, but the community is often an amorphous one that migrates between cities, coasts, and continents.
Agreement but Attempts to Comply Misdirected
When Shimada (1992) surveyed the Cambodian patients in our clinic and interviewed them at length about their prescribed medications (including INH) and their strategies for taking them, she was amazed to discover that 70% were considered non-compliant. After reviewing their charts and then speaking with them, it was determined that our adult Cambodian patients were non-compliant when narrowly defined as “not adhering to a prescribed medical regimen” but that in 2/3 of these people it was unintentional. The group of patients who were incorrectly taking their medications chose to do so for different reasons.
27% took the medicine when they felt they needed it, another 27% were unaware why the medication had been prescribed, 37% used other peoples’ medications for their illnesses. The remaining non-compliant behaviors centered around side effects. Patients tried to manage the side-effects by adjusting the prescriptions by dose or timing of the doses. At times patients were concerned about taking too many medications, so they decreased the amount (3%), at other times they felt that taking more medicine would hasten the healing process (30%).
Some attempted to balance their effects with diet and combined medications in unpredictable ways. Many people did one or more of these behaviors. The point here is that there were attempts, at times heroic attempts, to comply with medical therapy according to our Cambodian patient’s understanding of our intention and their own understanding of health, but the end result was still medical failure. The most common explanation about the need to adjust their medication was that it was “tanam klaing” or “strong medicine”, so strong in fact that unless dealt with properly, it would make their bodies weaker.
Miscommunication and Misinterpretation
There are other kinds of miscommunication, but these four large categories illustrate common linguistic and cultural negotiations that must take place between clinic staff and patients from immigrant communities. It is true that these kinds of miscommunications between lay culture and medical culture can occur between physicians and their English speaking patients also. It is important to keep in mind, however, that when attempting to communicate to non-English speakers this can become particularly problematic. One piece of the solution is the obvious need for a trained interpreter, but complex medical issues can be lost in interpretation as there is a reliance on the interpreter to manage the explanation. In an effort to help monolinguals appreciate the importance of interpretation, it is useful to look at the process to understand where it can often go awry.
Translation is an effort to find equivalence between two languages (Sechrest, 1973). There are several tasks to attend to in the process of translation and several types of equivalence to find. The first and most obvious is vocabulary equivalence, or finding the key word that conveys the meaning in both languages. The next is experiential equivalence. That is making certain that the equivalent experiences are conveyed. For example, the phrase “hair dresser” does not have a Navajo language equivalent, because in traditional Navajo life there is no equivalent cultural experience.
The final type is conceptual equivalence, this means finding the word that links to other words in the culture with unique emotional and experiential associations. This type of equivalence is very difficult to find, the more dissimilar languages and cultural experiences are, the harder it is to find conceptual equivalence. The translation of humor, literature, and poetry relies on finding conceptual equivalence. This is routinely impossible, and hence the shrugged explanation “lost in translation.”
Using tuberculosis as an example, the absence of a vocabulary equivalent of TB for the Mien, means the Mien have no word that differentiates TB from any other lung infection. Conversely, for the Tamang, the presence of multiple types of TB means that the use of the phrase TB may evoke one of their seven types of wasting illnesses with equally distinct implications for treatment.
In the clinic, during medical translation, we often rely on experiential equivalence. Here the symptoms of the illness are assumed to be held in common. While we have already discussed that at times this is problematic, in general there are vocabulary equivalents for straightforward symptoms of common illnesses. However, experiential equivalents associated with a word or phrase are affected by both reference and performance that the word implies.
A word has both referential and performative aspects. For example, when Jucovy (1978) asked dematolo-pathologists about their use of the word “dysplastic,” they explained that while they agreed upon its definition, they rarely used it outside of the small circle precisely because of the performative implications of its use. Dysplasia for pathologists refers to features of the cell and implies a limited range of diagnostic performances, but for surgeons it often implies wide resection of potentially “dysplastic” tissue. If this is true among our own clinical sub-cultures, this will be even more pronounced cultural differences.
In the case of TB, the referential value of TB for most Western trained medical professionals means collecting sputa, awaiting smear results, reviewing x-rays, beginning therapy, and monitoring it. Difficult steps, but not notably emotionally laden. For immigrant or refugee patients who are only aware of TB out of fear, it can imply sputum samples, xrays, and treatment, but it also implies the experience of embarrassment for their family, as well as community imposed isolation of the patient. For some groups TB might also imply expensive adjuvant ceremonies and trips to distant places in search of a healer and a cure.
Negotiating these complex performative implications, and mediating the differences between referential fields is the work of the professional medical interpreter. Knowing the implied references and performances of a target community means finding someone culturally competent in both the culture of medicine and target culture. While translating patient education materials into the target language is a necessary and important step in immigrant patient inclusion, the logic and idioms of the target class and cultural group are not usually adequately incorporated into these materials. More often than not cross-cultural programs are not truly bicultural efforts, and are really unilateral programs driven by the logic of public health and medicine.
There is already evidence that the use of culturally appropriate outreach workers in clinic settings enhances compliance. Radiate and Menzies (1994) found that compliance among the Cree in the Mistassini Cree territory in Northern Quebec dropped from 78% in 1981-1985, to less than 20% since 1986. The reason identified for this drop in treatment rates was a change in TB treatment follow-up from Cree community health workers, to non-Cree nurses. Similarly, Etkind et al. (1991) attributed their success among Southeast Asia patients in Boston to the use of bilingual-bicultural outreach workers. Compared to a national average of 61%, the Boston program found that 82% of the Southeast Asians beginning therapy completed it when the follow-up contact was made by bilingual-bicultural outreach workers. It comes as no surprise then that from Honduras, to Mexico, Haiti, and here in the States, the focus is on developing affordable systems that employ bilingual-bicultural outreach (Farmer 1991, Mata 1985, Rubel 1992).
Creating a TB Program with Cultural Mediation
Clearly, the solution to identifying and addressing cultural barriers to TB control does not lie in memorizing anecdotes or stereotypes about specific populations. It also does not lie solely in interpreted educational materials and programs. More must be done to target the practices, values, educational level, and changing dynamics of the various subgroups in the community if full medication understanding and adherence is sought. This lies in the development of a workable, cost-effective system, that may need to target several clinical or public health concerns to be affordable.
We developed Community House Calls in Seattle, WA to combat these challenges and facilitate the care of African and Asian refugees using Harborview Medical Center. Community House Calls (CHC) is a program of Harborview Medical Center’s (HMC) Interpreter Services and serves limited English proficient patients, families and communities who receive health care at HMC. Bilingual/bicultural caseworker cultural mediators provide same language services for patients facing complex medical and social circumstances and serve as liaisons to their respective communities.
A program like Community House Calls would allow TB control efforts to work in cooperation with the targeted communities in a given region. Regional and individual differences compounded by the process of acculturation make it impossible to predict on a person by person basis which of the above common communication issues will arise, and when these issues will arise. The House Calls Program is a living system that can address communication issues, adjust to points of resistance, monitor medical compliance, find cases in hard to navigate communities, establish a collaborative relationship with TB clinics, and provide other needed services to immigrant communities. Importantly, it also enables TB nurses to operate a little less like infection control police and a little more like a part of the primary care system. While this may make some sense, it may also seem unworkable because of cost. The following are potential strategies to make the program more affordable:
- One means of creating an affordable system would mean creating collaborative affinities between public health programs targeting the same populations. For example, Hepatitis B, STDs, and TB sharing the cost of such a system.
- More effective would be collaboration between primary care services serving a particular community and the public health system overlapping their effort.
- In rural areas where resources are spread thin across a wide area, the system of collaboration may also have to spread beyond medicine to include the school system, e.g. Head Start Programs, or other health and social services.
Closing Comments
Managing illness cross-culturally depends on communication, but communication depends on understanding the socially and culturally determined references and performances associated with a diagnosis and its treatment. Because people, their communities, and the process of acculturation is dynamic, there are no simple rules of thumb or tactics that are eternal. The management of TB cross culturally requires a living system that can adapt with the target population as it adapts to the forces acting on it. It also requires a system that can educate and intervene in the culture of medicine and in the target community on both an individual and community level.
References
Barhnoorn F, Adriaanse H. In search of factors responsible for noncompliance among tuberculosis patients in Wardha District, India. Social Science Med 1992;34(3):291-306.
Brudney K, Dobkin J. A tale of two cities: tuberculosis control in Nicaragua and New York City. Seminars in Respiratory Infections 1991;6(4):261-227.
Carey JW, Oxtoby MJ, Nguyen LP, Huynh V, Morgan M, Jeffery M. Tuberculosis beliefs among recent Vietnamese refugees in New York State. Public Health Rep. 1997;112:66-72.
Etkind S, Boutotte J, Ford J, Singleton L, Nardell EA. Treating hard-to-treat tuberculosis patients in Massachusetts. Seminars in Respiratory Infections 1991;6(4):273-282.
Farmer P, Robin S, Ramilus SL, Kim JY. Tuberculosis, poverty and “compliance”: lessons from rural Haiti. Seminars in Respiratory Infections 1991; 6(4):254-260.
Gaudette LA, Ellis E. Tuberculosis in Canada: a focal disease requiring distant control strategies for different risk groups. Tubercle and Lung Disease 1993;74:244-253.
Jackson-Carrol LM, Graham E, Jackson JC. Beyond medical interpretation: the role of interpreter cultural mediators (ICMs) in building bridges between ethnic communities and health institutions. Community House Calls. Seattle, WA, 1995.
Jucovy PM. Developing a critical model for diagnostic language. Proceeding Medcomp ’82-first IEEE Computer Society International Conference on Medical Computer Science/Computational Medicine, September 1982:465-489.
Mata JI. Integrating the client’s perspective in planning a tuberculosis education and treatment program in Honduras. Medical Anthropology 1985; Winter:57-64.
Nachman SR. Wasted Lives: Tuberculosis and Other Health Risks of Being Haitian in a U.S. Detention Camp. Medical Anthropology Quarterly 1993;7(3):227-259/
Nichter M. Illness semantics and international health: the weak lungs/TB complex in the Philippines. Soc Sci Med 1994;38,5:649-663.
Nichter M. Acute respiratory illness; popular health culture and mother’s knowledge in the Philippines. Medical Anthropology 1994;15:353-375.
Ridout M, Menzies R. Factors affecting compliance with preventive treatment for tuberculosis at Mistassini Lake, Quebec, Canada. Clin Invest Med 1994;17(1):31-36.
Rubel AJ, Garro LC. Social and cultural factors in the successful control of tuberculosis. Public Health Reports 1992;107(6):626-636.
Secrest L, Fay TL, Hafeez Zaida SM. Problems of translation in cross-cultural research. Journal of Cross-Cultural Psychology 1972;3,1:41-56.
Shimada J, Jackson JC, Goldstein E, Buchwald D. “Strong Medicine”: Cambodian views of medicine and medical compliance. Jour Gen Int Med 1995;10:369-374.
Sumartojo E. When tuberculosis treatment fails. A social behavioral account of patient adherence. Am Rev Respir Dis. 1993;147:1311-20.
Thai D-Q, Buchwald D, Hooton TA. Medical Knowledge and Familiarity with Western Medicine Among Southeast Asian Refugees. Unpublished Thesis, 1993.
Vecchiato NL. Sociocultural aspects of tuberculosis control in Ethiopia. Med Anthropol Q. 1997;11:183-201.
Waitzkin H. The Second Sickness: Contraditions of Capitalist Health Care. Free Press 1983, New York, NY.