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U.S. Department of Health and Human Services

  

TB Notes Newsletter

No. 2, 2005

Updates from the Clinical and Health Systems Research Branch

Kab Mob Nstws: “Insects get inside of you and eat your lungs”– Findings from an Ethnographic Study of the Hmong

In 2003, the Health Systems Research Team in DTBE’s Clinical and Health Systems Research Branch (CHSRB) undertook a study to describe ethnographic aspects of the increasing burden of TB among foreign-born populations in the United States. The purpose was to provide TB programs with information from formative research that may be useful in planning interventions, evaluating programs to improve screening and treatment adherence, and designing future surveys.

Atlanta, GA (n=50)

Minneapolis-St. Paul, MN (n=50)

Denver, CO (n=50)

Boston, MA (n=50)

Mexico (n=24)

Lao Hmong (n=24)

Mexico (n=26)

Vietnamese (n=24)

Somalia (n=26)

Somalia (n=26)

Vietnamese (n=24)

Chinese (n=26)

A qualitative, ethnographic approach was applied to elicit attitudes and beliefs about TB among five different foreign-born groups. To generate a range of responses, both persons who had received local TB services and those who had not were recruited.  Bicultural, bilingual researchers conducted 200 interviews in the study participants’ native language or in English. Persons born in Mexico, Somalia, Vietnam, Laos (Hmong), and China were recruited in four cities: Atlanta, GA; St. Paul-Minneapolis, MN; Denver, CO; and Boston, MA.    

The study’s outcomes include site-specific recommendations, a field-tested cultural assessment tool, and five ethnographic profiles.

In order to assist in response to the recent outbreak of TB cases among Hmong refugees resettled in the United States, our study team, with the approval of the Minnesota study site, decided to share implications from the study findings regarding the Hmong through TB Notes. The following suggestions, based upon interviews with 24 respondents, may be of use to TB programs accommodating Hmong clients.

Build on individual’s basic knowledge about TB and target education to improve understanding of transmission.
Generally, Hmong respondents possessed basic knowledge about TB and its symptoms, but understanding about transmission was somewhat less consistent.  Besides airborne transmission, other commonly mentioned mechanisms included dirty food, fluid imbalance, exchange of body fluids, or some supernatural cause, such as a curse. Understanding was often multifaceted and included a concept of person-to-person transmission coupled with other means. Educational messages targeted to the Hmong community should reinforce accurate information about TB transmission, but also clarify how TB is NOT transmitted.

Emphasize the risk of past exposure and that prevention is available.
In general, Hmong respondents lacked a solid understanding about TB prevention; less than half believed it was possible to prevent TB. While discussing prevention, respondents never mentioned LTBI treatment and only one referred to the BCG vaccine. Hmong respondents were also unable to name risk factors for TB, such as living in an endemic area. Respondents believed that a clean environment and healthy lifestyle in the United States meant they were at little risk. To address these misperceptions, educational messages should emphasize that their increased risk stems largely from exposure in their country of birth or in refugee camps. Emphasis should also be placed on developing messages to clearly explain how TB disease can be prevented in persons with a positive TB skin test reaction.

Be aware that some individuals may believe that TB has spiritual dimensions.
While most Hmong respondents understood TB to have a natural cause, the idea that God or spirits might also play a role was evident throughout several of the interviews. From these respondents, it appears simplistic to assume that notions of disease causation among the Hmong must be either supernatural or natural.  Similarly, folk etiologies, such as fluid imbalance, may be accepted in conjunction with biomedical explanations to define, explain, and categorize TB. This idea may be relevant when discussing prognosis and treatment options with Hmong clients; however, there is no evidence suggesting it is a barrier to screening or treatment.

Clearly explain an LTBI diagnosis, distinguishing it from a TB diagnosis, and recognize that barriers to accepting and completing treatment are often not cultural in origin.
The interviews allowed respondents to discuss LTBI or TB without forcing the distinction between the two. Upon asking LTBI patients about their understanding of the diagnosis, a great deal of confusion was revealed, with many interpreting their diagnosis as the health care worker’s (HCW’s) inability to make a firm diagnosis. In this context, respondents criticized HCWs for sending inconsistent messages about their status and the need for treatment. This common experience resulted in loss of confidence in providers, in uncertainty about the need for treatment, and, ultimately, in diminished adherence. Hmong respondents explained that having a clear understanding of the need for LTBI medications would have reduced their anxiety about the diagnosis and made taking the medications easier. It is thus recommended to verify that LTBI patients have an adequate understanding of their LTBI diagnosis by having clients repeat back in their own words what they have understood. Other common reasons for nonadherence or difficulties with LTBI treatment were similar to those experienced by non-Hmong TB patients, and were related to side effects or trouble remembering to take medications daily.

Recognize and address the detrimental effect of mistrust of providers and of information relayed to Hmong clients.
One theme that significantly complicated some Hmong respondents’ ideas about TB was a distrust of information they were given in the United States. While mistrust was voiced by only some respondents, they had very strong sentiments that emerged repeatedly throughout the interview. Specifically, respondents asserted that TB did not exist and that U.S. physicians invented the disease to either conduct experiments on the Hmong or make money on “phony” treatments. Not surprisingly, this distrust influenced some respondents’ decisions not to adhere to LTBI treatment.

Gauging a client’s degree of comfort with his or her medical provider and with the prescribed treatment is important. Relying on linguistically and culturally appropriate as well as gender-matched peer educators to communicate important messages about TB and treatment would be a valuable practice.

Use bilingual, bicultural interpreters.
Enhancing access to effective services begins with the removal of linguistic barriers. Non-English speaking respondents reported that HCWs talked to them in English despite their inability to understand. Furthermore, respondents commented that they wanted to interact with Hmong staff who could not only interpret effectively but also understand and respect Hmong traditions and social norms.

Recognize the emotional distress that may accompany a TB diagnosis.
Stigma surrounding TB was apparent throughout the Hmong interviews.  Findings indicate that Hmong persons may associate TB with an immoral, unclean lifestyle. It was reported that in Laos, stigma and lack of access to care meant a person with TB would suffer social isolation and death. However, in the United States, where treatment is known to exist, delays in care-seeking were considered less likely. Nonetheless, respondents often felt that the ramifications would be more emotional than physical if they were to develop TB in the United States.

Concerns about social seclusion, which was described equally as self- and community-imposed, could be addressed with community and client education (e.g., by communicating clearly that isolation during treatment is necessary only for a limited period). Further, emphasizing community outreach messages about the TB clinic’s strict confidentiality policies may also diminish some concerns about social rejection and reinforce the clinic’s trustworthiness. Minimizing opportunities for others in the waiting area to overhear client-staff discussions about TB will also contribute to the community’s faith in the clinic’s maintenance of confidentiality.

Assess each client’s desire for information about TB and tailor education.
Less than half of the Hmong sample wanted additional TB information. This stemmed from a common idea that elderly Hmong are incapable of learning new information. It was often reported that when HCWs provided information, written materials were thrown away or the oral discussion was given scant attention because it was considered impossible to understand – even in the Hmong language. The desire to learn more seemed to increase with English-speaking ability and literacy. Before HCWs attempt to provide education to Hmong clients, especially the elderly, they should first assess the client’s desire and capacity to acquire more information and the preferred format (e.g., discussion, pamphlets, and videos). When possible, provide information in a tailored format that maximizes the client’s understanding. Because English and Hmong illiteracy is common in the Hmong community, relying primarily on written materials is not recommended.

Avoid making assumptions about a person’s attitudes, beliefs, and behaviors.
The results from this study suggest that while there are some patterns of TB understanding and attitudes, there was plenty of diversity as well. Evidence from this study suggests that English-speaking ability and literacy, age, and educational attainment may affect some beliefs and attitudes about TB. As a whole, these findings imply that each client should be understood as an individual living in a cultural environment. Although this article suggests some areas for the HCW to explore with Hmong clients, it remains the obligation of the HCW to gauge each client’s knowledge, beliefs and attitudes, recognizing that these may influence TB care-seeking and medication-taking behavior.

In closing, the study investigators are conducting further analysis of the data for the other four foreign-born groups. The team is also developing ethnographic profiles for each group, which will be made available to TB program staff upon completion. If you would like more information about this study or its findings, please contact Heather Joseph (hbj7@cdc.gov) or Robin Shrestha-Kuwahara (rbk5@cdc.gov).

Submitted by Heather Joseph, MPH
Div of TB Elimination

 


Released October 2008
Centers for Disease Control and Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
Division of Tuberculosis Elimination - http://www.cdc.gov/tb

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