Interventions: Research on Reducing Stigma

Authors: Mitchell G. Weiss, M.D., Ph.D., and Jayashree Ramakrishna, Ph.D., M.P.H.

http://www.stigmaconference.nih.gov/abstracts/WeissAbstract.htm

Abstract

The term stigma has many associations and implications rooted in history, social science, and public health, but the historical concept of physical stigmata and the sociological framework of deviance and social interactions fall short of research needs for guiding desirable public health interventions to reduce stigma.  For that, a working definition of stigma is required that recognizes the distinctive features of particular diseases and particular social and cultural contexts.  Research needs include documenting the burden from the stigma of various health problems; comparing both the magnitude and character of stigma for different conditions and in different social and cultural settings; identifying distinctive features of stigma that may guide intervention programs; and evaluating changes in the magnitude and character of stigma over time and in response to interventions and social changes.  Such research benefits by examining stigma from various vantage points, considering the experience of stigma among persons with a designated health problem, laypersons in the community, and health care providers or other designated subgroups of the community (eg, teachers and policymakers) who have a substantial impact on health.  Research on stigma should also consider questions of social policy as they relate to human rights, access to health care, and social services for particular groups.  Our review of health research issues and studies considers the role of stigma in specific mental health problems and tropical diseases, mainly in low- and middle-income countries.  We also discuss the limitations of this research and the need for complementary quantitative, qualitative, problem-specific, and culture-specific approaches to study of stigma.

September 2001

Interventions: Research on Reducing Stigma

http://www.stigmaconference.nih.gov/WeissPaper.htm

Mitchell G. Weiss, M.D., Ph.D.

Professor and Head
Department of Public Health and Epidemiology
Swiss Tropical Institute
Socinstrasse 57
CH4002 Basel, Switzerland
E-Mail: Mitchell-G.Weiss@unibas.ch

and

Jayashree Ramakrishna, Ph.D., M.P.H.

Additional Professor and Head
Department of Health Education
National Institute of Mental Health and Neuro Sciences
Bangalore, India

August 2001

Abstract

The term stigma has many associations and implications rooted in history, social science, and public health, but the historical concept of physical stigmata and the sociological framework of deviance and social interactions fall short of research needs for guiding desirable public health interventions to reduce stigma. For that, a working definition of stigma is required that recognizes the distinctive features of particular diseases and particular social and cultural contexts. Research needs include documenting the burden from the stigma of various health problems; comparing both the magnitude and character of stigma for different conditions and in different social and cultural settings; identifying distinctive features of stigma that may guide intervention programs; and evaluating changes in the magnitude and character of stigma over time and in response to interventions and social changes. Such research benefits by examining stigma from various vantage points, considering the experience of stigma among persons with a designated health problem, laypersons in the community, and health care providers or other designated subgroups of the community (eg, teachers and policymakers) who have a substantial impact on health. Research on stigma should also consider questions of social policy as they relate to human rights, access to health care, and social services for particular groups. Our review of health research issues and studies considers the role of stigma in specific mental health problems and tropical diseases, mainly in low- and middle-income countries. We also discuss the limitations of this research and the need for complementary quantitative, qualitative, problem-specific, and culture-specific approaches to study of stigma.

Interventions: Research on Reducing Stigma

The topic of stigma represents a broad set of interests and specifies a field of study that, without critical rethinking, may in fact be too broad to contribute as much as we expect to public health. In this paper we examine a conceptual framework for research on stigma with a focus on health research and particular attention to selected health problems for which stigma is a major concern in low- and middle-income countries. A critical review of the formulation of stigma as a topic for social research helps to identify strengths and limitations of the concept as we consider how it may be adapted and applied to questions of practical interest in public health and clinical practice. Because so little attention has been given to consideration of how the concept--as distinct from the impact--of stigma applies to public health, especially with respect to the stigmatizing diseases of low- and middle-income countries, we begin with discussion of a few key points from the seminal contribution of the sociologist, Erving Goffman.

Considering its enduring influence on the field after nearly four decades, Goffman's (1963) treatise may be regarded as something akin to a canonical text for students of stigma. As we consider its relevance for public health, however, it is important to recognize that it was conceived as a contribution from a specialist in social interaction to social science theory and not as an applied work, even though many of its insights may stimulate and inform applications. In the subtitle, "Notes on the management of spoiled identity," management means something different from the kind of management that managers and policymakers take as their responsibility; it refers to the ways that people in society manage themselves in the course of social interactions.

In searching for fundamental principles to explain this aspect of social process, Goffman took on a very broad agenda. His gloss of the term stigma at the outset, as "the situation of the individual who is disqualified from full social acceptance," indicated the immense scope of the topic he had in mind. The variety of conditions that may elicit adverse social judgments is essentially limitless, and the field of stigma studies maintains this broad agenda. A recent book, for example, indicates the range of persisting sociological interests; Falk (2001) identifies women, the mentally challenged, homosexuals, single people, prostitutes, African-Americans, the overweight, and even successful people, among others, in his elaboration of stigma. Daunted by the diversity of stigmatized conditions and the "vague and uncritical" conceptualization and use of the term to characterize such a diverse group of social phenomena, some authors have advised caution in approaching the study of stigma (Stafford and Scott 1986).

In reflecting on the topic, Goffman himself recognized the inherent problem of efforts to extract a commonality from the diverse considerations that attract stigma. He also hesitated (though not for long) to use the term deviance to characterize the common feature of stigmatized people and groups. "It is remarkable," he wrote, "that those who live around the social sciences have so quickly become comfortable in using the term 'deviant', as if those to whom the term is applied have enough in common so that significant things can be said about them as a whole" (Goffman, 1963, p. 167n). Although Goffman concluded that sufficient common features justified study of stigma with reference to diverse groups, he also recommended studying how they differ. This is an especially important consideration for health researchers whose interests reside not so much in developing sociological theories of stigma, but rather in a practical appreciation of the impact of stigma and how it operates with reference to particular health problems and in particular settings .

Why health research is concerned with stigma

Stigma is an important consideration for health policy and clinical practice for several reasons. It contributes to the suffering from illness in various ways, and it may delay appropriate help-seeking or terminate treatment for treatable health problems. For diseases and disorders that are highly stigmatized, the impact of the meaning of the disease may be as great or a greater source of suffering than symptoms of a disease. An early presentations of paucibacillary leprosy as a painless depigmented or anaesthetic patch is an example. Hearing the diagnosis is more troubling than symptoms of the disease. Social science studies of stigma regard it fundamentally as a problem arising from social interactions. Goffman and other researchers have also recognized self-perceived stigma, which may also be troubling and responsible for diminished self-esteem whether or not it arises from an actual interaction, and whether or not this perceived stigma accurately reflects the critical views of others. Stigma impairs the quality of life through concerns about disclosure, and it affects work, education, marriage, and family life. Although its impact is likely to be overlooked in the calculation of Disability-adjusted life-years (DALYs), stigma contributes to what WHO's Nations for Mental health Program calls the hidden burden of mental illness. In addition to the suffering it brings, research also shows that stigma and labelling may affect the course of recovery (Link et al., 1991; Wahl 1999)

The stigmatization of HIV/AIDS and specific groups at risk, such as men who have sex with men and illicit drug users, interferes with voluntary testing, counselling and treatment. Timely treatment may benefit the individual and society, inasmuch as it reduces suffering and it improves health and productivity (Chesney and Smith, 1999). The distasteful prospect of having a stigmatized condition, which is further associated with stigmatized status in society, may be an inducement to ignore it and forego the kind of help that one might readily acknowledge as useful if the condition were affecting someone else. Although denial may relieve the anxiety that follows from stigma, denial is a problem when a treatable condition remains untreated and progresses to cause avoidable suffering. Leprosy, which has long been the gold standard of stigmatized diseases, may progress to preventable deformities. Tuberculosis not only becomes more serious for the infected individual, but also poses a threat for contacts and further spread. People with untreated mental health problems may endure an avoidable progression of symptoms that may also make their condition more difficult to treat. For chronic diseases that require a long course of treatment, or chronic treatment for epilepsy, stigma constitutes an obstacle to remaining in treatment.

Rethinking stigma for health research

In formulating a useful concept for public health, it is important to identify the distinguishing features of stigma that are amenable to study and which may guide policy for managing and reducing the impact of stigma. Elements of Goffman's concept of spoiled identity and features of exclusionary and rejecting social process that are elements of the classical theory remain relevant. To clarify the interests of health research on stigma, we propose consideration of the following working definition, which supports the premise that health policy and research is concerned with managing stigma by eliminating, minimizing or effectively coping with it. We hope that in the context of this background paper, such a formulation may prove useful in refining the intent of research:

Stigma is a social process or related personal experience characterized by exclusion, rejection, blame, or devaluation that results from an adverse social judgment about a person or group. The judgment is based on an enduring feature of identity attributable to a health problem or health-related condition, and this judgment is in some essential way medically unwarranted. In addition to its application to persons or a group, the discriminatory social judgment may also be applied to the disease or designated health problem itself with repercussions in social and health policy. Other forms of stigma, which result from adverse social judgments about enduring features of identity apart from health-related conditions, may also affect health; these are matters of broader interest in the study of stigma and for social and health research.

It is important to note that efforts to distinguish stigmatizing behavior from appropriate precautions for some health problems may involve consideration of a delicate balance of public health risks and justifiable restrictive or exclusionary treatment or policy, based on compelling medical and epidemiological evidence. Though exclusionary, such behavior is not attributable to what we mean by stigma as the term is understood in the context of public health. For example, measures to protect health personnel from actively infectious patients with tuberculosis may be appropriate even though the same behaviors would be stigmatizing after treatment has begun and such risk eliminated. On the other hand, health personnel avoiding contact with patients treated for leprosy who are no longer infectious is indeed stigmatizing, inasmuch as such behaviour suggests that a conflicting social judgment has inappropriately overridden a medical judgment. Research is concerned with the questions of how much risk there may actually be to the individual and to others, and how effective or counterproductive any exclusionary measures to deal with that risk actually are.

It is also important to note that health research studies of stigma should recognize that the nature of the "exclusion, rejection, blame, or devaluation" and the manifestations of the adverse social judgments are likely to vary as they apply to different health problems. For example, isolation of a patient with acute immune suppression may be seen in a positive. In formulating objectives and methods for stigma research, the investigator should identify the particular features of the health problem that require attention and motivate study. In this regard, the interests of health studies of stigma differ from social research on stigma, which is more concerned with the broader social theory than the practical application.

Furthermore, one should also recognize that the nature of stigma may vary in different cultures; these cultural differences affect both what is stigmatized and how stigma is manifest. Although some authors have acknowledged differences in what is stigmatized from one setting to another (Becker and Arnold, 1986), less has been written about cultural differences in the articulation of the adverse social judgments that are an essential feature of our formulation of stigma for public health. Studies of the magnitude and nature of stigma need to account for both the disease-specific and culture-specific aspects of stigma. This means that classical approaches to epidemiological research must be modified. A single scale or instrument is likely to be inadequate to fulfill the needs for disease-specific and culture-specific studies of stigma. Cultural epidemiological approaches provide an approach for attending to local concepts and categories with anthropological and epidemiological methods that include quantitative and qualitative assessments (Weiss 2001).

Research on AIDS-related stigma in the United States has produced an action-oriented conceptual framework for research and a multi-pronged agenda for reducing this stigma. The focus on disease-specific and culture-specific features of HIV/AIDS in the United States is impressive and instructive. A special issue of the journal American Behavioral Scientist (April 1999) reviews the various aspects of the topic in a series of papers that originated in an NIMH workshop developing a conceptual framework specifically for dealing with AIDS-related stigma in the United States (NIMH 1996). Topics included an overview of AIDS and stigma (Herek 1999), the interaction of AIDS stigma and sexual prejudice (Herek and Capitanio 1999), the impact of policy and law on people with HIV/AIDS (Burris 1999), and others.

The strength of this work in demonstrating the value of disease and culture specificity for an action agenda is also its weakness for direct application of the conceptual framework to the particular issues concerning stigma for other diseases in the vastly different settings of low- and middle-income countries. Nevertheless, this work provides a framework for critique and illustrates how such an agenda can be linked effectively to context.

Priority of stigma for infectious diseases in low and middle-income countries

The importance of considering the role of stigma in research for control of tropical diseases has been widely acknowledged. Among them, no disease has been more closely associated as a metaphor for stigma than leprosy. Although the WHO Special Programme for Research and Training in Tropical Diseases (TDR) has been concerned with the impact of stigma for various diseases leprosy is the only TDR disease for which explicit and exclusive studies of stigma have been supported (Boonmongkon 1994; Paz et al., 1990). Like HIV/AIDS, the motivation for examining the stigma of leprosy has been to help manage the social exclusion, the emotional suffering, and the barriers to effective health care that follow from local cultural meanings of the disease.

Consideration of the impact of stigma explains some paradoxical preferences in the utilization of health services. Although the availability of nearby health facilities is usually considered an indication of their accessibility and responsive to needs, services for leprosy may be too close for comfort because of their visibility. The preference for more distant services has been documented in Nepal (Pearson, 1988), and the director of a large NGO in Ahmedabad, India, has observed a similar preference for more distant facilities among patients seeking treatment for TB (M. Uplekar, personal communication).

Stigmatizing cultural meanings have a serious impact on the illness experience, help seeking, and treatment adherence for tuberculosis in other ways as well. In Southeast Asia stigma of TB is enhanced by association of TB with AIDS, and this has been shown to contribute to treatment delay for tuberculosis in an HIV high endemic area of Thailand (Ngamvithayapong et al., 2000). TB-related stigma, however, is a matter of much broader significance than just its association with AIDS. From research in Thailand, Johansson and colleagues (1999) distinguish two forms of stigma, based on social discrimination and on fears arising from self-perceived stigma. A community resident they quoted in reporting this research advised, "TB treatment takes a long time, and if people keep away from the sick person it will cause a lot of harm to go on with treatment" (p.865). The impact of TB stigma has also been emphasized in recent reports from low- and middle-income countries in other parts of the world, including West Africa (Lawn 2000) and East Africa (Liefooghe et al 1997).

The potential for resistance, which increases when control measures fail, makes TB control an ever more important goal. With increasing evidence of the effectiveness of directly observed treatment (DOT) programs, however, has also come questions about their appeal and acceptability. Why do substantial numbers reject them? In a recent study in the Pathanamthittha District of Kerala, Balasubramanian and colleagues (2000) reported that about 25% of women refused to enter treatment in a DOTS program because of concerns about confidentiality. Another study of social stigma in rural Pune District of Maharashtra showed that stigma interferes not just with participation in DOTS, but more generally with timely help seeking for TB. Morankar and colleagues (2000) found that 38 of the 80 patients they studied (40 men and 40 women) took measures to hide their disease from the community. Social vulnerability contributed to women's reticence to disclose TB, and such women were typically widows or married and living in joint families. Both women and men who hid their disease sought treatment later than others of their respective sex who did not; being female contributed to the delay, and women who hid their disease sought treatment later than men who did not. Such questions about the effects of gender on TB have recently motivated TDR support of a multi-country study in Colombia, Malawi, India, and Bangladesh, in which quantitative and qualitative assessments of stigma play an important role.

Other TDR studies have considered the stigma that comes from the intense itching and socially undesirable scratching caused by onchocercal skin diseases. The itching is severe enough that some people report considering suicide. With the availability of ivermectin for annual treatment to control the disease in affected village communities of 16 endemic African countries, the question arose about whether the disease was a serious enough priority to justify mobilizing the resources needed to reach these people. Studies of illness experience also examined the stigma of the disease, and by documenting its role in the burden, findings helped substantially to motivate the establishment of the African Programme for Onchocerciasis Control (Pan-African Study Group, 1995). In this case management of stigma was tackled by enhancing efforts to control and eliminate the disease.

Research Objectives

Recognizing the particular needs for research on stigma in the context of international health in low- and middle-income countries, several objectives should be considered. The broad aims are practical, maintaining a focus on how to recognize and reduce the adverse impact of stigma through public health policy and in clinical practice.

1. Document the burden from the stigma of various health problems

Appropriate indicators for a descriptive account of stigma, which may also by suitable for scales that further facilitate comparisons and analysis, are needed to characterize the role of stigma for particular health problems. Such data indicates the priority of stigma for health policy and for training curricula of health care personnel to minimize stigma in society at large and within health systems.

Qualitative, in-depth narrative accounts are needed to develop queries, scales, and instruments at the outset, so that larger scale quantitative assessments address relevant issues. Qualitative and narrative accounts that complement survey data and elaborate features of stigma are needed to clarify the nature of the burden and indicate particular ways to deal with it. Wahl's (1999) study of mental illness provides an example of the effective use of qualitative data to clarify concerns about stigma identified in a survey.

2. Compare stigma for different health problems and in different settings

The distinctive features of various health problems, cultural data, and anthropological considerations indicate the need for comparative research. Health programs benefit from a comparative account of the role of stigma for different disorders in the same setting. It is also useful to see how stigma for the same disorders varies across treatment sites (eg, government and private allopathic services and various other kinds of health care facilities). Regional and cultural comparisons indicate how stigma operates in particular settings and provide opportunities to learn from experience at other sites confronting similar problems. Qualitative data play a key role in such comparisons.

3. Identify determinants of stigma and the impact of stigma on other health policy priorities

Key indicators of stigma and scales that provide an overall assessment may be studied analytically to answer questions and test hypotheses about the determinants and impact of stigma. An operational formulation and methods for assessing stigma should be used to examine how it influences outcomes of practical significance to public health and clinical practice. Various hypothesized effects of stigma suitable for study may include the lag time to first help seeking, treatment dropout, treatment response, and so forth. When a relationship is identified, analysis of qualitative data enables the research to determine not only the existence of a relationship based on analysis of quantitative variables, but also the dynamics of the relationship that explain it in ways that facilitates the process of translating findings into policy and practice. The study of Raguram and colleagues (1996) provides an example of selectively extracting qualitative data to clarify a quantitative relationship between stigma and depressive symptoms.

4. Evaluate changes in the magnitude and character of stigma over time and in response to interventions and social changes

We expect the level and the features of stigma to vary in response to social changes and in response to interventions. As health policy and program personnel become more aware of the importance of stigma, and as intervention strategies are designed and implemented, evaluation research to track changes becomes increasingly important. Assessment of the effects of interventions on stigma helps to identify effective and ineffective approaches and to guide policy. The quantitative and qualitative assessments described above are both applicable.

5. Specify background information about diseases and disorders so that laws and health policy have the information required to minimize stigma

Fears and fantasies in the absence of scientific information provide fertile ground for stigma to flourish. Community understanding and social policy related to stigma need to be informed by research, so that laws and health policy are not influenced by speculation that magnifies risk or by misguided expectations about the benefits of restrictive policies. Basic health research on particular diseases and disorders helps to minimize stigma or to provide a rationale for restrictive policies, if necessary, that are rooted in evidence. Examples of health problems for which stigma-relevant policy should be better informed by research include driving laws for people with epilepsy, assumptions about the dangerousness of specific subgroups of mental illnesses, and both the risk of spread and the impact of restrictive policies for infectious diseases. Such research makes a needed contribution to the public understanding of health science related to stigma. Clinical interactions with patients, public health communications, and scientific writing will also benefit from research that identifies ways in which health professionals may contribute to stigma, either inadvertently or from insufficient self-reflection or consideration of their own prejudices.

6. Clarify ambiguities arising from the need for clear and simple public health messages despite the complexity of stigma-reduction strategies

Inasmuch as health information and programs that aim to reach a large segment of the public must be simple, and questions of health policy related to stigma may be highly complex, questions are likely to arise in the course of policymaking. Research is needed to identify and address them. For example, the final report of the NIMH AIDS and stigma workshop grappled with "the question of how AIDS educational messages can communicate the importance of taking responsibility for one's own safety from HIV (eg, through practicing safer sex) without also communicating the idea that people with HIV are blameworthy for their condition" (NIMH 1996). For TB control, one might also ask how to explain precautions concerning the risk of spreading tuberculosis for smear-positive patients, while also trying to maintain integration of patients in their family and community when in the expected course of treatment they become smear-negative. Stigma reduction strategies for mental health adopted by both patient activist organizations, such as the National Alliance for the Mentally Ill (NAMI), and mental health professional organizations, emphasize the biomedical basis of mental illness. This approach, however, may promote the idea that organic means blameless and socially or psychologically based disorders are blameworthy.

In the effort to formulate effective strategies and public health communications, research is needed to distinguish simple and effective public health strategies from simplistic approaches that may be counterproductive. Policymakers and the scientists who should be assisting them must be attentive both to the need for action-oriented agendas to reduce stigma, as well as the need for research to guide their design and implementation, and to evaluate their impact.

Approaches to study of stigma for health research

Stigma of a particular health problem is not necessarily perceived and experienced the same way among different segments of a community, especially among people distinguished by whether or not they have a particular health problem. To understand the experience of stigma among people who are stigmatized by their health status, research may inquire directly about their experience. Although this provides an account of self-perceived stigma, it is also useful to determine how stigma appears from other vantage points. Study of community residents who do not have the health problem under consideration provides information about stigma as a feature of the social context of the community. It is in this setting that the people with the target health problem reside. After acquiring a stigmatized health problem, their acknowledgement and experience of stigma is likely to change.

Assessing stigmatizing attitudes of health care providers indicates the extent to which stigma is a factor within the health system and how it operates. Stigma there is especially significant, and it must be identified so that it can be managed and eliminated or minimized. It may also be useful to consider the attitudes of key persons or groups within a community, such as political leaders, policymakers, and teachers. Their attitudes are likely exert more substantial influence on the community experience of stigma among the general population.

The family of people with the target health problem are another specialized group for assessment of stigma. They are themselves potentially targets of stigma through the process Goffman described as courtesy stigma. The conceptual framework advanced by AIDS researchers in the United States for study of stigma refers to family members as secondary targets (NIMH 1996). Other potential secondary targets of stigma include friends, loved ones, and the professionals and volunteers who work with people with HIV/AIDS (or other stigmatized health problems to a greater or lesser extent). In some cases, however, family may ally with a discriminatory response in the community and become perpetrators of stigma; this puts the primary target in an especially difficult position when potential family supports contribute instead to the stress of the condition. Wahl's (1999) study of the stigma of mental health problems found that more than a third of respondents identified relatives as perpetrators of stigma.

Inasmuch as many of our interests in this review concern both cross-cultural and interdisciplinary interactions, it is useful to note a difference in the interdisciplinary usage of the term "insider" to characterize study groups. Sociologists who study the stigma and discrimination targeting minority groups refer to an "insider's perspective" in a different way from cross-cultural researchers. The insider is the target of stigma for the sociologists (Oyserman and Swim 2001). For the cross-cultural researcher, however, everyone in the community is an insider by virtue of their residence there and membership in the culture. Health status and health care provider status represent useful distinctions among these insiders, as we have suggested, but all are providing a cultural view of stigma within that community, which may also be suitable for comparison with the respective experience of stigma among comparable groups in other cultures.

Survey methods and research on HIV/AIDS

Health research studies of stigma have employed various methods to assess the experience of stigma among target groups and in the general population. Survey studies have been widely used for study of the general population, especially for HIV/AIDS research, to assess potential perpetrators of stigma. Such assessments range from single-item queries to more complex instruments. For example, an assessment of stigma from households in the general U.S. population queried 5,641 respondents by telephone about HIV/AIDS with a single item, asking whether respondents agreed with the assertion: "People who got AIDS through sex or drug use have gotten what they deserve" (MMWR 2000).

Herek (1999) has also used a more complex instrument for national telephone surveys in the United States, and a version of that instrument is available on the Internet with a bibliography that includes studies which have used the survey. The extensive interview includes queries about interactions with persons with AIDS, symbolic contact, beliefs about transmission, attitudes towards people with AIDS, trust of authorities and experts, HIV mandatory testing, feelings toward people with AIDS, perceptions of persecution, and the effect of concerns about stigma on HIV testing. The content is highly specific to HIV/AIDS and to the social environment and cultural context of the United States. The survey instrument provides an example of the approach to context-specific health research on AIDS-related stigma discussed earlier in this paper. It indicates how an assessment and research strategy has been tailored to the particular issues that concern a particular health problem, and to the specific features of the particular setting where stigma control efforts are contemplated.

Mental Health research

Apart from HIV/AIDS studies over the last decade, most health research on stigma has been concerned with mental health. This results in large measure from the involvement of social and clinical psychologists, unlike other health scientists, in interdisciplinary collaborations with sociologists in studies of stigma from the outset. In the background section of his research report, Wahl (1999) reviews several approaches to study of stigma. Questionnaires have been used for studies of patients and the general population. The questionnaires are typically based on key features of stigma identified by the investigators. Vignettes have been used in the general population to compare the responses when the vignette portrays a protagonist identified as a mental patient or not identified as such. Analysis considers how this is related to respondents' rejection, devaluation, and blame of the protagonist. Analogue behavior studies are based on analysis of how people respond in situations where they are led to believe they are dealing with someone who is mentally ill or who has previously been in treatment.

Link's questionnaire for assessing stigma includes items that require scoring along a Likert scale from strongly agree to strongly disagree. These items were formulated under the headings (1) deviation and discrimination and (2) coping orientations that indicate secrecy, avoidance-withdrawal, and education (Link et al., 1991). Link and colleagues have also produced a 20-item scale for studying perceived stigma among people with a psychiatric disorder. This scale was recently used by Sirey and colleagues (2001) to assess the impact of perceived stigma on discontinuing medications among groups of older and younger patients with mild depression.

The survey instrument developed by Wahl (1999) included a section on stigma comprising 9 items and a section with 12 items on discrimination experienced by consumers of mental health care (usually identified as patients in other studies). The approach was innovative in several respects. In this study, supported by NAMI, Wahl involved the consumers at an early stage in the development and design of the research. Consumers helped to identify the relevant indicators of stigma to ensure that the assessment would be relevant to their interests. The study design included both a larger survey (N=1,301) and a subset of respondents followed up with in-depth qualitative telephone interviews, which were transcribed and coded for qualitative analysis. This made it possible to examine not only the frequency of responses from the survey, but also the nature and meaning of response categories.

Each of these 21 items under the headings of stigma and discrimination consisted of assertions about the respondent's experience, which were coded never, seldom, sometimes, often, or very often. Some items would likely not have been included without the participation and input of the consumers in the study, which is an advantage but also raises some questions. For example, it is not clear how to interpret affirmative responses to such items as, "I have been advised to lower my expectations in life because I am a consumer." Although this was clearly a matter of concern for many respondents, who considered it stigmatizing, it is unlikely that caregivers who had made the remarks would have characterized their intent or awareness as stigmatizing. Consequently, the finding offers a useful insight for clinicians who had not considered impact of such remarks, and it also indicates the value of assessing stigma from the vantage points of both consumers and providers.

Cultural epidemiology

Like the difference in what may be regarded as stigmatizing across patient and provider groups, it is also worth considering differences in what constitutes stigma across cultures. Are concerns about the inability to marry, which is an important manifestation of stigma in South Asia, as important elsewhere? Such questions were considered in a comparative study of the cultural basis of the manifestations of self-perceived stigma among patients with clinical depression in Bangalore and London. Several reports discuss the approach for locally validating features of stigma (Weiss et al., 2001; Raguram et al., 1996).

This approach was developed in the context of cultural epidemiological research examining representations of illness-related experience, meaning, and behaviour. For study of self-perceived stigma among persons with a mental or medical problem, queries concerning illness-related rejection, exclusion, blame, and devaluation are included in an interview. Responses are coded on a four-point scale from a definite yes to definite no, and the validity of these items examined on the basis of their internal consistency. Analysis considers the items and an additive scale of those items retained in a measure of stigma. Additional qualitative data are maintained to indicate the nature of stigma. This cultural epidemiological approach to the assessment of stigma has been used for studying patients coming for treatment for both psychiatric (referenced above) and medical problems (Vlassoff et al., 2000).

To compare the illness-related stigma among different groups who do not have the health problem, the questions are reformulated as inquiries about the problems of a person depicted in a vignette, which constitute a typical presentation. The interview is then administered to respondents from the general population of the community who have no overt indication of having the condition, and administered also to health care providers of the community. In separate studies of onchocercal skin disease and leprosy comparing unaffected people in the community with people identified in a clinic (leprosy) or community (onchocerciasis) with these disorders, social stigma reported by the community sample has been higher than self-perceived stigma reported by people with the disorder. We expect that this approach will become even more useful to identify culture and disease-specific features of stigma, and for cross-cultural comparisons of clinic and community-based experience of stigma. Here one might speculate about the implications of possible differences in the cultural strategies for managing stigma. Would the consumers of mental health services identified through NAMI and studied by Wahl report higher self-perceived stigma than the general population with regard to comparable disorders, instead of lower levels of stigma? The methodology provides a means for testing such hypotheses.

Ethnography and social context

Other approaches for assessing the nature and impact of stigma on people and society are also likely to be useful. Lang (1991) used ethnographic methods to study AIDS-related stigma. Kleinman's (1995) background discussion to his presentation of research on epilepsy in China examined the concept of stigma and its relevance to studies of epilepsy, and his review shifted the focus from stigma to the broader context of social experience. He emphasized questions about how epilepsy (and illness more generally) is affected by, and how it affects local worlds. This approach reflects the priority of ethnographic study, for which stigma is one perspective in the analysis of social experience.

Policy studies

Research on the interaction of stigma and social policy is needed to complement the approaches already discussed for study of self-perceived stigma and stigma in the general population and subpopulations. Social and health policy research should examine questions of access to care, health financing, and research support inasmuch as they reflect priorities subject to the influence of stigma. HIV/AIDS policy and studies of tuberculosis have been especially concerned with questions about the human rights of infected persons, especially when such people come from segments of the population that are already socially stigmatized (Lerner 1996). AIDS-related stigma studies have considered interactions of the disease with minority status or gender, and the need for research in the field to guide policy (Yoshioka and Schustack 2001; Moneyham et al., 1996; Anon. 1998).

Our earlier discussion of research needs (item 5) considered how questions of social policy interact in subtle ways with questions of scientific evidence and stigma. Lerner's account and related questions about such diverse issues as driving privileges for people with controlled epilepsy, forced isolation of people with active TB, involuntary notification of sexual partners of people with HIV/AIDS, and so forth reflect a need not just for health research, but the need to examine how stigma, culture, liability, and ethics interact in the development of policy. Gostin and Lazzarini (1997) outline a seven-step program for generating medical and epidemiological knowledge to assess the public health benefits of proposed policy and its impact on the health and human rights of affected populations.

Summary and Conclusion

Although initially formulated as an area for social science research, stigma represents an important interest for public health. It contributes to suffering, which may further impair health, and it interferes with appropriate use of health services, even when they are available. The conceptualization of stigma that Goffman developed has guided a wide range of social research studies, and we have suggested a reformulation of the concept suitable for a public health agenda. After summarizing the broad aims of stigma research for international health, the paper reviewed approaches to research and examined the role of stigma for selected tropical diseases.

A key issue for public health research on stigma is recognition of the need to identify stigma-related questions that are appropriate to particular health problems. We have also argued that research on stigma must be more sensitive to its cultural dimensions, recognizing that it is not only the question of what is stigmatized, but how stigma is manifest and how it is maintained. The need for disease and culture specificity distinguishes the framework for applied international health research from the larger body of social research on stigma.

The kind of interventions suggested by study of stigma vary from consideration of one health problem to another. Documenting the stigma of onchocercal skin disease contributed to establishment of an intervention to control the disease, rather than counseling or support groups to deal with the personal impact of stigma apart from persisting effects of the disease, which would of course have been highly inappropriate. Leprosy control programs have made effective use of a simple message, "leprosy can be cured," from the early 1980s. As the message became believable, it changed the condition from a transformation of personal identity to a treatable disease, and by doing so, it countered the impact of stigma that prevented people from even considering treatment. Approaches for tuberculosis, HIV/AIDS, epilepsy, and various mental health problems have been suggested, but far more attention is required to identify the particular ways in which stigma contributes to the suffering of people with these diseases and makes it difficult for them to get help. By considering a relevant formulation of stigma, needs for field studies, and for policy studies, we have indicated directions for needed research to eliminate, manage, or cope with stigma.

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