Studies on the perception of mental illness and epilepsy in Tehran, Iran : a study in stigma and discrimination

Background Stigma and discrimination because of medical conditions is a global phenomenon. Epilepsy and mental illness belong to the most stigmatizing disorders world-wide. Culture, religion, education, life-style influences the perception of stigma. There are two aspects of stigma of special interest for this thesis; internalized stigma, which is the perception of a person suffering from a condition and the public perception of this disorder. This study investigates both aspects of stigma because of mental illness and epilepsy. Internalized stigma of mental illness and epilepsy are also studied in Umea, Sweden, with the same instrument as in Iran in order to look at the cultural influence. Methods Paper 1 and 2 on internalized stigma because of mental disorders and epilepsy in Tehran: These studies are cross-sectional with 138 persons with mental illness recruited from three different hospitals in Tehran and 130 persons with epilepsy from one neurologic clinic in Tehran and the Iran epilepsy association. Internalized stigma because of mental illness was measured using ISMI (Internalized Stigma of Mental Illness) questionnaire and because of epilepsy with the same instrument adapted for epilepsy (ISEP). ISMI/ISEP contains 29 items measured by a 4-point Likert scale. An open-ended question about the experiences of discrimination was added. Paper 3 and 4 on public attitudes towards mental disorders and epilepsy in Tehran: These two studies were performed with 800 individuals randomly chosen from households in four districts of Iran (north, south, east and west). In Paper 3 on attitudes and knowledge of mental illness a modified version of a questionnaire developed for the World Association program to reduce discrimination and stigma because of schizophrenia was used. In Paper 4 on awareness of and attitudes towards epilepsy a questionnaire originally developed by Caveness and Gallup in United States as early as 1949 was used and since used in many studies all over the world. Paper 5 and 6 comparing internalized stigma because of mental disorders and epilepsy in Tehran and Umea: These two studies included patients suffering from mental disorders (N=163) and epilepsy (N=93) recruited from the university hospital in Umea, Sweden. The same questions as used in Paper 1 and 2 were applied. Results The experience of stigma because of mental disorders was high in the Iranian sample. The Swedish sample generally reported lower levels of experienced stigma than the Iranian except for items covering self-blame and feelings of alienation. As regards epilepsy the Iranian sample reported quite a high level of experienced stigma compared to the Swedish sample. Generally the patients with epilepsy reported lower levels of experienced stigma compared to patients with mental illness in the two settings. Attitudes towards mentally ill persons in Tehran were at the same levels as in western high income countries. The knowledge about and attitudes towards persons with epilepsy was also generally at the same level as found in other European studies expect for a much lower acceptance as regards accepting a person with epilepsy to marry someone in the family. Conclusion Stigma because of mental illness and epilepsy is a reality even in Iran, which is an Islamic setting in spite of the teachings of the Koran to show mercy with people who suffer from different ailments and rather well developed health services. The levels of experienced stigma is higher in Iran compared to Sweden, but still there is quite a lot of stigma because of mental illness even in Sweden in spite of several national efforts to reduce stigma. The lower levels of stigma because of epilepsy in both settings and especially in Sweden, is suggested to be the consequence of effective treatments available for epilepsy compared to the less successful treatments available for mental illness. The differences in internalized stigma reported and the public perceptions of stigma because of both mental illness and epilepsy between Iran and Sweden is suggested partly a consequence of the different cultural settings, Sweden being an extremely individualistic society compared to the more collectivistic Iranian society