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Einstellungen zu Epilepsie in Deutschland 1967 bis 2008

Public attitudes towards epilepsy in Germany from 1967 through 2008

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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.

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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.

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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

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  1. R. Thorbecke M.A.
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  2. M. Pfäfflin
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Correspondence to R. Thorbecke M.A..

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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

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