TB Notes Newsletter
No. 2, 2005
Updates from the Clinical and Health Systems Research
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
Atlanta, GA (n=50)
Denver, CO (n=50)
Boston, MA (n=50)
Lao Hmong (n=24)
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,
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
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
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
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
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,
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
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 (firstname.lastname@example.org)
or Robin Shrestha-Kuwahara (email@example.com).
Submitted by Heather Joseph, MPH
Div of TB Elimination