Stigma and epilepsy: The Chinese perspective Shichuo Li a, * , Jianzhong Wu a,b , Wenzhi Wang b , Ann Jacoby c , Hanneke de Boer d , Josemir W. Sander d,e a China Association Against Epilepsy, Beijing, People’s Republic of China b Beijing Neurosurgical Institute, Beijing, People’s Republic of China c Medical Sociology in the Department of Public Health, University of Liverpool, Liverpool, UK d Epilepsy Institutes of the Netherlands Foundation (SEIN), Heemstede, The Netherlands e Department of Experimental and Clinical Epilepsy, UCL Institute of Neurology, London, UK article info Article history: Received 12 October 2009 Revised 15 December 2009 Accepted 18 December 2009 Available online 25 January 2010 Keywords: Epilepsy Stigma China abstract In the Chinese language there is no equivalent for the English word stigma; nevertheless, for many years, people with epilepsy in China have suffered from stigma. We suggest that the best Chinese word to use is (meaning ‘‘feeling of disgrace because of the condition—epilepsy or other disease”). Since the 1980s, studies on stigma associated with epilepsy have been conducted in China. These studies found that stigma is felt by about 89% of people with epilepsy and by about 76% of their family members. Here we report the results of a survey conducted in 2008 in a population who were treated with phenobarbital in 2002–2004 during the Demonstration Project of the Global Campaign Against Epilepsy (GCAE). The causes and manifestations of stigma in people with epilepsy and recommendations on overcoming the stigma associated with epilepsy are discussed. Ó 2009 Elsevier Inc. All rights reserved. 1. Introduction Epilepsy is one of the most common neurological disorders, affecting individuals and their families, as well as having a socio- economic impact. Low social awareness of epilepsy and the stigma associated with epilepsy are major concerns of epilepsy specialists and public health workers throughout the world, but especially in developing countries. Stigma has been defined as ‘‘a distinguishing mark (especially) of disgrace” or as ‘‘an attribute that is deeply discrediting” [1]. The Chinese language, however, does not have a word equivalent to the English word stigma; the straightforward translation of stig- ma into Chinese, (feeling like a ‘‘criminal with a brand on the face or forehead”), does not adequately express the concept. A better translation would be , ‘‘feeling of disgrace because of the condition—epilepsy or other disease.” It is estimated that there are about 9 million people with epi- lepsy in China and that 63% are untreated or not properly treated [2]. Psychosocial studies in China have found that stigma is univer- sal among people with epilepsy and affects individuals and their families, causing ‘‘loss of face” and diminished self-esteem (Table 1) [3]. Consequently, social communication, quality of life, education, employment, marriage, and having children are severely affected in people with epilepsy. Studies have shown that some people ob- ject to their children associating with children with epilepsy or marrying someone with epilepsy and many believe that people with epilepsy should not be employed in normal jobs [4]. The sit- uation of people with epilepsy in China has been described as one of ‘‘benign rejection” [5]. As part of the follow-up study of the Global Campaign Against Epilepsy (GCAE) Demonstration Project (DP) in rural China, a study on stigma in people with epilepsy was conducted in 2008. 2. Methods The survey sites (Fig. 1) were located in rural areas where the GCAE DP had been carried out between 2002 and 2004 [6]. A total of 2275 people with epilepsy who were treated with phenobarbital in the DP were followed up, and 1372 people with epilepsy aged at least 14 years were interviewed individually during the follow-up study and completed a questionnaire for stigma evaluation (Ta- ble 2). This instrument (questionnaire), outlined in Table 2, was de- signed based on the Stigma Scale of Epilepsy from Brazil [7,8] and administered for the first time in a population. 3. Results All patients in the follow-up study had generalized tonic–clonic seizures and varied in age at epilepsy onset, seizure frequency, and other features not described here. Forty percent of these patients did not complete the questionnaire because they were younger 1525-5050/$ - see front matter Ó 2009 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2009.12.015 * Corresponding author. Address: China Association Against Epilepsy, Room 5102, Building No. 2, Beijing Exhibition Center Hotel, 135 Xizhimenwai Avenue, Beijing 100044, People’s Republic of China. Fax: +86 10 6525 0423. E-mail address: shichuoli@hotmail.com (S. Li). Epilepsy & Behavior 17 (2010) 242–245 Contents lists available at ScienceDirect Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh