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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

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Stigma Interventions and Research for International Health


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

Background paper

Stigma and Global Health: Developing a Research Agenda
An International Conference
5-7 September 2001

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., MPH

Additional Professor and Head

Department of Health Education

National Institute of Mental Health and Neuro Sciences

Bangalore, India

3 December 2001

Abstract

The concept of stigma is rooted in history and social science, but the historical concept of physical stigmata and the sociological framework of deviance and social interactions fall short as a guide to public health interventions and research to eliminate or mitigate undesirable stigma. A wide range of social phenomena, usually undesirable but not necessarily so, may be considered under the heading of stigma. For public health, however, a suitable framework requires a working definition of stigma that recognizes the distinctive features of particular diseases in particular social and cultural contexts. One or a combination of various approaches to interventions may focus on controlling or treating target health problems, countering tendencies of those who stigmatize others, and supporting those who are stigmatized. Stigma may also influence social policy with effects on research priorities, human rights, and access to health care and social services. Research needs include documenting the burden from the stigma of various health problems; comparing stigma for different conditions and in different health system, social, and cultural settings; and evaluating practical approaches for intervention programs. Such research should consider stigma from various vantage points; these include the experience of stigma among persons with a targeted health problem, and stigmatizing ideas and behaviour in the general population and among health care providers and community leaders. Our review of health studies of stigma considers its role 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 research for effective interventions.

Stigma Interventions and Research for International Health

Stigma has become an increasingly important priority for health policy and research. The topic encompasses a broad set of interests and specifies a field of study, however, that without critical rethinking may be too broad to contribute as much as we expect to health policy. The diversity of international health problems and the complexity of their social and cultural settings make questions of stigma even more challenging. Too little attention has been paid to the concept of stigma, distinct from its impact; careful consideration of the particular features of a useful formulation to guide public health policy and action is needed, especially with respect to the stigmatizing diseases of low- and middle-income countries. As we critically review of the topic, we begin by considering 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 the canonical text for students of stigma. As we revisit his formulation and consider its relevance for public health, however, it is also important to recognize its limitations. Goffman's formulation of stigma was a product of the 1950's in North America when deviance and conformity to a social standard were matters of serious concern. Politics, ethnicity, and even the length of one's hair were interpreted with reference to a standard that indicated little regard for the values of cultural pluralism. His treatise was also 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. For example, a recent book by Gerhard Falk (2001) identifies women, the mentally challenged, homosexuals, single people, prostitutes, African-Americans, the overweight, and even successful people, among others, as targets 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 identify the need for caution in approaching the study of a concept of stigma with such immense scope (Stafford and Scott 1986). The matter is further complicated by recognition that not all stigma is equally bad, and that some forms of stigma in proper measure may even serve a useful social function. Efforts to avoid stigma may motivate moral and ethical behavior; for some it may prevent suicide or substance abuse, and it may motivate self-help and appropriate medical help seeking.

In reflecting on the topic, Goffman himself recognized the inherent problem of efforts to extract a commonality from the diverse conditions that attract stigma. As a scholar, he also appeared to question the explanatory power of a dichotomy characterized by the opposition of conformity and deviance; he 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). Backing off somewhat from pursuing this line of reasoning, Goffman concluded that sufficient common features justified study of stigma with reference to diverse groups, but 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, 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

Several reasons explain why stigma is such an important consideration for health policy and clinical practice. It adds to the illness burden 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 the disease. For example, paucibacillary leprosy may present at an early stage as a painless depigmented or anaesthetic patch; hearing the diagnosis is likely to be more troubling than these symptoms.

The emotional impact of such illness meanings indicates the various ways by which stigma operates. Social science research on stigma regards it fundamentally as a problem arising from social interactions. But Goffman and other researchers have also recognized self-perceived stigma, which may be as troubling whether or not it arises from an actual interaction, and whether or not this perceived stigma accurately reflects the critical views of others. In either case, stigma may impair the quality of life from concerns about disclosure, and effects on 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 a WHO fact sheet identifies as the hidden burden of mental illness (WHO 2001), and it constitutes a hidden burden for other stigmatized conditions as well. 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 injection drug users, interferes with voluntary testing, counselling and treatment. Timely treatment benefits the individual and society, inasmuch as it reduces suffering, improves health and productivity, and limits opportunities for spread (Chesney and Smith, 1999). The distressing prospect of having a stigmatized condition, which is further associated with stigmatized status in society, may be an inducement to ignore or conceal 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 later in its course 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 diseases that require a long course of treatment, or chronic disorders that require chronic treatment, like epilepsy, stigma constitutes an obstacle to remaining in treatment.


Rethinking stigma for health research

In formulating a useful concept of stigma for public health, it is important to identify its salient features that are amenable to study and 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 mitigating 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 experience or reasonable anticipation of an adverse social judgment about a person or group. This judgment is based on an enduring feature of identity conferred by a health problem or health-related condition, and the 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 as it applies to social and health research.

It is important to note that efforts to distinguish stigmatizing behavior from appropriate precautions for some health problems may require consideration of a delicate balance of public health risks and restrictive or exclusionary treatment or policy justified by compelling medical and epidemiological evidence. Though exclusionary, such behavior is different from 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, such as wearing a protective mask when interacting with them, even though the same behaviors would be stigmatizing after treatment has begun and risk of infection from them eliminated. Similarly, health personnel avoiding contact with patients treated for leprosy who are no longer infectious is indeed stigmatizing, inasmuch as such behavior suggests that a conflicting social judgment has inappropriately overridden a medical judgment. Research is concerned with the questions of how much risk to others there may actually be, 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 manifestations of the "exclusion, rejection, blame, or devaluation" and the nature 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 light. 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 both for 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. Attention to disease-specific and culture-specific features of HIV/AIDS has been 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. By linking an action agenda to context, this body of work from experience in the United States demonstrates the value of disease and culture specificity, and it tacitly highlights the need to carefully develop specific strategies for managing the stigma arising from other diseases in the vastly different settings of low- and middle-income countries.

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

The importance of stigma for research and control of tropical diseases has been widely acknowledged. Among them, no disease has been more closely associated with it than leprosy, and it has become a metaphor for stigma. 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. The impact of leprosy 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 responsiveness to needs, concerns about disclosure of the condition may make nearby health services for leprosy too close for comfort. 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 growing evidence that directly observed treatment (DOT) is effective, questions about the appeal, acceptability, and limitations of DOT programs become more significant. Why do substantial numbers reject them? In a recent study in the Pathanamthittha District of Kerala, Balasubramanian and colleagues (2000) reported that stigma and concerns about not being observed was responsible for 28% of patients not being observed in a DOTS program, and this was a substantially greater problem for women (50%) than for men (21%). 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) reported taking 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, and cultural epidemiological study 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 to motivate 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. A framework indicating the focus and approach for interventions to counter undesirable effects of stigma is indicated in Table 1. Formulating strategies for particular health problems also requires careful consideration of appropriate interactions between global, national, and local priorities, policies, and resources (Weiss et al., 2001a).

Table 1.  Focus and approach to Interventions to Mitigate Stigma

Focus

Approach

Example*

Health problem

  • Public health to control the disease
  • Early recognition and treatment for cure or disability prevention
  • Onchocercal skin disease
  • Leprosy

Stigmatizers

  • IEC and social marketing to enhance compassion and reduce blame
  • Correct misapprehensions of risk
  • Epilepsy
  • Various infectious diseases

Emotional impact

·           Counseling

·         Peer support groups and therapeutic communities

  • Most conditions
  • Mental health problems

Social policy

  • Advocacy, lobbying, and legislation
  • Research support
  • HIV/AIDS
  • Diseases of poverty

*Examples are illustrative but incomplete. Stigma-mitigating strategies are not limited to a single focus or approach. (See also Miller and Major 2000)

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Research Objectives

To develop health policy sensitive to the adverse effects of stigma, several kinds of innovative research are needed. Although policy must be epidemiologically informed, the scope of required research to mitigate the effects of stigma--especially in low- and middle-income-countries--is much broader.

  • Document the burden from the stigma of various health problems

Appropriate indicators for a descriptive account of stigma, which may also be suitable for scales that facilitate comparison and analysis, are needed to characterize the role of stigma for particular health problems, in different health service settings, and across cultures. Such data indicates the priority of stigma for health policy and for training curricula of health care personnel.

Qualitative, in-depth narrative accounts are needed to develop queries, scales, and instruments at the outset, so that they may ensure the validity of large quantitative assessments addressing relevant aspects of stigma and its impact. 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 particular concerns about aspects of stigma identified in a survey.

The dimensions of stigma constituting a framework for assessment include consideration of the following points:

    • Reluctance to disclose the problem
    • Exclusion or rejection from school, work, social groups and activities
    • Blame and devaluation
    • Diminished self-esteem
    • Social impact on family
    • Ability to marry and impact on existing marriage
    • 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.

    • 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 for 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 from quantitative data, analysis of qualitative data clarifies the nature of that relationship, which in turn contributes to 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.

    • 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. For instance, although it is felt that the development of efficacious treatment helps to reduce stigma, this process needs to be documented. The way these changes vary among different segments of the population also requires study, especially among people with limited access to health services that make such treatment available. As health policy and program personnel become more aware of the importance of stigma, and as stigma intervention strategies are designed and implemented, evaluation research to track changes becomes increasingly important. Assessment of the effects of interventions on stigma helps to distinguish effective from ineffective approaches and to guide policy. The quantitative and qualitative assessments described above each contribute to the assessment of such changes over time.

    • 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 stereotypes, prejudices, and unfounded speculation that magnify risk, or by misguided expectations about the benefits of restrictive policies. Basic health research on particular diseases, disorders, and conditions helps to minimize stigma or to provide a rationale for restrictive policies, if necessary, based on appropriate 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 controlling infectious diseases. Such research should contribute to the public understanding of health science related to stigma. Clinical interactions with patients, public health communications, and scientific writing should each be attentive to ways in which health professionals may contribute to stigma inadvertently and from insufficient self-reflection or consideration of their own prejudices.

    • 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 because 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 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 must be attentive both to the need for action-oriented agendas and the need for research to guide such policy and action.

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 examine stigma 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 social life in that community--important information because it is in this setting that the people with the target health problem reside. After acquiring a stigmatized health problem, acknowledgement and experience of stigma for that condition may be expected 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 eliminated, minimized, or managed. 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 to exert more substantial influence on the community experience of stigma among the general population and among the experience of stigma among people with a stigmatized health problem.

The family of people with the target health problem are also a specialized group of particular interest for assessment of stigma. Like the affected individual, family 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 health staff and volunteers who work with affected individuals. In some cases, however, family, and sometimes health professionals, 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 or health service 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 usage of the term "insider" across academic disciplines 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 distinctive settings and 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. Surveys have been widely used in the general population, especially for HIV/AIDS research to study 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 one question, asking whether respondents agreed with the following 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 identifying studies that 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 in 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 also indicates how research strategies may address the particular issues that concern a particular health problem in a particular setting where managing stigma is a priority.

 

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 of these approaches to study of mental illness-related 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 NAMI-supported study 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 to consider 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 the impact of such remarks, and it also indicates the value of assessing stigma from the vantage points of both consumers and providers.

 

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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. Consider, for example, whether concerns about the inability to marry, which is an important manifestation of stigma in South Asia, are 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., 2001b; 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 based on the framework for assessing stigma outlined above under research objective 1 (page 13) are included in an interview. Responses are coded on a four-point scale from a definite yes to definite no, and the database also includes narrative responses to these queries. The coherence of a scale based on these items examined on the basis of their internal consistency. Analysis considers both the individual items and an additive scale of those items retained for a coherent, locally validated measure of stigma. Qualitative data indicate the nature of various aspects of stigma. This cultural epidemiological approach to the assessment of stigma has been used for studying patients coming for treatment of mental health problems (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 representing various approaches to health care available in 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 found for infectious diseases in Africa and South Asia? The methodology provides a means for testing such hypotheses, and the answers should inform interventions to manage undesirable stigma.


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 critically examined the concept of stigma, focusing on studies of epilepsy. His review shifted the focus from stigma to the broader context of social experience, considering 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 dimension 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 more appropriate as a guide for public health research, policy, and action. After examining the role of stigma in selected tropical diseases, we reviewed the broad aims and approaches to stigma research for international health.

Our focus on an adverse social response (experienced or reasonably anticipated), based on health status, as the defining feature of stigma underscores the diversity of the concept. International health research on stigma must also be more sensitive to its cultural dimensions, recognizing the relevance of questions not only about what is stigmatized but also how stigma is manifest and how it is maintained. Recognizing aspects of stigma that are particularly relevant for particular health problems is a key issue for research in public health. The need for disease and culture specificity distinguishes an orientation and approach for applied international health research from the larger body of social research that is typically more concerned with the common features of stigma, which as we showed at the outset even Goffman questioned.

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 (OSD) contributed to establishment of an intervention to control the disease, rather than counseling or support groups to deal with the personal impact of stigma, which in the settings where OSD occurs would have been highly inappropriate. Leprosy control programs have made effective use of a simple message, "leprosy can be cured," from the early 1980s when the introduction of multi-drug therapy made that a credible claim (Figure 1). As the message became believable, it changed the condition from an irreversible transformation of personal identity to a treatable disease, and by doing so, it countered the impact of stigma that previously marked leprosy as a condition for which treatment was inconceivable.




Table 1.  Focus and approach to Interventions to Mitigate Stigma

Focus

Approach

Example*

Health problem

  • Public health to control the disease
  • Early recognition and treatment for cure or disability prevention
  • Onchocercal skin disease
  • Leprosy

Stigmatizers

  • IEC and social marketing to enhance compassion and reduce blame
  • Correct misapprehensions of risk
  • Epilepsy
  • Various infectious diseases

Emotional impact

·                                        Counseling

·                                        Peer support groups and therapeutic communities

  • Most conditions
  • Mental health problems

Social policy

  • Advocacy, lobbying, and legislation
  • Research support
  • HIV/AIDS
  • Diseases of poverty




*Examples are illustrative but incomplete. Stigma-mitigating strategies are not limited to a single focus or approach. (See also Miller and Major 2000)




Efforts to alleviate the stigma of epilepsy and HIV/AIDS have focused on helping individuals to acknowledge and adjust to life with incurable diseases; a major epilepsy campaign is called "Out of the Shadows," and for HIV/AIDS it is "Breaking the Silence." Other approaches for tuberculosis, various mental health problems, and other stigmatized conditions have been suggested, but far more attention is required to identify and counter the particular ways in which stigma contributes to the suffering of people with these health problems. By considering a relevant formulation of stigma and ways of proceeding with field and policy studies, we have indicated directions for needed research to mitigate undesirable health-related stigma.

 

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