Epilepsy & Behavior 32 (2014) 162–169

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Epilepsy & Behavior

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Stigma experience of people with epilepsy in Mexico and views of healthcare providers

Mariana Espínola-Nadurille a,b, Daniel Crail-Melendez a, Maria Alejandra Sánchez-Guzmán b,⁎a Neuropsychiatry Unit, National Institute of Neurology and Neurosurgery, Mexico City, Mexicob Social Research Department, National Institute of Neurology and Neurosurgery, Mexico City, Mexico

⁎ Corresponding author at: Social Research Departmentand Neurosurgery, Insurgentes Sur 3877, Col. La Fama, ZFax: +52 55 56084850.

E-mail address: alesanguz@yahoo.com.mx (M.A. Sánc

1525-5050/$ – see front matter © 2013 Elsevier Inc. All rihttp://dx.doi.org/10.1016/j.yebeh.2013.12.007

a b s t r a c t

a r t i c l e i n f o

Article history:Received 2 October 2013Revised 2 December 2013Accepted 5 December 2013Available online 16 January 2014

Keywords:EpilepsyStigmaDiscriminationExperienceHealth servicesQualitative methodology

Epilepsy is a neurological disorder with neurobiological, cognitive, psychological, and social consequences. Epi-lepsy stigma is a social determinant of ill health that affects the quality of life of people who suffer from epilepsyand 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 qualitativeinterviews with 10 persons with temporal lobe epilepsy (PWE) (we avoided terms such as “epileptics” or “epi-leptic patients” because they can be labeling and stigmatizing), 10 carers (CEs) of PWEwho attended the epilepsyclinic of the Institute of Neurology and Neurosurgery of Mexico, and 5 physicians specialized in epilepsy. The ob-jective of the study was to identify the following: perceptions that could indicate any form of discrimination dueto having epilepsy, reactions of people in front of a person having seizures, and social functioning of PWE sinceepilepsy onset, particularly their interpersonal relationships and participation in educational or working activi-ties. Through the health providers' narratives, we explored the mainstream care practices, their perspectiveson epilepsy, and their views about how the disease should be addressed. Thematic guidelines were elaboratedfor 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 guide-lines and then proceeded to finer categorization to elaborate the analytical categories. Epilepsy was attached toa powerful stereotype that includes notions of contamination, danger, sin, divine punishment, supernaturalforces, and madness. Internalized, interpersonal, and institutional stigma prevents PWE from participating inschool and employment and reduces their opportunities to establish peer and couple relationships. Mexican'sovert impunity of structural discrimination towards PWE shows a lack of available legal resources that protecttheir human rights. The narrowbiomedical concept that physicians have of epilepsy is consistentwith the limitedmedical practices that are offered to treat epilepsy at the health services in Mexico. Comprehensive treatmentand integrated services for epilepsy must incorporate psychosocial programs that include epilepsy stigma as amajor component of the disease.

© 2013 Elsevier Inc. All rights reserved.

1. Introduction

In recent years, health-related stigma has attracted increased atten-tion as a social determinant of illness–health [1]. Stigma is a global phe-nomenon associated with several chronic diseases with great negativeimpact on patients and their families and deleterious consequences intheir quality of life. Some of its effects include delay in diagnosis andtreatment, risk behaviors, and poor adherence to treatment. It also hasa dramatic effect on the distribution of life chances such as educationand employment [2].

Weiss [3] defines health-related stigma as a “social process, experi-enced or anticipated, characterized by exclusion, rejection, blame, or

, National Institute of NeurologyC 14269, Mexico City, Mexico.

hez-Guzmán).

ghts reserved.

devaluation that results from experience, perception, or an adverse socialjudgment about apersonor group. This judgment is basedon anenduringfeature of identity conferred by a health problem or health-related condi-tion, and the judgment is in some essential waymedically unwarranted”.

The need to explore stigma in epilepsy was underscored in 1997 atthe launch of the global campaign “Epilepsy: Out of the Shadows” orga-nized by the World Health Organization, the International LeagueAgainst Epilepsy and the International Bureau for Epilepsy. Epilepsystigma was recognized as a worldwide public health concern that in-creases the burden of the disease and that renders a poor social progno-sis 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 diseasesand for mental health problems [5].

Epilepsy stigma has been documented in many different countriesand in rural and urban settings [6]. By virtue of its complexity, epilepsystigma has been approached at different levels, such as the personal ex-perience of stigma, attitudes towards people with epilepsy, and “felt”

163M. Espínola-Nadurille et al. / Epilepsy & Behavior 32 (2014) 162–169

(subjective experiences of stigma) vs “enacted” (objective acts of dis-crimination and social exclusion) stigma.

Recently, three broadmain levels have been proposed to understandhow stigma operates: internalized (within the PWE); interpersonal(within the PWE family and persons outside the family group); and in-stitutional levels (structural expressions of stigma, i.e., schools, jobs, andhealth services) [7].

Kleinman [8] underlines that illness experiences are part of socialsystems and are influenced by culture. Stigma is a social determinantof health that strongly shapes the way PWE live their illness, andit has to be understood in the particular context where it takes place.In this general context, epilepsy health services need to be studiedas key components to illness outcomes, as they can be conduciveor not to favorable illness experiences. No study of epilepsy stigmaand epilepsy health services has been performed in Mexico, to ourknowledge.

The objective of this studywas to explore the experience of stigma ofPWE seen at the National Institute of Neurology and Neurosurgery ofMexico and its consequences in their social lives. We also studied themainstream epilepsy health care practices, physicians' perspectives onepilepsy, and their views about how it should be addressed. With thisapproach, we aimed to study how stigma operates in the lives of PWEat the internalized, interpersonal, and institutional levels.

2. Methods

The findings are based on a cross-sectional study. With an ethno-graphic approach and qualitative methodology, we explored experi-ences and views of stigma in PWE. We interviewed 10 PWE seen atthe National Institute of Neurology and Neurosurgery of Mexico(NINN); 10 carers (CEs) who generally accompany PWE to their consul-tations and, in their everyday lives, spend most of the time with them,and 5 attending physicians of the epilepsy clinic. The study protocolwas approved by the Ethics Committee of NINN. The National Instituteof Neurology and Neurosurgery of Mexico is a tertiary referral centerthat receives patients from all over the country and whose main objec-tives are patient care, research, and human resources training regardingneurologic diseases. The National Institute of Neurology and Neurosur-gery of Mexico provides care to individuals who lack insurance cover-age, mainly people who work in the informal economy or who areunemployed and are part of the poorest sector of society. At NINN, epi-lepsy is the most commonly seen disease, with a prevalence of 30% inthe consultation services.

From the time period of January to July 2011, a research team, con-stituted by one neuropsychiatrist and two researchers of the social re-search department, examined 50 clinical charts of PWE who wereregularly seen for their appointments at the epilepsy clinic. Twenty pa-tients met the inclusion criteria of having temporal lobe epilepsy (dem-onstrated origin of seizures in the medial part of the temporal lobe),which was classified as “difficult-to-control” epilepsy (two or more sei-zures per month despite high doses or multiple treatment regimens)[9]; who had received health care at NINN for at least five years beforethe study; and who had a family member who generally accompaniesthem to their consultations and, in his/her everyday life, spends mostof the time with them. After a thorough team review of the charts,only ten PWE met all the inclusion criteria. Persons with epilepsy andcarers were interviewed at the NINN research area. The physicianswho participated in the study met the criteria of being in contact withPWE for at least 4 years. All participants signed a letter of informed con-sent, and confidentiality was preserved in all cases.

Aiming to record individuals' personal feelings and the lived experi-ence of epilepsy, we selected phenomenology as our theoretical andmethodological approach. As Schutz asserts, conscious thoughts are in-tersubjective, and by means of their investigation, we can understandthe significant processes that take place within the individuals, letting

us understand how they interpret their own behaviors as well asother persons' behaviors as they go through their social lives [10].

The contents of the thematic guidelines were obtained by twomeans: 1) review of the literature on stigma [11] and stigma in epi-lepsy [12,13] and 2) emergent themes obtained from two pilot in-terviews with PWE, two pilot interviews with CEs, and 1 interviewwith a resident physician studying epileptology. The informationfrom these pilot interviews was not included in the results. Theguidelines explored PWE perceptions that could indicate any formof discrimination due to their health condition, how people reactedwhen they had a seizure, and their social functioning since epilepsyonset, particularly their interpersonal relationships and participa-tion in educational or working activities. The CE guideline exploredPWE social functioning in the aforementioned areas and reactions ofpeople in front of a person having a seizure. Physicians' guidelinesexplored their perspectives on epilepsy, the mainstream care prac-tices at NINN, and their views about health services.

In-depth semistructured interviews were carried out to all partici-pants. All interviews, with a mean duration of 90 min, were recordedand literally transcribed in a Word format. All information was proc-essed with the use of the computer-assisted data analysis, Atlas.ti5.We made a codification of broad themes that corresponded to themain topics of the interview guidelines. The categories with the infor-mation 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 occupa-tional activitiesCEs. Discrimination attitudes towards them and their relative(PWE)—a)when having a seizure in public, b) in interpersonal rela-tionships, and c) in educational and occupational activitiesPhysicians. Views and perceptions of the following: a) concept ofepilepsy, 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 re-read by the three members of the research team. The elaborated codifi-cations were also analyzed looking for similarities and discrepancies.Subsequently, a finer codification was made to find the most importantmeanings and proceed to elaborate the analytical categories. Based onthe themes thatwere used tomake the categorization of the data, typol-ogies of social discrimination were carried out: interpersonal relation-ships, and educational and occupational activities. Likewise, the socialcontexts and settingswhere PWE aremost stigmatized and discriminat-ed according to CEs and physicianswere classified. Lastly, we proceededto organize the most relevant data in tables.

The PWE, CEs, and physicians who participated in the pilot inter-views were asked what areas of PWE they perceived as the most affect-ed by epilepsy. With this information, a structured interview wascreated that included items of social, psychological, and physical life do-mains (Table 3). Perceptions of PWE and physicians of these areas wereregistered. We used descriptive statistics in terms of proportions fornominal variables. In order to evaluate for significant relationships, weused 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 to55 years of age, from Mexico City, and with a code 2 assigned by thesocial work department (low socioeconomical class). The averageage of participants was 38 years (SEM = 2.38), most of them weresingle. Eight still lived in their parents' house. Six participants stoppedschool after junior high, 3 after elementary school, 1 completed highschool, and 1 pursued a technical career in engineering. Only two

164 M. Espínola-Nadurille et al. / Epilepsy & Behavior 32 (2014) 162–169

participants were employed. Almost all the CEs interviewed werewomen, in 6 cases the mother, with an average age of 62.Sociodemographic data pertaining to each participant are shown inTable 1. A code was given to maintain confidentiality.

The average duration for receiving health care at NINN was 13years. Clinical data of PWE are shown in Table 1. Seven participantsbegan having seizures in adolescence, only three started in child-hood. The mean age of epilepsy onset was 13 years (SEM = 1.47).At onset of epilepsy and before receiving treatment at NINN, themean number of seizures per month was 16.8 (SEM = 0.64), andwere predominantly tonic–clonic seizures. At the time of the study,the mean number of seizures was 2.7 (SEM = 0.26) per month, pre-dominantly complex partial seizures, and all participants took twoantiepileptic medications for seizure treatment.

3.2. Stigma of epilepsy

3.2.1. Features of epilepsy stigma and reactions of people when theyhave a seizure

Participants described that epilepsy is not evident in everymoment,but when a seizure occurs, it is impossible to hide. All explained that intheir social contexts, their condition is known by the entire community.Evenwhen seizures are infrequent, the knowledge of others about themhaving epilepsy prevents them from being treated as “normal”. Eightperceived that in social encounters the others always see them “differ-ent” as if they “represent a threat”.

ME2: “With my meds I'm, let's say, “ok”, I rarely have seizures, andmany of them are not generalized, but what I need is them to see meall right, that they see me healthy. What happens, is that all of themalready know me, and they have fear of my seizures all the time.

Table 1Sociodemographic and clinical data of PWE.

PWE Age Maritalstatus

Lives with Carer School grade Emplo

WE1 45 Divorced Parents Mother 66y (CW1)

Junior high No

WE2 31 Single Mother andsiblings

Mother 48y, (CW2)

Junior high No

WE3 41 Married Husband Mother 68y, (CW3)

High school No

WE4 26 Single Parents Sister 31y.(CW4)

Junior high Yes

WE5 50 Single Mother Sister 40y.(CW5)

Elementaryschool

No

ME1 45 Single Parents Father 65y (CM1)

Elementaryschool

No

ME2 33 Divorced Mother Mother 69y (CM2)

Elementaryschool

No

ME3 32 Single Mother Mother 66y (CM3)

Junior high No

ME4 41 Married Wife andmother

Brother 36y (CM3)

Technicalcareer

Yes

ME5 38 Single Parents Mother 60y (CM4)

Elementaryschool

No

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.

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

Interviewer: “I am not worried.”

ME2: “But they do have fear, all the time! And that is why they rejectme, 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 loseconsciousness, but after recovering alertness, people's reaction informsthem that the event provoked very negative impressions. For thisscenario, the CEs are the best witnesses of the situation. All CEs re-port that a seizure in public is a very complicated situation becausethey have to give first aid to their relatives and withstand reactionsof unknown people. Sometimes people try to help them, but, fre-quently, 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'ssome water, do we call an ambulance?… to give support, to help”; butmost of them get away, because they get scared I suppose, they feelstrange and they just move away with disgust. People must think thathe is dangerous, mad or maybe that he is dying! Or possessed by somedemon! Sometimes I feel that they think that he can infect them withsome disease.”

[CM1]

yed Age at epilepsyonset

Seizures at onsetseizures/month

Seizure typeat onset

Seizures attime of study

Seizure typeat time of study

16 15 PGTCSSGTCSCPS

3 CPSSGTCS

14 18 CPSSGTCS

3 CPS

18 15 PGTCSCPSSGTCS

2 CPSSGTCS

18 18 CPSSGTCS

2 CPS

8 16 PGTCS 4 CPSSGTCS

4 16 PGTCS 2 CPS

10 20 PGTCS 2 CPSSGTCS

14 15 CPSSGTCS

3 CPS

17 20 CPSSGTCS

4 CPSSGTCS

11 15 PGTCSCPS

2 CPS

M13(SEM = 1.47)

M16.8(SEM) = 0.64)

M2.7(SEM0.26)

Table 2Types of social discrimination.

Occupational and educational discriminationType 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 discriminationType 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.

165M. Espínola-Nadurille et al. / Epilepsy & Behavior 32 (2014) 162–169

3.2.2. Participation in occupational and educational activitiesIn almost all cases, the onset of epilepsy happened when PWE

were in their educational years. In 6 cases, they stopped attendingschool abruptly to seek proper medical attention and to take controlof the situation. All six PWE and CEs noted that discrimination frompeers 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 thatloweredmymood, my self-esteem. And the attacks, the visits to the doc-tors, themeds, everything. I became so depressed that I didn't want to goto high school anymore. At jobs it's the same…what lowersmymood isto trymany times, and again and again, and sooner or later you get firedfrom all. For me, it's enough!”

[ME3]

The attitude of parents towards school discrimination is crucial forthe continuation of education. In more than half of the cases, theparent's behavior was to withdraw PWE from school without lookingfor possible solutions

“I went to the school, they asked me to go … because there wereproblems, sometimes she got sick and distracted the others, youknow, because having someone ill in a schoolroom or anywherealways distracts the other people, and is a waste of time, to helpher or lift her … always distracts … it was a problem in school so Itook her out …”

[CM3]

Of all PWE interviewed, only twowere employed. All stated difficul-ties to find and maintain jobs because of discrimination. Usually, whenthey disclose their illness at the time of application, the job is denied.Some PWEprefer to conceal it, but they stated that when they had a sei-zure, they usually got fired. This led them to try to find short-term em-ployments or freelance jobs. Jobless PWE said that unemploymentrenders them dependent on others to buy medications or puts themat risk for not having resources to get them. The PWE describe thatthe lack of occupational activities isolates them and contributes to rejec-tion from society.

In any case, PWE or CEs looked for legal resources to press chargesfor discrimination after being withdrawn from schools or jobs withoutjustification, but were unable to find such professional services.

3.2.3. Peer and couple relationshipsHalf of PWE had never had a stable couple relationship at the time

of the interviews. They reported that when they try to make new re-lationships, almost all people leave them when they know about thedisease or when they witness a seizure. To seek acceptance, they re-late with persons with other stigmatizing conditions or with a lowersocial class. Two participants split with their spouses after epilepsyonset.

“This time I didn't tell him about the illness. After two months of datingeverythingwaswell, but then I had a seizure. That day he tookme home,and never answered again my phonecalls.”

[WE2]

Friendship relationships are also scarce. People with epilepsy de-scribed that their social groups weakened after epilepsy onset. Afterbeing rejected, they become uninterested in making new friendshipsor became fearful of subsequent experiences of rejection. The partici-pants who acknowledged having friends perceived that in social en-counters, they are treated differently, and, frequently, friends areoverconcerned with their safety, making them feel uncomfortable.

In Table 2, we summarize the types of discrimination PWE experi-ence in the context of occupational and educational activities, and inter-personal relationships.

3.3. Health care professionals

3.3.1. Health professionals' sociodemographic dataInterviewed physicianswere a 33-year-old neuropsychiatrist (NP), a

42-year-old neurosurgeon specialized in epilepsy (NS), a 28-year-oldresident of psychiatry (RP), a 43-year-old neurologist (NL), and a 34-year-old resident in epilepsy (RE). On average, they had had contactwith PWE for 9 years. Their experiencewas in clinical activities and clin-ical research.

3.3.2. Definition of epilepsy and treatmentWhen asked about their general concept of epilepsy, all physicians

emphasized a biological perspectives on epilepsy.

“It is a chronic neurological disease characterized by sudden, recurrentseizures provoked by abnormal electrical discharges of the brain. Therearemany origins of epilepsy, electrical and biochemical imbalances pro-voke the seizures.”

[NL]

They stated that themain 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 youhave, that will help the caregiver and the patient. With the medicationsand the recommendations we offer we can achieve adequate control, sothey can have a normal life. Patients ask if they can do different types ofactivities. We emphasize that it is crucial to follow our recommenda-tions, “don't drink alcohol, sleep well, take your medications and thenyou'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. Interventionsare of three types: antiepileptic medications, recommendations toavoid certain behaviors that can trigger a seizure, and, in exceptionalcases, epilepsy surgery. In the first consultation, a brain magnetic reso-nance image, an electroencephalogram, and general lab tests areobtained. In follow-up visits, the number and type of seizures permonth are evaluated, serum levels of medications are checked, and ad-justments are made if necessary. When depression is suspected byneurologists or epileptologists, PWE are sent for a consultation to a neu-ropsychiatrist. Psychiatrists state that there is a significant occurrence ofunderdiagnosis and undertreatment of anxiety and depressive disor-ders. They report that when they receive a PWE with a depressive oranxiety disorder, they note that the patient has had symptoms formany years without receiving a diagnosis or any kind of treatment.

TheNational Institute of Neurology andNeurosurgery ofMexico alsooffersmonthly psychoeducational talkswhere a physician givesmedicalexplanations about different topics such as “medications and adverse

166 M. Espínola-Nadurille et al. / Epilepsy & Behavior 32 (2014) 162–169

effects”, “classification of seizures”, and “general recommendations andhealthy lifestyles for PWE”. At these talks, the biomedical perspectiveprevails. Physicians have the perception that with these measures, thespecialized services for epilepsy offer an integrated treatment forepilepsy.

When we asked about their view of the stigma that PWE undergo,three physicians answered that if seizures are controlled, PWE are notstigmatized. Two acknowledged that stigma of epilepsy is a great bur-den, and all agreed that the psychosocial aspects of the illness are verycomplex and that their management has to be done elsewhere. Twophysicians exhibited stigmatizing views towards their patients.

“About having a couple they have to understand that they always willbe dependent on others, so they have to be honest and let the other de-cide freely. Because they take many medications, sometimes they getdepressed, and they don't reason well. They have to think well if theyare suited for having children. I think it's too much of a burden to bewith an epileptic.”

[RE]

3.4. Perceptions of PWE and physicians of life domains most affectedby epilepsy

In Table 3, correlations of the life domains that PWE and physiciansperceive as the most problematic because of epilepsy are shown. ForPWE, psychosocial domains associated with epilepsy such as people'sreactions to seizures, occupational/educational discrimination, familymistreatment, and isolation (9/10 (90%) vs 2/5 (40%) p = 0.077) arethe most problematic, followed by the emotional domains (self-confi-dence (6/10 (60%) vs 0/5 (0%) p = 0.044) and depression/sadness).They stated that the physical aspects of seizures and limitations oftheir activities are not a problem because, after having epilepsy for somany years, they are used to them.

“No, the attacks are not what limits me, I've been having them for somany years, and I only have one or two per month. If I had fear to sei-zures I could not live, I could not live at all. Epilepsy limits you whenyou are there, with people, how they react towards you, even if you'renot having an attack. At the beginning you try to be strong, and don'tlet 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 asseizure control (2/10 (20%) vs 5/5 (100%) p = 0.007), adverse effects ofmedications (4/10 (40%) vs 5/5 (100%)), and limitations regarding ac-tivities (1/10 (10%) vs 4/5 (80%) p = 0.017) were perceived as the

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

Domain PWE's percmost affect

Social domains People's reactions to seizures 7 (70%)Difficulties in peer/couple relationships 6 (60%)Occupational/educational discrimination 8 (80%)Family mistreatment 6 (60%)Isolation 9 (90%)

Psychological domains Feelings of not being understood 5 (50%)Self-confidence 6 (60%)Depression/sadness 7 (70%)

Physical domains Seizure control 2 (20%)Adverse effects of medications 4 (40%)Medication costs 5 (50%)Limitation to perform activities 1 (10%)

most problematic. Only two physicians recognized that PWE mayhave some psychosocial difficulties in their lives. They acknowledgedthat some patients may be depressed, but during their consultation,“there is no time to include emotional difficulties”. Medication costswere a major concern for PWE and physicians, and they all agreedthat in Mexico, there is a lack of public policies that promote economicsupport for medications.

4. Discussion

Every stigmatizing condition has particular features that determinethe degree of impact for sufferers. Epileptic seizures are not permanentlyevident within individuals, but their unexpected and dramatic naturetriggers a very negative impression from strangers in public places to-wards PWE. In our participants, frequency (mean: 12 to 2 per month)and type of seizures (mostly generalized tonic–clonic seizures to com-plex partial seizures with occasional generalization) have improvedfromepilepsyonset to the time of the study. However, PWE-internalizedstigma became evidentwhen they indicated that evenwithout seizures,it would be impossible for them to have a “normal” life. Everyday socialencounters are stressful events because they perceive that people treatthem coldly, notwanting them to be there. Consequently, PWE avoid so-cial contacts and become isolated. These findings are similar to those re-ported in a recent Chinese study. Guo et al. [14] reported that the fear of“the next seizure”was the biggest psychological problem of PWE. Theybelieve that this event can reinforce negative attitudes in contextswhere people know about their sickness or can start the process of stig-matization in novel social situations.

Carer accounts of the reactions that people exhibit in front of a per-son having seizures are relevant to understanding attitudes that are di-rected in public towards PWE in everyday encounters. Here, we can seethat the powerful stereotype constituted by negative notions of danger,threat, sin, madness, supernatural forces, and contagion attached to ep-ilepsy prevails inMexican poor urban settings. Jacoby [15] proposes thatthe universality of stigma of epilepsy revolves around the total loss ofcontrol that occurs during seizures, which represents a reversion tothe primitive, and violates cultural norms regarding social interaction.We agreewith this explanation, but that stigma ismore severe in cultur-al settingswherewe believe the general population's lowhealth literacyand lay cultural explanations of disease revolve around supernaturalforces and divine punishment. These findings were also recently repli-cated in a study of a Pakistani social groupwhere religious explanationsabout epilepsy underpinned severe forms of marginalization towardsPWE [16].

Previous studies have reported aworse social prognosis in PWEwhohave difficult-to-control epilepsy because seizures, which are the mainmark of stigma, appear frequently [17]. All of our participants had

eptions of life domainsed by epilepsy (N = 10)

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

p

1 (20%) 0.1192 (40%) 0.6082 (40%) 0.2512 (40%) 0.6082 (40%) 0.0770 0.2310 0.0443 (60%) 1.0005 (100%) 0.0075 (100%) 0.0445 (100%) 0.1014 (80%) 0.017

167M. Espínola-Nadurille et al. / Epilepsy & Behavior 32 (2014) 162–169

difficult-to-treat temporal lobe epilepsy, with a mean duration of 13years of successful treatment at NINN. However, they perceived a dis-crepancy between the improvement of seizure frequency and severityand the permanent negative outcomes in their social lives. From our re-sults, the experience and internalization of stigma, the low participationin occupational and educational activities, and the scarce peer and cou-ple 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 ourparticipants, as they experience rejection when they try to establishnew peer and couple relationships or they lose spouses/significantothers or friends that they had before the onset of epilepsy (Table 2).

As reported in a recent Bulgarian study [18], structural stigma is ap-parent through different types of discrimination in educational andworking contexts (Table 2), resulting in poor participation in activitieswhere PWE are physically and cognitively capable of participating. Inour study, the main explanations that PWE received when fired from ajob or withdrawn from school were their lack of professional or educa-tional capabilities, and concern of teachers and employers for their safe-ty at school or work. Consistent with these explanations, repeatedexperiences with rejection and blame were felt by our participants.

Reviews [19] propose a multifactorial cause of unemployment: im-pediments due to seizures; psychosocial factors (low self-esteem, self-perception of inadequacy, low self-confidence, and bad coping abili-ties); and stigma and social discrimination. In our study, PWE and CEsperceived discriminating attitudes as themain cause of unemployment.After several experiences of rejection, PWE can feel less skillful and able

Fig. 1. Structural, interpersonal, and

to participate in activities, can have defensive attitudes, or can displaybehaviors of distrust because of the apprehension of being exposed tofurther events of discrimination. Self-isolation is frequent with impor-tant consequences for quality of life [20,21].We consider that psychoso-cial factors described in other studies as causes of unemployment arethe natural consequences of the process of structural stigmatizationthat 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 thateven if the limited social lives of PWE can be seen as coming from a lackof personal capabilities and effort, what creates this situation is thedevalued position in the social structure where they are placed by per-petrators of stigma and discrimination. This devalued position also rein-forces the negative evaluations of difference and disability that are held.A profound consequence of structural stigmatization is a lack of oppor-tunities that PWE could access if they did not have the stigmatizing con-dition. Without opportunities, the individuals are confined to continuein this vicious circle.

Recent theoretical approaches to stigma propose that stigma is em-bedded in a larger cultural context that shapes the extent towhich prej-udice and discrimination can take place. National contexts providenorms as acceptable or unacceptable responses towards stigmatizedgroups [22]. Our study reveals ongoing acts of structural discriminationthat take place in Mexico towards PWE, showing a lack of respect ofbasic human rights such as the right to equal treatment, the right towork, and the right to education. Mexico is a signatory to the Universal

internalized forms of stigma.

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Declaration to Human Rights (1948) [23] and to other provisions thatprotect the rights of access to employment and education. Overt actsof structural discrimination in these areas, together with the PWEgoing along when being withdrawn from school or jobs without justifi-cation, shows a lack of the population's knowledge of their humanrights and a lack of available legal resources against discrimination inMexico.

4.1. Health providers' views and professional medical services

The health providers' description of epilepsy as a brain disease thatprovokes seizures that need to be “controlled” by medications and life-style recommendations exemplifies the predominance of their biologi-cal explanatory model [8]. This explains the narrow and too optimisticview aboutwhat the treatments and services at NINN (also designed ac-cording to this biological explanatory model) can offer to PWE. Theunderrecognition and undertreatment of psychiatric disorders, widelydescribed in the literature [24,25], are widespread. The testimonials ofhealth professionals who show stigmatization towards patients showus howhealth services can also be sources of structural stigma. Recently,Yang et al. [26] reported high levels of structural stigma comingfrom health professionals, predominantly in rural settings. An impor-tant finding of their study was the better attitude of urban healthprofessionals in China towards PWE. They explain that this differencecan be explained by the highly sophisticated health care facilities ofBeijing and their innovative promotion of support for PWE that includesa psychosocial approach. This contrast of views of epilepsy and stigma-tizing attitudes towards PWE held by highly-qualified health profes-sionals of two developed urban contexts can be explained by the lackof programs in Mexico that overtly approach psychosocial issues ofepilepsy.

The health professionals stated that PWE were primarily impact-ed by the physical aspects of epilepsy, which is in stark contrast withthe perspectives of PWE themselves, who emphasized the social andemotional impact on their lives (Table 3). This discrepancy is ex-plained by the distinctions between disease and illness. This distinc-tion holds that disease in the medical paradigm is a malfunctioningof biological and psychophysiological processes in the individual. Inour study this was shown in the health professionals' concept ofepilepsy, 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 governingperception, labeling, explanation, and valuation of the discomfortingexperience, processes embedded in a complex family, and socialand cultural nexus” [8]. Eisenberg [27] asserts that while healthprofessionals diagnose diseases, individuals suffer illness. The un-derlying difference of this concept is a specialized conceptualizationof the pathologies of the body held by professionals (disease) in con-trast to the subjective experience of suffering (illness) that individ-uals have of those pathologies. In our participants' illnessnarratives, we could bear witness to the profound emotional conse-quences and social suffering that emerge from the stigma associatedwith epilepsy. Regrettably, most health professionals seemed un-aware of this phenomenon.

As we could verify in this study, the stigmatization process sufferedby PWE is not limited to being labeled (being pointed out) or discrimi-nated (to receive needed medical treatment). In practical terms, PWEare excluded from society. People with epilepsy have very scarce socialresources to contendwith the social segregationwhich they experience.Health services are localworldswhere they go tomeetwith epilepsy ex-perts, the “experts of what they suffer from”. They constantly approachhealth services holding expectations of receiving remedies to alleviatetheir suffering. In these settings, they receive complex scientific andtechnological interventions for seizure control, while family and socialdomains affected by epilepsy are not addressed.

5. Conclusion

Nowadays, technological and scientific progress understandingepilepsy and the innovative treatments for seizure control arebased on the biological understanding of epilepsy. However, it hasto be recognized that epilepsy suffering is also conditioned by culturaland social forces that need to be approached. Health services, to be re-sponsive to illness experiences, should attend to the complex health–ill-ness care process based on a broad comprehension that underscores allbiological, psychological, and social domains of illnesses. In Mexico, in-tegrated interventions that break through epilepsy stigma are needed.

6. Limitations

Themost important limitations of our studywere the short selectionperiod and the relatively small number of study participants which lim-ited the statistical analysis of the data. Consequently, the results of thisstudy cannot be easily extrapolated to the Mexican population with ep-ilepsy. 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 require-ment of an accompanying relative who could provide reliable informa-tion about the patient's experience of stigma and discrimination.Although this sample does not represent the general problem of epilep-sy in Mexico, the purpose of this qualitative study was to understandthe subjective experience of epilepsy (as outlined by discourse duringthe interview) and the general manifestations of internalized, interper-sonal, and structural stigma. This is necessary in order to make institu-tions more aware of their involvement in this problem, to developtestable hypotheses, and to design and test effective psychosocialinterventions.

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