Stigma in the lives of adolescents with epilepsy: a review of the literature

• Published in: Epilepsy & behavior 2003-04, Vol.4 (2), p.112-117
• Main Authors: MacLeod, Jessica S, Austin, Joan K
• Format: Article
• Language: English
• Subjects: Adolescent; Adolescents; Child; Disclosure management; Epilepsy; Epilepsy - psychology; Humans; Quality of Life; Stereotyping; Stigma; Surveys and Questionnaires
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/S1525-5050(03)00007-6

The World Health Organization, the Centers for Disease Control and Prevention, and the Epilepsy Foundation have recently focused attention on problems experienced by people with epilepsy as a result of stigma. Stigma is associated with poor psychosocial health outcomes in people with epilepsy, and its effects may be strongly felt by adolescents who are already dealing with the challenges of developing self-identity and self-esteem. This review synthesizes the empirical literature on stigma in the lives of adolescents with epilepsy. Beginning research indicates that stigma is related to quality of life in adolescents with epilepsy, although existing measures may not yet fully capture how this stigma is experienced. For example, instead of reporting stigma actually experienced, adolescents report limiting disclosure of their illness, perhaps because they anticipate being stigmatized in a peer social environment that fosters misconceptions about people with epilepsy. Recommendations for future research are discussed.