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TB Notes 2, 2002

Update from the Research and Evaluation Branch

Anthropological Contributions 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 the findings.

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 factors.

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.

Program structure

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 Kuwahara, MPH
Division of TB Elimination


Released October 2008
Centers for Disease Control and Prevention
National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention
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