Clifford Lisa M, Brothers Shannon L, Lang Amy
Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Adolesc Health Med Ther. 2023 Feb 5;14:27-43. doi: 10.2147/AHMT.S336124. eCollection 2023.
This review aimed to synthesize the minimal existing literature on the impact of perceived stigma on self-disclosure patterns among children and youth with epilepsy (YWE). Initial literature searches were conducted in PsycInfo, Scopus, Web of Science, and PubMed using search terms focused on epilepsy, pediatrics, disclosure, and/or stigma. Articles were included if they were original human research articles published in peer-reviewed journals that were accessible in English through Cincinnati Children's Hospital Medical Center Pratt Library and fit study aims. Thirteen articles, which primarily used qualitative self-report methodologies, fit the study's inclusion criteria. YWE report greater perceived stigma and lower illness disclosure compared to youth with other chronic health conditions. Across studies, perceived stigma was consistently identified as a barrier to YWE disclosing their epilepsy diagnosis. Consequences of perceived stigma included lower self-esteem, poorer perceived competency, lack of self-confidence, social withdrawal, and lower quality of life. YWE's reluctance to disclose epilepsy was associated with worry about differential treatment, negative impact on close relationships, negative impact on others' perceptions, and negative self-perceptions. While WHO and ILAE have identified stigma as contributing to higher disease burden in people with epilepsy and have highlighted the importance of prioritizing social policy focused on decreasing epilepsy-related stigma, progress has been incremental and much work remains. Future research is needed to understand socio-cultural factors perpetuating stigma among YWE in order to further develop, evaluate, and disseminate evidence-based clinical and education programming to combat epilepsy-related stigma.
本综述旨在综合现有的关于癫痫儿童和青少年（YWE）中感知到的耻辱感对自我表露模式影响的最少文献。最初在PsycInfo、Scopus、科学网和PubMed中进行文献检索，使用的检索词聚焦于癫痫、儿科学、表露和/或耻辱感。如果文章是发表在同行评审期刊上的原创人体研究文章，可通过辛辛那提儿童医院医疗中心普拉特图书馆以英文获取且符合研究目的，则予以纳入。13篇主要采用定性自我报告方法的文章符合该研究的纳入标准。与患有其他慢性健康状况的青少年相比，YWE报告的耻辱感更强，疾病表露更少。在各项研究中，感知到的耻辱感一直被确定为YWE披露其癫痫诊断的障碍。感知到的耻辱感的后果包括自尊降低、自我效能感较差、缺乏自信、社交退缩和生活质量较低。YWE不愿披露癫痫与担心区别对待、对亲密关系的负面影响、对他人看法的负面影响以及负面的自我认知有关。虽然世界卫生组织和国际抗癫痫联盟已确定耻辱感会导致癫痫患者的疾病负担加重，并强调了优先制定旨在减少与癫痫相关耻辱感的社会政策的重要性，但进展甚微，仍有许多工作要做。需要开展进一步的研究，以了解使YWE中耻辱感持续存在的社会文化因素，从而进一步制定、评估和传播基于证据的临床和教育方案，以对抗与癫痫相关的耻辱感。
