A Survey of Public Awareness, Understanding, and Attitudes toward Epilepsy in Greece

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  • Epilepsia, 47(12):21542164, 2006Blackwell Publishing, Inc.C 2006 International League Against Epilepsy

    A Survey of Public Awareness, Understanding, and Attitudestoward Epilepsy in Greece

    Nicholaos Diamantopoulos, Joseph Kaleyias, Meropi Tzoufi, and Charilaos KotsalisDepartment of Pediatric Neurology, Karamandanion Childrens Hospital, Patra, Greece; Department of Pediatrics, University of

    Ioannina Hospital, Ioannina, Greece; and Department of Pediatric Neurology, Pentelis Childrens Hospital, Athens, Greece

    Summary: Purpose: To assess familiarity, understanding, andattitude toward epilepsy in Greece and identification of negativepredictive factors.

    Methods: A 19-item questionnaire was administered to 750adults. The magnitude of social stigma toward epileptic peoplewith epilepsy was measured with a quantitative scale of socialrejection. Statistical analysis with chi-square and multiple re-gression analysis were used to identify factors associated withnegative attitudes.

    Results: Of our respondents 38.8% knew someone withepilepsy and 50.8% had witnessed a seizure. Ninteen percent be-lieved that epilepsy is a type of mental retardation, 15% believedit is a type of insanity, 91.8% considered epilepsy as a brain dis-order while 5.2% considered it as a supernatural phenomenon.Seventy-seven percent considered epilepsy as a curable diseasewhile 57.5% believed that the risk of inheriting it is very high.

    Regarding marriage to a patient with epilepsy 45.4% rejectedit while regarding his employment 37.7% were positive, 47.8%were skeptical while 12.8% were against it. The Greek pub-lics rejection tendency toward epileptic people was generallylow. Negative predictive factors were older age, low educationallevel, unfamiliarity with epilepsy, and erroneous beliefs aboutepilepsy.

    Conclusions: The Greek public is familiar with epilepsy buthas a suboptimal level of appropriate understanding of essentialaspects of the disease. The overall publics level of rejection to-ward people with epilepsy is low but certain groups of people arehighly rejective. Information campaigns targeting specific pop-ulation subgroups are necessary in Greece in order to improvethe publics understanding of epilepsy and tolerance towardpeople with epilepsy. Key Words: EpilepsyAwarenessKnowledgeAttitudesGreece.

    INTRODUCTION

    Epilepsy, the falling sickness or sacred disease of pasttimes, is a disease that often carries a heavy social stigma.Although the quality of life of a person with epilepsy isprimarily determined by the duration of the disease andthe extent of seizure control, other nonepileptic parameterssuch as social and psychological factors are also very im-portant. Closely interrelated social factors include socialanxiety, parental anxiety, employment, and social stigma.(Jacoby, 2002; Schachter, 2005).The role of these factorshas been studied by numerous studies and has been thesubject of a book (Baker and Jacoby, 2000).

    Stigma is defined as any social attribute that is deeplydiscrediting for an individual and, in the case of epilepsy,it can significantly affect the quality of a patients life inmany everyday activities such as going to school, working,driving, creating a family, and obtaining insurance. Thesocial stigma has been classified (Scambler, 1989) as felt

    Accepted July 24, 2006.Address correspondence and reprint requests to N. Diamantopoulos,

    Department of Pediatric Neurology, Karamandanion Childrens Hospi-tal, Patra, Greece. E-mail: diam-nik@otenet.gr

    doi:10.1111/j.1528-1167.2006.00891.x

    and enacted. Felt stigma is defined as the shame associatedwith being an epileptic and the fear of encountering stigmaby other people while enacted stigma is defined as actualepisodes of discrimination against an epileptic, solely onthe ground of his disease. The stigma associated with anydisorder is determined not only by the actual character-istics of the disorder but also by social stereotypes con-cerning it created by lack of information, misconceptions,and unfounded fears. In the case of epilepsy, stigma seemsto be largely based on the public perception of epilepsyas a disease that can unpredictably cause a violent andfrightening attack on the patients mental faculties, thatis incurable, that affects the patients personality, and thatmay be transmitted to his offspring. These perceptions,although not entirely or necessarily misconceptions, whenbecome social stereotypes, obviously cause prejudice andrejection toward anyone with epilepsy.

    If these problems are to be dealt with, a systematic studyof the public knowledge and attitude toward epilepsy isthe necessary first step. Such studies have been carriedout in many countries throughout the world: UnitedStates (Caveness et al., 1974, Caveness and Gallup, 1980,Kobau and Price, 2003), Germany (Finke, 1980), Finland

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  • SOCIAL ATTITUDES TOWARD EPILEPSY IN GREECE 2155

    (Iivanainen et al., 1980), Italy (Canger and Cornaggia,1985), China (Lai et al., 1990), Denmark (Jensen and Dam,1992), Taiwan (Chung et al., 1995), India (Gambhir et al.,1995 Radhakrishnan et al., 2000), Hungary (Mirnics et al.,2001), Czechoslovakia (Novotna and Rector, 2002), NewZealand (Hills and MacKenzie, 2002), Korea (Kim et al.,2003), United Kingdom (Jacoby et al., 2004), and Austria(Spatt et al., 2005). A similar study in Oman (Al Adawiet al., 2001) was restricted to health personnel. The presentstudy is the first of its kind in Greece.

    Some of these earlier studies have tried to identify socio-economic variables associated with negative attitudes to-ward people with epilepsy but only two studies (Chunget al., 1995; Spatt et al., 2005) have used methods of mul-tivariate analysis. Our study introduced a novel approachto obtain a quantitative measurement of the public atti-tude toward people with epilepsy and used multivariateanalysis to identify individual predictive variables.

    Such studies are performed not just for descriptive pur-poses but with the ultimate hope that their findings willbe helpful in designing information campaigns regardingepilepsy. Some of the earlier studies that have been re-peated over time show positive (more tolerant) changes insocial attitude toward epilepsy. Examples are the USAbetween 1949 and 1979 (Caveness and Gallup, 1980),Hungary between 1994 and 2000 (Mirnics et al., 2001),and the Czech Republic between 1981 and 1998 (Novotnaand Rector, 2002). This trend can be explained by the gen-eral improvements in the educational level, by the easierpropagation of information, and perhaps by sociopoliti-cal changes that have taken place over the past decadesin these countries as well as by specific interventions andcampaigns regarding epilepsy. The exact impact of suchspecific interventions is difficult to evaluate but there islimited evidence that they can be effective (Mirnics et al.,2001; Kim et al., 2003).

    MATERIALS AND METHODS

    The study design and the sampleThe study was conducted in January 2003 by cooper-

    ation of the Departments of Pediatric Neurology of threeRegional Medical Centers covering three large geograph-ical and administrative areas of Greece: the District ofAttica, in central Greece, including the capital city ofAthens, the District of Achaia, in south west Greece, in-cluding the city of Patra and the District of Ioannina, innorth west Greece, including the city of Ioannina. Thismulticenter design was used to obtain a sample that wouldrepresent large and socioeconomically diverse parts of thecountry in an attempt to approximate a nationwide study.

    The questionnaire was administered during a face-to-face interview to randomly selected healthy people vis-iting the three participating medical centers. Epilepsyoutpatient clinics were specifically excluded as potential

    sources of interviewees but if one of the other visitors hada relative with epilepsy he was allowed to participate. Inthe case of a whole family visiting the medical center onlyone member was allowed to participate. The only visitorselection criteria were that they should be adults (over20 years old) and that they should be permanent residentsof the district studied. Immigrants into the country musthave been residing in Greece for at least two years andunderstand the language.

    Each of the three participating districts contributed 250adults (20 years of age or older) permanently residing inthe district, thus creating a sample of 750 people. TheDistrict of Atticawhere the capital city is locatedcontributed equally to the other two districts because al-though it is a much larger district it represents approxi-mately one-third of Greeces total population while thetwo other districts represent the remaining two-thirds.Each group of 250 people was stratified according tosex, age (2039, 4059, and over 60 years old), area ofresidence (urban: population of more than 10,000, semi-urban: population between 2,000 and 10,000 and rural:population of less than 2,000), educational level (I: illit-erate or only part of primary school, II: graduates of pri-mary school, III: graduates of secondary school, and IV:graduates of university) and marital status. To assure thatthe sample was as much as possible representative of thepopulation under study the proportions of people in eachstratum were predetermined to correspond to the relevantproportions of the Greek 2001 census for each one of thethree participating districts.

    Because of a significant influx of economic immigrantsinto Greece over the past 1015 years (primarily fromAlbania and other countries of the former Eastern block)we thought it appropriate to incorporate a group of im-migrants into the study and therefore the sample was alsostratified according to nationality (Greeks versus immi-grants).The questionnaire

    The questionnaire consisted of 19 questions (see theAppendix). Eight of them (Q 1, 3, 4, 6, 9, 16, 17, 18) werereplicated, in their original format or slightly modified,from the 1980 USA study of Caveness and Gallup (1980).The other 11 questions were developed after reviewingthe relevant literature and considering the most importantsocial issues relevant to epilepsy. The questionnaire inves-tigated three major issues:

    a. Familiarity with epilepsy (Q1Q4)b. Understanding of epilepsy (Q5Q11)c. Attitude toward the epileptic person (Q12Q19).

    The answers to the first two groups of questions wereof the yes or no format while the questions regardingattitude toward epilepsy allowed for selection betweenthree or four graded answers with the first choice always

    Epilepsia, Vol. 47, No. 12, 2006

  • 2156 N. DIAMANTOPOULOS ET AL.

    TABLE 1. Demographic data of the sampleI. Attica N (%) II. Achaia N (%) III. Ioannina N (%) Total N (%)

    250 (100) 250 (100) 250 (100) 750 (100)Age

    2039 yrs 103 (41.2) 101 (40.4) 87 (34.8) 291 (38.8)4059 yrs 85 (34.0) 79 (31.6) 80 (32.0) 244 (32.5)>60 yrs 62 (24.8) 70 (28.0) 83 (33.2) 215 (28.7)

    SexMale 117 (46.8) 125 (48.0) 128 (49.2) 370 (49.3)Female 133 (53.2) 125 (48.0) 122 (43.8) 380 (50.7)

    NationalityGreeks 232 (92.8) 233 (93.2) 244 (97.6) 709 (94.5)Immigrants 18 (7.2) 17 (6.8) 6 (2.4) 41 (5.5)

    Area of residenceUrban: >10,000 221 (88.4) 147 (58.8) 145 (58.0) 513 (68.4)Semiurban: 200010,000 21 (8.4) 66 (26.4) 34 (13.6) 121 (16.1)Rural:

  • SOCIAL ATTITUDES TOWARD EPILEPSY IN GREECE 2157

    TABLE 2. Answers to Q1 (Have you ever heard of a diseasenamed epilepsy?)

    N Yes (%) No (%)

    Total sample 750 94.5 5.5Region

    Attica 250 96.8 3.2Achaia 250 94.8 5.2Ioannina 250 92.0 8.0

    SexMale 370 94.1 5.9Female 380 95.0 5.0

    Age2039 291 97.2 2.84059 244 95.1 4.9>60 215 90.3 9.7

    Nationality:Greeks 709 95.3 4.7Immigrants 41 80.5 19.5

    ResidenceUrban 513 97.9 2.1Semiurban 121 95.0 5.0Rural 116 79.5 20.5

    EducationLevel I 114 78.1 21.9Level II 200 94 6.0Level III 270 98.9 1.1Level IV 166 99.4 0.6

    Marital statusUnmarried 114 14.0 7.0Married / divorced 636 80.2 5.2

    Statistical significance (p 60 194 3.0 97.0 194 36.6 63.4 194 55.1 44.9

    NationalityGreeks 676 3.5 96.5 672 39.2 60.8 672 51.2 48.8Immigrants 33 9.0 91.0 32 34.4 65.6 33 50.0 50.0

    ResidenceUrban 501 4.2 95.8 499 39.8 59.2 498 52.7 47.3Semiurban 116 2.6 97.4 114 38.6 61.4 114 45.6 54.4Rural 92 3.3 96.7 91 37.4 62.6 913 51.6 48.4

    EducationLevel I 89 2.2 97.8 88 38.6 61.4 88 50.0 50.0Level II 191 5.8 94.2 189 40.7 59.3 188 52.4 47.6Level III 265 4.1 95.9 264 36.7 63.3 265 48.5 51.5Level IV 164 1.8 98.2 163 41.1 58.9 164 54.6 45.4

    Marital statusUnmarried 106 5.6 94.4 104 44.2 55.8 105 48.0 52.0Married / divorced 603 3.5 96.5 598 38.1 61.9 599 51.7 48.3

    Q2 = Do you have a close relative with epilepsy? Q3 = Do you personally know someone with epilepsy? Q4 = Have you ever witnessed a seizure?

    3.4% answered that they had a close relative with epilepsy,38.8% answered that they were personally acquainted withsomeone with epilepsy and 50.8% reported that they hadwitnessed a seizure. These figures represent a signifi-cant degree of familiarity with the disease and its clinicalexpression.

    Understanding of epilepsyThe understanding the nature, the cause(s), and the

    long-term course of epilepsy were evaluated by a groupof seven questions and the responses are presented inTables 4 and 5. Of the 709 people 18.9% believed thatepilepsy is a type of mental retardation (Q5) and 15.0%believed that it is a type of insanity or madness (Q6). Thesefigures reflect a high degree of misunderstanding of thetrue nature of epilepsy and represent a significant preju-dice toward a person with epilepsy since he or she seemsto be considered by a significant part of the population asinsane or retarded or both by definition. Both of these erro-neous beliefs were significantly more frequent among theless educated (levels I and II), the elderly, and those livingin rural communities (only for mental retardation). Theywere also more frequent among people from the Ioanninadistrict probably reflecting the higher proportion of ruralresidents and the lower educational level in this part of thecountry. Asked (Q7) whether epilepsy is a type of brain

    Epilepsia, Vol. 47, No. 12, 2006

  • 2158 N. DIAMANTOPOULOS ET AL.

    TABLE 4. Answers to questions regarding understanding of epilepsyQ5 Q6 Q7 Q8 Q10 Q11

    N Yes No N Yes No N Yes No N Yes No N Never Often N Small High,rarely usually moder. very high

    % % % % % % % % % % % %

    Total sample 560 18.9 81.1 574 15.0 75.0 552 91.8 8.2 612 5.2 94.8 497 77.5 22.5 520 42.5 57.5Region

    Attica 209 6.7 93.3 205 7.8 92.2 203 90.6 9.4 223 1.8 98.2 176 74.4 25.6 171 50.9 49.1Achaia 188 29.2 70.8 195 13.8 86.2 176 92.0 8.0 199 4.5 95.5 168 83.3 16.7 182 29.7 70.3Ioannina 163 22.7 77.3 174 24.7 75.3 173 93.0 7.0 190 10.0 90.0 153 74.5 25.5 167 47.9 52.1

    SexMale 281 18.5 81.5 288 14.6 85.4 271 92.9 7.1 306 3.9 96.1 234 76.5 23.5 250 45.2 54.8Female 279 19.3 80.7 286 15.4 84.6 281 91.1 8.9 306 6.5 93.5 263 78.3 21.7 270 40.0 60.0

    Age:2039 225 12.4 87.6 237 8.0 92.0 226 88.9 11.1 259 2.3 97.7 187 71.1 28.9 195 51.8 48.24059 192 16.1 83.9 192 13.0 87.0. 188 94.7 5.3 203 5.9 94.1 175 74.8 25.2 175 43.4 56.6> 60 143 32.9 67.1 145 28.9 71.1 138 92.7 7.3 150 9.3 91.7 135 89.6 10.4 150 29....

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