Skip to main content
SpringerLink
Log in

Einstellungen zu Epilepsie in Deutschland 1967 bis 2008

Public attitudes towards epilepsy in Germany from 1967 through 2008

Zeitschrift für Epileptologie volume 23, pages 82–97 (2010)Cite this article

Zusammenfassung

Ziel der Studie war es, Einstellungen der Bevölkerung gegenüber Menschen mit Epilepsie in Deutschland und ihre Auswirkungen im Alltag zu erfassen. In einer repräsentativen Stichprobe wurden 2135 Personen, älter als 14 Jahre, befragt („face-to-face“). Ein Teil der insgesamt 54 Fragen war in 5 vergleichbaren Erhebungen seit 1967 gestellt worden. Es zeigte sich eine Abnahme negativer Epilepsiestereotype (Kontaktvermeidung und Zuschreibung negativer Persönlichkeitsmerkmale). Etwa 10% der Befragten hatten aber 2008 noch deutlich negative Einstellungen. Das Epilepsiebild wird durch den großen generalisierten Krampfanfall bestimmt, dessen Symptome mehr als 90% der Befragten kennen. Die Symptome von Absencen bzw. komplex-fokalen Anfällen sind dagegen nur etwa der Hälfte der Bevölkerung bekannt. Und nur 45% der Befragten wissen, dass Epilepsie erfolgreich behandelt werden kann. Befürchtungen hinsichtlich des Auftretens von Anfällen und Verletzungen beim Zusammentreffen mit Epilepsiekranken finden sich bei 44% resp. 65% der Bevölkerung. Arbeitskollegen mit einer Epilepsie lösen im Vergleich zu Kollegen mit chronischen Erkrankungen wie Diabetes, Herzinfarkt oder Benutzung eines Rollstuhls höhere Verunsicherung aus. Mehr als ein Drittel der Befragten hält, ohne Berücksichtigung von Art und Häufigkeit der Anfälle, Menschen mit Epilepsie als ungeeignet für Berufe wie Metallarbeiter, Lehrer, Krankenschwester. Der wichtigste Einflussfaktor auf negative (stereotype) Einstellungen der Bevölkerung ist das Wissen über die (gute) Prognose und Behandlungsoptionen sowie das angemessene Verhalten bei epileptischen Anfällen. Informationsstrategien sollten sich an konkreten Alltagssituationen orientieren. Geeignete Erhebungsinstrumente und die Ursachen negativer Einstellungen der Bevölkerung gegenüber Menschen mit Epilepsie sollten weiterhin Gegenstand wissenschaftlicher Untersuchungen sein.

Abstract

Purpose

To assess public attitudes in Germany towards epilepsy in 2008 and to compare the results with those of former surveys performed in Germany five times since 1967. Furthermore, predictors of negative attitudes should be identified.

Methods

In a representative survey, 2135 persons (>14 years) were interviewed face-to-face. The interview comprised 54 questions including those from the US Gallup poll (1949) and additional questions to better understand determinants of negative attitudes. The influence of sociodemographic variables as well as of concepts about epilepsy on attitudes was analyzed by using logistic and linear stepwise regression analyses.

Results

In 2008, 94% compared to 84% in 1967 had ever heard or read about epilepsy. Negative attitudes decreased continuously over the years from 1967 to 2008: making objections to having one’s own child associate with persons who sometimes had seizures: 37% vs. 8%; persons with epilepsy should not be employed like other people: 31% vs. 11%; object to having a son or daughter marrying a person who sometimes has seizures: 30% vs. 18%; epilepsy is a form of insanity: 27% vs. 11%. When analyzing jointly all questions addressing negative attitudes, about 10% still expressed clear negative attitudes in 2008. The image of epilepsy in the general population is characterized by the grand mal seizure. More than 90% know its symptoms, whereas only about 50% would discern the symptoms of absences or complex partial seizures as signs of epileptic seizures. Only 45% knew that epilepsy can be successfully treated. When meeting a person with epilepsy in everyday life, 44% are afraid that a seizure may occur and 65% that the person may get injured. A coworker with 1–2 seizures per year causes concern comparable to a person with a depression, however much greater concern than to a wheelchair user, a person with diabetes or a person with a heart attack a year ago. More than one-third of the population thinks that persons with epilepsy can not be employed as nurse, teacher, metal worker, irrespective of type and frequency of seizures. The most important predictor for attitudes towards people with epilepsy was (good) knowledge about prognosis, options for treatment, and adequate management if a seizure should occur in one’s presence.

Conclusion

Public education on epilepsy should not only relate to the disease and its treatment, but also to the management of epilepsy in everyday life and the working sphere. Furthermore, it should address the emotional reactions aroused in encounters with persons with epilepsy.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

USD 39.95

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Abb. 1
Abb. 2
Abb. 3
Abb. 4
Abb. 5
Abb. 6

Literatur

  1. Angermeyer MC, Matschinger H (1996) Soziale Distanz der Bevölkerung gegenüber psychisch Kranken. Gesundheitswesen 58 [Suppl 1]:18–24

  2. Angermeyer MC, Matschinger H (1997) Social distance towards the mentally ill: results of representative surveys in the Federal Republic of Germany. Psychol Med 27:131–141

    Article  PubMed  CAS  Google Scholar 

  3. Austin JK, Shafer PO, Deering JB (2002) Epilepsy familiarity, knowledge, and perceptions of stigma: report from a survey of adolescents in the general population. Epilepsy Behav 3:368–375

    Article  PubMed  Google Scholar 

  4. Awad A, Sarkhoo F (2008) Public knowledge and attitudes toward epilepsy in Kuwait. Epilepsia 49:564–572

    Article  PubMed  Google Scholar 

  5. Bagic A, Bagic D, Zivkovic I (2009) First population study of the general public awareness and perception of epilepsy in Bosnia and Herzegovina. Epilepsy Behav 14:154–161

    Article  PubMed  Google Scholar 

  6. Bagic A, Bagic D, Zivkovic I (2009) First population study of the general public awareness and perception of epilepsy in Croatia. Epilepsy Behav 15:170–178

    Article  PubMed  Google Scholar 

  7. Bagley C (1972) Social prejudice and the adjustment of people with epilepsy. Epilepsia 13:33–45

    Article  PubMed  CAS  Google Scholar 

  8. Bogardus E (1933) A social distance scale. Soc Sci Res 17:265–271

    Google Scholar 

  9. Canger R, Cornaggia C (1985) Public attitudes toward epilepsy in Italy: results of a survey and comparison with U.S.A. and West German data. Epilepsia 26:221–226

    Article  PubMed  CAS  Google Scholar 

  10. Caveness W (1954) A survey of public attitudes toward epilepsy, 1954. Epilepsia 3:99–102

    Article  PubMed  CAS  Google Scholar 

  11. Caveness WF (1949) A survey of public attitudes towards epilepsy. Epilepsia (Boston) Ser 2, 4:19–26

  12. Caveness WF (1960) Trend in public attitudes toward epilepsy over the past decade. Epilepsia 1:385–393

    Article  PubMed  CAS  Google Scholar 

  13. Caveness WF, Gallup GH Jr (1980) A survey of public attitudes toward epilepsy in 1979 with an indication of trends over the past thirty years. Epilepsia 21:509–518

    Article  PubMed  CAS  Google Scholar 

  14. Caveness WF, Merritt HH, Gallup GH (1969) A survey of public attitudes toward epilepsy in 1969 with an indication of trends over the past twenty years. Epilepsia 10:429–440

    Article  PubMed  CAS  Google Scholar 

  15. Caveness WF, Merritt HH, Gallup GH Jr (1974) A survey of public attitudes toward epilepsy in 1974 with an indication of trends over the past twenty-five years. Epilepsia 15:523–536

    Article  PubMed  CAS  Google Scholar 

  16. Caveness WF, Merritt HH, Gallup GH, Ruby EH (1965) A survey of public attitudes toward epilepsy in 1964, with an indication of trends over the past fifteen years. Epilepsia 6:75–86

    Article  PubMed  CAS  Google Scholar 

  17. Choi-Kwon S, Park KA, Lee HJ et al (2004) Familiarity with, knowledge of, and attitudes toward epilepsy in residents of Seoul, South Korea. Acta Neurol Scand 110:39–45

    Article  PubMed  CAS  Google Scholar 

  18. Chung MY, Chang YC, Lai YH, Lai CW (1995) Survey of public awareness, understanding, and attitudes toward epilepsy in Taiwan. Epilepsia 36:488–493

    Article  PubMed  CAS  Google Scholar 

  19. Daoud A, Al-Safi S, Otoom S et al (2007) Public knowledge and attitudes towards epilepsy in Jordan. Seizure 16:521–526

    Article  PubMed  Google Scholar 

  20. Demirci S, Donmez CM, Gundogar D, Baydar CL (2007) Public awareness of, attitudes toward, and understanding of epilepsy in Isparta, Turkey. Epilepsy Behav 11:427–433

    Article  PubMed  Google Scholar 

  21. Diamantopoulos N, Kaleyias J, Tzoufi M, Kotsalis C (2006) A survey of public awareness, understanding, and attitudes toward epilepsy in Greece. Epilepsia 47:2154–2164

    Article  PubMed  Google Scholar 

  22. Diehl LW, Hauck G (1975) Changes in public attitudes toward epilepsy in the Federal Republic of Germany since 1967. Nervenarzt 46:519–524

    PubMed  CAS  Google Scholar 

  23. Diiorio CA, Kobau R, Holden EW et al (2004) Developing a measure to assess attitudes toward epilepsy in the US population. Epilepsy Behav 5:965–975

    Article  PubMed  Google Scholar 

  24. Doughty J, Baker GA, Jacoby A, Lavaud V (2003) Cross-cultural differences in levels of knowledge about epilepsy. Epilepsia 44:115–123

    Article  PubMed  Google Scholar 

  25. Finke M (1981) Public attitudes toward epilepsy in the Federal Republic of Germany. Trends from 1967 to 1978 (author’s translation). Nervenarzt 52:581–584

    PubMed  CAS  Google Scholar 

  26. Fong CY, Hung A (2002) Public awareness, attitude, and understanding of epilepsy in Hong Kong special administrative region, China. Epilepsia 43:311–316

    Article  PubMed  Google Scholar 

  27. Gambhir SK, Kumar V, Singhi PD, Goel RC (1995) Public awareness, understanding & attitudes toward epilepsy. Indian J Med Res 102:34–38

    PubMed  CAS  Google Scholar 

  28. Harden CL, Kossoy A, Vera S, Nikolov B (2004) Reaction to epilepsy in the workplace. Epilepsia 45:1134–1140

    Article  PubMed  Google Scholar 

  29. Hauck G (1968) The attitude of the population on epilepsy in the United States and Germany. Nervenarzt 39:181–183

    PubMed  CAS  Google Scholar 

  30. Hills MD, MacKenzie HC (2002) New Zealand community attitudes toward people with epilepsy. Epilepsia 43:1583–1589

    Article  PubMed  Google Scholar 

  31. Iivanainen M, Uutela A, Vilkkumaa I (1980) Public awareness and attitudes toward epilepsy in Finland. Epilepsia 21:413–423

    Article  PubMed  CAS  Google Scholar 

  32. Jacoby A, Austin JK (2007) Social stigma for adults and children with epilepsy. Epilepsia 48 [Suppl 9]:6–9

  33. Jacoby A, Gorry J, Gamble C, Baker GA (2004) Public knowledge, private grief: a study of public attitudes to epilepsy in the United Kingdom and implications for stigma. Epilepsia 45:1405–1415

    Article  PubMed  Google Scholar 

  34. Jacoby A, Wang W, Vu TD et al (2008) Meanings of epilepsy in its sociocultural context and implications for stigma: findings from ethnographic studies in local communities in China and Vietnam. Epilepsy Behav 12:286–297

    Article  PubMed  CAS  Google Scholar 

  35. Janz D (1966) Leitbilder der Epilepsie bei Hippokrates und Paracelsus. Jahrb Psychol Psychother Med Anthropol 14:2–16

    Google Scholar 

  36. Jensen R, Dam M (1992) Public attitudes toward epilepsy in Denmark. Epilepsia 33:459–463

    Article  PubMed  CAS  Google Scholar 

  37. Jilek-Aall L, Jilek M, Kaaya J et al (1997) Psychosocial study of epilepsy in Africa. Soc Sci Med 45:783–795

    Article  PubMed  CAS  Google Scholar 

  38. Kobau R, Price P (2003) Knowledge of epilepsy and familiarity with this disorder in the U.S. population: results from the 2002 HealthStyles survey. Epilepsia 44:1449–1454

    Article  PubMed  Google Scholar 

  39. Krämer G (2003) Einstellungen der Bevölkerung zur Epilepsie in der Schweiz. Epileptologie 20:145–148

    Google Scholar 

  40. Lai CW, Huang XS, Lai YH et al (1990) Survey of public awareness, understanding, and attitudes toward epilepsy in Henan province, China. Epilepsia 31:182–187

    PubMed  CAS  Google Scholar 

  41. Lauber C, Anthony M, Ajdacic-Gross V et al (2004) What about psychiatrists‘ attitude to mentally ill people? Factors influencing social distance toward people with mental illness. Eur Psychiatry 19:423–427

    Article  PubMed  Google Scholar 

  42. Le QC, Dinh DT, Jallon P (2006) Survey of public awareness, attitudes, and understanding toward epilepsy in Nhan Chinh, Hanoi, Vietnam, in 2003. Epilepsy Behav 8:176–180

    Article  PubMed  Google Scholar 

  43. Link BG, Phelan JC, Bresnahan M et al (1999) Public conceptions of mental illness: labels, causes, dangerousness, and social distance. Am J Public Health 89:1328–1333

    Article  PubMed  CAS  Google Scholar 

  44. Majkowski J, Smaga E, Stepniak U (1975) Further studies of the state of knowledge and attitudes of the rural population toward epilepsy. Neurol Neurochir Pol 9:49–56

    PubMed  CAS  Google Scholar 

  45. Mirnics Z, Czikora G, Zavecz T, Halasz P (2001) Changes in public attitudes toward epilepsy in Hungary: results of surveys conducted in 1994 and 2000. Epilepsia 42:86–93

    Article  PubMed  CAS  Google Scholar 

  46. Njamnshi AK, Angwafor SA, Tabah EN et al (2009) General public knowledge, attitudes, and practices with respect to epilepsy in the Batibo health district, Cameroon. Epilepsy Behav 14:83–88

    Article  PubMed  Google Scholar 

  47. Novotna I, Rektor I (2002) The trend in public attitudes in the Czech Republic towards persons with epilepsy. Eur J Neurol 9:535–540

    Article  PubMed  CAS  Google Scholar 

  48. Radhakrishnan K, Pandian JD, Santhoshkumar T et al (2000) Prevalence, knowledge, attitude, and practice of epilepsy in Kerala, South India. Epilepsia 41:1027–1035

    Article  PubMed  CAS  Google Scholar 

  49. Remschmidt H (1973) Psychological studies of patients with epilepsy and popular prejudice. Epilepsia 14:347–356

    Article  PubMed  CAS  Google Scholar 

  50. Sands H, Zalkind SS (1972) Effects of an educational campaign to change employer attitudes toward hiring epileptics. Epilepsia 13:87–96

    Article  PubMed  CAS  Google Scholar 

  51. Shafiq M, Tanwir M, Tariq A et al (2007) Epilepsy: public knowledge and attitude in a slum area of Karachi, Pakistan. Seizure 16:330–337

    Article  PubMed  CAS  Google Scholar 

  52. Shibre T, Alem A, Tekle-Haimanot R et al (2008) Community attitudes towards epilepsy in a rural Ethiopian setting: a re-visit after 15 years. Ethiop Med J 46:251–259

    PubMed  Google Scholar 

  53. Spatt J, Bauer G, Baumgartner C et al (2005) Predictors for negative attitudes toward subjects with epilepsy: a representative survey in the general public in Austria. Epilepsia 46:736–742

    Article  PubMed  Google Scholar 

  54. Specht U, Thorbecke R, May T (2007) Medizinische und medizinisch-berufliche Rehabilitation bei Epilepsie. In: Schönle PW (HRSG) Integrierte medizinisch-berufliche Rehabilitation. Hippocampus-Verlag, Bad Honnef, S 251–259

  55. Tekle-Haimanot R, Abebe M, Forsgren L et al (1991) Attitudes of rural people in central Ethiopia towards epilepsy. Soc Sci Med 32:203–209

    Article  PubMed  CAS  Google Scholar 

  56. Thorbecke R (1985) What do you think about epilepsy?– Attitudes and behaviour toward epileptics in the Federal Republic of Germany. Deutsche Sektion der Internationalen Liga gegen Epilepsie, Rundbrief, S 295–303

  57. Thorbecke R, Rating D (1996) Was denkt man über Epilepsie? Epilepsie Blatt 9:71–75

    Google Scholar 

  58. Trostle JA, Hauser WA, Susser IS (1983) The logic of noncompliance: management of epilepsy from the patient’s point of view. Cult Med Psychiatry 7:35–56

    Article  PubMed  CAS  Google Scholar 

  59. Zielinski JJ (1974) Epidemiology and medical-social problems of epilepsy in Warsaw population (research report). RSG Psychoneurological Institute Warsaw, Warsaw Washington

Download references

Danksagung

Die Autoren danken Herrn Prof. Dr. D. Gerber, Institut für Medizinische Psychologie und Soziologie der Medizinischen Fakultät der Christian Albrechts – Universität zu Kiel für die Unterstützung bei der Erstellung der Fragen.

Interessenkonflikt

Zu R. Thorbecke, M. Pfäfflin, T.W. May, U. Stephani und I. Coban: Die Autoren geben an, dass kein Interessenkonflikt besteht.

Zu D. Balsmeier: Der Autor weist auf folgende Beziehung hin: Es besteht ein Beschäftigungsverhältnis zur Kantar Health GmbH. Die Kantar Health GmbH firmierte bis zum 31.12.2009 als TNS Healthcare GmbH.

Author information

Authors and Affiliations

  1. Epilepsiezentrum Bethel, Maraweg 21, 33617, Bielefeld, Deutschland

    R. Thorbecke M.A., M. Pfäfflin, I. Coban & T.W. May

  2. Klinik für Neuropädiatrie, Universitätskinderklinik Kiel, Kiel, Deutschland

    U. Stephani

  3. TNS Healthcare, Bielefeld, Deutschland

    D. Balsmeier

Authors
  1. R. Thorbecke M.A.
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. M. Pfäfflin
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. D. Balsmeier
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. U. Stephani
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. I. Coban
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. T.W. May
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to R. Thorbecke M.A..

Rights and permissions

Reprints and Permissions

About this article

Cite this article

Thorbecke, R., Pfäfflin, M., Balsmeier, D. et al. Einstellungen zu Epilepsie in Deutschland 1967 bis 2008. Z. Epileptol. 23, 82–97 (2010). https://doi.org/10.1007/s10309-009-0088-z

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10309-009-0088-z

Schlüsselwörter

Keywords

search

Navigation