Epilepsy stigma: Moving from a global problem to global solutions

Stigma and exclusion are common features of epilepsy in both the developed and developing countries and a major contributor to the burden associated with the condition. Reducing the stigma of epilepsy is key to reducing its impact and so improving quality of life. The social consequences of having epilepsy can be enormous, be it that they vary from country to country, based on cultural differences and economic circumstances. The most significant problems people with epilepsy encounter in daily life often are not related to the severity of the condition, but stem from concepts of epilepsy held by the general public.In this paper, I review the history of epilepsy and consider how different historical and cultural understandings of epilepsy have determined the experience of stigma for those affected by it. I consider how this history of stigma impacts on the position of people with epilepsy today, many of whom may still experience serious limitations to their enjoyment of economic, social and cultural rights and have many unmet needs in the areas of civil rights, education, employment, residential and community services, and access to appropriate health care. Finally, I will discuss some current initiatives aimed at addressed the issue of epilepsy stigma worldwide, which offer hope of an end to the social exclusion and prejudice which people with epilepsy have endured for so long.     

Confronting the stigma of epilepsy

Stigma and resultant psychosocial issues are major hurdles that people with epilepsy confront in their daily life. People with epilepsy, particularly women, living in economically weak countries are often ill equipped to handle the stigma that they experience at multiple levels. This paper offers a systematic review of the research on stigma from sociology and social psychology and details how stigma linked to epilepsy or similar conditions can result in stereotyping, prejudice and discrimination. We also briefly discuss the strategies that are most commonly utilized to mitigate stigma. Neurologists and other health care providers, social workers, support groups and policy makers working with epilepsy need to have a deep understanding of the social and cultural perceptions of epilepsy and the related stigma. It is necessary that societies establish unique determinants of stigma and set up appropriate strategies to mitigate stigma and facilitate the complete inclusion of people with epilepsy as well as mitigating any existing discrimination.     

A comparative study of health related quality of life, psychological well-being, impact of illness and stigma in epilepsy and migraine

This study aimed to show the difference of epilepsy from another chronic neurological disorder with episodic manifestations (CDEM): migraine. Seventy persons with epilepsy (PWE), 56 persons with migraine (PWM) and 45 healthy control participants (HCs) were included. The groups were compared in terms of demographics, quality of life, depression and self-esteem. The PWE and PWM were also compared with regard to stigma, impact of the illness, disclosure, application of spiritual/traditional healing methods, limitations, most affected life areas, and restrictions. Results showed that the PWM had lower quality of life values than the PWE and the HCs, while there was no difference among the groups in depression and self-esteem. Results also show higher unemployment levels and lower marriage rates for the PWE, where education levels were equal. Although the PWM had higher impact of illness values, the PWE were shown to have higher stigma, more concealment behavior, and higher traditional/spiritual healing application ratios. Also, the PWM emphasized the importance of being “able to fulfil daily living, social and work activities”, while the PWE emphasized the need for “independence” constantly. These results indicate that, although both migraine and epilepsy are CDEMs, they have different levels of impact on patients’ lives. The impacts are socially greater in epilepsy and extend beyond the neurological condition itself.     

Psychosocial and sociodemographic associates of felt stigma in epilepsy

BackgroundLack of a sufficient range in socioeconomic status (SES) in most prior studies of felt stigma and epilepsy has hampered the ability to better understand this association.MethodsWe assessed the burden and associates of felt stigma in 238 individuals with prevalent epilepsy aged 18 and older, comparing low SES with high SES.ResultsReported levels of stigma were higher in low SES than in high SES (p < 0.0001), and all psychosocial variables were associated with stigma, including depression severity (p < 0.0001), knowledge of epilepsy (p = 0.006), quality of life (p < 0.0001), social support (p < 0.0001), and self-efficacy (p = 0.0009). Stigma was statistically significantly associated with quality of life in the low SES group and with depression severity and social support in the high SES group.ConclusionsLow SES alone did not account for felt stigma; rather, we found that quality of life, depressive symptoms, and social support have the greatest impact on reported felt stigma in individuals with prevalent epilepsy.     

Stigma in the lives of adolescents with epilepsy: a review of the literature

The World Health Organization, the Centers for Disease Control and Prevention, and the Epilepsy Foundation have recently focused attention on problems experienced by people with epilepsy as a result of stigma. Stigma is associated with poor psychosocial health outcomes in people with epilepsy, and its effects may be strongly felt by adolescents who are already dealing with the challenges of developing self-identity and self-esteem. This review synthesizes the empirical literature on stigma in the lives of adolescents with epilepsy. Beginning research indicates that stigma is related to quality of life in adolescents with epilepsy, although existing measures may not yet fully capture how this stigma is experienced. For example, instead of reporting stigma actually experienced, adolescents report limiting disclosure of their illness, perhaps because they anticipate being stigmatized in a peer social environment that fosters misconceptions about people with epilepsy. Recommendations for future research are discussed.     

Determinants of felt stigma in epilepsy

The present study aimed to determine the level of felt stigma, overprotection, concealment, and concerns related to epilepsy in different life domains by using culturally-specific scales for Turkish individuals with epilepsy. Also, it aimed to detect relations among the study variables and to determine the variables which predict felt stigma. For this purpose, felt stigma scale, overprotection scale, concealment of epilepsy scale, and concerns of epilepsy scale were administered to two hundred adult persons with epilepsy (PWE). The results showed that almost half of the participants reported felt stigma, overprotection, concealment of epilepsy, concerns related to future occupation, and concerns related to social life. Almost all the study variables show correlations with each other. Concealment of epilepsy, concerns related to social life, and concerns related to future occupation were found as the predictors of felt stigma.     

Family and sexual life in people with epilepsy

Having epilepsy is much more than having seizures. Epilepsy can have a severe negative effect on quality of life, affecting social relationships, academic achievement, housing, employment, and the ability to live and function independently. We undertook a cross-sectional study in a tertiary epilepsy center in Lithuania, aiming to assess the influence of epilepsy and aspects relating to epilepsy (employment, stigma, anxiety) on patients and their families, and to estimate their quality of family life and sexual functioning. We asked patients to complete a questionnaire about their socio-demographic situation, their seizure types and antiepileptic medications, and their quality of family and sexual life. Our results confirmed that epilepsy seriously influences family life. One third of our patients are lonely and half are childless. Epilepsy leads to difficulty in finding a job, especially for men, and unemployment affects their status in the family. People with epilepsy are uncomfortable interacting with those of the opposite sex and tend to conceal their medical condition from their partner. One third have sexual dysfunction, yet only a quarter of them seek professional help. There is a clear need to improve self-confidence and to reduce social stigma in people with epilepsy, and to encourage them to discuss their problems with specialists.     

Epilepsy and social identity: the stigma of a chronic neurological disorder

Epilepsy is the most common serious neurological disorder worldwide, affecting about 50 million people. 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.     

Changes in quality of life and self-perspective related to surgery in patients with temporal lobe epilepsy

PURPOSE: To evaluate changes in intractable epilepsy patients in terms of quality of life, depression, anxiety, stigma, and impact of epilepsy before and after surgery. METHODS: Twenty patients with intractable temporal lobe epilepsy who were waiting for surgery (pre-SAH group) and 21 patients who had already undergone surgery (post-SAH group) were studied. All patients received SF-36, Beck Depression Inventory, State-Trait Anxiety Inventory, stigma and impact of epilepsy inventories, and a form asking their own perspectives about epilepsy and surgery. RESULTS: Post-SAH group scored higher on all subscales of SF-36, with only RE scores being significantly better (t=-1.98, P=.05). Although depression, anxiety, and stigma scores were higher in pre-SAH group, only impact of epilepsy scores were significantly higher in pre-SAH group (t=-2.951, P=.005). Seizure frequency and comorbidity had significant effects on QOL where amount of AEDs and QOL were negatively related (r=-0.318, P<0.05). Both groups stated lack of independence and social activities as the main concern (48.8%) and recovery from epilepsy as the most important expectation from surgery (85.4%). Post-surgical group mentioned the difference in their life after surgery as independence and increase in social activities (47.6%). CONCLUSION: QOL of patients after surgery was found to be better than before surgery. Results also revealed that seizure frequency, comorbidity, and anti-epileptic medication affected health related QOL negatively. Impact of epilepsy levels was found to be higher among the pre-SAH patients. Finally, independence seemed to be the most important concern and gain for Turkish epilepsy patients.     

Changing name of epilepsy in Korea; cerebroelectric disorder (noi‐jeon‐jeung,뇌전증,腦電症)

Public misconception of epilepsy may lead to significant stigma to the disease itself, thereby causing impaired quality of life in people with epilepsy. Traditionally, epilepsy has been considered to be the consequence of evanescent spiritual forces, and even demonic possession (in many countries). The names of epilepsy in some East Asian countries originated from China, and include madness in their meaning. We recently changed the Korean name of epilepsy, gan‐jil (??, 癎疾: a crazy, convulsive disease having meaning similar to 癲癎), to a neutral and scientifically explainable name: noi‐jeon‐jeung (???; 腦電症; cerebroelectric disorder). We expect that changing the stigmatized name of epilepsy to a neutral and scientific term with the meaning of cerebroelectric disorder will reduce the social stigma by understanding of epilepsy as one of the neurologic disorders.     

Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma

PURPOSE: For many people with epilepsy, the continuing social reality of their condition is as a stigma, thus representing a source of much private grief. To understand fully the nature of epilepsy stigma, it is important to examine attitudes and beliefs of not just the "targets" but also of the "perceivers" of stigma. Perceivers may hold erroneous beliefs and stereotypes that lead them to have negative expectations of people affected by epilepsy. This study examined levels of knowledge and attitudes among perceivers of epilepsy stigma in the U.K. METHODS: A random sample of >1,600 members of the general public was interviewed as part of the bimonthly UK Omnibus Survey. The response rate was 62%. RESULTS: One fourth of informants knew someone with epilepsy and one half had witnessed a seizure. One half agreed that people with epilepsy are treated differently by others, and themes of exclusion, restriction, and nonnormality were commonly cited as reasons for this. Epilepsy ranked second in a range of health conditions, in terms of which would cause them greatest concern if informants had to work with someone so affected. Responses to a series of attitude statements indicated that most held highly favorable attitudes; but one fifth agreed with the statement that people with epilepsy have more personality problems than do others. Responses were influenced by informants' sociodemographic characteristics. CONCLUSIONS: The survey revealed attitudes and knowledge gaps that have the potential for discriminatory behavior. There are implications for how public education campaigns should be implemented, and who should be targeted.     

Epidemiologic aspects and relevance of mental disorders associated with epilepsy

Epilepsy is the most common serious neurological disorder. Worldwide, around 50 million people have epilepsy, 40 million of which in developing countries. Though epilepsy is predominantly treatable, most patients in these countries remain without treatment. It is likely that one of the main reasons is the stigma associated with epilepsy. This problem increases when mental disorders are associated with epilepsy, a fairly frequent occurrence. Patients with epilepsy and mental disorders are exposed to a "double stigma", which frequently leads to complete absence of treatment. It is probable that, particularly in developing countries, psychiatrists will be involved with the treatment of people with epilepsy. Our purpose was to review the epidemiology of mental disorders associated with epilepsy, its treatment gap and impact upon quality of life of the patients.     

Idiopathisch generalisierte Epilepsien

Background

Although the sociomedical importance of epilepsies has been extensively investigated, data regarding social long-term outcome and quality of life of people with idiopathic generalized epilepsies (IGE) are lacking.

Objectives

Predictors for the psychosocial outcome and the quality of life in patients with IGE are identified and discussed.

Materials and methods

The findings of existing studies on the social outcome in patients with various IGE syndromes are analyzed and discussed.

Results

Patients with absence epilepsy or juvenile myoclonic epilepsy (JME) are reported to have an unfavorable psychosocial outcome. While in JME a lower seizure frequency or remission of the epilepsy correlates with a favorable psychosocial outcome and a higher quality of life, remission of epilepsy is not predictive for a better social outcome among patients with absence epilepsy. Compared to other IGE syndromes, IGE with generalized, tonic–clonic seizures on awakening appears have a more favorable psychosocial outcome.

Conclusion

Several predictors for the psychosocial outcome and the quality of life have been identified and may potentially increase the clinicians’ ability and confidence to recommend different treatment options to patients with IGE.

     

The psychological costs of comparisons: Parents' social comparison moderates the links between family management of epilepsy and children's outcomes

Parents play a key role in how children deal with epilepsy. When diagnosed with health conditions, people seek comparison information from fellow patients and families, and this information has consequences for how they evaluate their situation. This study examined the moderating role of parents' social comparison orientation in the associations between family management (parental perceptions of family life difficulties and child's daily life) and adaptation outcomes of children with epilepsy (HRQoL and perceived stigma). Participants included 201 dyads of children with epilepsy and either their mother or father. The results showed that when parents perceived higher difficulties managing their child's epilepsy and/or reported that their child was more affected by this condition, children reported higher perceived stigma and worse HRQoL only when parents had a higher social comparison orientation. Our results are innovative in showing that when parents have a higher social comparison orientation, their children may be at increased risk of poorer outcomes.     

Epilepsy and secondary perceived stigma in a social setting: A night at the theater

Stigma impacts > 50% of persons with epilepsy (PWE) and is a key factory in quality of life. Stigma can be both enacted (external factors) and felt (internal factors). In this article, felt/perceived stigma is more broadly defined as a combination of internal factors and perceptions of external factors. Secondary perceived stigma is felt/perceived stigma by a third party. A key, but often underappreciated, consideration in felt/perceived stigma may occur when a seemingly innocuous statement by a speaker is perceived as stigmatizing by the PWE and/or even by an unintended third party. This autobiographic short report addresses secondary perceived stigma in a social setting, the theater.     

Meanings of epilepsy in its sociocultural context and implications for stigma: findings from ethnographic studies in local communities in China and Vietnam

We investigated beliefs about the causes, course, and treatment of epilepsy and its impact on quality of life (QOL) in key target groups, using "mini-ethnographies" involving 141 in-depth interviews and 12 focus groups in China, and 84 in-depth interviews and 16 focus groups in Vietnam. Data were analyzed thematically, using a qualitative data analysis package. In both countries, beliefs about causes and triggers of epilepsy and seizures were a complex interweaving of Western, traditional, and folk medicine concepts. Epilepsy was understood to be chronic, not curable, but controllable, and was seen as enormously socially disruptive, with wide-ranging impact on QOL. Our findings suggest a more "embodied" and benign set of theories about epilepsy than in some other cultural contexts; nonetheless, people with epilepsy are still seen as having low social value and face social rejection. By exploring meanings attached to epilepsy in these two cultural contexts, we have clarified reasons behind previously documented negative attitudes and foci for future intervention studies.     

Stigma experience of people with epilepsy in Mexico and views of health care providers

Epilepsy is a neurological disorder with neurobiological, cognitive, psychological, and social consequences. Epilepsy stigma is a social determinant of ill health that affects the quality of life of people who suffer from epilepsy and that renders a poor social prognosis even worse than the clinical one. From a phenomenological approach, between January and July 2011, we explored the experience of epilepsy stigma through 25 in-depth qualitative interviews with 10 persons with temporal lobe epilepsy (PWE) (we avoided terms such as “epileptics” or “epileptic patients” because they can be labeling and stigmatizing), 10 carers (CEs) of PWE who attended the epilepsy clinic of the Institute of Neurology and Neurosurgery of Mexico, and 5 physicians specialized in epilepsy. The objective of the study was to identify the following: perceptions that could indicate any form of discrimination due to having epilepsy, reactions of people in front of a person having seizures, and social functioning of PWE since epilepsy onset, particularly their interpersonal relationships and participation in educational or working activities. Through the health providers' narratives, we explored the mainstream care practices, their perspectives on epilepsy, and their views about how the disease should be addressed. Thematic guidelines were elaborated for each type of participant. All information was processed with the use of the computer-assisted data analysis, Atlas.ti5. We made a codification of broad themes that corresponded to the main topics of the interview guidelines and then proceeded to finer categorization to elaborate the analytical categories. Epilepsy was attached to a powerful stereotype that includes notions of contamination, danger, sin, divine punishment, supernatural forces, and madness. Internalized, interpersonal, and institutional stigma prevents PWE from participating in school and employment and reduces their opportunities to establish peer and couple relationships. Mexican's overt impunity of structural discrimination towards PWE shows a lack of available legal resources that protect their human rights. The narrow biomedical concept that physicians have of epilepsy is consistent with the limited medical practices that are offered to treat epilepsy at the health services in Mexico. Comprehensive treatment and integrated services for epilepsy must incorporate psychosocial programs that include epilepsy stigma as a major component of the disease.     

Quality of Life of People with Epilepsy: A European Study

Summary: Purpose: To study the impact of epilepsy and its treatment on people with epilepsy in Europe. We therefore aimed to collect data from as many countries as possible.
Methods: Clinical and demographic details and information about psychosocial functioning was collected using self-completed questionnaires mailed to members of epilepsy support groups.
Results: Quality of life data was collected from >5,000 patients living in 15 countries in Europe. Over a third of all respondents had frequent seizures, and a fifth believed that their seizures were not well enough controlled by antiepileptic medication. Reported levels of side effects from medication were high. A significant number of respondents reported changing their medication because of side effects or poor control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. Half of all respondents felt stigmatised by their epilepsy. There were significant differences by seizure type and frequency in the way respondents scored on measures of the perceived impact of their condition, the stigma associated with it and their health status as measured by a generic scale, the SF36.
Conclusions: This study confirms the findings of previous smaller-scale studies that reducing side effects and achieving better control of seizures are key to improving the quality of life of people with epilepsy, as is reducing the stigma and handicap associated with it.     

Social and family characteristics of Hispanics with epilepsy

The purpose of this study is to determine how acculturation, social support, family emotional involvement, perceived family criticism and stigma are associated with epilepsy self-efficacy and depression. A principal components analysis (PCA) was used to describe the salience of these characteristics within a sample of Hispanics with epilepsy. A total of 50 Hispanic adults of Mexican descent identified in our Epilepsy Clinic participated in this study. The PCA identified four distinct types, two were relatively culture-free, and two were distinctly culturally oriented. The first non-culture affiliated type described a well-adjusted group of individuals that tended to be males with moderate self-efficacy, who received social support, and who were unlikely to have depression or feel stigmatized. The second non-culture affiliated type described a dimension in which family emotional involvement tended to co-occur with perceived criticism. The Anglo-oriented group had a family environment that did not appear to criticize the individual with epilepsy and had good self-efficacy. The Mexican-oriented group had high self-efficacy and was unlikely to have depression. Results suggest that acculturation variables must be taken into consideration among ethnic groups because social, psychological and acculturation variables interact in complex ways. Additionally, it is clear that a diagnosis of epilepsy does not automatically lead to poor quality of life, stigma, or depression.