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Epilepsy and social identity: the stigma of a chronic neurological disorder
Review
Epilepsy and social identity: the stigma of a chronic neurological disorder Lancet Neurol 2005; 4: 171–78
Ann Jacoby, Dee Snape, Gus A Baker
Epilepsy is the most common serious neurological disorder worldwide, affecting about 50 million people.1 In most people with epilepsy, the disorder is clinically benign. However, because of the stigma associated with having epilepsy, which is common to many cultures, there can be a negative effect on the social identity of people with the disorder, particularly for those living in resource-poor countries. In this paper, we present general theories of stigma, as well as those specific to chronic illness. We relate these theories to the stigma associated with epilepsy throughout history and across cultures. We review research on the relation between stigma and the overall quality of life of people with epilepsy. Finally, we address reduction of the stigma. The fundamental characteristic of epilepsy is recurrent, unprovoked seizures. Epileptic seizures are broadly classified into those where the onset is partial (ie, where epileptic activity begins in one hemisphere of the brain) and those that are generalised (ie, where there is initial involvement of both hemispheres).2 The various seizure types within these broad groupings differ depending on precisely where in the brain epileptic activity starts and how far it spreads. Thus, seizures vary from brief lapses of attention to severe and long lasting convulsions.3 Despite such variation, lay people’s perceptions of epilepsy are most commonly of generalised seizures: the classic and dramatic “grand mal”.4,5 Large-scale incidence studies of people with epilepsy, including systematic follow-up, have found that in most of those affected, seizures can be effectively treated with antiepileptic drugs,6–8 and that after seizure remission, drug treatment can be withdrawn.9–10 Thus, epilepsy is a generally benign disorder with excellent clinical prognosis.11 However, in 20–30% of people, seizures will be intractable to treatment and are associated with a high risk of psychiatric comorbidity12 and low quality of life.13 Intractability is not evenly distributed across the population of people with epilepsy; it is more common in particular epilepsy syndromes,14 for particular causes, and for particular seizures types.15 Epilepsy is not just a clinical disorder but a social label;16 and a wealth of research supports the view that the social prognosis of epilepsy may be less optimistic than the clinical one, particularly for the four-fifths of affected people who live in the world’s resource-poor countries17 and for those with intractable seizures.13 The role of stigma in forming the social prognosis of people with epilepsy—increasingly the focus of public campaigns18—is the focus of this paper. We review research findings on the nature of stigma in epilepsy and the negative affect of stigma on the quality of life of people with epilepsy.
Theories of stigma Goffman19 defines stigma as “an undesired differentness”. People are stigmatised because they have an attribute that is undesired and so “deeply discrediting”. This attribute http://neurology.thelancet.com Vol 4 March 2005
Division of Public Health (Prof A Jacoby PhD, D Snape MA) and Division of Neurosciences (Prof G A Baker FBPsS), University of Liverpool, UK Correspondence to: Prof Ann Jacoby, Division of Public Health, Whelan Building, The Quadrangle, Brownlow Hill, Liverpool L69 3GB, UK [email protected]
represents a discrepancy between the person they might be and the person they are—in Goffman’s words, between their virtual and actual social identity. Goffman identifies three different types of stigma: the tribal stigmas of race and religion, blemishes of individual character, and abominations of the body. Whichever of these prevails, Goffman argues that the stigmatised person is seen by others as “not quite human” and so a legitimate target for discrimination. These others, the so-called “normals”, construct “a stigma theory, an ideology to explain the person’s inferiority and account for the danger the person represents”, and might also “impute a wide range of imperfections on the basis of the original one”. Goffman notes that even though stigmatised people may attempt to rid themselves of this “contaminated” social identity, they cannot reacquire the status of normal, only that of one who was once contaminated. In this theory, stigma is ineradicable and the social identity of the stigmatised person is permanently flawed. The concept of stigma can be traced in sociological thought to Durkheim,20 who argued that by demarking the boundary between the normal and the deviant, stigma and the process of stigmatisation emphasise a sense of unity and community in any social group. Although embracing this functionalist perspective on stigma, later authors have suggested that its cause involves something more. Stigma may be rooted in the biologically based need to live in effective groups21— individuals perceived to violate group norms of reciprocity, trust, or preferred socialisation practices, hence threatening group functioning, will be stigmatised. Consistent with this theory, thieves violate the principle of reciprocity, those who cheat violate the principle of trust, and people with chronic illness might violate preferred social values. Similarly, stigma might involve delineation of characteristics that pose tangible or symbolic threats to an individual or a culture, including physical, moral, and health threats.22 Stangor and Crandall22 highlight the universality of certain stigmas—such as that associated with facial disfigurement—concluding that they may be “hardwired” as threats. However, they and others23–26 also highlight the cultural and temporal nature of many 171
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stigmas: what is defined as stigma and negative social identity varies from one social group to another and from one time to another. Being overweight, for example, is highly valued in most societies where food is scarce, but is now highly stigmatising in affluent societies where it is defined as a major and largely self-inflicted health problem. Common to theories of stigma is the emphasis on a social group process. Additionally, stigma theorists have highlighted the previously neglected role of power relations in the social construction of stigma.27,28 The labelling, stereotyping, separation from others, and consequent status loss that are key elements of stigma become relevant only “in a power situation that allows them to unfold” (panel 1).27 “Cultural norms of identity or being,”28 which denounced and oppressed people, including those with chronic illness, need to be assessed in sociohistorical contexts.
Chronic illness as stigma Sociological taxonomies include stigma as a component of chronic illness.29–31 For example, Field30 differentiates four distinct categories of illness: acute, chronic nonstigmatising, chronic stigmatising, and mental. Features that differentiate chronic stigmatising illnesses from chronic non-stigmatising ones include: the degree of difficulty others have in interpreting the symptoms, the degree to which the illness becomes a central part of identity, and the severity and persistence of the social consequences. Albrecht and colleagues32 propose that the amount of stigma associated with chronic illness is determined by two separate and distinct components: the attribution of responsibility for the stigmatising illness and the degree to which it creates discomfort in social interactions. Albrecht and colleagues32 suggested that the latter is the best explanation of the differential degrees of social distance maintained by people in relation to various stigmatised groups, whereas other authors33–35 have proposed that perception of control and responsibility is key in stigma. For example, when people were asked to rate a range of chronic illnesses across many dimensions (eg, contagious or non-contagious, rare or common) and attribution of responsibility, along with illness severity, were central to the amount of stigma associated with illnesses.34 Furthermore, the affective reactions of others vary with their perceptions of causality.23,33,36 Thus, physical disorders, the onset of which were perceived to be uncontrollable, elicited pity and assistance, whereas mental and behavioural disorders, in which the onset was perceived to be controllable and in some way the responsibility of the affected person, elicited anger and neglect. More recently, Reidpath and co-workers,37 who take a social-structural perspective instead of a socialinteractionist one, have suggested that stigma is part of chronic illness because individuals who are chronically ill have less “social value” than healthy individuals. In their analysis, those unable to engage in the process of 172
Panel 1: Components of a stigma27 1. People differentiate and label socially important human differences 2. Dominant cultural beliefs link label people with negative stereotypes (eg, people with mental illness are a danger to others) 3. People who have been labelled are placed in distinct categories (eg, “fat”, “disabled”, “epileptic”) to separate them from others 4. People who have been labelled experience status loss and discrimination (eg, unequal health and socioeconomic outcomes) 5. Social, economic, and political power enables components 1–4 (ie, those in positions of low power cannot impose labels, stereotypes, separation, or status loss)
“reciprocal exchange” because of ill health are deemed to have low social value and so stigmatised. Furthermore, Reidpath and co-workers argue that to simplify the identification of good and poor reciprocators, societies stigmatise whole categories of people perceived to have poor social value, rather than individuals. Thus, simply having a chronic illness will automatically be accompanied by a loss in social value, even when the course of the illness is benign and there is little accompanying functional loss. Stigma from illness could be something of a selffulfilling prophecy.38,39 Research has generally found that the self-fulfilling prophecy (when belief in something that is not true leads to its fulfilment)40 is real in relation to educational attainment,41,42 gender behaviour,43 and mental illness,44 although meta-analyses suggest the effect size of self-fulfilling prophecies in contributing to the maintenance of stigma is modest.45 Nonetheless, Link46 hypothesises that individuals with a potentially stigmatising illness assume from prevailing illness stereotypes and lay people’s theories that they will be devalued and discriminated against; they then adopt coping strategies to address these assumptions, typically secrecy and social withdrawal, which have marked negative consequences for quality of life, and hence reinforce their feeling of stigma. However, these internal psychosocial processes are insufficient to explain the experience of illness stigma and its knock-on effects on quality of life. Link and Phelan27 point out that stigma leads to direct and indirect discriminatory behaviour by others that can substantially reduce the opportunities for people who are stigmatised. Whatever the mechanisms involved, stigma is an important public-health issue. Stigma is a cause of disease; people who are stigmatised have high exposure to health risks and low access to protective factors and treatment. The disease process is exacerbated by stigma-related stress.27 Stigma is therefore a potentially major, if not easily quantifiable, contributor to illness burden. http://neurology.thelancet.com Vol 4 March 2005
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Epilepsy as stigmatising illness In his account of social representations of epilepsy, Temkin47 showed that, with few exceptions, epilepsy has been a discredited disorder across both time and place, which leads to the question of whether human beings are “hard-wired” for the threat of seizures. Potential explanations for such hard-wiring centre on the fear seizures can invoke in others—those described by Vizioli in Ziegler48 as “the terrified watchers”. By losing control, people with seizures are seen as “reverting to the primitive”, and hence as representing “anomic terror” to those without seizures.49 By representing human weakness and unpredictability, they are seen as “uniquely dangerous”50 and an affront to societal values.51 Seizures affront social order through their unpredictability, typically dramatic presentation, and the sense of impotence they induce in others.52 Such explanations rely on a powerful stereotype in which all seizures are generalised and all patients have chronic and incapacitating epilepsy, and the diversity of epilepsy and the associated seizures are ignored. Nonetheless, the relevance of these explanations is supported by research showing that many lay people have this stereotype.4,5 Another persistent stereotype seems to be that epilepsy is a mental illness: historically, in westernallopathic medicine, psychiatrists treated epilepsy. In resource-poor countries, psychiatrists commonly treat epilepsy. By contrast with the sociological taxonomies,30 which place epilepsy in the category of chronicstigmatising illness, the categorisation of this disorder by lay people’s taxonomies is unclear—eg, even in the 21st century in the UK a substantial minority of the general public seem to regard epilepsy as a mental, rather than a physical, disorder.5 Furthermore, Goffman’s proposition that a wide range of imperfections will be attributed to the stigmatised person because they have a disorder is reflected in biomedical theories about epilepsy—eg, a relation between epilepsy and criminal or violent behaviour.53,54 Such reasoning was central to the “epileptic personality”55—people with epilepsy were thought to have a range of undesirable tendencies in addition to seizures, including aggressiveness, hyper-religiosity, and hypersexuality. That these scientific ideas about epilepsy, however fundamentally flawed, carried over into negative public connotations, has been shown by many studies of lay people’s knowledge and attitudes to epilepsy. In the UK surveys by Harrison and West4 and Scambler,52 for example, people with epilepsy were commonly characterised as aggressive and potentially violent, retarded, weak, sluggish, slow, antisocial, and physically unattractive. Reis56 argues that although these classic stereotypes of epilepsy may have ceased to have resonance, they have given way to new stereotypes in which people with epilepsy are regarded as introverted, less open than others, and over-anxious. The generalised application of such stereotypes, even if grounded in the http://neurology.thelancet.com Vol 4 March 2005
current biomedical evidence base (eg, associations between epilepsy and psychological morbidity,57 learning disability,58,59 and drug-related cognitive impairments60), continues to disquiet people with epilepsy. Theoretical work on stigma has tended to emphasise two important dimensions, visibility or concealability and course or controllability,24,61,62 both of which have high relevance to epilepsy. Seizures, particularly those that are generalised, may be difficult to conceal and may become more prominent over time. Four additional dimensions of stigma have been proposed: disruptiveness, aesthetics, origin, and peril, and each relates to the stigma associated with epilepsy (panel 2).61 Seizures are clearly disruptive to social interaction; and depending on their specific manifestations may also be aesthetically unpleasant. The legacy of the idea that epilepsy is the product of sin and possession means that the cause of epilepsy is ambiguous, and although seizures present far greater dangers to those with epilepsy than those without it, the issue of peril is echoed in old ideas of epilepsy as a contagion.47 Such ideas, though no longer generally held in western countries, are still dominant in the resource-poor ones, where most of those affected live, and commonly lead to their social ostracism.63–65 A major implication for people with epilepsy who live in resource-poor countries is that they are commonly not protected during seizures, so have high chances of serious seizurerelated accidents, and their disorder tends to be visible to others. Even in more developed countries, because no definitive cause of epilepsy can be found in many patients66 misattributions ensue—22% of American adolescents studied confessed they did not know whether epilepsy is a contagious disorder.67
Panel 2: Dimensions of stigma61 Concealability Extent to which the disorder associated with stigma is visible to others Course of the mark Whether the disorder becomes more salient over time Disruptiveness The degree to which the disorder interferes with social interactions Aesthetics Subjective reactions of others to the unattractiveness of the stigmatising disorder Origin Whether others think the disorder is congenital, accidental, or intentional Peril The perceived danger of the disorder to others
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Das68 argues that whereas a sense of loss69,70 is the focus for people with non-stigmatising chronic illness or disability, those with stigmatising illness mostly experience guilt and shame. The idea that stigmatising disorders symbolise a threat to the moral universe is highly relevant to epilepsy.52,71 Schneider and Conrad71 reported that informants in their research, who were cognisant of epilepsy as a new “moral weight” and not simply a clinical label, perceived having it as far more than simply having seizures. These and other researchers72,73 also described the way in which family members acted as the arbiters of the moral meaning of epilepsy, repeatedly instilling a feeling of shame and guilt in those with the disorder. Kleinman74 has described how in Chinese cultures, the moral weight attached to epilepsy not only applied to the affected person, but also threatened familial aspirations and life chances through a process of “courtesy stigma”:19 because of fear of family disgrace, people with epilepsy were typically kept at home and their diagnosis was kept secret. Many surveys have documented improvements over time in attitudes to epilepsy, both among the general public5,75–82 and among population subgroups, such as employers83 and healthcare professionals84 suggesting that its weight in “local moral worlds”68 has lessened. For example, in the USA,75 public affirmation for questions about whether they would object to their child playing with one who had epilepsy, and whether people with epilepsy should be barred from employment in the same jobs as others, decreased from 24% and 35%, respectively, in 1949 to 6% and 9% in 1979. Interestingly, despite changes in public attitude, epilepsy evokes greater responses to rejection than other chronic disorders, even deeply stigmatising diseases such as AIDS and mental illness.49,85–87 In Goffman’s analysis of stigma, he makes the distinction between disorders that are discrediting and discreditable: the former are immediately obvious to others and in the latter the stigma is not immediately perceivable. Because the physical manifestations of epilepsy—seizures—are transient, epilepsy is a discreditable disorder. The main management issue for people with a discreditable disorder is information control.19 Many people with epilepsy contrive complex accounts of their symptoms to disguise the disorder, which they know to be stigmatising;52,71 although secrecy seems to be the main strategy, it seems to be situationspecific rather than a generalised response.88,89 Goffman also suggested that people who are stigmatised will try to rid themselves of the stigma—in the case of epilepsy, by seeking treatment to control their seizures. The problem that Goffman identified of being “one who was once contaminated” may not affect people with epilepsy: if it is not curable, only controllable, the threat of “contamination” can never be entirely ruled out. Interestingly, whereas some people with epilepsy seem to admit to the permanence of epilepsy stigma, there is 174
also evidence that others put it aside whatever their clinical prognosis.90 Scambler has made an important theoretical distinction52,91,92 between stigma that is felt (ie, the shame of being epileptic and the fear of encountering enacted stigma) and stigma that is enacted (ie, actual episodes of discrimination, both formal and informal, against people with epilepsy solely on the grounds of their having epilepsy). Scambler proposes a “hidden distress” model wherein people with epilepsy, fearful of experiencing enacted stigma, pursue an active policy of non-disclosure. By doing so, they both reduce the likelihood of encountering enacted stigma and increase the stress of managing their disorder, with the result that stigma has a far more disruptive effect on their lives. In Scambler’s study, almost everyone reported stigma that is felt, even if only intermittently.52 One of us90 subsequently explored the distinction between felt and enacted stigma in a large cohort of people with epilepsy in remission and found further support for it: whereas only very small percentages of respondents attributed specific employment problems to having epilepsy, a third thought that having epilepsy made it difficult for them to get a job. Scambler28 recently revisited his “hidden distress” model and concluded that it gives a credible, if limited, explanation of the stigma associated with epilepsy. Certainly, in studies done in more developed countries, felt stigma has been reported by up to 50% of people with epilepsy,90,93,94 suggesting that despite major clinical advances, it is still a major concern. The differing clinical realities (ie, differing amounts of seizure control) in more and less developed parts of the world may mean that felt stigma will be a greater worry to people with epilepsy in more developed countries than in less developed countries. Conversely, enacted stigma will worry people in less developed countries more than those in more developed countries.95 Attempts to reduce epilepsy stigma must therefore seek to address the relative weight with which these two distinct components are realised in particular sociocultural contexts.
Epilepsy, stigma, and quality of life The extent to which stigma has a negative affect on the quality of life of people with epilepsy has been documented in many studies, and is strongly associated with seizure control.93,96 For example, Jacoby and colleagues93 have shown a linear relation between stigma and quality of life in people with epilepsy who have had seizures in the past 2 years. Consistent with sociological theory about the “illness trajectory”,97 people’s progression through the clinical course of their disease also seems important for their quality of life. Jacoby and co-workers90,98,99 documented rates of felt stigma in individuals beginning to have seizures and in those with seizures in remission. Among those just diagnosed with epilepsy, a quarter reported feeling stigmatised, suggesting that they expected they would be treated http://neurology.thelancet.com Vol 4 March 2005
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80 Respondents who perceive stigma (%)
differently even though they had not yet experienced “being epileptic”. By the 2 year follow-up, only a tenth of those who had had no further seizures reported experiencing felt stigma, compared with 45% of those with continuing seizures. By contrast, among the group whose seizures had been in remission for at least 2 years, only 14% reported feeling stigmatised—a finding supported by minimum quality-of-life impairments in this group. A linear relation between epilepsy severity and stigma is challenged, however, by the work of Ryan and co-workers100 and Suurmeijer and colleagues,101 who found that clinical variables are mediated by non-clinical ones. Ryan and co-workers showed that the relation between stigma perceptions and epilepsy severity was highly dependent on factors such as education and the perception of limitations imposed by having epilepsy and seizures. Suurmeijer and colleagues report that in an analysis of factors contributing to overall quality of life, psychosocial variables such as psychological distress, coping and adjustment, and perceived stigma itself accounted for twice the amount of variance in scores as did clinical variables such as seizure frequency and side-effects of antiepileptic drugs. Such findings help to explain why a sense of stigma may persist for a few people with excellent seizure control, and highlights the need for a psychosocial as well as a medical approach to management of epilepsy. Substantial differences in reported amounts of felt stigma have been shown across cultures (figure).94 Differences in sociocultural biases against epilepsy, healthcare systems and amounts of care provision, and equal-opportunity provisions and legal protections for people with epilepsy may explain these differences. Although in many studies of the quality of life of people with epilepsy, the effects of stigma are only putative, some studies have included formal assessment. In a multi-causal model incorporating neurological, psychosocial, demographic, and treatment variables, stigma emerged as one of seven key predictor variables for psychopathology.102 Perceived stigma was fourth in importance in predicting quality of life, after psychological distress, loneliness, and adjustment, with a hierarchical regression analysis; clinical variables contributed little.101 Among adults with epilepsy, stigma was associated with impaired self-esteem, self-efficacy, and sense of mastery, with greater perceived helplessness, rates of anxiety and depression, and somatic symptomatology, and with reduced life satisfaction.16,90,93,103 A link between felt stigma and medication side-effects supported Scambler’s proposition about the potential for antiepileptic drugs to act as stigma cues.96 Among adolescents, stigma was associated with reduced self-esteem;104 although the findings of this study did not support several hypotheses about the link between stigma and self-esteem. For example, focal seizures, and not tonic-clonic seizures,
70 60 50 40 30 20 10 0 France
Germany
Italy
Netherlands
Spain
Sweden
Switzerland
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Figure: Perceptions of stigma among people with epilepsy in Europe Adapted from Baker and colleagues.94
were predictive of lower self-esteem and, contrary to stigma theory, there was no support for including disclosure management in the hypothesised model because no relation was shown between disclosure management and seizure type or frequency or epilepsy duration. These findings inevitably raise questions about the limitations of theory to life experience. Subsequently, Macleod and co-workers105 have argued that more in-depth narrative approaches are needed to identify alternative and previously unrecognised mechanisms by which stigma exerts its effects. In summary, research suggests that stigma is an important part of having epilepsy, particularly in resource-poor countries where traditional ideas about origin and peril persist. However, much of the theory on stigma in epilepsy is old and has generally not been extended in subsequent work. Further study of stigma in epilepsy across cultural contexts is needed, as is development measures that are cross-culturally valid and will enable understanding of stigma as it applies to this chronic disorder.
Reduction of stigma associated with epilepsy Epilepsy affects a range of quality-of-life factors. Many clinical variables, including cause, age of onset, duration, and seizure type, severity, and, most importantly, frequency affect quality of life;93,96,98,103,106 although they account for little of the variability in reported quality of life.102 This has challenged researchers to study the role of other social and demographic variables, in particular, the stigmatising nature of epilepsy91,107 and the potential for its social rather than clinical reality to be key in the burden associated with it. The continuing relevance of the concept of stigma is apparent from the various studies linking it to increased psychopathology, reduced social capital, and impaired quality of life.74,90,94,98,101,102,108–112 Weiss113 defines health-related stigma as a medically unwarranted, adverse judgement of a person. Medically 175
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Search strategy and selection criteria References for this review were identified, with the aid of an agreed search strategy, by conducting computerised searches of databases such as CINAHL (1982 onwards), MEDLINE (1966 onwards), EMBASE (1974 onwards), PsycINFO (1987 onwards), Allied and Complementary Medicine (1985 onwards), The Cochrane Library Issue 1 (2004), and the websites of the UK NICE, the UK DOH, and WHO. Search terms included: “epilepsy”, “chronic illness” or “chronic disease”, “stigma”, “prejudice” or “discrimination” or “social attitudes” or “social behaviour”, and “quality of life”. References were also identified from relevant articles and through searches of the authors’ own files. Library holdings were also searched for doctoral dissertations and clinicians, academics, and researchers were contacted to identify conference papers and unpublished or ongoing research. The search is current up to June 2004. Only papers published in English were reviewed. Exclusion criteria Single-case studies Articles published in a language other than English Research that relates to: ● infants or children ● people with a learning disability ● clinical drug trials ● non-epileptic seizures ● pre, post, or intraoperative assessment ● assessment of surgical interventions, drug therapy, sensorimotor measures, perceptual measures, memory or intelligence measures, physical disorders, exercise or physical activity regimes ● management of violence, aggression, behavioural disorder, depression, and schizophrenia ● identification of genetic and clinical characteristics of epilepsy ● stigma related to “belonging to a social group” (eg, born outside marriage, homosexuality), not stigma associated with chronic disorder
unwarranted, adverse judgements continue to be made about people with epilepsy and have been shown in education,114 employment,106 insurance,115,116 and 117 healthcare provision, particularly in many people in whom seizures can be well controlled. Efforts to reduce stigma need to focus both on those contributing to and those perceiving26 stigma in epilepsy. This must include educating people with epilepsy and their families to address the relation between knowledge, stigma, and adjustment118,119 as well as targeting the general public and the various organisations with which people with epilepsy connect.50 The role of the media in perpetrating misconceptions about epilepsy among the different perceiver groups120 must be addressed, perhaps with the help of health professionals. Parallel operation of public education and comprehensive treatment programmes in an African community successfully 176
changed attitudes to epilepsy: traditional beliefs about epilepsy were weakened, fears about epilepsy were diminished, and community acceptance of people with epilepsy increased.64 Similarly, in the Netherlands positive outcomes were reported for both knowledge and attitudes from three different educational methods: written material, visual presentation, and participation in group discussion.121 Disappointingly, the attitudinal changes were not sustained long-term, highlighting that stigma reduction is a highly complex process. Reduction of the stigma associated with epilepsy worldwide is a major focus of the current “Epilepsy: Out of the Shadows” initiative.18 By whatever means the task is accomplished, intervention campaigns must aim to address the continuing misperceptions and misinformation about epilepsy, and so increase the social value of people with epilepsy and ensure that it is no longer deemed as central to their social identity. Acknowledgments Authorship is on behalf of the CREST Study team and we would like to thank our colleagues for their support in writing this paper: Charles Begley, Hanneke de Boer, David Chadwick, Dang Vu Trung, Nguyen Thanh Huong, Leonid Prilipko, Ria Reis, Wenzhi Wang, Jian-zhong Wu. We also thank the US NIH for its financial support. Authors’ contributions GB, AJ, and DS agreed on the search strategy for the review and DS did both the electronic searches and those by hand. AJ and GB reviewed articles identified through the searches. AJ prepared the first draft of the review and revised it after GB and DS commented on it. Conflicts of interest We have no conflicts of interest. Role of the funding source This review is one output from a project funded by the US NIH under its “Brain Disorders in the Developing World” call. CREST (Collaborative Research on Epilepsy Stigma) is funded by the US NIH (R21 NS048839), to assess the nature of stigma in China and Vietnam. The references discussed in this review were identified from an extensive review that was done as part of the CREST Study. NIH had no role in the writing of this paper or in the decision to submit it for publication. References 1 Reynolds EH. ILAE/IBE/WHO epilepsy global campaign history. Epilepsia 2002; 43: 9–11. 2 Commission on Classification and Terminology, International League Against Epilepsy. Proposal for revised clinical and electroencephalographic classification of epileptic seizures. Epilepsia 1981; 22: 489–501. 3 Schachter SC. Overview of epilepsy and seizures. In : Schachter SC, ed. Brainstorms: epilepsy in our words. New York: Raven Press, 1993: 3–5. 4 Harrison RM, West P. Images of a grand mal. New Society 1977; 40: 762–82. 5 Jacoby A, Gorry J, Gamble C, Baker G. Public knowledge, private grief: a study of public attitudes to epilepsy in the UK and implications for stigma. Epilepsia 2004; 45: 1405–15. 6 Shorvon SD, Reynolds EH. Early prognosis of epilepsy. BMJ 1982; 285: 1699–1701. 7 Elwes RDC, Johnson AL, Shorvon SD, Reynolds EH. The prognosis of seizure control in newly diagnosed epilepsy. N Engl J Med 1984; 311: 944–47. 8 Placencia M, Sander JWAS, Roman M, et al. The characteristics of epilepsy in a largely untreated population in rural Ecuador. J Neurol Neurosurg Psychiatry 1994; 57: 320–25. 9 MRC Antiepileptic Drug Withdrawal Group. Randomised study of antiepileptic drug withdrawal in patients with remission. Lancet 1991; 337: 1175–80.
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11
12
13
14
15
16
17 18
19 20 21
22
23 24
25 26
27
28
29
30
31
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Berg AT, Shinnar S. The risk of recurrence following a first unprovoked seizure: a qualitative review. Neurology 1991; 41: 965–72. Sander JWAS, Sillanpaa M. Natural history and prognosis. In: Engel J, Pedley TA, eds. Epilepsy: a comprehensive textbook. Philadelphia: Lippincott-Raven,1997: 69–86. Lambert MV, David AS. Psychiatric comorbidity. In: Oxbury J, Polkey C, Duchowny M, eds. Intractable focal epilepsy. London: WB Saunders, 2000: 445–74. Jacoby A, Baker GA. Quality of life issues in intractable focal epilepsy. In: Oxbury J, Polkey C, Duchowny M, eds. Intractable focal epilepsy. London: WB Saunders, 2000: 419–36. International League Against Epilepsy. International classification of epilepsies and epileptic syndromes. New York: Raven Press, 1989. Aicardi J, Shorvon S. Intractable epilepsy. In: Engel J, Pedley TA, eds. Epilepsy: a comprehensive textbook. Philadelphia: LippincottRaven, 1997: 1325–31. Arnston P, Drodge D, Norton R, et al. The perceived psychosocial consequences of having epilepsy. In: Whitman S, Herman B, eds. Psychopathology in epilepsy: social dimensions. Oxford: Oxford University Press, 1986: 143–61. WHO. Epidemiology, aetiology and prognosis: fact sheet number 165. http://www.WHO.int (accessed Feb 2, 2005). Global Campaign Against Epilepsy. Out of the shadows: an introduction to the global campaign and its demonstration projects. Heemstede: GCAE, 2001. http://www.who.int/mental_health/ management/en/GcaeBroEn.pdf (accessed Feb 2, 2005). Goffman E. Stigma: notes on the management of spoiled identity. New Jersey: Prentice Hall, 1963. Durkheim E. The rules of sociological method. New York: Free Press, 1964. Neuberg SL, Smith SM, Asher T. Why people stigmatize: towards a biocultural framework. In: Heatherton TF, Kleck RE, Hebl MR, Hull JG, eds. The social psychology of stigma. New York: The Guilford Press, 2000: 31–61. Stangor C, Crandall CS. Threat and the social construction of stigma. In: Heatherton TF, Kleck RE, Hebl MR, Hull JG, eds. The social psychology of stigma. New York: The Guilford Press, 2000: 62–87. Weiner B. On sin versus sickness: a theory of perceived responsibility and social motivation. Am Psychol 1993; 48: 957–65. Crocker J, Major B, Steele C. Social stigma. In: Gilbert DT, Fiske ST, Gardner L, eds. The handbook of social psychology. Boston: McGraw Hill, 1998: 504–53. Falk G. Stigma: how we treat outsiders. New York: Prometheus, 2001. Dovidio JF, Major B, Crocker J. Stigma: introduction and overview. In: Heatherton TF, Kleck RE, Hebl MR, Hull JG, eds. The social psychology of stigma. New York: The Guilford Press, 2000: 1–30. Link BG, Phelan JC. On stigma and its public health implications. Paper presented at US NIH conference on stigma and global health: developing a research agenda, Bethesda MD, 2001. http://www.stigmaconference.nih.gov (accessed Feb 2, 2005). Scambler G. Re-framing stigma: felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Soc Theory Health 2004; 2: 29–46. Fabrega H, Manning PK. Disease, illness and deviant careers. In: Scott RA and Douglas JD, eds. Theoretical perspectives on deviance. New York: Basic Books, 1972. Field D. The social definition of illness. In: Tuckett D, ed. An introduction to medical sociology. London: Tavistock Publications, 1976: 334–66. Scambler G. Perceiving and coping with stigmatizing illness. In: Fitzpatick R, Hinton J, Newman S, Scrambler G, Thompson J, eds. The experience of illness. London: Tavistock, 1984: 203–26. Albrecht GL, Walker VG, Levy JA. Social distance from the stigmatised: a test of two theories. Soc Sci Med 1982; 16: 1319–27. Weiner B, Perry RP, Magnusson J. An attributional analysis of reactions to stigma. J Pers Soc Psychol 1988; 55: 738–48. Crandall CS, Moriatry D. Physical illness stigma and social rejection. Br J Soc Psychol 1995; 34: 67–83. Rush LL. Affective reactions to multiple social stigmas. J Soc Psychol 1998; 138: 421–30.
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Menec VH, Perry RP. Reactions to stigmas among Canadian students: testing an attribution-affect-help judgment model. J Soc Psychol 1998; 138: 443–53. Reidpath DD, Chan KY, Gifford SM, et al. ‘He hath the French Pox’: stigma, social value, and social exclusion. Sociol Health Illness 2005; (in press). Link BG, Stuening E, Cullen FT, et al. A modified labeling theory approach to mental-disorders: an empirical assessment. Am Sociol Rev 1989; 54: 400–23. Armstrong D. Outline of sociology as applied to medicine, 4th edn. London: Arnold, 2001. Merton RK. The self-fulfilling prophecy. Antioch Review 1948; 8: 193–210. Rosenthal R, Jacobson L. Pygmalion in the classroom: teacher expectations and student intellect development. New York: Holt, Rinehart & Winston, 1968. Williams T. Teacher prophecies and the inheritance of inequality. Sociol Educat 1976; 49: 223–26. Jacobs JE, Eccles JS. The impact of mothers’ gender-role stereotypic beliefs on mothers’ and childrens’ ability perceptions. J Pers Soc Psychol 1992; 63: 932–44. Sibicky M, Dovidio J. Stigma of psychological therapy: stereotypes, interpersonal reaction and the self-fulfilling prophecy. J Counsel Psychol 1986; 33: 148–54. Jussim L, Palumbo P, Chatman C et al. Stigma and self-fulfilling prophecies. In: Heatherton TF, Kleck RE, Hebl MR, Hull JG, eds. The social psychology of stigma. New York: The Guilford Press, 2000: 374–418. Link BG. Understanding labelling effects in the area of mentaldisorders: an assessment of the effects of expectations of rejection. Am Sociol Rev 1987; 52: 96–112. Temkin O. The falling sickness. Baltimore: John Hopkins Press, 1971. Ziegler RG. Epilepsy: individual illness, human predicament and family dilemma. Fam Rel 1982; 31: 435–44. Bagley C. Social prejudice and the adjustment of people with epilepsy. Epilepsia 1972; 13: 33–45. Trostle JA. Social aspects: stigma, beliefs and measurement. In: Engel J Jr, Pedley TA, eds. Epilepsy: a comprehensive text book. Philadelphia: Lippencott-Raven, 1997: 2183–90. Ablon J. The nature of stigma and medical conditions. Epilepsy Behav 2002; 3: S2–9. Scambler G. Epilepsy. London: Tavistock, 1989. Gunn J, Fenton G. Epilepsy in prisons: a diagnostic survey. BMJ 1969; 4: 326–28. Rodin EA. Psychomotor epilepsy and aggressive behaviour. Arch Gen Psychiatry 1973; 28: 210–13. Bear D, Freeman R, Greenberg M. Behavioural alterations in patients with temporal lobe epilepsy. In: Blumer D, ed. Psychiatric aspects of epilepsy. Washington, DC: American Psychiatric press, 1984. Reis R. Epilepsy and self-identity among the Dutch. Med Anthropol 2001; 19: 355–82. Blumer D, Altshuler LL. Affective Disorders. In: Engel J Jr, Pedley TA, eds. Epilepsy: a comprehensive text book. Philadelphia: Lippincott-Raven Publishers, 1997: 2083–99. Corbett JA. Epilepsy and mental handicap. In: Laidlaw J, Richens A, Oxley J, eds. A textbook of epilepsy, 3rd ed. Edinburgh: Churchill Livingstone, 1988: 533–38. Coulter D. Epilepsy and mental retardation: an overview. Am J Ment Retard 1993; 98 (suppl): 27–33. Aldenkamp AP, Baker GA, Meador KJ. Neuropsychology of epilepsy: what are the factors involved? Epilepsy Behav 2004; 7 (suppl 1): 1–53. Jones EE, Farina A, Hastorf AH, et al. Social stigma: the psychology of marked relationships. New York: Freeman, 1984. Jochim G, Acorn S. Living with chronic illness: the interface of stigma and normalisation. Can J Nurs Res 2000; 32: 37–48. Conrad P. Epilepsy in Indonesia: notes from development. Cent Iss Anthropol 1992; 10: 94–102. JilekAall L, Jilek M, Kaaya J, et al. Psychosocial study of epilepsy in Africa. Soc Sci Med 1997; 45: 783–95. Peltzer K. Perceptions of epilepsy among black students at a university in South Africa. Curationis 2001; 24: 62–67.
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Schachter SC. Overview of epilepsy and seizures. In: Schachter SC, Anderman LF, eds. The brain storms village: epilepsy in our world. Philadelphia: Lippincott, Williams & Wilkins, 2003: 1–4. Austin JK, Shafer PO, Deering JB. Epilepsy familiarity, knowledge and perceptions of stigma: report from a survey of adolescents in the general population. Epilepsy Behav 2002; 3: 368–75. Das V. Stigma, contagion, defect: issues in the anthropology of public health. Paper presented at US NIH conference on stigma and global health: developing a research agenda, Bethesda MD, 2001. http://www.stigmaconference.nih.gov (accessed Feb 2, 2005). Charmaz K. Experiencing chronic illness. In: Albrecht GL, Fitzpatrick R, Scrimshaw SC, eds. The handbook of social studies in health and medicine. London: Sage, 2000: 277–92. Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illness 1983; 5: 168–97. Schneider JW, Conrad P. Having epilepsy: the experience and control of illness. Philadelphia: Temple University Press, 1983. Kleck RE. Self-disclosure patterns of non-obviously stigmatized. Psychol Rep 1968; 23: 1239–48. West P. Investigation into the Social Construction and consequences of the label “epilepsy”. PhD thesis, University of Bristol, 1979. Kleinman A, Wang WZ, Li SC, et al. The social course of epilepsy: chronic illness as social experience in interior China. Soc Sci Med 1995; 40: 1319–30. Caveness WF, Gallup GH. A survey of public attitudes towards epilepsy in 1979 with an indication of trends over the past thirty years. Epilepsia 1980; 21: 509–18. Iivanainen M, Vutela A, Vilkkumaa I. Public awareness and attitudes towards epilepsy in Finland. Epilepsia 1980; 21: 413–23. Canger R, Cornaggia C. Public attitudes towards epilepsy in Italy: results of a survey and comparison with USA and West German data. Epilepsia 1985; 26: 221–26. Jensen R, Dam M. Public attitudes toward epilepsy in Denmark. Epilepsia 1992; 33: 459–63. Mirnics Z, Czikora G, Zavecz T, et al. Changes in public attitudes toward epilepsy in Hungary: results of surveys conducted in 1994 and 2000. Epilepsia 2001; 42: 86–93. Fong CG, Hung A. Public awareness, attitude, and understanding of epilepsy in Hong Kong Special administrative region, China. Epilepsia, 2002; 43: 311–16. Hills MD, MacKenzie HC. New Zealand community attitudes toward people with epilepsy. Epilepsia 2002; 43: 1583–89. Novotna I, Rektor I. The trend in public attitudes in the Czech Republic towards persons with epilepsy. Eur J Neurol 2002; 9: 535–40. Hicks RA, Hicks MJ. Attitudes of major employers towards the employment of people with epilepsy: a thirty year study. Epilepsia 1991; 32: 86–88. Beran RG, Frith J, Harris M. Practices and perspectives of Australian general practitioners pertaining to epilepsy after a decade of intervention. Seizure 1992; 1: 13 (abstr). Baumann RJ, Wilson JF, Weise HJ. Kentuckians’ attitudes toward children with epilepsy. Epilepsia 1995; 36: 1003–08. Pryor JB, Reeder GD, Landau S. A social-psychological analysis of HIV-related stigma: a two-factor theory. Am Behav Scientist 1999; 42: 1193–1211. Corrigan PW, Watson AC, Ottati V. From whence comes mental illness stigma? Int J Soc Psychiatry 2003; 49: 142–57. Troster H. Disclose or conceal? Strategies of information management in persons with epilepsy. Epilepsia 1997; 38: 1227–37. Troster H. Coping with the stigma of epilepsy. Psychol Health Med 1998; 3: 149–61. Jacoby A. Felt versus enacted stigma: a concept revisited. Soc Sci Med 1994; 38: 269–74. Scambler G, Hopkins A. Being epileptic: coming to terms with stigma. Sociol Health Illness 1986; 8: 26–43. Scambler G, Hopkins A. Generating a model of epileptic stigma: the role of qualitative analysis. Soc Sci Med 1990; 30: 1187–94. Jacoby A, Baker GA, Steen N, Potts P. Chadwick D. The clinical course of epilepsy and its psychosocial correlates: findings from a UK community study. Epilepsia 1996; 37: 148–61. Baker GA, Brooks J, Buck D, et al. The stigma of epilepsy: a European perspective. Epilepsia 2000; 41: 98–104.
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Reis R, Meinardi H. Stigma: does the flag identify the cargo? Epilepsy Behav 2002; 3: S33–37. Baker GA, Jacoby A, Buck D, et al. Quality of life of people with epilepsy: a European study. Epilepsia 1997; 38: 353–62. Corbin J, Strauss AL. Accompaniments of chronic illness: changes in body, self, biography and biographical time. In: Roth JA, Conrad P, eds. The sociology of health care. Greenwich: JAI Press Inc, 1987. Jacoby A. Epilepsy and the quality of everyday life. Soc Sci Med, 1992; 38: 261–74. Jacoby A, Chadwick D, Doughty J. Social consequences of epilepsy: findings from the UK MRC study of early epilepsy and single seizures. Epilepsia 2001; 42 (suppl 2): S9. Ryan R, Kempner K, Emlen AC. The stigma of epilepsy as a selfconcept. Epilepsia 1980; 21: 433–44. Suurmeijer TPBM, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy. Epilepsia 2001; 42: 1160–68. Hermann BP, Whitman S, Wyler AR, et al. Psychosocial predictors of psychopathology in epilepsy. Br J Psychiatry 1990; 156: 98–105. Dilorio C, Shafer PO, Letz R, et al. The association of stigma with self-management and perceptions of health care among adults with epilepsy. Epilepsy Behav 2003; 4: 259–67. Westbrook LE, Bauman LJ, Shinnar S. Applying stigma theory to epilepsy: a test of a conceptual model. J Pediatr Psychol 1992; 17: 633–49. MacLeod JS, Austin JK. Stigma in the lives of adolescents with epilepsy: a review of the literature. Epilepsy Behav 2003; 4: 112–17. Ratsepp M, Oun A, Haldre S, et al. Felt stigma and impact of epilepsy on employment status among Estonian people: exploratory study. Seizure, 2000; 9: 394–401. Dell JL. Social dimensions of epilepsy: stigma and response. In: Whitman S, Hermann B, eds. Psychopathology in epilepsy: social dimensions. Oxford: Oxford University Press, 1986: 185–210. Aziz H. Epilepsy in Pakistan: stigma and psychosocial problems— a population-based epidemiological study. Epilepsia 1997; 38: 1069–73. Collings J. Psychosocial well-being and epilepsy: an empirical study. Epilepsia 1990; 31: 418–26. Collings JA. Epilepsy and well-being. Soc Sci Med 1990; 31: 165–70. Wiebe S, Bellhouse DR, Fallahay C, et al. Burden of Epilepsy: the Ontario health survey. Can J Neurol Sci 1999; 26: 263–70. Birbeck GL, Kim S, Hays R. Quality of life measures in epilepsy: how well can they detect a change over time? Neurology 2000; 54: 1822–27. Weiss MG, Ramakrishna J. Interventions: research on reducing stigma. Paper presented at US NIH conference on stigma and global health: developing a research agenda, Bethesda MD, 2001. http://www.stigmaconference.nih.gov (accessed Feb 2, 2005). Gallhofer B. Epilepsy and its prejudice: teachers’ knowledge and opinions—are they a response to psychopathological phenomena? Psychopathology 1984; 17: 187–212. Thorbecke R. Private insurance for people with epilepsy in Europe. In: Cornaggia CM, Beghi E, De Boer H, Hauser AW, Sonnen AEH, Thorbecke R, eds. Risks in Epilepsy: Questions concerning insurability. Heemstede: International Bureau for Epilepsy, 1997. Jacoby K, Jacoby A. Epilepsy and insurance in the UK: an exploratory survey of the experiences of people with epilepsy. Epilepsy Behav 2004; 5: 884–93. Chadwick DW. Quality of life and quality of care in epilepsy. RSM round table series number 23. London: Royal Society of Medicine, 1990. Al Adawi S, Al Salmy H, Martin RG, et al. Patient’s perspective on epilepsy: self knowledge among Omanis. Seizure 2003; 12: 11–18. Doughty J, Baker GA, Jacoby A, Lavaud V. Cross-cultural differences in levels of knowledge about epilepsy. Epilepsia, 2003; 44: 115–23. Krauss Gl, Gondek S, Krumholz A, et al. “The Scarlet E”: the presentation of epilepsy in the English language print media. Neurology 2000; 54: 1894-98. Gutteling JM, Seydel ER, Wiegman O. Previous experiences with epilepsy and effectiveness of information to change public perception of epilepsy. Epilepsia 1986; 27: 739–45.
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Epilepsy and social identity: the stigma of a chronic neurological disorder Lancet Neurol 2005; 4: 171–78
Ann Jacoby, Dee Snape, Gus A Baker
Epilepsy is the most common serious neurological disorder worldwide, affecting about 50 million people.1 In most people with epilepsy, the disorder is clinically benign. However, because of the stigma associated with having epilepsy, which is common to many cultures, there can be a negative effect on the social identity of people with the disorder, particularly for those living in resource-poor countries. In this paper, we present general theories of stigma, as well as those specific to chronic illness. We relate these theories to the stigma associated with epilepsy throughout history and across cultures. We review research on the relation between stigma and the overall quality of life of people with epilepsy. Finally, we address reduction of the stigma. The fundamental characteristic of epilepsy is recurrent, unprovoked seizures. Epileptic seizures are broadly classified into those where the onset is partial (ie, where epileptic activity begins in one hemisphere of the brain) and those that are generalised (ie, where there is initial involvement of both hemispheres).2 The various seizure types within these broad groupings differ depending on precisely where in the brain epileptic activity starts and how far it spreads. Thus, seizures vary from brief lapses of attention to severe and long lasting convulsions.3 Despite such variation, lay people’s perceptions of epilepsy are most commonly of generalised seizures: the classic and dramatic “grand mal”.4,5 Large-scale incidence studies of people with epilepsy, including systematic follow-up, have found that in most of those affected, seizures can be effectively treated with antiepileptic drugs,6–8 and that after seizure remission, drug treatment can be withdrawn.9–10 Thus, epilepsy is a generally benign disorder with excellent clinical prognosis.11 However, in 20–30% of people, seizures will be intractable to treatment and are associated with a high risk of psychiatric comorbidity12 and low quality of life.13 Intractability is not evenly distributed across the population of people with epilepsy; it is more common in particular epilepsy syndromes,14 for particular causes, and for particular seizures types.15 Epilepsy is not just a clinical disorder but a social label;16 and a wealth of research supports the view that the social prognosis of epilepsy may be less optimistic than the clinical one, particularly for the four-fifths of affected people who live in the world’s resource-poor countries17 and for those with intractable seizures.13 The role of stigma in forming the social prognosis of people with epilepsy—increasingly the focus of public campaigns18—is the focus of this paper. We review research findings on the nature of stigma in epilepsy and the negative affect of stigma on the quality of life of people with epilepsy.
Theories of stigma Goffman19 defines stigma as “an undesired differentness”. People are stigmatised because they have an attribute that is undesired and so “deeply discrediting”. This attribute http://neurology.thelancet.com Vol 4 March 2005
Division of Public Health (Prof A Jacoby PhD, D Snape MA) and Division of Neurosciences (Prof G A Baker FBPsS), University of Liverpool, UK Correspondence to: Prof Ann Jacoby, Division of Public Health, Whelan Building, The Quadrangle, Brownlow Hill, Liverpool L69 3GB, UK [email protected]
represents a discrepancy between the person they might be and the person they are—in Goffman’s words, between their virtual and actual social identity. Goffman identifies three different types of stigma: the tribal stigmas of race and religion, blemishes of individual character, and abominations of the body. Whichever of these prevails, Goffman argues that the stigmatised person is seen by others as “not quite human” and so a legitimate target for discrimination. These others, the so-called “normals”, construct “a stigma theory, an ideology to explain the person’s inferiority and account for the danger the person represents”, and might also “impute a wide range of imperfections on the basis of the original one”. Goffman notes that even though stigmatised people may attempt to rid themselves of this “contaminated” social identity, they cannot reacquire the status of normal, only that of one who was once contaminated. In this theory, stigma is ineradicable and the social identity of the stigmatised person is permanently flawed. The concept of stigma can be traced in sociological thought to Durkheim,20 who argued that by demarking the boundary between the normal and the deviant, stigma and the process of stigmatisation emphasise a sense of unity and community in any social group. Although embracing this functionalist perspective on stigma, later authors have suggested that its cause involves something more. Stigma may be rooted in the biologically based need to live in effective groups21— individuals perceived to violate group norms of reciprocity, trust, or preferred socialisation practices, hence threatening group functioning, will be stigmatised. Consistent with this theory, thieves violate the principle of reciprocity, those who cheat violate the principle of trust, and people with chronic illness might violate preferred social values. Similarly, stigma might involve delineation of characteristics that pose tangible or symbolic threats to an individual or a culture, including physical, moral, and health threats.22 Stangor and Crandall22 highlight the universality of certain stigmas—such as that associated with facial disfigurement—concluding that they may be “hardwired” as threats. However, they and others23–26 also highlight the cultural and temporal nature of many 171
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stigmas: what is defined as stigma and negative social identity varies from one social group to another and from one time to another. Being overweight, for example, is highly valued in most societies where food is scarce, but is now highly stigmatising in affluent societies where it is defined as a major and largely self-inflicted health problem. Common to theories of stigma is the emphasis on a social group process. Additionally, stigma theorists have highlighted the previously neglected role of power relations in the social construction of stigma.27,28 The labelling, stereotyping, separation from others, and consequent status loss that are key elements of stigma become relevant only “in a power situation that allows them to unfold” (panel 1).27 “Cultural norms of identity or being,”28 which denounced and oppressed people, including those with chronic illness, need to be assessed in sociohistorical contexts.
Chronic illness as stigma Sociological taxonomies include stigma as a component of chronic illness.29–31 For example, Field30 differentiates four distinct categories of illness: acute, chronic nonstigmatising, chronic stigmatising, and mental. Features that differentiate chronic stigmatising illnesses from chronic non-stigmatising ones include: the degree of difficulty others have in interpreting the symptoms, the degree to which the illness becomes a central part of identity, and the severity and persistence of the social consequences. Albrecht and colleagues32 propose that the amount of stigma associated with chronic illness is determined by two separate and distinct components: the attribution of responsibility for the stigmatising illness and the degree to which it creates discomfort in social interactions. Albrecht and colleagues32 suggested that the latter is the best explanation of the differential degrees of social distance maintained by people in relation to various stigmatised groups, whereas other authors33–35 have proposed that perception of control and responsibility is key in stigma. For example, when people were asked to rate a range of chronic illnesses across many dimensions (eg, contagious or non-contagious, rare or common) and attribution of responsibility, along with illness severity, were central to the amount of stigma associated with illnesses.34 Furthermore, the affective reactions of others vary with their perceptions of causality.23,33,36 Thus, physical disorders, the onset of which were perceived to be uncontrollable, elicited pity and assistance, whereas mental and behavioural disorders, in which the onset was perceived to be controllable and in some way the responsibility of the affected person, elicited anger and neglect. More recently, Reidpath and co-workers,37 who take a social-structural perspective instead of a socialinteractionist one, have suggested that stigma is part of chronic illness because individuals who are chronically ill have less “social value” than healthy individuals. In their analysis, those unable to engage in the process of 172
Panel 1: Components of a stigma27 1. People differentiate and label socially important human differences 2. Dominant cultural beliefs link label people with negative stereotypes (eg, people with mental illness are a danger to others) 3. People who have been labelled are placed in distinct categories (eg, “fat”, “disabled”, “epileptic”) to separate them from others 4. People who have been labelled experience status loss and discrimination (eg, unequal health and socioeconomic outcomes) 5. Social, economic, and political power enables components 1–4 (ie, those in positions of low power cannot impose labels, stereotypes, separation, or status loss)
“reciprocal exchange” because of ill health are deemed to have low social value and so stigmatised. Furthermore, Reidpath and co-workers argue that to simplify the identification of good and poor reciprocators, societies stigmatise whole categories of people perceived to have poor social value, rather than individuals. Thus, simply having a chronic illness will automatically be accompanied by a loss in social value, even when the course of the illness is benign and there is little accompanying functional loss. Stigma from illness could be something of a selffulfilling prophecy.38,39 Research has generally found that the self-fulfilling prophecy (when belief in something that is not true leads to its fulfilment)40 is real in relation to educational attainment,41,42 gender behaviour,43 and mental illness,44 although meta-analyses suggest the effect size of self-fulfilling prophecies in contributing to the maintenance of stigma is modest.45 Nonetheless, Link46 hypothesises that individuals with a potentially stigmatising illness assume from prevailing illness stereotypes and lay people’s theories that they will be devalued and discriminated against; they then adopt coping strategies to address these assumptions, typically secrecy and social withdrawal, which have marked negative consequences for quality of life, and hence reinforce their feeling of stigma. However, these internal psychosocial processes are insufficient to explain the experience of illness stigma and its knock-on effects on quality of life. Link and Phelan27 point out that stigma leads to direct and indirect discriminatory behaviour by others that can substantially reduce the opportunities for people who are stigmatised. Whatever the mechanisms involved, stigma is an important public-health issue. Stigma is a cause of disease; people who are stigmatised have high exposure to health risks and low access to protective factors and treatment. The disease process is exacerbated by stigma-related stress.27 Stigma is therefore a potentially major, if not easily quantifiable, contributor to illness burden. http://neurology.thelancet.com Vol 4 March 2005
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Epilepsy as stigmatising illness In his account of social representations of epilepsy, Temkin47 showed that, with few exceptions, epilepsy has been a discredited disorder across both time and place, which leads to the question of whether human beings are “hard-wired” for the threat of seizures. Potential explanations for such hard-wiring centre on the fear seizures can invoke in others—those described by Vizioli in Ziegler48 as “the terrified watchers”. By losing control, people with seizures are seen as “reverting to the primitive”, and hence as representing “anomic terror” to those without seizures.49 By representing human weakness and unpredictability, they are seen as “uniquely dangerous”50 and an affront to societal values.51 Seizures affront social order through their unpredictability, typically dramatic presentation, and the sense of impotence they induce in others.52 Such explanations rely on a powerful stereotype in which all seizures are generalised and all patients have chronic and incapacitating epilepsy, and the diversity of epilepsy and the associated seizures are ignored. Nonetheless, the relevance of these explanations is supported by research showing that many lay people have this stereotype.4,5 Another persistent stereotype seems to be that epilepsy is a mental illness: historically, in westernallopathic medicine, psychiatrists treated epilepsy. In resource-poor countries, psychiatrists commonly treat epilepsy. By contrast with the sociological taxonomies,30 which place epilepsy in the category of chronicstigmatising illness, the categorisation of this disorder by lay people’s taxonomies is unclear—eg, even in the 21st century in the UK a substantial minority of the general public seem to regard epilepsy as a mental, rather than a physical, disorder.5 Furthermore, Goffman’s proposition that a wide range of imperfections will be attributed to the stigmatised person because they have a disorder is reflected in biomedical theories about epilepsy—eg, a relation between epilepsy and criminal or violent behaviour.53,54 Such reasoning was central to the “epileptic personality”55—people with epilepsy were thought to have a range of undesirable tendencies in addition to seizures, including aggressiveness, hyper-religiosity, and hypersexuality. That these scientific ideas about epilepsy, however fundamentally flawed, carried over into negative public connotations, has been shown by many studies of lay people’s knowledge and attitudes to epilepsy. In the UK surveys by Harrison and West4 and Scambler,52 for example, people with epilepsy were commonly characterised as aggressive and potentially violent, retarded, weak, sluggish, slow, antisocial, and physically unattractive. Reis56 argues that although these classic stereotypes of epilepsy may have ceased to have resonance, they have given way to new stereotypes in which people with epilepsy are regarded as introverted, less open than others, and over-anxious. The generalised application of such stereotypes, even if grounded in the http://neurology.thelancet.com Vol 4 March 2005
current biomedical evidence base (eg, associations between epilepsy and psychological morbidity,57 learning disability,58,59 and drug-related cognitive impairments60), continues to disquiet people with epilepsy. Theoretical work on stigma has tended to emphasise two important dimensions, visibility or concealability and course or controllability,24,61,62 both of which have high relevance to epilepsy. Seizures, particularly those that are generalised, may be difficult to conceal and may become more prominent over time. Four additional dimensions of stigma have been proposed: disruptiveness, aesthetics, origin, and peril, and each relates to the stigma associated with epilepsy (panel 2).61 Seizures are clearly disruptive to social interaction; and depending on their specific manifestations may also be aesthetically unpleasant. The legacy of the idea that epilepsy is the product of sin and possession means that the cause of epilepsy is ambiguous, and although seizures present far greater dangers to those with epilepsy than those without it, the issue of peril is echoed in old ideas of epilepsy as a contagion.47 Such ideas, though no longer generally held in western countries, are still dominant in the resource-poor ones, where most of those affected live, and commonly lead to their social ostracism.63–65 A major implication for people with epilepsy who live in resource-poor countries is that they are commonly not protected during seizures, so have high chances of serious seizurerelated accidents, and their disorder tends to be visible to others. Even in more developed countries, because no definitive cause of epilepsy can be found in many patients66 misattributions ensue—22% of American adolescents studied confessed they did not know whether epilepsy is a contagious disorder.67
Panel 2: Dimensions of stigma61 Concealability Extent to which the disorder associated with stigma is visible to others Course of the mark Whether the disorder becomes more salient over time Disruptiveness The degree to which the disorder interferes with social interactions Aesthetics Subjective reactions of others to the unattractiveness of the stigmatising disorder Origin Whether others think the disorder is congenital, accidental, or intentional Peril The perceived danger of the disorder to others
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Das68 argues that whereas a sense of loss69,70 is the focus for people with non-stigmatising chronic illness or disability, those with stigmatising illness mostly experience guilt and shame. The idea that stigmatising disorders symbolise a threat to the moral universe is highly relevant to epilepsy.52,71 Schneider and Conrad71 reported that informants in their research, who were cognisant of epilepsy as a new “moral weight” and not simply a clinical label, perceived having it as far more than simply having seizures. These and other researchers72,73 also described the way in which family members acted as the arbiters of the moral meaning of epilepsy, repeatedly instilling a feeling of shame and guilt in those with the disorder. Kleinman74 has described how in Chinese cultures, the moral weight attached to epilepsy not only applied to the affected person, but also threatened familial aspirations and life chances through a process of “courtesy stigma”:19 because of fear of family disgrace, people with epilepsy were typically kept at home and their diagnosis was kept secret. Many surveys have documented improvements over time in attitudes to epilepsy, both among the general public5,75–82 and among population subgroups, such as employers83 and healthcare professionals84 suggesting that its weight in “local moral worlds”68 has lessened. For example, in the USA,75 public affirmation for questions about whether they would object to their child playing with one who had epilepsy, and whether people with epilepsy should be barred from employment in the same jobs as others, decreased from 24% and 35%, respectively, in 1949 to 6% and 9% in 1979. Interestingly, despite changes in public attitude, epilepsy evokes greater responses to rejection than other chronic disorders, even deeply stigmatising diseases such as AIDS and mental illness.49,85–87 In Goffman’s analysis of stigma, he makes the distinction between disorders that are discrediting and discreditable: the former are immediately obvious to others and in the latter the stigma is not immediately perceivable. Because the physical manifestations of epilepsy—seizures—are transient, epilepsy is a discreditable disorder. The main management issue for people with a discreditable disorder is information control.19 Many people with epilepsy contrive complex accounts of their symptoms to disguise the disorder, which they know to be stigmatising;52,71 although secrecy seems to be the main strategy, it seems to be situationspecific rather than a generalised response.88,89 Goffman also suggested that people who are stigmatised will try to rid themselves of the stigma—in the case of epilepsy, by seeking treatment to control their seizures. The problem that Goffman identified of being “one who was once contaminated” may not affect people with epilepsy: if it is not curable, only controllable, the threat of “contamination” can never be entirely ruled out. Interestingly, whereas some people with epilepsy seem to admit to the permanence of epilepsy stigma, there is 174
also evidence that others put it aside whatever their clinical prognosis.90 Scambler has made an important theoretical distinction52,91,92 between stigma that is felt (ie, the shame of being epileptic and the fear of encountering enacted stigma) and stigma that is enacted (ie, actual episodes of discrimination, both formal and informal, against people with epilepsy solely on the grounds of their having epilepsy). Scambler proposes a “hidden distress” model wherein people with epilepsy, fearful of experiencing enacted stigma, pursue an active policy of non-disclosure. By doing so, they both reduce the likelihood of encountering enacted stigma and increase the stress of managing their disorder, with the result that stigma has a far more disruptive effect on their lives. In Scambler’s study, almost everyone reported stigma that is felt, even if only intermittently.52 One of us90 subsequently explored the distinction between felt and enacted stigma in a large cohort of people with epilepsy in remission and found further support for it: whereas only very small percentages of respondents attributed specific employment problems to having epilepsy, a third thought that having epilepsy made it difficult for them to get a job. Scambler28 recently revisited his “hidden distress” model and concluded that it gives a credible, if limited, explanation of the stigma associated with epilepsy. Certainly, in studies done in more developed countries, felt stigma has been reported by up to 50% of people with epilepsy,90,93,94 suggesting that despite major clinical advances, it is still a major concern. The differing clinical realities (ie, differing amounts of seizure control) in more and less developed parts of the world may mean that felt stigma will be a greater worry to people with epilepsy in more developed countries than in less developed countries. Conversely, enacted stigma will worry people in less developed countries more than those in more developed countries.95 Attempts to reduce epilepsy stigma must therefore seek to address the relative weight with which these two distinct components are realised in particular sociocultural contexts.
Epilepsy, stigma, and quality of life The extent to which stigma has a negative affect on the quality of life of people with epilepsy has been documented in many studies, and is strongly associated with seizure control.93,96 For example, Jacoby and colleagues93 have shown a linear relation between stigma and quality of life in people with epilepsy who have had seizures in the past 2 years. Consistent with sociological theory about the “illness trajectory”,97 people’s progression through the clinical course of their disease also seems important for their quality of life. Jacoby and co-workers90,98,99 documented rates of felt stigma in individuals beginning to have seizures and in those with seizures in remission. Among those just diagnosed with epilepsy, a quarter reported feeling stigmatised, suggesting that they expected they would be treated http://neurology.thelancet.com Vol 4 March 2005
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80 Respondents who perceive stigma (%)
differently even though they had not yet experienced “being epileptic”. By the 2 year follow-up, only a tenth of those who had had no further seizures reported experiencing felt stigma, compared with 45% of those with continuing seizures. By contrast, among the group whose seizures had been in remission for at least 2 years, only 14% reported feeling stigmatised—a finding supported by minimum quality-of-life impairments in this group. A linear relation between epilepsy severity and stigma is challenged, however, by the work of Ryan and co-workers100 and Suurmeijer and colleagues,101 who found that clinical variables are mediated by non-clinical ones. Ryan and co-workers showed that the relation between stigma perceptions and epilepsy severity was highly dependent on factors such as education and the perception of limitations imposed by having epilepsy and seizures. Suurmeijer and colleagues report that in an analysis of factors contributing to overall quality of life, psychosocial variables such as psychological distress, coping and adjustment, and perceived stigma itself accounted for twice the amount of variance in scores as did clinical variables such as seizure frequency and side-effects of antiepileptic drugs. Such findings help to explain why a sense of stigma may persist for a few people with excellent seizure control, and highlights the need for a psychosocial as well as a medical approach to management of epilepsy. Substantial differences in reported amounts of felt stigma have been shown across cultures (figure).94 Differences in sociocultural biases against epilepsy, healthcare systems and amounts of care provision, and equal-opportunity provisions and legal protections for people with epilepsy may explain these differences. Although in many studies of the quality of life of people with epilepsy, the effects of stigma are only putative, some studies have included formal assessment. In a multi-causal model incorporating neurological, psychosocial, demographic, and treatment variables, stigma emerged as one of seven key predictor variables for psychopathology.102 Perceived stigma was fourth in importance in predicting quality of life, after psychological distress, loneliness, and adjustment, with a hierarchical regression analysis; clinical variables contributed little.101 Among adults with epilepsy, stigma was associated with impaired self-esteem, self-efficacy, and sense of mastery, with greater perceived helplessness, rates of anxiety and depression, and somatic symptomatology, and with reduced life satisfaction.16,90,93,103 A link between felt stigma and medication side-effects supported Scambler’s proposition about the potential for antiepileptic drugs to act as stigma cues.96 Among adolescents, stigma was associated with reduced self-esteem;104 although the findings of this study did not support several hypotheses about the link between stigma and self-esteem. For example, focal seizures, and not tonic-clonic seizures,
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Figure: Perceptions of stigma among people with epilepsy in Europe Adapted from Baker and colleagues.94
were predictive of lower self-esteem and, contrary to stigma theory, there was no support for including disclosure management in the hypothesised model because no relation was shown between disclosure management and seizure type or frequency or epilepsy duration. These findings inevitably raise questions about the limitations of theory to life experience. Subsequently, Macleod and co-workers105 have argued that more in-depth narrative approaches are needed to identify alternative and previously unrecognised mechanisms by which stigma exerts its effects. In summary, research suggests that stigma is an important part of having epilepsy, particularly in resource-poor countries where traditional ideas about origin and peril persist. However, much of the theory on stigma in epilepsy is old and has generally not been extended in subsequent work. Further study of stigma in epilepsy across cultural contexts is needed, as is development measures that are cross-culturally valid and will enable understanding of stigma as it applies to this chronic disorder.
Reduction of stigma associated with epilepsy Epilepsy affects a range of quality-of-life factors. Many clinical variables, including cause, age of onset, duration, and seizure type, severity, and, most importantly, frequency affect quality of life;93,96,98,103,106 although they account for little of the variability in reported quality of life.102 This has challenged researchers to study the role of other social and demographic variables, in particular, the stigmatising nature of epilepsy91,107 and the potential for its social rather than clinical reality to be key in the burden associated with it. The continuing relevance of the concept of stigma is apparent from the various studies linking it to increased psychopathology, reduced social capital, and impaired quality of life.74,90,94,98,101,102,108–112 Weiss113 defines health-related stigma as a medically unwarranted, adverse judgement of a person. Medically 175
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Search strategy and selection criteria References for this review were identified, with the aid of an agreed search strategy, by conducting computerised searches of databases such as CINAHL (1982 onwards), MEDLINE (1966 onwards), EMBASE (1974 onwards), PsycINFO (1987 onwards), Allied and Complementary Medicine (1985 onwards), The Cochrane Library Issue 1 (2004), and the websites of the UK NICE, the UK DOH, and WHO. Search terms included: “epilepsy”, “chronic illness” or “chronic disease”, “stigma”, “prejudice” or “discrimination” or “social attitudes” or “social behaviour”, and “quality of life”. References were also identified from relevant articles and through searches of the authors’ own files. Library holdings were also searched for doctoral dissertations and clinicians, academics, and researchers were contacted to identify conference papers and unpublished or ongoing research. The search is current up to June 2004. Only papers published in English were reviewed. Exclusion criteria Single-case studies Articles published in a language other than English Research that relates to: ● infants or children ● people with a learning disability ● clinical drug trials ● non-epileptic seizures ● pre, post, or intraoperative assessment ● assessment of surgical interventions, drug therapy, sensorimotor measures, perceptual measures, memory or intelligence measures, physical disorders, exercise or physical activity regimes ● management of violence, aggression, behavioural disorder, depression, and schizophrenia ● identification of genetic and clinical characteristics of epilepsy ● stigma related to “belonging to a social group” (eg, born outside marriage, homosexuality), not stigma associated with chronic disorder
unwarranted, adverse judgements continue to be made about people with epilepsy and have been shown in education,114 employment,106 insurance,115,116 and 117 healthcare provision, particularly in many people in whom seizures can be well controlled. Efforts to reduce stigma need to focus both on those contributing to and those perceiving26 stigma in epilepsy. This must include educating people with epilepsy and their families to address the relation between knowledge, stigma, and adjustment118,119 as well as targeting the general public and the various organisations with which people with epilepsy connect.50 The role of the media in perpetrating misconceptions about epilepsy among the different perceiver groups120 must be addressed, perhaps with the help of health professionals. Parallel operation of public education and comprehensive treatment programmes in an African community successfully 176
changed attitudes to epilepsy: traditional beliefs about epilepsy were weakened, fears about epilepsy were diminished, and community acceptance of people with epilepsy increased.64 Similarly, in the Netherlands positive outcomes were reported for both knowledge and attitudes from three different educational methods: written material, visual presentation, and participation in group discussion.121 Disappointingly, the attitudinal changes were not sustained long-term, highlighting that stigma reduction is a highly complex process. Reduction of the stigma associated with epilepsy worldwide is a major focus of the current “Epilepsy: Out of the Shadows” initiative.18 By whatever means the task is accomplished, intervention campaigns must aim to address the continuing misperceptions and misinformation about epilepsy, and so increase the social value of people with epilepsy and ensure that it is no longer deemed as central to their social identity. Acknowledgments Authorship is on behalf of the CREST Study team and we would like to thank our colleagues for their support in writing this paper: Charles Begley, Hanneke de Boer, David Chadwick, Dang Vu Trung, Nguyen Thanh Huong, Leonid Prilipko, Ria Reis, Wenzhi Wang, Jian-zhong Wu. We also thank the US NIH for its financial support. Authors’ contributions GB, AJ, and DS agreed on the search strategy for the review and DS did both the electronic searches and those by hand. AJ and GB reviewed articles identified through the searches. AJ prepared the first draft of the review and revised it after GB and DS commented on it. Conflicts of interest We have no conflicts of interest. Role of the funding source This review is one output from a project funded by the US NIH under its “Brain Disorders in the Developing World” call. CREST (Collaborative Research on Epilepsy Stigma) is funded by the US NIH (R21 NS048839), to assess the nature of stigma in China and Vietnam. The references discussed in this review were identified from an extensive review that was done as part of the CREST Study. NIH had no role in the writing of this paper or in the decision to submit it for publication. References 1 Reynolds EH. ILAE/IBE/WHO epilepsy global campaign history. Epilepsia 2002; 43: 9–11. 2 Commission on Classification and Terminology, International League Against Epilepsy. Proposal for revised clinical and electroencephalographic classification of epileptic seizures. Epilepsia 1981; 22: 489–501. 3 Schachter SC. Overview of epilepsy and seizures. In : Schachter SC, ed. Brainstorms: epilepsy in our words. New York: Raven Press, 1993: 3–5. 4 Harrison RM, West P. Images of a grand mal. New Society 1977; 40: 762–82. 5 Jacoby A, Gorry J, Gamble C, Baker G. Public knowledge, private grief: a study of public attitudes to epilepsy in the UK and implications for stigma. Epilepsia 2004; 45: 1405–15. 6 Shorvon SD, Reynolds EH. Early prognosis of epilepsy. BMJ 1982; 285: 1699–1701. 7 Elwes RDC, Johnson AL, Shorvon SD, Reynolds EH. The prognosis of seizure control in newly diagnosed epilepsy. N Engl J Med 1984; 311: 944–47. 8 Placencia M, Sander JWAS, Roman M, et al. The characteristics of epilepsy in a largely untreated population in rural Ecuador. J Neurol Neurosurg Psychiatry 1994; 57: 320–25. 9 MRC Antiepileptic Drug Withdrawal Group. Randomised study of antiepileptic drug withdrawal in patients with remission. Lancet 1991; 337: 1175–80.
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13
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15
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17 18
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22
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Berg AT, Shinnar S. The risk of recurrence following a first unprovoked seizure: a qualitative review. Neurology 1991; 41: 965–72. Sander JWAS, Sillanpaa M. Natural history and prognosis. In: Engel J, Pedley TA, eds. Epilepsy: a comprehensive textbook. Philadelphia: Lippincott-Raven,1997: 69–86. Lambert MV, David AS. Psychiatric comorbidity. In: Oxbury J, Polkey C, Duchowny M, eds. Intractable focal epilepsy. London: WB Saunders, 2000: 445–74. Jacoby A, Baker GA. Quality of life issues in intractable focal epilepsy. In: Oxbury J, Polkey C, Duchowny M, eds. Intractable focal epilepsy. London: WB Saunders, 2000: 419–36. International League Against Epilepsy. International classification of epilepsies and epileptic syndromes. New York: Raven Press, 1989. Aicardi J, Shorvon S. Intractable epilepsy. In: Engel J, Pedley TA, eds. Epilepsy: a comprehensive textbook. Philadelphia: LippincottRaven, 1997: 1325–31. Arnston P, Drodge D, Norton R, et al. The perceived psychosocial consequences of having epilepsy. In: Whitman S, Herman B, eds. Psychopathology in epilepsy: social dimensions. Oxford: Oxford University Press, 1986: 143–61. WHO. Epidemiology, aetiology and prognosis: fact sheet number 165. http://www.WHO.int (accessed Feb 2, 2005). Global Campaign Against Epilepsy. Out of the shadows: an introduction to the global campaign and its demonstration projects. Heemstede: GCAE, 2001. http://www.who.int/mental_health/ management/en/GcaeBroEn.pdf (accessed Feb 2, 2005). Goffman E. Stigma: notes on the management of spoiled identity. New Jersey: Prentice Hall, 1963. Durkheim E. The rules of sociological method. New York: Free Press, 1964. Neuberg SL, Smith SM, Asher T. Why people stigmatize: towards a biocultural framework. In: Heatherton TF, Kleck RE, Hebl MR, Hull JG, eds. The social psychology of stigma. New York: The Guilford Press, 2000: 31–61. Stangor C, Crandall CS. Threat and the social construction of stigma. In: Heatherton TF, Kleck RE, Hebl MR, Hull JG, eds. The social psychology of stigma. New York: The Guilford Press, 2000: 62–87. Weiner B. On sin versus sickness: a theory of perceived responsibility and social motivation. Am Psychol 1993; 48: 957–65. Crocker J, Major B, Steele C. Social stigma. In: Gilbert DT, Fiske ST, Gardner L, eds. The handbook of social psychology. Boston: McGraw Hill, 1998: 504–53. Falk G. Stigma: how we treat outsiders. New York: Prometheus, 2001. Dovidio JF, Major B, Crocker J. Stigma: introduction and overview. In: Heatherton TF, Kleck RE, Hebl MR, Hull JG, eds. The social psychology of stigma. New York: The Guilford Press, 2000: 1–30. Link BG, Phelan JC. On stigma and its public health implications. Paper presented at US NIH conference on stigma and global health: developing a research agenda, Bethesda MD, 2001. http://www.stigmaconference.nih.gov (accessed Feb 2, 2005). Scambler G. Re-framing stigma: felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Soc Theory Health 2004; 2: 29–46. Fabrega H, Manning PK. Disease, illness and deviant careers. In: Scott RA and Douglas JD, eds. Theoretical perspectives on deviance. New York: Basic Books, 1972. Field D. The social definition of illness. In: Tuckett D, ed. An introduction to medical sociology. London: Tavistock Publications, 1976: 334–66. Scambler G. Perceiving and coping with stigmatizing illness. In: Fitzpatick R, Hinton J, Newman S, Scrambler G, Thompson J, eds. The experience of illness. London: Tavistock, 1984: 203–26. Albrecht GL, Walker VG, Levy JA. Social distance from the stigmatised: a test of two theories. Soc Sci Med 1982; 16: 1319–27. Weiner B, Perry RP, Magnusson J. An attributional analysis of reactions to stigma. J Pers Soc Psychol 1988; 55: 738–48. Crandall CS, Moriatry D. Physical illness stigma and social rejection. Br J Soc Psychol 1995; 34: 67–83. Rush LL. Affective reactions to multiple social stigmas. J Soc Psychol 1998; 138: 421–30.
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39 40 41
42 43
44
45
46
47 48 49 50
51 52 53 54 55
56 57
58
59 60
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Menec VH, Perry RP. Reactions to stigmas among Canadian students: testing an attribution-affect-help judgment model. J Soc Psychol 1998; 138: 443–53. Reidpath DD, Chan KY, Gifford SM, et al. ‘He hath the French Pox’: stigma, social value, and social exclusion. Sociol Health Illness 2005; (in press). Link BG, Stuening E, Cullen FT, et al. A modified labeling theory approach to mental-disorders: an empirical assessment. Am Sociol Rev 1989; 54: 400–23. Armstrong D. Outline of sociology as applied to medicine, 4th edn. London: Arnold, 2001. Merton RK. The self-fulfilling prophecy. Antioch Review 1948; 8: 193–210. Rosenthal R, Jacobson L. Pygmalion in the classroom: teacher expectations and student intellect development. New York: Holt, Rinehart & Winston, 1968. Williams T. Teacher prophecies and the inheritance of inequality. Sociol Educat 1976; 49: 223–26. Jacobs JE, Eccles JS. The impact of mothers’ gender-role stereotypic beliefs on mothers’ and childrens’ ability perceptions. J Pers Soc Psychol 1992; 63: 932–44. Sibicky M, Dovidio J. Stigma of psychological therapy: stereotypes, interpersonal reaction and the self-fulfilling prophecy. J Counsel Psychol 1986; 33: 148–54. Jussim L, Palumbo P, Chatman C et al. Stigma and self-fulfilling prophecies. In: Heatherton TF, Kleck RE, Hebl MR, Hull JG, eds. The social psychology of stigma. New York: The Guilford Press, 2000: 374–418. Link BG. Understanding labelling effects in the area of mentaldisorders: an assessment of the effects of expectations of rejection. Am Sociol Rev 1987; 52: 96–112. Temkin O. The falling sickness. Baltimore: John Hopkins Press, 1971. Ziegler RG. Epilepsy: individual illness, human predicament and family dilemma. Fam Rel 1982; 31: 435–44. Bagley C. Social prejudice and the adjustment of people with epilepsy. Epilepsia 1972; 13: 33–45. Trostle JA. Social aspects: stigma, beliefs and measurement. In: Engel J Jr, Pedley TA, eds. Epilepsy: a comprehensive text book. Philadelphia: Lippencott-Raven, 1997: 2183–90. Ablon J. The nature of stigma and medical conditions. Epilepsy Behav 2002; 3: S2–9. Scambler G. Epilepsy. London: Tavistock, 1989. Gunn J, Fenton G. Epilepsy in prisons: a diagnostic survey. BMJ 1969; 4: 326–28. Rodin EA. Psychomotor epilepsy and aggressive behaviour. Arch Gen Psychiatry 1973; 28: 210–13. Bear D, Freeman R, Greenberg M. Behavioural alterations in patients with temporal lobe epilepsy. In: Blumer D, ed. Psychiatric aspects of epilepsy. Washington, DC: American Psychiatric press, 1984. Reis R. Epilepsy and self-identity among the Dutch. Med Anthropol 2001; 19: 355–82. Blumer D, Altshuler LL. Affective Disorders. In: Engel J Jr, Pedley TA, eds. Epilepsy: a comprehensive text book. Philadelphia: Lippincott-Raven Publishers, 1997: 2083–99. Corbett JA. Epilepsy and mental handicap. In: Laidlaw J, Richens A, Oxley J, eds. A textbook of epilepsy, 3rd ed. Edinburgh: Churchill Livingstone, 1988: 533–38. Coulter D. Epilepsy and mental retardation: an overview. Am J Ment Retard 1993; 98 (suppl): 27–33. Aldenkamp AP, Baker GA, Meador KJ. Neuropsychology of epilepsy: what are the factors involved? Epilepsy Behav 2004; 7 (suppl 1): 1–53. Jones EE, Farina A, Hastorf AH, et al. Social stigma: the psychology of marked relationships. New York: Freeman, 1984. Jochim G, Acorn S. Living with chronic illness: the interface of stigma and normalisation. Can J Nurs Res 2000; 32: 37–48. Conrad P. Epilepsy in Indonesia: notes from development. Cent Iss Anthropol 1992; 10: 94–102. JilekAall L, Jilek M, Kaaya J, et al. Psychosocial study of epilepsy in Africa. Soc Sci Med 1997; 45: 783–95. Peltzer K. Perceptions of epilepsy among black students at a university in South Africa. Curationis 2001; 24: 62–67.
177
Review
66
67
68
69
70 71 72 73
74
75
76 77
78 79
80
81 82 83
84
85 86
87 88 89 90 91 92 93
94
178
Schachter SC. Overview of epilepsy and seizures. In: Schachter SC, Anderman LF, eds. The brain storms village: epilepsy in our world. Philadelphia: Lippincott, Williams & Wilkins, 2003: 1–4. Austin JK, Shafer PO, Deering JB. Epilepsy familiarity, knowledge and perceptions of stigma: report from a survey of adolescents in the general population. Epilepsy Behav 2002; 3: 368–75. Das V. Stigma, contagion, defect: issues in the anthropology of public health. Paper presented at US NIH conference on stigma and global health: developing a research agenda, Bethesda MD, 2001. http://www.stigmaconference.nih.gov (accessed Feb 2, 2005). Charmaz K. Experiencing chronic illness. In: Albrecht GL, Fitzpatrick R, Scrimshaw SC, eds. The handbook of social studies in health and medicine. London: Sage, 2000: 277–92. Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Sociol Health Illness 1983; 5: 168–97. Schneider JW, Conrad P. Having epilepsy: the experience and control of illness. Philadelphia: Temple University Press, 1983. Kleck RE. Self-disclosure patterns of non-obviously stigmatized. Psychol Rep 1968; 23: 1239–48. West P. Investigation into the Social Construction and consequences of the label “epilepsy”. PhD thesis, University of Bristol, 1979. Kleinman A, Wang WZ, Li SC, et al. The social course of epilepsy: chronic illness as social experience in interior China. Soc Sci Med 1995; 40: 1319–30. Caveness WF, Gallup GH. A survey of public attitudes towards epilepsy in 1979 with an indication of trends over the past thirty years. Epilepsia 1980; 21: 509–18. Iivanainen M, Vutela A, Vilkkumaa I. Public awareness and attitudes towards epilepsy in Finland. Epilepsia 1980; 21: 413–23. Canger R, Cornaggia C. Public attitudes towards epilepsy in Italy: results of a survey and comparison with USA and West German data. Epilepsia 1985; 26: 221–26. Jensen R, Dam M. Public attitudes toward epilepsy in Denmark. Epilepsia 1992; 33: 459–63. Mirnics Z, Czikora G, Zavecz T, et al. Changes in public attitudes toward epilepsy in Hungary: results of surveys conducted in 1994 and 2000. Epilepsia 2001; 42: 86–93. Fong CG, Hung A. Public awareness, attitude, and understanding of epilepsy in Hong Kong Special administrative region, China. Epilepsia, 2002; 43: 311–16. Hills MD, MacKenzie HC. New Zealand community attitudes toward people with epilepsy. Epilepsia 2002; 43: 1583–89. Novotna I, Rektor I. The trend in public attitudes in the Czech Republic towards persons with epilepsy. Eur J Neurol 2002; 9: 535–40. Hicks RA, Hicks MJ. Attitudes of major employers towards the employment of people with epilepsy: a thirty year study. Epilepsia 1991; 32: 86–88. Beran RG, Frith J, Harris M. Practices and perspectives of Australian general practitioners pertaining to epilepsy after a decade of intervention. Seizure 1992; 1: 13 (abstr). Baumann RJ, Wilson JF, Weise HJ. Kentuckians’ attitudes toward children with epilepsy. Epilepsia 1995; 36: 1003–08. Pryor JB, Reeder GD, Landau S. A social-psychological analysis of HIV-related stigma: a two-factor theory. Am Behav Scientist 1999; 42: 1193–1211. Corrigan PW, Watson AC, Ottati V. From whence comes mental illness stigma? Int J Soc Psychiatry 2003; 49: 142–57. Troster H. Disclose or conceal? Strategies of information management in persons with epilepsy. Epilepsia 1997; 38: 1227–37. Troster H. Coping with the stigma of epilepsy. Psychol Health Med 1998; 3: 149–61. Jacoby A. Felt versus enacted stigma: a concept revisited. Soc Sci Med 1994; 38: 269–74. Scambler G, Hopkins A. Being epileptic: coming to terms with stigma. Sociol Health Illness 1986; 8: 26–43. Scambler G, Hopkins A. Generating a model of epileptic stigma: the role of qualitative analysis. Soc Sci Med 1990; 30: 1187–94. Jacoby A, Baker GA, Steen N, Potts P. Chadwick D. The clinical course of epilepsy and its psychosocial correlates: findings from a UK community study. Epilepsia 1996; 37: 148–61. Baker GA, Brooks J, Buck D, et al. The stigma of epilepsy: a European perspective. Epilepsia 2000; 41: 98–104.
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98 99
100 101
102 103
104
105 106
107
108
109 110 111 112
113
114
115
116
117
118 119
120
121
Reis R, Meinardi H. Stigma: does the flag identify the cargo? Epilepsy Behav 2002; 3: S33–37. Baker GA, Jacoby A, Buck D, et al. Quality of life of people with epilepsy: a European study. Epilepsia 1997; 38: 353–62. Corbin J, Strauss AL. Accompaniments of chronic illness: changes in body, self, biography and biographical time. In: Roth JA, Conrad P, eds. The sociology of health care. Greenwich: JAI Press Inc, 1987. Jacoby A. Epilepsy and the quality of everyday life. Soc Sci Med, 1992; 38: 261–74. Jacoby A, Chadwick D, Doughty J. Social consequences of epilepsy: findings from the UK MRC study of early epilepsy and single seizures. Epilepsia 2001; 42 (suppl 2): S9. Ryan R, Kempner K, Emlen AC. The stigma of epilepsy as a selfconcept. Epilepsia 1980; 21: 433–44. Suurmeijer TPBM, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy. Epilepsia 2001; 42: 1160–68. Hermann BP, Whitman S, Wyler AR, et al. Psychosocial predictors of psychopathology in epilepsy. Br J Psychiatry 1990; 156: 98–105. Dilorio C, Shafer PO, Letz R, et al. The association of stigma with self-management and perceptions of health care among adults with epilepsy. Epilepsy Behav 2003; 4: 259–67. Westbrook LE, Bauman LJ, Shinnar S. Applying stigma theory to epilepsy: a test of a conceptual model. J Pediatr Psychol 1992; 17: 633–49. MacLeod JS, Austin JK. Stigma in the lives of adolescents with epilepsy: a review of the literature. Epilepsy Behav 2003; 4: 112–17. Ratsepp M, Oun A, Haldre S, et al. Felt stigma and impact of epilepsy on employment status among Estonian people: exploratory study. Seizure, 2000; 9: 394–401. Dell JL. Social dimensions of epilepsy: stigma and response. In: Whitman S, Hermann B, eds. Psychopathology in epilepsy: social dimensions. Oxford: Oxford University Press, 1986: 185–210. Aziz H. Epilepsy in Pakistan: stigma and psychosocial problems— a population-based epidemiological study. Epilepsia 1997; 38: 1069–73. Collings J. Psychosocial well-being and epilepsy: an empirical study. Epilepsia 1990; 31: 418–26. Collings JA. Epilepsy and well-being. Soc Sci Med 1990; 31: 165–70. Wiebe S, Bellhouse DR, Fallahay C, et al. Burden of Epilepsy: the Ontario health survey. Can J Neurol Sci 1999; 26: 263–70. Birbeck GL, Kim S, Hays R. Quality of life measures in epilepsy: how well can they detect a change over time? Neurology 2000; 54: 1822–27. Weiss MG, Ramakrishna J. Interventions: research on reducing stigma. Paper presented at US NIH conference on stigma and global health: developing a research agenda, Bethesda MD, 2001. http://www.stigmaconference.nih.gov (accessed Feb 2, 2005). Gallhofer B. Epilepsy and its prejudice: teachers’ knowledge and opinions—are they a response to psychopathological phenomena? Psychopathology 1984; 17: 187–212. Thorbecke R. Private insurance for people with epilepsy in Europe. In: Cornaggia CM, Beghi E, De Boer H, Hauser AW, Sonnen AEH, Thorbecke R, eds. Risks in Epilepsy: Questions concerning insurability. Heemstede: International Bureau for Epilepsy, 1997. Jacoby K, Jacoby A. Epilepsy and insurance in the UK: an exploratory survey of the experiences of people with epilepsy. Epilepsy Behav 2004; 5: 884–93. Chadwick DW. Quality of life and quality of care in epilepsy. RSM round table series number 23. London: Royal Society of Medicine, 1990. Al Adawi S, Al Salmy H, Martin RG, et al. Patient’s perspective on epilepsy: self knowledge among Omanis. Seizure 2003; 12: 11–18. Doughty J, Baker GA, Jacoby A, Lavaud V. Cross-cultural differences in levels of knowledge about epilepsy. Epilepsia, 2003; 44: 115–23. Krauss Gl, Gondek S, Krumholz A, et al. “The Scarlet E”: the presentation of epilepsy in the English language print media. Neurology 2000; 54: 1894-98. Gutteling JM, Seydel ER, Wiegman O. Previous experiences with epilepsy and effectiveness of information to change public perception of epilepsy. Epilepsia 1986; 27: 739–45.
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