MacLeod Jessica S, Austin Joan K
Indiana University School of Nursing, 1111 Middle Drive, NU 492, Indianapolis, IN 46202, USA.
Epilepsy Behav. 2003 Apr;4(2):112-7. 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.
世界卫生组织、疾病控制与预防中心以及癫痫基金会最近将注意力集中在癫痫患者因耻辱感而经历的问题上。耻辱感与癫痫患者不良的心理社会健康结果相关，而对于那些已经在应对自我认同和自尊发展挑战的青少年来说，其影响可能尤为强烈。本综述综合了关于癫痫青少年生活中耻辱感的实证文献。初步研究表明，耻辱感与癫痫青少年的生活质量相关，尽管现有测量方法可能尚未完全捕捉到这种耻辱感的体验方式。例如，青少年不是报告实际经历的耻辱感，而是报告限制对自己病情的披露，这可能是因为他们预计在一个滋生对癫痫患者误解的同伴社交环境中会受到耻辱对待。文中还讨论了对未来研究的建议。
