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TB Notes 2, 2002
Update from the Research and Evaluation Branch
to TB Research and Control
Last winter, at the request of other anthropologists at CDC, Robin
Shrestha Kuwahara and Maureen Wilce of the Prevention Effectiveness
Section, Research and Evaluation Branch (REB), DTBE, began drafting
a chapter on TB for the multivolume Encyclopedia of Medical Anthropology.
The chapter identifies important anthropological and social science
contributions to our understanding of the behavioral issues pertinent
to the control of global TB. Anthropology, like other social sciences,
examines issues from the perspectives of the individual and community.
Through methods such as case studies, ethnographies, discourse analysis,
participant observation, and in-depth interviews, anthropologists
have examined the interplay among the biologic, psychologic, sociocultural,
socioeconomic, and structural factors that affect TB-related behaviors.
Their work has provided new insight into the understanding of the
dynamics of TB transmission.
To write this chapter, Robin and Maureen conducted a review of
over 200 articles published between 1966 and the present, with help
from ASPH fellow Heather Joseph and Drs. James Carey, Esther Sumartojo
(Division of HIV/AIDS Prevention), and Rebecca Plank (former REB
assistant). The review shows that research into the social and cultural
context in which TB programs exist has focused on a relatively small
number of cultures, limiting our understanding of how external factors
may influence behavior. Nevertheless, the published social science
research provides valuable information on key issues affecting patient
outcomes. Issues related to care-seeking behaviors, adherence to
treatment, stigma, program structure, and patient-provider relationships
are particularly important to TB control. Following are some of
Understanding care-seeking behaviors
The wide body of research surrounding care-seeking behavior demonstrates
that the issues are multilayered and complex. For example, understanding
how people interpret TB causes and symptoms helps providers understand
why people may delay seeking treatment. In Thailand, research indicates
that some people, associating their TB symptoms with HIV/AIDS, delayed
seeking treatment for fear of having AIDS. In Kenya, patients attributed
TB to causes such as a hereditary predisposition, consumption of
alcohol or tobacco, or witchcraft, which often resulted in delayed
care seeking. Recent work in the Philippines shows that many patients
linked TB to drinking or smoking and, thus, delayed seeking treatment
for “harmless” symptoms.
Cultural beliefs about the causes of TB may influence how people
treat their symptoms. In Ethiopia, interview respondents believed
TB and all other diseases were generally caused by imbalances in
behaviors or diet, and were best treated by herbal remedies and
“good” foods. Another study found that the Xhosa-speaking people
of South Africa often associated TB with a lack of hygiene and witchcraft,
specifically the lightning bird, impundulu, and sought care
first from a diviner. Only when traditional treatment failed did
they seek Western medicine.
In industrialized nations, researchers have conducted numerous
qualitative studies on the health behaviors of immigrant and refugee
groups. Concern for family among Latino immigrants to the United
States was found to motivate people to seek care and adhere to treatment.
For Latinos in California, while trust in clinical practices and
social connections facilitated treatment adherence, access issues
most affected care seeking. Similarly, the presence of social support
reduced TB incidence among foreign-born persons in Massachusetts;
however, economic and social disadvantages often outweighed protective
Understanding treatment adherence
The issue of nonadherence to TB medications has frequently been
examined. Although the varied approaches and methodologies have
yielded a wide range of findings, no predominant pattern has emerged.
Many social scientists have identified patient health beliefs or
health cultures as the main “cause” of nonadherence. However, other
social scientists see the issue of nonadherence stemming from complex
factors both within and beyond the patients’ control. These factors
include patients’ confusion about the implications of symptoms,
social stigma, perception of services and providers, costs of transportation,
the high cost of medications, and service delivery problems.
Research in India found a high default rate despite high levels
of patient knowledge and care seeking. In rural Haiti, while many
patients accepted sorcery as a possible cause for TB, their beliefs
had no impact on adherence with biomedical regimens. Similarly,
high rates of adherence were found among migrant farm workers, regardless
of whether they attributed their symptoms to biomedical causes or
“folk illnesses.” In Tanzania, researchers found no connection between
knowledge of TB and completion of treatment.
Considering the vast inequities that persist throughout the world,
some social scientists assert that individuals who do not adhere
to therapy are probably the ones least able to adhere, and that
focusing solely on the sociocultural dimensions of adherence is
too short-sighted. In an investigation of factors affecting medication-taking
behavior in central India, it was found that three socioeconomic
variables, not cultural factors, were the strongest predictors of
adherence: a family’s per capita income, its monthly income, and
its type of house.
The impact of stigma
Few would disagree that the social stigma attached to TB occurs
universally. Numerous studies have shown patients’ denial or hesitation
to disclose their TB status to family or friends out of fear of
being socially ostracized. Researchers reported that of a group
of Vietnamese refugees studied in New York, 77% believed the community
would fear and avoid persons with TB. Fear of stigma among Mexican
immigrants in California caused TB patients to cease contact with
family and friends. Similarly, a study in Mexico reported that patients
blamed the social consequences of stigma for their long delays in
seeking care and poor treatment adherence. In Honduras, fear of
losing family and friends led some TB patients to report preferring
death to social rejection.
In societies where women occupy a lower status, feared social consequences
of a TB diagnosis may result in undertreatment and increased mortality.
Studies in India have shown that married women delay seeking treatment
or hide their diagnosis from their husbands out of fear of being
deserted. In Nepal, the low status of women and fear of social ostracism
hinder access to adequate TB care.
Provider behavior and service delivery
Social scientists have helped develop a more accurate understanding
of the determinants of patient outcomes by recognizing the influence
of provider behavior and the existence of biases and cultural gaps
between patients and providers. Studies have shown that, perhaps
unsurprisingly, patients respond positively to attention and encouragement.
A recent review of program-level interventions showed that program
success is frequently attributed to friendly patient-staff relationships
and staff competence. Conversely, a study in Colombia found that
providers had created an unfriendly clinic environment by stigmatizing
patients and then blamed the patients for failing to complete treatment.
In Israel, Ethiopian immigrants experienced condescension and paternalism
from physicians, which exacerbated patients’ hesitance to seek or
remain in care.
Studies have demonstrated a cultural gap between patients and providers
and strikingly different perceptions of barriers to adherence and
of the information exchanged. Such gaps, it has been theorized,
result in the use of poor information for policy planning. Moreover,
a lack of understanding of the cultural differences in attitudes
can diminish the trust between physician and patient. Fueling patients’
mistrust, major deficiencies have been found in appropriate physician
knowledge, attitudes, and practices in TB.
Although few scientists have examined the overall dynamics of the
sociopolitical and economic environment of TB, social scientists
have shown that program structure and systems organization can have
a major impact on TB care. For example, studies in Haiti have shown
that comprehensive health and social services can successfully reduce
mortality and drug resistance. In Mexico, policy interventions that
addressed structural barriers resulted in improved patient adherence.
Similarly, routine provision of a comprehensive array of individualized
services resulted in major decreases in TB cases in New York.
The need to integrate patient and community perspective in TB program
structure has also been illustrated. Further, economic studies have
shown the high financial burden TB places on families and the need
for assessing patient costs and acceptability when designing TB
programs. Social science research has helped highlight the effectiveness
of comprehensive health care systems that address the core issues
behind TB risk factors, such as overcrowding, malnutrition, and
limited access to health care services.
Current tools and future directions
Advances in understanding health cultures and the impact of health
systems have resulted in new tools and approaches that are improving
the quality of patient care and service delivery. In the area of
communication, anthropologists have developed practical tools to
enhance the quality of patient-provider interactions. A cultural
assessment interview tool developed by CDC anthropologists has helped
programs better understand their diverse patient populations. In
the United Kingdom, the discipline of “transcultural medicine” was
pioneered to help overcome providers’ ignorance of patients’ health
cultures and attitudes. Guides and recommendations have been developed
to heighten understanding of cross-cultural issues and improve the
quality of patient services.
Numerous theoretical models and methodologies have been developed
to better understand individual and interpersonal health behavior
and perspectives on organizational and community interventions.
Methodologies traditionally used in anthropological research have
yielded rich information regarding health beliefs and behaviors.
Social network methods have been recently adopted to improve the
effectiveness of TB contact investigations.
Anthropology and other social sciences have brought new perspectives
on an ancient disease. Recognizing the broader sociocultural dimensions
of TB, many social scientists stress the need to examine the structural
and operational barriers hindering the development and sustainability
of interventions. Critics of the purely cognitive or cultural explanations
point out that many ethnographic studies have demonstrated that
predictors of care-seeking, compliance, and treatment outcomes are
fundamentally economic and structural in nature. However, virtually
all social scientists encourage looking beyond the current biomedical
model of TB control toward a multidisciplinary research framework.
—Reported by Robin Shrestha
Division of TB Elimination