>>Public health researcher tackles stigma of tuberculosis in Haitian populations

 

 

-- Dr. Coreil (far right) with the Haiti TB Project Team--

 

By Susan James

 

Tampa, FL (August 8, 2006) -- Jeannine Coreil, PhD, professor chair of Community and Family Health at the USF College of Public Health, has been working with Hôpital Ste. Croix in Haiti for the last 10 years on cultural factors and infectious diseases.  Her latest research explores the social stigma surrounding tuberculosis (TB).  Unfortunately, stigma undermines progress in controlling the disease and in reducing TB’s disabling impact on those suffering.  This current research is funded by the National Institutes of Health, Fogarty International Center, for $725,698 for four years to June, 2007.

 

Tuberculosis is a public health problem of global magnitude-- 1,693,000 deaths in 2004 and 8,918,000 new cases worldwide, according to the World Health Organization.  In the United States its victims are primarily the poor, immigrants and persons with AIDS.  Efforts to control the disease have been severely handicapped by the effects of stigma, (“I don’t want to be labelled!”) and further compounded by issues of race, social class, ethnic stereotypes, immigrant status and HIV coinfection.  In this study Dr. Coreil is investigating the social dynamics of stigma in TB with two populations — Haitians in the U.S. and in Haiti. The active tuberculosis rate among Haitians is 120 per 100,000 in Florida and 350 per 100,000 in Haiti, according to Dr. Coreil.

 

The study is also comparing the effects of the two countries’ political-economic context on TB stigma.   “Social context is key to understanding how stigma works, and therefore how you, as a health provider, deal with the disease and the people,”  Dr. Coreil said.

 

So far, the findings reveal a stark reality — Haitians coming to Florida are wary of TB testing, because they feel labelled as TB immigrants.  The label and stigma can yield policies and a culture unwelcoming to immigrants because of this disease risk.  As one immigrant stated, “…depi l gen yon maladi li pè di, li pè pou lòt moun pa konnen li, paske pou yo pa di se Ayiti, se Ayiti ki vin ak maladi a .  Depi yo te fin di Ayiti, maladi sida se Ayiti li soti a.  Dapre mwen sa vin enfekte eta Ayisyen tou le l vin gen yon maladi.”  (When [a Haitian] gets sick, he is afraid to disclose it.  He doesn’t want others to find out and blame it on Haiti that all these diseases come from Haiti.  Ever since they said AIDS came from Haiti, in my opinion this has affected the Haitian mentality, every time someone gets sick.)

 

In Haiti, the response is more economic -- those with the disease feel labelled as poor. One Haitian commented, “Wi sa fe fanmi an depanse lajan, si-l pa gen ase lajan, malad la pap trete, l’ap mouri.” (Yes, it [the illness] requires the family to spend a lot of money.  If they have no money, the sick person will not receive treatment, and they will die.)   In fact, the poorest are most vulnerable to the disease, given such factors as malnutrition, limited housing and income needed to purchase medications.

 

-- At Hospital Ste. Croix, Haiti--

 

The study looks at institutional practices surrounding TB services — how these services are publicized, organized, and delivered, and the patients’ experiences with these.  Unfortunately “structural stigma” (how such services operate) can unintentially reinforce stigma that in turn prevents patients from facing their disease and following the rigid medication regimen required.  Therefore, the study results will help researchers understand the role of this social context on stigma, and help improve how clinics manage illness.

Latent Tuberculosis

This study  is also finding the differences in the stigma for those with the active disease compared to latent infection (a major problem), and will measure how stigma impacts people practicing preventive measures. Little is known about their adherence to preventive therapy for TB, since those afflicted do not experience any symptoms.  Only through testing (for example, to meet employment or immigration requirements) do such cases become known.  And without symptoms, people are much less motivated to take daily medication methodically for months, especially when there are many other demands on time and money.

Dr. Coreil uses cultural epidemiology in an interactive quantitative-qualitative approach to help measure illness concepts and behavior.  This approach combines the strengths of ethnography with traditional epidemiologic research. Her team has conducted an ethnography of TB stigma, beginning a cross-cultural epidemiologic study and a community trial of adherence to preventive therapy.  The researchers are focusing their study in Broward and Palm Beach Counties, Florida and Leogane, Haiti.  The methodology has been tested and refined in a broad range of geographic settings and illness problems, including tuberculosis.  Parallel cultural epidemiologic studies of illness-related stigma are underway in several other countries. “This will provide a great opportunity to integrate the Haitian study with a larger, multi-country collaboration,“ Dr. Coreil said.

Vicious Cycle

Dr. Coreil commented on several dilemmas facing the team. One Catch 22 is that as the researchers study the social stigma of TB, this can inadvertently reinforce the sense that something is “wrong” about having TB.  “The challenge is to meet the needs of those with TB without reinforcing the stereotype and stigma, “ she explained.   In addition, by targeting Haitians, the team runs the risk of reinforcing the image that Haitians are high-risk groups, and potentially increasing American fear of immigration.  She is very sensitive to these dilemmas, and the team has worked hard to avoid unnecessarily adding to the problem of stigmatization.

Another problem has been the scale of Haiti’s socioeconomic and political problems.  “This has created severe obstacles for project implementation and management,” Dr. Coreil said, given the U.S. State Department advisory against travel there.  The needs in Haiti are so drastic, “it is hard to justify doing research that can help in the long term when the absolute poverty and upheaval are so blatant,” she added.  Still, by breaking through the potency of stigma, she may provide the key to reversing the mounting TB statistics/trend, by helping the victims get the treatment they need without fear.

Dr. Coreil, who was reared in Louisiana, has been working in Haiti for the last 30 years on projects related to maternal and child health, HIV/AIDS, and tropical diseases.  Her Louisiana French background helped her to learn Haitian Creole. “While the work has been immensely rewarding,” she said, “the current challenges of implementing controlled studies in that setting are almost insurmountable.”  After completing the stigma study, she plans to focus her research program in other areas.

 

 

- USF Health -

 

USF Health is the University of South Florida's enterprise of researchers, teachers and clinicians dedicated to improving the full continuum of health. Its core is the colleges of Public Health, Nursing and Medicine, including a School of Physical Therapy, as well as the healthcare delivered by its 450 physicians and more than 100 nurse practitioners. In partnership with its affiliated hospitals, USF Health's research funding last year was $134 million -- more than half of which came from federal sources. Last year, USF health clinicians cared for more than 31,000 patients and oversaw 396,000 outpatient visits.