Factors associated with perceived stigma among patients with epilepsy in Turkey

Epilepsy & Behavior 60 (2016) 142–148

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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh

Factors associated with perceived stigma among patients with epilepsy in Turkey☆ Kubra Yeni a, Zeliha Tulek a,⁎, Nerses Bebek b a b

Istanbul University Florence Nightingale Faculty of Nursing, Istanbul, Turkey Istanbul University Istanbul Faculty of Medicine Department of Neurology, Istanbul, Turkey

a r t i c l e

i n f o

Article history: Received 10 February 2016 Revised 25 March 2016 Accepted 18 April 2016 Available online xxxx Keywords: Epilepsy Stigma Self-efficacy Social support Knowledge Attitude

a b s t r a c t Purpose: Epilepsy is one of the most stigmatizing medical conditions. The purpose of this study was to examine the perception of stigma and factors associated with stigma. Material and methods: This descriptive cross-sectional study was carried out among patients attending an epilepsy outpatient clinic of a university hospital between February and October 2014. One hundred ninety-four patients who were over 18 years of age, who were able to communicate, and who had a diagnosis of definite epilepsy constituted the study sample. Patients seizure-free for two years were excluded from the group. Three-item Jacoby's Stigma Scale was used to determine level of stigma, and Social Support Scale, Generalized Self-efficacy Scale, Epilepsy Knowledge Scale, and Epilepsy Attitude Scale were used to examine factors associated with stigma. Results: In total, 66 (34%) out of 194 subjects reported feeling stigmatized, with almost half of them (n = 31) feeling highly stigmatized. Education, income, age at onset, seizure frequency in previous year, social support, and knowledge and attitudes towards epilepsy were significant factors determining scores on the stigma scale. It was also determined that stigma was associated with seeking help from mystics, disclosure of the diagnosis, and self-efficacy. Conclusion: This study confirms the findings of previous studies that have identified the importance of both clinical and nonclinical factors in understanding the stigma of epilepsy. Findings support the need for social support, knowledge, and awareness to decrease the stigma associated with epilepsy. © 2016 Elsevier Inc. All rights reserved.

1. Introduction Epilepsy, which is one of the most common neurological diseases, affects approximately 50 million people in the world, and approximately 80% of these patients live in developing countries. Although seizures in approximately 70% of people with epilepsy are controlled with regular medical treatment, patients with epilepsy still have to fight against the “stigma” that is brought about by prejudice and discrimination [1]. The uncertainty of when the seizure will come, the uncontrollability of seizures, and the nonesthetic aspect of epileptic seizures render patients more susceptible to stigma [2,3]. Scrambler [4] defined the fear of exclusion of individuals with epilepsy without actual exposure to any discrimination as “perceived stigma” and the real discrimination in a formal or informal way as “imposed stigma”. The perceived stigma, which leads to increased burden of epilepsy, is related to personal variables such as

☆ This study was presented as a poster at the 31st International Epilepsy Congress, 5–9 September 2015, Istanbul. ⁎ Corresponding author at: Istanbul Universitesi Florence Nightingale Hemsirelik Fakultesi, Abidei Hurriyet Cd. 34387 Sisli, Istanbul, Turkey. Tel.: +90 532 776 2993. E-mail address: [email protected] (Z. Tulek).

http://dx.doi.org/10.1016/j.yebeh.2016.04.036 1525-5050/© 2016 Elsevier Inc. All rights reserved.

age, educational level, and income level, as well as various clinical factors such as seizure type and frequency [3,5–10]. Two of the important factors that relate to the stigmatization of individuals with epilepsy are misbeliefs and the negative attitudes of the society. These beliefs and attitudes vary from society to society and from culture to culture; furthermore, the common view in underdeveloped or developing countries defining epilepsy as a mental illness, supernaturally originated, or a penalty of sins, leads to increased perceived stigma. Increased stigma causes social isolation and also impairs the individual's self-management of epilepsy [11,12]. Although stigma is a considerable problem in underdeveloped or developing countries, it still remains a problem even in developed countries. It has been reported that the stigma rate in European countries ranges between 31 and 69%, and about 50% of patients with epilepsy are reported to feel stigma [6,13]. From this point of view, insufficient information, false beliefs, negative attitudes and behaviors, and stigma cannot be avoided, even in developed countries. For example, considering Nicholaos et al.'s study [14], 19% of the public think that epilepsy is a psychological disorder, 5.2% think that it originates from a supernatural power, nearly half (45.4%) of them refuse to marry a patient with epilepsy, and 13% refuse to work with patients with epilepsy. In a populationbased study carried out by Paschal et al. [15] in the United States, 37% of

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the sample included in the study thought that epilepsy was a mental disease, 20% thought that it was a contagious disease, and 13% reported that it arose as a penalty for sin. Furthermore, in a study conducted in Canada, it was reported that during seizures, persons with epilepsy were considered to be violent and to be capable of harming others [16]. Although not very different from Europe, in a study conducted with teachers in Turkey, 30% reported that they did not wish to have a child with epilepsy in their classrooms [17]. In a different study [18], 40% of the teachers reported that they did not wish to get married with an individual with epilepsy, 73% did not wish to allow their children to marry an individual with epilepsy, and 13% reported that they were reluctant to hire individuals with epilepsy for work. Aydemir [19] evaluated the attitude of the public towards epilepsy and reported that 27% refused to marry an individual with epilepsy. Such negative attitudes and behaviors towards epilepsy cause an increase in stigmatization, lead to psychosocial problems (impacting marriage, work, education, etc.), and impair the quality of life of the patients [20,21]. Besides the public's knowledge and attitude regarding epilepsy, the knowledge and attitudes of patients with epilepsy about their own disease [22] and their social support and self-efficacy are factors related to perceived stigma [2,21]. The aims of this study were to identify the prevalence of stigma and to determine its association in patients with epilepsy. Identification of these factors may contribute to the decrease or elimination of stigma [2].

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makes the total score of the participants, and a high score obtained from the scale indicates greater stigma. 2.2.2. Multidimensional Scale of Perceived Social Support (MSPSS) The Multidimensional Scale of Perceived Social Support (MSPSS), developed by Zimmet et al. [25] and adapted in Turkish by Eker and Arkar [26,27], was used to assess the social support perceived by the patients. The subscales of this 12-item scale include the support that is received from family, friends, and a special person. The lowest score that can be obtained from the whole scale is 12, and the highest possible score is 84. A high score indicates a high level of perceived social support. 2.2.3. General Self-efficacy Scale This scale was developed by Jerusalem and Schawazzer [28] to evaluate a general sense of perceived self-efficacy with the aim in mind to predict coping with daily difficulties, as well as adaptation after experiencing all kinds of stressful life events. The form was adapted for the Turkish society by Yesilbalkan et al. [29]. There are ten statements in the scale such as, “I can always manage to solve difficult problems if I try hard enough”, and “If someone opposes me, I can find the means and ways to get what I want”. Each item is scored from 1 to 4. The lowest score obtained from the scale is 10, and the highest score is 40. The self-efficacy increases as the scale scores increase.

2. Material and methods 2.1. Data collection This descriptive, cross-sectional research was carried out at the Epilepsy Outpatient Clinic of a university hospital, which is an important tertiary hospital in Istanbul and serves nearly 12,000 patients with epilepsy. The data were collected between February and September 2014 by self-administration of the questionnaires by the patients when they visited the clinic for routine follow-up. Patients with a well-documented diagnosis of epilepsy with clinical and electrophysiological findings, who were over 18 years of age, who had had at least one seizure in the previous two years, who were using antiepileptic drugs, and who were willing to participate in the study were included in the study. Patients who did not have active epilepsy (i.e., seizure-free or without the need for treatment) were not included in the study. Patients with a comorbid disease that may affect the quality of life significantly (cognitive dysfunction, major depression, etc.) and those unable to speak and understand the Turkish language were excluded from the study. We excluded patients if they had a seizures on the day of study inclusion. We included all consecutive patients without considering if they had an epilepsy surgery. A total of 194 consecutive patients meeting the inclusion criteria comprised the sample of the study. Prior to the data collection, ethical approval was obtained from the Clinical Research Ethics Committee of the Hospital. In addition, a detailed description of the work was given to the patients participating in the study, and their written consent was obtained. 2.2. Data collection tools 2.2.1. Stigma Scale To determine the perceived stigma in patients with epilepsy, we used the stigma scale that had originally been developed for patients with stroke [23] and that had then been revised by Jacoby [24] and adapted for patients with epilepsy, comprising three questions. In this scale, the patients with epilepsy are asked whether, due to their epilepsy, other people (1) were comfortable or not when they were with them, (2) acted as if they were more unworthy or not, and (3) prefer to stay away from them or not. The participants are asked to answer each question with “yes” if they agree and with “no” if they do not agree. The total number of questions that they answer with “yes”

2.2.4. Epilepsy Knowledge Questionnaire Epilepsy Knowledge Questionnaire is a scale developed by Aydemir [30], assessing medical knowledge of epilepsy (e.g., causes and treatment of epilepsy and seizure triggers), social aspects (e.g., can lead normal lives and can attend public schools), and first aid interventions during seizures (e.g., presenting an onion to the patient). The answers that are given to the scale items are “correct”, “incorrect”, and “no idea”. One point is obtained when the answer is correct. The scores can vary between 0 and 16. A high score indicates a good knowledge of epilepsy. The Kuder–Richardson 20 internal consistency coefficient of the scale was found to be 0.72. 2.2.5. Epilepsy Attitude Scale The Epilepsy Attitude Scale was developed by Aydemir [30] to determine the positive or negative attitudes about epilepsy and towards individuals with epilepsy. The items are related to cognitive beliefs about PWE (including limitations, characteristics of PWE, and feelings related to concealing epilepsy), affective reactions to epilepsy (e.g., fear, shame, discomfort), and feelings about being in social contact with PWE (e.g., discomfort working with someone who has epilepsy). Along a 5-point Likert-type scale, the responders are asked to mark whether they agree or disagree with the statements. The score ranges from 14 to 70, and higher scores represent a more positive attitude towards epilepsy. 2.3. Data analysis The data analysis of the study was carried out using the SPSS 21.0 software (IBM, NY). The Kolmogorov–Smirnov test was used to assess normality distribution to determine the type of the tests that should be used in the comparison. Since our data did not show a normal distribution, nonparametric tests were used. The sociodemographics and the disease-related characteristics were presented by descriptive statistics (mean, standard deviation, range, number, and percentage). The stigma scores were categorized (no stigma, mild–moderate–severe stigma) and presented as percentages. We used the Mann–Whitney U test to compare the stigma scores through dichotomous factors, and the Kruskal–Wallis test when a factor had more than two categories. The Spearman correlation coefficients were used to determine the association between perceived stigma and the continuous variables, such as social support, knowledge of epilepsy, attitude towards epilepsy, and

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general self-efficacy. All tests were performed at the two-sided significance level of 0.05.

treatment (mystical practices, etc.), and half (50.5%) of the patients' relatives/families were found to be overly protective and caring.

3. Results

3.2. Perceived stigma

3.1. Patient characteristics

The study showed that 16% had experienced severe stigmatization, while 66% of the sample perceived no stigma. The average score of the stigma was determined as 0.73 ± 1.14 (range: 0–3) (Fig. 1).

The sociodemographic and disease-related characteristics of the patients are presented in Table 1. The average age of the 194 patients participating in the study was 34.1 ± 11.5 years, and 51% of them were found had graduated from at least high school. The majority of the patients (93.3%) had an income status of mid-level or higher. The age at onset of the disease was 17.5 (range: 0–62 years), while the average duration of the disease was 16.9 (0.3–49) years. Again, the majority of the patients (74.2%) had generalized seizures, and 38% had more than one seizure per month. More than half (53%) received polytherapy with AEDs. They were using levetiracetam (n = 82, 42.3%), carbamazepine (n = 79, 40.7%), valproate (n = 46, 23.7%), lamotrigine (n = 40, 20.6%), and other AEDs as monotherapy or combination. Almost half of the patients were taking monotherapy. As monotherapy they were using carbamazepine (n = 21, 10.8%), levetiracetam (n = 19, 9.7%), valproate (n = 18, 9.2%), lamotrigine (n = 8, 4.1%), and other AEDs (n = 23, 11.8%). Nearly half (42.3%) of the patients had used methods other than medical

Table 1 Characteristics related to the sociodemographics and the disease process. Characteristics

n

%

Age (mean, SD, range) Gender Male Female Education Primary school High school University Employment Employed Housewife Student Retired Unemployed Income Low Moderate High Having health insurance Marital status Single/divorced Married Living alone Age at disease onset (mean, range) Duration of epilepsy (year) (mean, range) Type of seizure Focal Generalized Seizure frequency per month previous year No seizure Less than one More than one Having a disease other than epilepsy Use of epilepsy medication Monotherapy Polytherapy Use of medication regularly Attendance to regular follow-ups Seeking nonmedical help Change in family attitude since diagnosis No change Be overprotective Be more supportive Be more irrelevant

34.1 ± 11.5

18–80

92 102

47.4 52.6

95 50 49

49.0 25.8 25.2

76 58 16 14 30

39.2 29.9 8.2 7.2 15.5

13 143 38 176

6.7 74.1 19.2 90.7

98 96 6 17.5 16.9

49.6 49.4 3.1 0–62 0.3–49

50 144

25.8 74.2

15 105 74 41

7.7 54.1 38.1 21.1

89 103 174 180 82

45.9 53.1 89.7 92.8 42.3

18 98 77 1

9.3 50.5 39.7 0.5

3.3. Stigma and sociodemographic and epilepsy characteristics When the stigma scores were evaluated according to the sociodemographic characteristics of the patients, the stigma score was found to be higher in patients with low educational levels and with lower income levels. However, no significant difference between the stigma scores was determined with regard to age, gender, and marital status (p N 0.05) (Table 2). A reverse significant relationship was determined between the stigma score and the age at onset of the disease (p = 0.011). Patients with a diagnosis of epilepsy for more than ten years were found to perceive more stigma compared with patients with a diagnosis period of less than ten years (p = 0.034). When the stigma scores were evaluated by the frequency of seizures in the previous year, patients with no seizures and patients having less than one seizure per month were found to have significantly lower stigma scores compared with patients with multiple seizures per month (p = 0.010). Patients who had accidents due to seizures were found to perceive more stigma than those who did not experience any accidents (p = 0.004). Only 2.6% of the patients were found to have harmed others because of having seizures, and although no significant relationship was found, these patients were found to have higher stigma scores (p = 0.087). While the stigma scores were found to be higher in patients using polytherapy than in patients using monotherapy, in patients using their medicines irregularly compared with those taking their medicines regularly, and in patients who experienced the adverse effects of the AEDs compared with those who did not show adverse effects, the differences between the groups were found to be statistically insignificant. The stigma scores of patients with a negative change in feelings and thoughts for epilepsy since they received the diagnosis were found to be higher than those of patients with positive emotions and thoughts (p = 0.001). Also, the stigma scores of patients who had undergone nonmedical treatments (mystical practices) were found to be higher (p = 0.001) (Table 3). 3.4. Stigma and psychosocial factors The majority of the sample reported that they felt the need to hide their disease from others, and the stigma scores of these patients were found to be higher (p = 0.010) (Table 4). The private lives of 18.6% of the patients were found to be problematic due to the epilepsy, and the stigma score was found to be high in these patients.

66%

No

10.3%

7.7%

Mild

Moderate

16%

Severe

Fig. 1. Distribution of the stigma scores of the sample (n = 194).

K. Yeni et al. / Epilepsy & Behavior 60 (2016) 142–148 Table 2 Mean stigma scores according to the sociodemographics.

Age (18–80) (r, p) Gender Female (n = 102) Male (n = 92) Education Primary school (n = 95) High school (n = 50) University (n = 49) Income High (n = 37) Moderate (n = 143) Low (n = 13) Marital status Single/divorced (n = 98) Married (n = 96)

Table 4 Mean stigma scores according to the psychosocial factors.

Mean ± SD

Z/χ2, p

r = −0.034

p = 0.643

0.63 ± 1.06 0.84 ± 1.22

Z = −1.25 p = 0.211

1.03 ± 1.32 0.52 ± 0.93 0.38 ± 0.78

χ = 8.23 p = 0.016

0.48 ± 0.98 0.71 ± 1.11 1.76 ± 1.48

χ2 = 9.735 p = 0.008

0.77 ± 1.13 0.69 ± 1.16

Z = −1.00 p = 0.314

2

Mann–Whitney U test was used to compare stigma scores through dichotomous factors and Kruskal–Wallis test when a factor has more than two categories.

The stigma scores of the patients who had to leave school (n = 11), who were unemployed (n = 18), who could not drive a car (n = 28), and who were exempted from the military service (n = 40) due to epilepsy were found to be higher, but the differences between the groups were statistically insignificant (p N 0.05). No difference was found between the groups when the stigma scores were evaluated according to the family attitudes (Table 4). Table 3 Mean stigma scores according to the disease characteristics.

Age at onset (r, p) Duration of epilepsy First decade (n = 72) More than ten years (n = 122) Type of seizure Focal (n = 50) Generalized (n = 144) Seizure frequency per month in previous year No seizure (n = 15) Less than one (n = 105) More than one (n = 74) Having an aura Yes (n = 89) No (n = 105) Being exposed to an accident due to seizure Yes (n = 61) No (n = 133) Harming someone due to seizure Yes (n = 5) No (n = 189) Having a disease other than epilepsy Yes (n = 41) No (n = 133) Use of epilepsy medication Monotherapy (n = 89) Polytherapy (n = 103) Using medication regularly Yes (n = 174) No (n = 20) Having side effect of medication Yes (n = 64) No (n = 130) Having regular follow-ups Yes (n = 180) No (n = 14) Changes in feelings related to epilepsy Positive (n = 57) Negative (n = 49) Seeking nonmedical help Yes (n = 82) No (n = 112)

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Mean ± SD

Z/χ2, p

r = −0.183

p = 0.011

0.51 ± 0.99 0.86 ± 1.21

Z = 0.108 p = 0.034

0.58 ± 1.05 0.79 ± 1.17

Z = 1.32 p = 0.186

0.26 ± 0.79 0.60 ± 1.06 1.02 ± 1.26

χ2 = 9.26 p = 0.010

0.73 ± 1.10 0.74 ± 1.18

Z = −0.22 p = 0.820

1.13 ± 1.34 0.55 ± 0.99

Z = −2.86 p = 0.004

1.80 ± 1.64 0.70 ± 1.12

Z = −1.71 p = 0.087

0.60 ± 0.97 0.77 ± 1.18

Z = 0.40 p = 0.687

0.58 ± 1.04 0.86 ± 1.21

Z = 1.70 p = 0.088

0.70 ± 1.12 1.05 ± 1.27

Z = 1.19 p = 0.234

0.95 ± 1.29 0.63 ± 1.05

Z = −1.45 p = 0.145

0.73 ± 1.13 0.78 ± 1.31

Z = −0.15 p = 0.874

0.42 ± 0.94 1.22 ± 1.29

Z = 3.60 p = 0.001

1.10 ± 1.28 0.46 ± 0.94

Z = 3.60 p = 0.001

Mann–Whitney U test was used to compare stigma scores through dichotomous factors and Kruskal–Wallis test when a factor has more than two categories.

Concealing the epilepsy diagnosis Yes (n = 158) No (n = 36) Having problems in private life due to epilepsy Yes (n = 36) No (n = 158) Dropping out of school due to epilepsy Yes (n = 11) No (n = 183) Employment Employed (n = 76) Retired, student, hw (n = 100) Unemployed due to epilepsy (n = 18) Driving Yes (n = 17) No, but not due to epilepsy (n = 14) No, due to epilepsy (n = 28) Being exempted from military service (n = 88) Yes (n = 40) No (n = 48) Change in family attitude No (n = 18) Be overprotective (n = 98) Be more supportive (n = 77) Be more irrelevant (n = 1)

Mean ± SD

Z/χ2, p

0.84 ± 1.19 0.27 ± 0.74

Z = −2.59 p = 0.010

1.88 ± 1.32 0.47 ± 0.92

Z = −6.16 p = 0.001

1.36 ± 1.43 0.69 ± 1.12

Z = −1.71 p = 0.087

0.65 ± 1.02 0.68 ± 0.68 1.38 ± 1.46

χ2 = 4.30 p = 0.116

0.47 ± 0.94 0.50 ± 0.94 0.71 ± 1.11

χ2 = 0.78 p = 0.676

0.75 ± 1.17 1.05 ± 1.29

Z = −1.29 p = 0.194

1.00 ± 1.23 0.68 ± 1.08 0.71 ± 1.17 3.00 ± 0.00

χ2 = 4.07 p = 0.254

Mann–Whitney U test was used to compare stigma scores through dichotomous factors and Kruskal–Wallis test when a factor has more than two categories.

3.5. Stigma and social support, knowledge, attitude, and general selfefficacy The stigma scores of the patients were found to correlate with social support as well as knowledge and attitude about the disease (Table 5). The stigma score decreased as the social support, the level of knowledge about epilepsy, the positive attitudes towards epilepsy, and the selfsufficiency of the patients increased.

4. Discussion This study, which aimed to determine the level of stigma perceived by patients with epilepsy and the factors related to stigma perception, revealed that 34% of the patients had experienced stigmatization. This rate is consistent with the stigma rate that Baker et al. [31] determined about 16 years ago in European countries. Furthermore, in studies conducted in recent years, the proportion of patients with epilepsy perceiving stigma has shown no significant change from past to present [6,10, 32]. From this perspective, while there has been important progress in the medical aspects of epilepsy, it cannot be said that significant progress has been made to reduce stigma. There are many studies that have reported factors affecting the stigma perception in patients with epilepsy. One of the most mentioned factors is the educational level of the patient. Many studies have reported that as the level of education increases, the level of stigma decreases Table 5 The relationship between the stigma score and social support, knowledge, attitude, and general self-efficacy. Scales

MSPSS (social support) Epilepsy Knowledge Scale Epilepsy Attitude Scale General Self-efficacy

Stigma score r

p

−0.300 −0.180 −0.152 −0.185

0.001 0.012 0.034 0.010

(Spearman correlation was used to show the association between perceived stigma and continuous variables.)

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[6,33–35]. Our results were comparable with the aforementioned. Education is an important factor in the perception of stigma, as well as being an area in which patients with epilepsy may experience limitations due to the stigma. Psychosocial problems and cognitive dysfunction that may be observed in some patients with epilepsy may lead to withdrawal from schooling [36–40]. In our study, 11 patients were found to leave their education due to their disease. Patients may wish to interrupt their education due to cognitive problems, as well as due to the stigma. For example, in a study that assessed the knowledge and attitudes of primary school teachers about epilepsy in Turkey, 24% considered epilepsy as a mental illness, 30% did not wish to have a child with epilepsy in the class, and 56.7% reported that he/she was incompetent in managing the seizures. Again, many believe that children with epilepsy should receive special education, and they prefer having children with asthma in the class rather than having children with epilepsy [17]. Similar results have been reported in a study from Taiwan [41]. From this perspective, it is not sufficient just to increase the educational level of the patients with epilepsy. It is also necessary to reduce the stigma by increasing the knowledge and awareness of the teachers regarding epilepsy [17,18]. The income level of the patients is another factor determined to be related to the perceived stigma. The stigma scores of the patients were found to be higher in patients with low income levels. In fact, the income levels of patients may be related to finding a job or continuing their work. Patients who often have difficulties in finding a job or who are fired from their job due to epilepsy experience economic problems, and, consequently, their income levels are affected. Being fired not only affects the income level, but also adversely affects the patients psychosocially. Since the working condition of the patients may be related to their income levels, their income levels may be related to their stigma status. In our study, patients who were fired/left work due to their disease (n = 18) and patients with poor income levels (n = 13) had higher stigma scores. Dilorio et al. [2] presented similar results in their study, reporting high stigma scores in patients who were unable to work due to their disease and those who had low income levels. The age at onset, disease duration, and frequency of seizures are factors that were found to be related to stigma in our study. As the age at onset of the disease decreased, the rate of stigma increased. Dilorio et al. [2] reported that perceived stigma was higher in patients with an onset of disease before the age of 50. Therefore, it can be said that young patients are affected to a higher extent by stigma. When the stigma scores were analyzed with respect to disease duration, they were higher in patients who had the disease for more than one decade. No significant relationship has been previously reported between the duration of the disease and the stigma [6]. The frequency of seizures is a factor that has been found to be related to the stigma level in many studies [10,31,35,42,43]. Similar to previous work, in our study, patients with more frequent seizures were found to feel more stigmatized. It may be considered that the relationship between the frequent seizures and stigma is multidirectional. Namely, multiple AEDs are generally used to control frequent seizures in patients, thereby increasing the rate of exposure of patients to the side effects of the drugs. There are studies demonstrating the relationship between the stigma and exposure to side effects of AEDs [6,44]. In our study, despite the absence of a statistical significance, the stigma score of patients who had been exposed to the adverse effects of AEDs was significantly higher than that of those not exposed. Again, the possibility of dismissal of patients who have poor seizure control may likely be higher. In our study, 12 of 18 patients who had been fired from their jobs due to their epilepsy were found to have had more than one seizure per month. This situation is likely to underlie the relationship between frequent seizures and the dismissal. Moreover, the overprotective caring attitudes of families in the Turkish culture (n = 98) further restrict the patients, and cause them to lose their autonomy. When all the aforementioned data are taken into account, good seizure control to reduce

the stigma of patients with epilepsy will likely provide significant benefits. Misconception about epilepsy is a major factor related to stigma; the knowledge and awareness of the community in this regard should be increased [45–47]. In a study of Collins et al. [16], which was carried out with doctors, medical and law students, and the general society, about half (40%) of the community was reported to consider patients with epilepsy as a violent. This misconception leads to a negative perspective against patients with epilepsy and naturally leads to stigmatization. In our study, the rate of patients with epilepsy harming others due to seizures/during seizures was determined as 2.6% (n = 5). This rate refutes the unfounded stance taken against patients with epilepsy, since they are considered to be more aggressive than individuals without epilepsy. In our country, a driver's license is not given to patients with epilepsy legally, while 59 patients stated that they had a driver's license, and of these, 17 were driving actively. In this study, although it was found to be not significant, the stigma level of the patients who could not drive due to their disease was found to be higher. The risks posed by patients with epilepsy in traffic are still controversial, since some other studies also report an increased risk [48,49]; yet, a recent cohort study argues that there is no increased risk compared with the general population [50]. In one study, the rate of fatal accidents caused by alcohol was 30%, while the accident rate caused by patients with epilepsy was found to be only 0.2% [51]. In an article addressing the driving problem of patients with epilepsy, Krumholz stated that the inability to drive may affect the welfare of patients and that the restrictions imposed on the patients did not have a scientific basis [52]. The effects of laws, which see patients with epilepsy as a major risk in traffic, barring them from ever receiving a driving license, on patients should not be ignored. Already facing many obstacles (marriage, work, education, etc.), their inability to obtain a license merely due to their diagnosis, even if the patients have been seizure-free for many years, is restrictive and negatively affects their self-management, thereby increasing their stigma scores [53]. The complete prohibition against driving restricts a major part of the individual's daily life, and in many European countries, when a patients has been seizure-free for two years, the driving ban is lifted. Recently, regulations were amended in our country, and restrictions became similar to European countries. The patient can regain their driving license after being seizure-free for five years and discontinuing AEDs. A majority of the patients (n = 158) chose to hide their disease because of all the aforementioned misconceptions, prejudices, constraints, obstacles, or the fear of facing this condition. Aydemir et al. [54] stated that many of the patients feel the need to hide their disease because they fear the perspective of others and have the fear of discrimination. The rate of hiding the disease increases more in areas with a misconceptions and negative attitudes towards epilepsy, especially in countries with a high stigma rate [5,45,55]. When the relationships between the stigma scores of the patients and the knowledge and attitudes regarding epilepsy, the social support, and self-efficacy were assessed, all these factors were found to be related to stigma. As the knowledge of the patients about epilepsy and the positive attitude of the patients towards epilepsy increase, the stigma scores are observed to decrease. In recent studies, it was reported that the knowledge and attitude of the patients with epilepsy regarding the disease was inversely correlated with the stigma [22,56,57]. Other factors related to stigma are social support [21,58], quality of life [53, 59], and self-efficacy [60,61]. In their study, Lee et al. [62] also reported a positive relationship between the self-efficacy and the knowledge level of the patients. In line with this study, with similar results, educating the patients and the community regarding the disease, enhancing the level of knowledge, and increasing the social support to the patients would be predicted to reduce stigma and to increase self-efficacy and should be studied.

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There are some study limitations that should be considered when our results are interpreted. We did not assessed patients for anxiety and depression. We asked patients whether or not they have a major health problem including psychiatric illness, and, if so, we excluded them. However, when doing this, we based the decision on patients' self-report. Moderate-level anxiety and depression may impact the results. Therefore, impact of mood problems on stigma perception should be considered. Some medications show greater occurrence of depressive symptoms and influence stigma perception. The relation between AEDs and stigma deserves much more attention and we suggest this issue be studied further in future studies. 5. Conclusions This study confirms that clinical factors and nonclinical psychosocial factors should be evaluated to understand stigma in patients with epilepsy. The results suggest that enhancement of social support and increase of knowledge and awareness about epilepsy are necessary to reduce stigma in patients with epilepsy. Source of funding No source of funding was declared. Conflict of interest There are no conflicts of interest to declare. References [1] World Health Organization (WHO). Epilepsy fact sheets. http://www.who.int/ mediacentre/factsheets/fs999/en/; 2015. [Accessed: 07.11.2015]. [2] Dilorio C, Shafer PO, Letz R, Henry T, Schomer DL, Yeager K, et al. The association of stigma with self-management and perceptions of health care among adults with epilepsy. Epilepsy Behav 2003;4(3):259–67. [3] Jacoby A. Stigma, epilepsy, and quality of life. Epilepsy Behav 2002;3(6):10–20. [4] Scrambler G, Hopkins A. Generating a model of epileptic stigma: the role of qualitative analysis. Soc Sci Med 1990;30:1187–94. [5] Atadzhanov M, Haworth A, Chomba EN, Mbewe EK, Birbeck GL. Epilepsy-associated stigma in Zambia: what factors predict greater felt stigma in a highly stigmatized population? Epilepsy Behav 2010;19(3):414–8. [6] Bielen I, Friedrich L, Sruk A, Prvan MP, Hajnšek S, Petelin Ž, et al. Factors associated with perceived stigma of epilepsy in Croatia: a study using the revised Epilepsy Stigma Scale. Seizure 2014;23(2):117–21. [7] Fiest KM, Birbeck GL, Jacoby A, Jette N. Stigma in epilepsy. Curr Neurol Neurosci Rep 2014;14(5). [8] Kumari P, Ram D, Nizamie SH, Goyal N. Stigma and quality of life in individuals with epilepsy: a preliminary report. Epilepsy Behav 2009;15(3):358–61. [9] Leaffer EB, Jacoby A, Benn E, Hauser WA, Shih T, Dayan P, et al. Associates of stigma in an incident epilepsy population from northern Manhattan, New York City. Epilepsy Behav 2011;21(1):60–4. [10] McLaughlin DP, Pachana NA, Mcfarland K. Stigma, seizure frequency and quality of life: the impact of epilepsy in late adulthood. Seizure 2008;17(3):281–7. [11] Birbeck GL, Kalichi E. Epilepsy prevalence in rural Zambia: a door-to-door survey. Trop Med Int Health 2004;9(1):92–5. [12] Tran DS, Odermatt P, Singphuoangphet S, Druet-Cabanac M, Preux PM, Strobel M, et al. Epilepsy in Laos: knowledge, attitudes, and practices in the community. Epilepsy Behav 2007;10(4):565–70. [13] Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol 2005;4(3):171–8. [14] Nicholaos D, Joseph K, Meropi T, Charilaos K. A survey of public awareness, understanding, and attitudes toward epilepsy in Greece. Epilepsia 2006;47(12):2154–64. [15] Paschal AM, Hawley SR, Romain TS, Liow K, Molgaard CA, Sly J, et al. Epilepsy patients' perceptions about stigma, education, and awareness: preliminary responses based on a community participatory approach. Epilepsy Behav 2007;11(3):329–37. [16] Collins TK, Camfield PR, Camfield CS, Lee K. People with epilepsy are often perceived as violent. Epilepsy Behav 2007;10(1):69–76. [17] Aydin K, Yildiz H. Teachers' perceptions in central Turkey concerning epilepsy and asthma and the short-term effect of a brief education on the perception of epilepsy. Epilepsy Behav 2007;10(2):286–90. [18] Bekiroglu N, Ozkan R, Gurses C, Arpaci B, Dervent A. A study on awareness and attitude of teachers on epilepsy in Istanbul. Seizure 2004;13(7):517–22. [19] Aydemir N. Familiarity with, knowledge of, and attitudes toward epilepsy in Turkey. Epilepsy Behav 2011;20(2):286–90. [20] Morrell MJ. Stigma and epilepsy. Epilepsy Behav 2002;3(6):21–5.

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