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

Epilepsy & Behavior 32 (2014) 162–169

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Stigma experience of people with epilepsy in Mexico and views of health care providers Mariana Espínola-Nadurille a,b, Daniel Crail-Melendez a, Maria Alejandra Sánchez-Guzmán b,⁎ a b

Neuropsychiatry Unit, National Institute of Neurology and Neurosurgery, Mexico City, Mexico Social Research Department, National Institute of Neurology and Neurosurgery, Mexico City, Mexico

a r t i c l e

i n f o

Article history: Received 2 October 2013 Revised 2 December 2013 Accepted 5 December 2013 Available online 16 January 2014 Keywords: Epilepsy Stigma Discrimination Experience Health services Qualitative methodology

a b s t r a c t 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. © 2013 Elsevier Inc. All rights reserved.

1. Introduction In recent years, health-related stigma has attracted increased attention as a social determinant of illness–health [1]. Stigma is a global phenomenon associated with several chronic diseases with great negative impact on patients and their families and deleterious consequences in their quality of life. Some of its effects include delay in diagnosis and treatment, risk behaviors, and poor adherence to treatment. It also has a dramatic effect on the distribution of life chances such as education and employment [2]. Weiss [3] defines health-related stigma as a “social process, experienced or anticipated, characterized by exclusion, rejection, blame, or ⁎ Corresponding author at: Social Research Department, National Institute of Neurology and Neurosurgery, Insurgentes Sur 3877, Col. La Fama, ZC 14269, Mexico City, Mexico. Fax: + 52 55 56084850. E-mail address: [email protected] (M.A. Sánchez-Guzmán). 1525-5050/$ – see front matter © 2013 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.yebeh.2013.12.007

devaluation that results from experience, perception, or an adverse social judgment about a person or group. This judgment is based on an enduring feature of identity conferred by a health problem or health-related condition, and the judgment is in some essential way medically unwarranted”. The need to explore stigma in epilepsy was underscored in 1997 at the launch of the global campaign “Epilepsy: Out of the Shadows” organized by the World Health Organization, the International League Against Epilepsy and the International Bureau for Epilepsy. Epilepsy stigma was recognized as a worldwide public health concern that increases the burden of the disease and that renders a poor social prognosis for persons with epilepsy (PWE), even worse than the clinical one [4]. It is also known that stigma can be a risk factor for physical diseases and for mental health problems [5]. Epilepsy stigma has been documented in many different countries and in rural and urban settings [6]. By virtue of its complexity, epilepsy stigma has been approached at different levels, such as the personal experience of stigma, attitudes towards people with epilepsy, and “felt”

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(subjective experiences of stigma) vs “enacted” (objective acts of discrimination and social exclusion) stigma. Recently, three broad main levels have been proposed to understand how stigma operates: internalized (within the PWE); interpersonal (within the PWE family and persons outside the family group); and institutional levels (structural expressions of stigma, i.e., schools, jobs, and health services) [7]. Kleinman [8] underlines that illness experiences are part of social systems and are influenced by culture. Stigma is a social determinant of health that strongly shapes the way PWE live their illness, and it has to be understood in the particular context where it takes place. In this general context, epilepsy health services need to be studied as key components to illness outcomes, as they can be conducive or not to favorable illness experiences. No study of epilepsy stigma and epilepsy health services has been performed in Mexico, to our knowledge. The objective of this study was to explore the experience of stigma of PWE seen at the National Institute of Neurology and Neurosurgery of Mexico and its consequences in their social lives. We also studied the mainstream epilepsy health care practices, physicians' perspectives on epilepsy, and their views about how it should be addressed. With this approach, we aimed to study how stigma operates in the lives of PWE at the internalized, interpersonal, and institutional levels.

2. Methods The findings are based on a cross-sectional study. With an ethnographic approach and qualitative methodology, we explored experiences and views of stigma in PWE. We interviewed 10 PWE seen at the National Institute of Neurology and Neurosurgery of Mexico (NINN); 10 carers (CEs) who generally accompany PWE to their consultations and, in their everyday lives, spend most of the time with them, and 5 attending physicians of the epilepsy clinic. The study protocol was approved by the Ethics Committee of NINN. The National Institute of Neurology and Neurosurgery of Mexico is a tertiary referral center that receives patients from all over the country and whose main objectives are patient care, research, and human resources training regarding neurologic diseases. The National Institute of Neurology and Neurosurgery of Mexico provides care to individuals who lack insurance coverage, mainly people who work in the informal economy or who are unemployed and are part of the poorest sector of society. At NINN, epilepsy is the most commonly seen disease, with a prevalence of 30% in the consultation services. From the time period of January to July 2011, a research team, constituted by one neuropsychiatrist and two researchers of the social research department, examined 50 clinical charts of PWE who were regularly seen for their appointments at the epilepsy clinic. Twenty patients met the inclusion criteria of having temporal lobe epilepsy (demonstrated origin of seizures in the medial part of the temporal lobe), which was classified as “difficult-to-control” epilepsy (two or more seizures per month despite high doses or multiple treatment regimens) [9]; who had received health care at NINN for at least five years before the study; and who had a family member who generally accompanies them to their consultations and, in his/her everyday life, spends most of the time with them. After a thorough team review of the charts, only ten PWE met all the inclusion criteria. Persons with epilepsy and carers were interviewed at the NINN research area. The physicians who participated in the study met the criteria of being in contact with PWE for at least 4 years. All participants signed a letter of informed consent, and confidentiality was preserved in all cases. Aiming to record individuals' personal feelings and the lived experience of epilepsy, we selected phenomenology as our theoretical and methodological approach. As Schutz asserts, conscious thoughts are intersubjective, and by means of their investigation, we can understand the significant processes that take place within the individuals, letting

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us understand how they interpret their own behaviors as well as other persons' behaviors as they go through their social lives [10]. The contents of the thematic guidelines were obtained by two means: 1) review of the literature on stigma [11] and stigma in epilepsy [12,13] and 2) emergent themes obtained from two pilot interviews with PWE, two pilot interviews with CEs, and 1 interview with a resident physician studying epileptology. The information from these pilot interviews was not included in the results. The guidelines explored PWE perceptions that could indicate any form of discrimination due to their health condition, how people reacted when they had a seizure, and their social functioning since epilepsy onset, particularly their interpersonal relationships and participation in educational or working activities. The CE guideline explored PWE social functioning in the aforementioned areas and reactions of people in front of a person having a seizure. Physicians' guidelines explored their perspectives on epilepsy, the mainstream care practices at NINN, and their views about health services. In-depth semistructured interviews were carried out to all participants. All interviews, with a mean duration of 90 min, were recorded and literally transcribed in a Word format. 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. The categories with the information of each participant were classified as follows: PWE. Discrimination attitudes— a) when having a seizure in public, b) in interpersonal relationships, and c) in educational and occupational activities CEs. Discrimination attitudes towards them and their relative (PWE) —a) when having a seizure in public, b) in interpersonal relationships, and c) in educational and occupational activities Physicians. Views and perceptions of the following: a) concept of epilepsy, b) main life domains of PWE affected by epilepsy, and c) treatments and services offered at NINN. Afterward, through an inductive analysis, the data were read and reread by the three members of the research team. The elaborated codifications were also analyzed looking for similarities and discrepancies. Subsequently, a finer codification was made to find the most important meanings and proceed to elaborate the analytical categories. Based on the themes that were used to make the categorization of the data, typologies of social discrimination were carried out: interpersonal relationships, and educational and occupational activities. Likewise, the social contexts and settings where PWE are most stigmatized and discriminated according to CEs and physicians were classified. Lastly, we proceeded to organize the most relevant data in tables. The PWE, CEs, and physicians who participated in the pilot interviews were asked what areas of PWE they perceived as the most affected by epilepsy. With this information, a structured interview was created that included items of social, psychological, and physical life domains (Table 3). Perceptions of PWE and physicians of these areas were registered. We used descriptive statistics in terms of proportions for nominal variables. In order to evaluate for significant relationships, we used Fisher's exact test. 3. Results 3.1. PWE sociodemographic and clinical data (Table 1) Participants with epilepsy were 5 men and 5 women, from 25 to 55 years of age, from Mexico City, and with a code 2 assigned by the social work department (low socioeconomical class). The average age of participants was 38 years (SEM = 2.38), most of them were single. Eight still lived in their parents' house. Six participants stopped school after junior high, 3 after elementary school, 1 completed high school, and 1 pursued a technical career in engineering. Only two

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participants were employed. Almost all the CEs interviewed were women, in 6 cases the mother, with an average age of 62. Sociodemographic data pertaining to each participant are shown in Table 1. A code was given to maintain confidentiality. The average duration for receiving health care at NINN was 13 years. Clinical data of PWE are shown in Table 1. Seven participants began having seizures in adolescence, only three started in childhood. The mean age of epilepsy onset was 13 years (SEM = 1.47). At onset of epilepsy and before receiving treatment at NINN, the mean number of seizures per month was 16.8 (SEM = 0.64), and were predominantly tonic–clonic seizures. At the time of the study, the mean number of seizures was 2.7 (SEM = 0.26) per month, predominantly complex partial seizures, and all participants took two antiepileptic medications for seizure treatment. 3.2. Stigma of epilepsy 3.2.1. Features of epilepsy stigma and reactions of people when they have a seizure Participants described that epilepsy is not evident in every moment, but when a seizure occurs, it is impossible to hide. All explained that in their social contexts, their condition is known by the entire community. Even when seizures are infrequent, the knowledge of others about them having epilepsy prevents them from being treated as “normal”. Eight perceived that in social encounters the others always see them “different” as if they “represent a threat”. ME2: “With my meds I'm, let's say, “ok”, I rarely have seizures, and many of them are not generalized, but what I need is them to see me all right, that they see me healthy. What happens, is that all of them already know me, and they have fear of my seizures all the time.

I don't know what's your opinion, let's say, if I have a seizure right now?”

Interviewer: “I am not worried.”

ME2: “But they do have fear, all the time! And that is why they reject me, they prefer me not to be there.” Having a seizure in public is described as a very stressful situation. Persons with epilepsy say that when they have a seizure, they lose consciousness, but after recovering alertness, people's reaction informs them that the event provoked very negative impressions. For this scenario, the CEs are the best witnesses of the situation. All CEs report that a seizure in public is a very complicated situation because they have to give first aid to their relatives and withstand reactions of unknown people. Sometimes people try to help them, but, frequently, the attitudes are of rejection or fear of taking responsibility. Carers spoke about the people's perception of PWE as dangerous. Observers tend to associate seizures with demons, supernatural forces, sin, madness, contagion, and divine punishment. “Some people come close to try to help “Do you need something, here's some water, do we call an ambulance? … to give support, to help”; but most of them get away, because they get scared I suppose, they feel strange and they just move away with disgust. People must think that he is dangerous, mad or maybe that he is dying! Or possessed by some demon! Sometimes I feel that they think that he can infect them with some disease.” [CM1]

Table 1 Sociodemographic and clinical data of PWE. PWE

Age

Marital status

Lives with

Carer

School grade

Employed Age at epilepsy Seizures at onset Seizure type Seizures at Seizure type onset seizures/month at onset time of study at time of study

WE1

45

Divorced Parents

Mother 66 y (CW1)

Junior high

No

16

15

WE2

31

Single

Mother and Mother 48 siblings y, (CW2) Husband Mother 68 y, (CW3)

Junior high

No

14

18

WE3

41

Married

High school

No

18

15

WE4

26

Single

Parents

Junior high

Yes

18

18

WE5

50

Single

Mother

Elementary school Elementary school Elementary school Junior high

No

8

ME1

45

Single

Parents

No

ME2

33

Divorced Mother

ME3

32

Single

Mother

ME4

41

Married

ME5

38

Single

Wife and mother Parents

SUMMARY M38 (SEM = 2.38) WE = Woman with epilepsy. ME = Man with epilepsy. CE = Relative of woman/man epilepsy. PGTCS = Primarily generalized tonic–clonic seizure. SGTCS = Secondarily generalized tonic–clonic seizure. CPS = Complex partial seizure. M = Mean. SEM = Standard error of the mean.

Sister 31 y.(CW4) Sister 40 y.(CW5) Father 65 y (CM1) Mother 69 y (CM2) Mother 66 y (CM3) Brother 36 y (CM3) Mother 60 y (CM4)

Technical career Elementary school

16

PGTCS SGTCS CPS CPS SGTCS PGTCS CPS SGTCS CPS SGTCS PGTCS

4

16

PGTCS

2

No

10

20

PGTCS

2

No

14

15

3

Yes

17

20

No

11

15

CPS SGTCS CPS SGTCS PGTCS CPS

M13 (SEM = 1.47)

M16.8 (SEM) = 0.64)

3

CPS SGTCS

3

CPS

2

CPS SGTCS

2

CPS

4

CPS SGTCS CPS

4 2 M2.7 (SEM0.26)

CPS SGTCS CPS CPS SGTCS CPS

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3.2.2. Participation in occupational and educational activities In almost all cases, the onset of epilepsy happened when PWE were in their educational years. In 6 cases, they stopped attending school abruptly to seek proper medical attention and to take control of the situation. All six PWE and CEs noted that discrimination from peers and teachers was a critical factor that led them to stop school. “The teacher used to tell me that I was an idiot, a retarded, and that lowered my mood, my self-esteem. And the attacks, the visits to the doctors, the meds, everything. I became so depressed that I didn't want to go to high school anymore. At jobs it's the same … what lowers my mood is to try many times, and again and again, and sooner or later you get fired from all. For me, it's enough!” [ME3] The attitude of parents towards school discrimination is crucial for the continuation of education. In more than half of the cases, the parent's behavior was to withdraw PWE from school without looking for possible solutions “I went to the school, they asked me to go … because there were problems, sometimes she got sick and distracted the others, you know, because having someone ill in a schoolroom or anywhere always distracts the other people, and is a waste of time, to help her or lift her … always distracts … it was a problem in school so I took her out …” [CM3] Of all PWE interviewed, only two were employed. All stated difficulties to find and maintain jobs because of discrimination. Usually, when they disclose their illness at the time of application, the job is denied. Some PWE prefer to conceal it, but they stated that when they had a seizure, they usually got fired. This led them to try to find short-term employments or freelance jobs. Jobless PWE said that unemployment renders them dependent on others to buy medications or puts them at risk for not having resources to get them. The PWE describe that the lack of occupational activities isolates them and contributes to rejection from society. In any case, PWE or CEs looked for legal resources to press charges for discrimination after being withdrawn from schools or jobs without justification, but were unable to find such professional services.

3.2.3. Peer and couple relationships Half of PWE had never had a stable couple relationship at the time of the interviews. They reported that when they try to make new relationships, almost all people leave them when they know about the disease or when they witness a seizure. To seek acceptance, they relate with persons with other stigmatizing conditions or with a lower social class. Two participants split with their spouses after epilepsy onset. “This time I didn't tell him about the illness. After two months of dating everything was well, but then I had a seizure. That day he took me home, and never answered again my phonecalls.” [WE2] Friendship relationships are also scarce. People with epilepsy described that their social groups weakened after epilepsy onset. After being rejected, they become uninterested in making new friendships or became fearful of subsequent experiences of rejection. The participants who acknowledged having friends perceived that in social encounters, they are treated differently, and, frequently, friends are overconcerned with their safety, making them feel uncomfortable. In Table 2, we summarize the types of discrimination PWE experience in the context of occupational and educational activities, and interpersonal relationships.

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Table 2 Types of social discrimination. Occupational and educational discrimination Type I Denial of the job or rejection from school after disclosure of the illness. Type II Indication of teachers to withdraw after having a seizure at school. Job dismissal after having a seizure at workplace. Type III Peer discrimination or isolation at school or in the workplace. Interpersonal relationship discrimination Type I Rejection from potential partners or friends after being informed of the illness or after witnessing a seizure. Type II Split or divorce of the couple after epilepsy onset. Loss of friendships after epilepsy onset. Type III Formation of couple or friendship relationships with persons who have other stigmatizing conditions or with a lower social class.

3.3. Health care professionals 3.3.1. Health professionals' sociodemographic data Interviewed physicians were a 33-year-old neuropsychiatrist (NP), a 42-year-old neurosurgeon specialized in epilepsy (NS), a 28-year-old resident of psychiatry (RP), a 43-year-old neurologist (NL), and a 34year-old resident in epilepsy (RE). On average, they had had contact with PWE for 9 years. Their experience was in clinical activities and clinical research. 3.3.2. Definition of epilepsy and treatment When asked about their general concept of epilepsy, all physicians emphasized a biological perspectives on epilepsy. “It is a chronic neurological disease characterized by sudden, recurrent seizures provoked by abnormal electrical discharges of the brain. There are many origins of epilepsy, electrical and biochemical imbalances provoke the seizures.” [NL] They stated that the main objective of treatment is “seizure control”, which means decreasing the number of seizures to the least possible. Four physicians reported that quality of life depends on this. “What we look for is seizure control, because the better control you have, that will help the caregiver and the patient. With the medications and the recommendations we offer we can achieve adequate control, so they can have a normal life. Patients ask if they can do different types of activities. We emphasize that it is crucial to follow our recommendations, “don't drink alcohol, sleep well, take your medications and then you'll get adequate control and a good quality of life.” [RE] Physicians told us about the interventions offered at NINN to PWE. Four spoke about “seizure control” as the main target. Interventions are of three types: antiepileptic medications, recommendations to avoid certain behaviors that can trigger a seizure, and, in exceptional cases, epilepsy surgery. In the first consultation, a brain magnetic resonance image, an electroencephalogram, and general lab tests are obtained. In follow-up visits, the number and type of seizures per month are evaluated, serum levels of medications are checked, and adjustments are made if necessary. When depression is suspected by neurologists or epileptologists, PWE are sent for a consultation to a neuropsychiatrist. Psychiatrists state that there is a significant occurrence of underdiagnosis and undertreatment of anxiety and depressive disorders. They report that when they receive a PWE with a depressive or anxiety disorder, they note that the patient has had symptoms for many years without receiving a diagnosis or any kind of treatment. The National Institute of Neurology and Neurosurgery of Mexico also offers monthly psychoeducational talks where a physician gives medical explanations about different topics such as “medications and adverse

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effects”, “classification of seizures”, and “general recommendations and healthy lifestyles for PWE”. At these talks, the biomedical perspective prevails. Physicians have the perception that with these measures, the specialized services for epilepsy offer an integrated treatment for epilepsy. When we asked about their view of the stigma that PWE undergo, three physicians answered that if seizures are controlled, PWE are not stigmatized. Two acknowledged that stigma of epilepsy is a great burden, and all agreed that the psychosocial aspects of the illness are very complex and that their management has to be done elsewhere. Two physicians exhibited stigmatizing views towards their patients. “About having a couple they have to understand that they always will be dependent on others, so they have to be honest and let the other decide freely. Because they take many medications, sometimes they get depressed, and they don't reason well. They have to think well if they are suited for having children. I think it's too much of a burden to be with an epileptic.” [RE] 3.4. Perceptions of PWE and physicians of life domains most affected by epilepsy In Table 3, correlations of the life domains that PWE and physicians perceive as the most problematic because of epilepsy are shown. For PWE, psychosocial domains associated with epilepsy such as people's reactions to seizures, occupational/educational discrimination, family mistreatment, and isolation (9/10 (90%) vs 2/5 (40%) p = 0.077) are the most problematic, followed by the emotional domains (self-confidence (6/10 (60%) vs 0/5 (0%) p = 0.044) and depression/sadness). They stated that the physical aspects of seizures and limitations of their activities are not a problem because, after having epilepsy for so many years, they are used to them. “No, the attacks are not what limits me, I've been having them for so many years, and I only have one or two per month. If I had fear to seizures I could not live, I could not live at all. Epilepsy limits you when you are there, with people, how they react towards you, even if you're not having an attack. At the beginning you try to be strong, and don't let that weaken you, but after so many years you see yourself isolated, jobless, and that undermines you.” [ME3] Contrary to PWE views, for physicians, the physical domains such as seizure control (2/10 (20%) vs 5/5 (100%) p = 0.007), adverse effects of medications (4/10 (40%) vs 5/5 (100%)), and limitations regarding activities (1/10 (10%) vs 4/5 (80%) p = 0.017) were perceived as the

most problematic. Only two physicians recognized that PWE may have some psychosocial difficulties in their lives. They acknowledged that some patients may be depressed, but during their consultation, “there is no time to include emotional difficulties”. Medication costs were a major concern for PWE and physicians, and they all agreed that in Mexico, there is a lack of public policies that promote economic support for medications. 4. Discussion Every stigmatizing condition has particular features that determine the degree of impact for sufferers. Epileptic seizures are not permanently evident within individuals, but their unexpected and dramatic nature triggers a very negative impression from strangers in public places towards PWE. In our participants, frequency (mean: 12 to 2 per month) and type of seizures (mostly generalized tonic–clonic seizures to complex partial seizures with occasional generalization) have improved from epilepsy onset to the time of the study. However, PWE-internalized stigma became evident when they indicated that even without seizures, it would be impossible for them to have a “normal” life. Everyday social encounters are stressful events because they perceive that people treat them coldly, not wanting them to be there. Consequently, PWE avoid social contacts and become isolated. These findings are similar to those reported in a recent Chinese study. Guo et al. [14] reported that the fear of “the next seizure” was the biggest psychological problem of PWE. They believe that this event can reinforce negative attitudes in contexts where people know about their sickness or can start the process of stigmatization in novel social situations. Carer accounts of the reactions that people exhibit in front of a person having seizures are relevant to understanding attitudes that are directed in public towards PWE in everyday encounters. Here, we can see that the powerful stereotype constituted by negative notions of danger, threat, sin, madness, supernatural forces, and contagion attached to epilepsy prevails in Mexican poor urban settings. Jacoby [15] proposes that the universality of stigma of epilepsy revolves around the total loss of control that occurs during seizures, which represents a reversion to the primitive, and violates cultural norms regarding social interaction. We agree with this explanation, but that stigma is more severe in cultural settings where we believe the general population's low health literacy and lay cultural explanations of disease revolve around supernatural forces and divine punishment. These findings were also recently replicated in a study of a Pakistani social group where religious explanations about epilepsy underpinned severe forms of marginalization towards PWE [16]. Previous studies have reported a worse social prognosis in PWE who have difficult-to-control epilepsy because seizures, which are the main mark of stigma, appear frequently [17]. All of our participants had

Table 3 Patients' and physicians' perception of life domains most affected by epilepsy.

Social domains

Psychological domains

Physical domains

Domain

PWE's perceptions of life domains most affected by epilepsy (N = 10)

Physician’s perceptions of life domains most affected by epilepsy (N = 5)

p

People's reactions to seizures Difficulties in peer/couple relationships Occupational/educational discrimination Family mistreatment Isolation Feelings of not being understood Self-confidence Depression/sadness Seizure control Adverse effects of medications Medication costs Limitation to perform activities

7 (70%) 6 (60%) 8 (80%) 6 (60%) 9 (90%) 5 (50%) 6 (60%) 7 (70%) 2 (20%) 4 (40%) 5 (50%) 1 (10%)

1 (20%) 2 (40%) 2 (40%) 2 (40%) 2 (40%) 0 0 3 (60%) 5 (100%) 5 (100%) 5 (100%) 4 (80%)

0.119 0.608 0.251 0.608 0.077 0.231 0.044 1.000 0.007 0.044 0.101 0.017

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difficult-to-treat temporal lobe epilepsy, with a mean duration of 13 years of successful treatment at NINN. However, they perceived a discrepancy between the improvement of seizure frequency and severity and the permanent negative outcomes in their social lives. From our results, the experience and internalization of stigma, the low participation in occupational and educational activities, and the scarce peer and couple relationships could be the same regardless of treatment response. However, further studies in this respect are needed. Public interpersonal stigma was also shown in the accounts of our participants, as they experience rejection when they try to establish new peer and couple relationships or they lose spouses/significant others or friends that they had before the onset of epilepsy (Table 2). As reported in a recent Bulgarian study [18], structural stigma is apparent through different types of discrimination in educational and working contexts (Table 2), resulting in poor participation in activities where PWE are physically and cognitively capable of participating. In our study, the main explanations that PWE received when fired from a job or withdrawn from school were their lack of professional or educational capabilities, and concern of teachers and employers for their safety at school or work. Consistent with these explanations, repeated experiences with rejection and blame were felt by our participants. Reviews [19] propose a multifactorial cause of unemployment: impediments due to seizures; psychosocial factors (low self-esteem, selfperception of inadequacy, low self-confidence, and bad coping abilities); and stigma and social discrimination. In our study, PWE and CEs perceived discriminating attitudes as the main cause of unemployment. After several experiences of rejection, PWE can feel less skillful and able

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to participate in activities, can have defensive attitudes, or can display behaviors of distrust because of the apprehension of being exposed to further events of discrimination. Self-isolation is frequent with important consequences for quality of life [20,21]. We consider that psychosocial factors described in other studies as causes of unemployment are the natural consequences of the process of structural stigmatization that PWE undergo. Fig. 1 shows how the diverse forms of stigma encapsulate the PWE, who after suffering stigmatization at interpersonal and structural levels, internalizes stigma within themselves. It is important to underline that even if the limited social lives of PWE can be seen as coming from a lack of personal capabilities and effort, what creates this situation is the devalued position in the social structure where they are placed by perpetrators of stigma and discrimination. This devalued position also reinforces the negative evaluations of difference and disability that are held. A profound consequence of structural stigmatization is a lack of opportunities that PWE could access if they did not have the stigmatizing condition. Without opportunities, the individuals are confined to continue in this vicious circle. Recent theoretical approaches to stigma propose that stigma is embedded in a larger cultural context that shapes the extent to which prejudice and discrimination can take place. National contexts provide norms as acceptable or unacceptable responses towards stigmatized groups [22]. Our study reveals ongoing acts of structural discrimination that take place in Mexico towards PWE, showing a lack of respect of basic human rights such as the right to equal treatment, the right to work, and the right to education. Mexico is a signatory to the Universal

Fig. 1. Structural, interpersonal, and internalized forms of stigma.

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Declaration to Human Rights (1948) [23] and to other provisions that protect the rights of access to employment and education. Overt acts of structural discrimination in these areas, together with the PWE going along when being withdrawn from school or jobs without justification, shows a lack of the population's knowledge of their human rights and a lack of available legal resources against discrimination in Mexico.

4.1. Health providers' views and professional medical services The health providers' description of epilepsy as a brain disease that provokes seizures that need to be “controlled” by medications and lifestyle recommendations exemplifies the predominance of their biological explanatory model [8]. This explains the narrow and too optimistic view about what the treatments and services at NINN (also designed according to this biological explanatory model) can offer to PWE. The underrecognition and undertreatment of psychiatric disorders, widely described in the literature [24,25], are widespread. The testimonials of health professionals who show stigmatization towards patients show us how health services can also be sources of structural stigma. Recently, Yang et al. [26] reported high levels of structural stigma coming from health professionals, predominantly in rural settings. An important finding of their study was the better attitude of urban health professionals in China towards PWE. They explain that this difference can be explained by the highly sophisticated health care facilities of Beijing and their innovative promotion of support for PWE that includes a psychosocial approach. This contrast of views of epilepsy and stigmatizing attitudes towards PWE held by highly-qualified health professionals of two developed urban contexts can be explained by the lack of programs in Mexico that overtly approach psychosocial issues of epilepsy. The health professionals stated that PWE were primarily impacted by the physical aspects of epilepsy, which is in stark contrast with the perspectives of PWE themselves, who emphasized the social and emotional impact on their lives (Table 3). This discrepancy is explained by the distinctions between disease and illness. This distinction holds that disease in the medical paradigm is a malfunctioning of biological and psychophysiological processes in the individual. In our study this was shown in the health professionals' concept of epilepsy, and perceptions of the most affected life domains of PWE, anchored in a biological explanatory model of epilepsy. By contrast, illness, as Kleinman explains, “is shaped by cultural factors governing perception, labeling, explanation, and valuation of the discomforting experience, processes embedded in a complex family, and social and cultural nexus” [8]. Eisenberg [27] asserts that while health professionals diagnose diseases, individuals suffer illness. The underlying difference of this concept is a specialized conceptualization of the pathologies of the body held by professionals (disease) in contrast to the subjective experience of suffering (illness) that individuals have of those pathologies. In our participants' illness narratives, we could bear witness to the profound emotional consequences and social suffering that emerge from the stigma associated with epilepsy. Regrettably, most health professionals seemed unaware of this phenomenon. As we could verify in this study, the stigmatization process suffered by PWE is not limited to being labeled (being pointed out) or discriminated (to receive needed medical treatment). In practical terms, PWE are excluded from society. People with epilepsy have very scarce social resources to contend with the social segregation which they experience. Health services are local worlds where they go to meet with epilepsy experts, the “experts of what they suffer from”. They constantly approach health services holding expectations of receiving remedies to alleviate their suffering. In these settings, they receive complex scientific and technological interventions for seizure control, while family and social domains affected by epilepsy are not addressed.

5. Conclusion Nowadays, technological and scientific progress understanding epilepsy and the innovative treatments for seizure control are based on the biological understanding of epilepsy. However, it has to be recognized that epilepsy suffering is also conditioned by cultural and social forces that need to be approached. Health services, to be responsive to illness experiences, should attend to the complex health–illness care process based on a broad comprehension that underscores all biological, psychological, and social domains of illnesses. In Mexico, integrated interventions that break through epilepsy stigma are needed.

6. Limitations The most important limitations of our study were the short selection period and the relatively small number of study participants which limited the statistical analysis of the data. Consequently, the results of this study cannot be easily extrapolated to the Mexican population with epilepsy. However, we used a typology to make a homogenous sample. We only included patients with refractory temporal lobe epilepsy, who had been treated at NINN for at least 5 years and with the requirement of an accompanying relative who could provide reliable information about the patient's experience of stigma and discrimination. Although this sample does not represent the general problem of epilepsy in Mexico, the purpose of this qualitative study was to understand the subjective experience of epilepsy (as outlined by discourse during the interview) and the general manifestations of internalized, interpersonal, and structural stigma. This is necessary in order to make institutions more aware of their involvement in this problem, to develop testable hypotheses, and to design and test effective psychosocial interventions.

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