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Clinical Pearl: The Stigma of TB

Author(s): Tao Kwan-Gett, MD
Date Authored: June 01, 1998

It might be surprising for U.S. health care providers to learn that the social stigma of tuberculosis is powerful in many immigrant and refugee communities. In fact it wasn't so long ago when similar attitudes towards tuberculosis were common in American society. One California woman who contracted TB in the 1940's says, "You have to understand that 50 years ago, TB was like AIDS is today. There was no cure for what you had. People were afraid of it. They were afraid of you." 1 In one survey, three quarters of recently arrrived Vietnamese immigrants to New York said that community members would fear and avoid someone known to have TB. 2 The adverse social impact of tuberculosis has also been noted in Honduran and Hispanic communities. 3 For the Sidama people of Ethiopia, the word for tuberculosis is used as an insult. 4 In some cultures the stigma of tuberculosis remains as powerful as that of HIV. A recent Seattle Somali community focus group helped she some light on why the diagnosis of tuberculosis is so powerful in their culture.

From childhood Somali's learn that tuberculosis is a horrible disease that leads to social isolation. In many East African cultures, family and friends share food and eating utensils. One drinking cup may be used for a group of several people who are eating together. A family eats with their hands from a single plate of food. When a person becomes symptomatic from tuberculosis, he or she may fear that others will refuse to share food and drink. This fear of social isolation may lead the person to deny the true nature of the disease to himself or others. Furthermore, because anti-tuberculosis medicines were not available until recently (and even today remain expensive and difficult to obtain especially in rural areas) some may not realize that the disease is curable. Thus persons with chronic coughing may refuse to see health care providers for diagnosis and treatment, because if they are diagnosed with tuberculosis they may be forced to use their own cups and utensils, publicly signifying their illness. Even here in the U.S. within a family, those with TB infection may be given their own utensils while on INH prophylaxis.

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 would 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. Somali community members had the following specific recommendations for health care providers. These guidelines are helpful in working with 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.

References

  • Kelleher S. Tuberculosis: A Legacy of Fear. The Buffalo News. Buffalo; 1994: Lifestyles Page 3.
  • 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.
  • Sumartojo E. When tuberculosis treatment fails. A social behavioral account of patient adherence. Am Rev Respir Dis. 1993;147:1311-20.
  • Vecchiato NL. Sociocultural aspects of tuberculosis control in Ethiopia. Med Anthropol Q. 1997;11:183-201.