|Year : 2018 | Volume
| Issue : 3 | Page : 190-195
Perceptions on epilepsy stigma among attendants of patients other than epilepsy
M Nagarathnam1, S A. A. Latheef2
1 Department of Medical and Surgical Nursing, College of Nursing, Sri Venkateswara Institute of Medical Sciences, Tirupati, Andhra Pradesh, India
2 School of Life Sciences, University of Hyderabad, Hyderabad, Telangana, India
|Date of Web Publication||17-Sep-2018|
Dr. S A. A. Latheef
School of Life Sciences, University of Hyderabad, Hyderabad, Hyderabad, Telangana
Source of Support: None, Conflict of Interest: None
Background: Stigma is an important contributor for epilepsy. In India, most studies on epilepsy stigma were carried out using knowledge, attitude, and practice questionnaires. Of the four studies which used stigma scale, only three studies investigated up to 50 healthy subjects and were of eastern and western-central India; however, representation is lacking from south India. Perceptions on stigma vary by region and cultural group.
Aim: To study the perceptions among attendants of patients other epilepsy.
Materials and Methods: In a prospective observational study, 170 healthy attendants of patients other than epilepsy belonging to south India were recruited and their perceptions on epilepsy stigma were documented.
Results: Mean age of the subjects was 34.39 ± 11.49 years. The mean score of epilepsy stigma was 20.06 ± 13.66. Majority of the subjects had mild epilepsy stigma perception (83.6%). No significant difference in epilepsy stigma score was observed with respect to gender, age groups, religion, and marital status. Higher epilepsy stigma score was observed in rural, less educated, and low income groups. In regression analysis, family income (standardized beta = −0.201, P < 0.01) and occupation (standardized beta = −0.174, P < 0.05) were found to be the significant predictors of epilepsy stigma.
Conclusions: The results suggest that, to reduce the stigma of epilepsy among the public, socioeconomic and educationally disadvantaged groups should be given priority for destigmatization campaigns.
Keywords: Education, epilepsy stigma, family income, healthy volunteers, residence
|How to cite this article:|
Nagarathnam M, Latheef S A. Perceptions on epilepsy stigma among attendants of patients other than epilepsy. J NTR Univ Health Sci 2018;7:190-5
|How to cite this URL:|
Nagarathnam M, Latheef S A. Perceptions on epilepsy stigma among attendants of patients other than epilepsy. J NTR Univ Health Sci [serial online] 2018 [cited 2019 Nov 22];7:190-5. Available from: http://www.jdrntruhs.org/text.asp?2018/7/3/190/241276
| Introduction|| |
Epilepsy is a significant health problem worldwide with 70 million sufferers with developing countries (90%) carrying the majority of the burden. The number of people estimated to be affected by epilepsy in India were 12 million. In addition to unpredictable seizures, people with epilepsy (PWE) were found to have low education levels, under and unemployment, low marriage and high divorce rate, increased rate of psychiatric disorders, financial dependency, high risk of injury and premature death, and face discrimination at work place and negative attitudes of people. All these conditions lead to stigmatization and reduce the quality of life.,,,
Despite major advancements in diagnosis and treatment of epilepsy, much remains to be done in dispelling stigma. Epilepsy is one of the stigmatizing conditions along with acquired immunodeficiency syndrome (AIDS), leprosy, and mental disorders. In case of other disorders, stigma was reduced due to increased knowledge and modern treatments in developed countries. but with respect to epilepsy, developing countries showed high stigma. Eighteen percent of PWEs in developed countries and up to 60% of PWEs in developing countries reported stigma. In an Indian study, 61% of PWE reported stigmatization. Stigma is a label assigned to individual or feeling of being designated as different from the normal population due to a life condition, invoking feelings of dread or fear among others. Lack of information, interpretation, and people's behavior in several situations contributes to stigma. Factors ranging from social circumstances and seizure control to psychological traits of PWE were found to be associated with feelings of stigma.
Stigma is a major contributor to the burden associated with epilepsy  and noncompliance of drug therapy. Stigma is experienced in both public and private spheres of PWE. It operates at the person, family, and institutional (indirect and impersonal expressions of stigma) level. Management of stigma requires tackling at each of these levels. Investigation of causes and sources of stigma may be helpful in reducing the stigma towards PWE. It is important in a study of stigma to focus not only on the person who is stigmatized but also the perceivers. Perceivers' erroneous beliefs and stereotypes lead them to have negative expectations of people affected by epilepsy. Most studies in India were carried out on attitudes of school teachers, students, secondary school children, family members, rural, and semiurban people  on epilepsy. Most studies in India on stigma were carried out using knowledge, attitude, and practice questionnaires, and only four studies used stigma scales.,,, Only three studies made assessment of stigma involving 15–50 healthy volunteers ,, of eastern and western-central India. To our knowledge, no study is reported from south India. Perception of stigma was shown to vary according to region and cultural group., Conducting large scale population studies are time and cost-intensive. Healthy volunteers can serve as a proxy public group to elicit perceptions on epilepsy stigma. As caregivers of epilepsy have fixed perceptions, we have recruited attendants of patients other than epilepsy. We believe that it is the attendants of patients other than epilepsy who form the largest group after general public who can have access to observe epilepsy patients in tertiary care centres and formulate perceptions while attending their patients and can also be the possible resource persons in reducing the epilepsy stigma in the general public.
| Materials and Methods|| |
Sample size and technique
Assuming reliability of 0.7 as acceptable and interobserver reliability to be 0.8, α = 0.05, β = 0.2, the calculated sample size was 117. One hundred and seventy subjects who were attending patients other than epilepsy in the outpatient departments of Sri Venkateswara Institute of Medical Sciences, Tirupati, Andhra Pradesh, and who fulfilled the inclusion criteria of the study were recruited using a purposive sampling technique. These subjects were free from neurological and psychiatric diseases. Approval of the institutional ethics committee was obtained for the study.
Subjects aged 18–160 years who have no history of seizure/epilepsy, migraine/febrile convulsions, neurotrauma/infections, chronic physical and mental illness, and organic brain syndromes.
Subjects below or above 18–16 years. Data on age, gender, religion, marital status, residence, education, occupation, income, and family history of epilepsy were enquired from the subjects using a questionnaire and were documented.
Stigma scale: Stigma scale developed and validated by Fernandes et al. was used in the study. Stigma scale was used for assessment of epilepsy stigma of the subjects. The original scale was translated to the Telugu and then back translated into English by bilingual experts. The Telugu version of Stigma scale was administered to the subjects and their responses were documented. Stigma scale has five questions with 24 items (related to the opinion about the feeling on PWE ability to control the epilepsy, feeling when seeing epileptic seizure, opinion about the difficulties faced by the PWE, opinion on the feeling of epilepsy and on the prejudice in epilepsy related to relationships, marriage, work, school, and family). Each subject's response was documented on four-point rating such as not at all, a little, a lot, and totally with scoring from 1 to 4. Item scores were summed up and linearly transformed on to a 0–100 scale. Zero indicates no stigma whereas 100 refers to the highest level of stigma. Stigma scale was validated in Hindi speaking north Indian populations.,, PWE were classified into various groups based on stigma score such as no stigma (0), mild stigma (1–33), moderate stigma (34–65), high stigma (66–99) and maximum stigma (100). Obtained Cronbach's alpha and intraclass correlation coefficient for the stigma scale in the present study were 0.892 and 0.954, respectively.
Continuous variables are presented in mean and standard deviation, whereas categorical variables are expressed in proportions. Shapiro–Wilk test was used to check normal distribution of continuous variables. Due to nonrandomness in a large number of variables, Kruskal–Wallis H-test was employed to compare the medians of the groups. Significance in the means of groups was evaluated using post-hoc tests. Association between variables were investigated using Spearmen correlation analysis. To evaluate potential independent variables for dependent variable (stigma), stepwise regression analysis was performed. Significant variables were entered into the final equation to assess the relationship between dependent and independent variables. Internal consistency was evaluated by Cronbach's alpha and reproducibility by interclass correlation coefficient. All computations were carried using the Statistical Package for the Social Sciences version 20.0 INC Chicago, Illinois, USA.
| Results|| |
Age of the subjects ranged 20–60 years, and the mean age was 34.39 years. The majority of the subjects were female (56%), following the Hindu religion (79%), married (72%), staying in urban areas (42%), graduate (28%), unemployed (31%), and had a monthly income of 10,000–25,000 INR (78%) [Table 1].
|Table: 1: Mean and S.D of continuous variables and frequency distribution of demographic and socio-economic variables among subjects (N=170)|
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Mean stigma score of the subjects was 20. Majority of the subjects had mild (83.6%) followed by moderate perception on epilepsy stigma (15.3%). Only two subjects (1%) reported high epilepsy stigma [Table 2]. Majority of the subjects opined that PWE feel worried (15.3%) and face prejudice (13.5%) in daily lives [Table 3].
|Table 2: Distribution of subjects based on epilepsy stigma severity and mean epilepsy stigma score (N=170)|
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Mean epilepsy stigma score was not significantly different with respect to gender, age, religion, and marital status among subjects. Higher mean epilepsy stigma score was observed in rural followed by semiurban and urban subjects (P < 0.01). In post-hoc analysis, significant difference was observed in epilepsy stigma score between rural and urban (P < 0.01) subjects. Epilepsy stigma score was higher in primary school educated followed by high school, illiterates, intermediate, and graduation attained subjects (P < 0.01). In post-hoc analysis, significant difference was observed in epilepsy stigma score between illiterates and postgraduates (P < 0.05); primary school educated vs graduates and postgraduates (P < 0.01); high school educated vs graduates and postgraduates (P < 0.01); and intermediate vs postgraduates (P < 0.05).
Higher mean epilepsy stigma score was observed in daily wage labors and farmers followed by unemployed, self/private, and government employees. In post-hoc analysis, significant difference in mean epilepsy stigma score was observed between daily wage labor vs self, private, and government employee; (P < 0.05); farmer vs self, private and government employee (P < 0.05); self-employed vs daily wage labor and farmer; private employee vs farmer and daily wage labor; government employee vs. daily wage labor (P < 0.05) and farmer (P < 0.01). Epilepsy stigma score was similar in low income and high income group. This may be due to the presence of only two subjects in the high income group. Statistically significant difference was observed among different income groups. In post-hoc analysis, significant difference in epilepsy stigma score was observed between low (1,000–25,000 INR per month) and middle income subjects (25001– 50000 INR per month) (P < 0.01) [Table 4].
|Table 4: Mean and standard deviation of epilepsy stigma score among subjects|
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Multiple regression analysis showed that family income (standardized beta = −0.201, P < 0.01) and occupation (standardized beta = −0.174, P < 0.05) were significant predictors of epilepsy stigma [Table 5].
| Discussion|| |
Fernandes et al. reported a mean epilepsy stigma score of 49 in community controls in one study and a median score of 49.7 in an urban population of Brazil in another study. Using epilepsy stigma scale of Fernandes et al., Kumari et al. observed epilepsy stigma score of 78.9 in 15 healthy controls and Prakesh et al. found epilepsy stigma score of 46.8 in 30 healthy controls. Sawant and Kinra  did not report mean epilepsy stigma score. In the present study, we found mean and median epilepsy stigma score of 20 and 18, respectively, in 170 subjects. Difference in epilepsy stigma score of the present study with earlier studies may be due to cultural reasons and higher sample size than two earlier studies.,, Fernandes et al., in a study involving community control and urban subjects, reported their perception of stigma of epilepsy that main difficulties faced by epilepsy people were work, relationship, and emotional problems. Majority of the subjects in the present study had mild stigma (86.3%). This may be due to increased awareness of epilepsy stigma and acceptability as medical illness. The majority of subjects in the present study perceived that PWE feel worried and face prejudice in daily lives.
Fernandes et al. observed differences in epilepsy stigma score with reference to social class and school level only in one city but not in other three cities of Brazil. Fernandes et al. in another study found higher epilepsy stigma score in women than men, those following Catholic and Evangelical than Spiritism, lower than high socioeconomic classes, and less than high educated. In our study, no significant difference in epilepsy stigma score was observed between genders and religious groups. Epilepsy stigma score was significantly lower in highly educated, secured employment, and high income groups. With reference to variables such as higher education, secured employment (government job) and high income, our observations are in agreement with Fernandes et al. Decreased epilepsy stigma score was observed in high educated and high income group in our study suggest that knowledge is the key to reduce stigma. People with higher education and income have more opportunities to obtain more information, and it is also possible that people offered politically correct answers. Higher epilepsy stigma score in rural subjects may be due to lack of information, and there is a need to spread awareness to reduce epilepsy stigma in rural areas. Compared to subjects having secure jobs such as government jobs than unemployed, daily wage laborers and farmers showed higher epilepsy stigma score which may also be due to lack of information because of less education. These people need to be educated to reduce epilepsy stigma. These people work in the unorganized sector and may have less opportunity to avail information on epilepsy. On regression analysis, we found that family income (standardized beta = −0.201, P < 0.01) and occupation (standardized beta = −0.174, P < 0.05) were significant predictors of epilepsy stigma. These factors accounted for 69% of variation in dependent variable, as shown by adjusted R2 (0.69).
Negative attitudes prevailing in certain segments of the society may create difficulties in interpersonal relationships and perpetuate stigma in community. Work and social relationships were the most affected areas related to epilepsy stigma in an earlier study. In our study, we found that areas most affected by epilepsy stigma were worry and prejudice (13.5%).
| Conclusion|| |
Results of this study suggest that magnitude of epilepsy stigma is different in different segments of society demonstrating the fact that socioeconomic factors such as education, occupation, and income are important predictors of epilepsy stigma. Mass media, nongovernmental organizations, and educational institutions should focus on the people belonging to these segments to fight prejudice and reduce epilepsy stigma for improving the social acceptance of PWE.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Amudhan S, Gururaj G, Satishchandra P. Epilepsy in India I: Epidemiology and public health. Ann Indian Acad Neurol 2015a; 18:263-77.
Rajaram P, Thomas PT. Epilepsy: Attitude and Awareness among students of professional social work. Artha J Soc Sci 2013;12:61-72.
Obeid T. An aspect of epilepsy not to be ignored. Saudi Med J 2008;29:489-97
Kralj-Hans I, Goldstein LH, Noble AJ, Landau S, Magill N, McCrone P, et al
. Self-Management education for adults with poorly controlled epilepsy (SMILE (UK)): A randomised controlled trial protocol. BMC Neurol 2014;14:69
Whatley AD, DiIorio CK, Yeager K. examining the relationships of depressive symptoms, stigma, social support and regimen-specific support on quality of life in adult patients with epilepsy. Health Educ Res 2010;25:575-84.
Ghanean H, Jacobsson L, Nojomy M. Self-perception of stigma in persons with epilepsy in Tehran, Iran. Epilepsy Behav 2013;28:163-7.
Joseph N, Ray A, Reshma BK, Bhat S, Herady M, Kumar A, et al
. Assessment of quality of life, stigma associated and self-management practices among patients suffering from epileptic seizures: A cross sectional study. J Neurosci Behav Health 2011;3:91-8.
Fernandes PT, Noronha ALA, Sander JW, Li LM. Stigma scale of epilepsy. Arq Neuropsiquiatr 2008;66:471-6.
Bielen I, Friedrich L, Sruk A, Prvan MPP, Hajnsˇek S, Zˇ Petelin Z, et al
. Factors associated with perceived stigma of epilepsy in Croatia: A study using the revised Epilepsy Stigma Scale. Seizure 2014;23:117-21.
de Boer HM. Epilepsy stigma: Moving from a global problem to global solutions. Seizure 2010;19:630-6.
Yang R, Wang W, Snape D, Chen G, Zhang L, Wu J, et al
. Stigma of People with Epilepsy in China: Views of health professionals, teachers, employers and community leaders. Epilepsy Behav 2011;21:261-6.
Jacoby A, Gorry J, Gamble C, Baker GA. Public knowledge, private grief: A study on public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia 2004;45:1405-15.
Thacker AK, Verma AM, RamJi, Thacker P, Mishra P. Knowledge awareness and attitude about epilepsy among schoolteachers in India. Seizure 2008;17:684-90.
Joshi HS, Mahamood SE, Bamel A, Agarwal AK, Shaifali I. Perception of epilepsy among the urban secondary school children of Bareilly district. Ann Indian Acad Neurol 2012;5:125-7.
Dung AAD, Singh HK, Kumari S, Gupta M, Raval M, Rajender G. Knowledge, attitude and perception of caregivers of children with epilepsy. Delhi Psychiatry J 2009;2:274-5.
Krishnaiah B, Alwar SP, Ranganathan LN. Knowledge, attitude, and practice of people toward epilepsy in a south Indian village. J Neurosci Rural Pract 2016;7:374-80.
] [Full text]
Radhakrishnan K, Pandian JD, Santhoshkumar T, Thomas SV, Deetha TD, Sarma PS, et al
. Prevalence, knowledge, attitude and practice of epilepsy in Kerala, south India. Epilepsy 2000;41:1027-35.
Amudhan S, Gururaj G, Satishchandra P. Epilepsy in India II: Impact, burden and need for a multisectorial public health response. Ann Indian Acad Neurol 2015b; 18:369-81.
Nehra A, Singla S, Bajpai S, Malviya S, Padma V, Tripathi M. Inverse relationship between stigma and quality of life in India: Is epilepsy a disabling neurological condition? Epilepsy Behav 2014;39:116-25.
Kumari P, Ram D, Haque Nizamie S, Goyal N. Stigma and quality of life in individuals with epilepsy: A preliminary report. Epilepsy Behav 2009;15:358-61.
Prakesh P, Kumar P, Shinha VK. Perceived social support and stigma in the adult with epilepsy and normal control. Delhi Psychiatry J 2014;17:92-9.
Sawant N, Kinra V. An Indian study on perceptions of patients of epilepsy and their family to stigma and its impact on quality of life. Am J Clini Neurol Neurosurg 2015;1:1-9.
Riasi H, Sanati AR, Ghaemi K. The stigma of epilepsy and its effects on marital status. Springer Plus 2015;3:762.
Walter SD, Eliasziw M, Donner A. Sample size and optimal designs for reliability studies. Stat Med 1998;17:101-10.
Fernandes PT, Salgado PCB, Noronha ALA, Sander JW, Li LM. Stigma scale of epilepsy. Validation process. Arq Neuropsiquiatr 2007;65(Supl 1):35-42.
Fernandes PT, Salgado PCB, Noronha ALA, de Boer HM, Prilipko L, Sander JW, et al
. Epilepsy stigma perception in an urban area of a limited-resource country. Epilepsy Behav 2007b; 11:25-32.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]