Self-Disclosure Patterns Among Children and Youth with Epilepsy: Impact of Perceived-Stigma.

IF 1.7 Q2 PEDIATRICS
Lisa M Clifford, Shannon L Brothers, Amy Lang
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引用次数: 4

Abstract

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.

Abstract Image

儿童和青少年癫痫患者的自我表露模式:感知耻辱的影响。
本综述旨在综合现有的关于感知耻辱对癫痫儿童和青少年(YWE)自我表露模式影响的文献。在PsycInfo、Scopus、Web of Science和PubMed中进行了初步文献检索,检索词集中在癫痫、儿科、披露和/或病耻感。如果文章是发表在同行评议期刊上的原创人类研究文章,可以通过辛辛那提儿童医院医学中心普拉特图书馆获得英文版本,并且符合研究目的,则纳入研究。13篇主要采用定性自我报告方法的文章符合本研究的纳入标准。与患有其他慢性疾病的青年相比,YWE报告的耻辱感更大,疾病披露率更低。在所有研究中,感知到的耻辱一直被认为是阻碍YWE披露其癫痫诊断的障碍。感知到的耻辱的后果包括自卑、感知能力差、缺乏自信、社交退缩和生活质量下降。YWE不愿透露自己患有癫痫,与担心差别待遇、对亲密关系的负面影响、对他人看法的负面影响以及对自我看法的负面影响有关。虽然世卫组织和国际癫痫学会已确定耻辱是导致癫痫患者疾病负担加重的原因之一,并强调了优先制定侧重于减少癫痫相关耻辱的社会政策的重要性,但进展是渐进的,仍有许多工作要做。为了进一步发展、评估和传播基于证据的临床和教育规划,以对抗癫痫相关的耻辱感,未来的研究需要了解在YWE中使耻辱感持续存在的社会文化因素。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
自引率
0.00%
发文量
13
审稿时长
16 weeks
期刊介绍: Adolescent Health, Medicine and Therapeutics is an international, peer reviewed, open access journal focusing on health, pathology, and treatment issues specific to the adolescent age group, including health issues affecting young people with cancer. Original research, reports, editorials, reviews, commentaries and adolescent-focused clinical trial design are welcomed. All aspects of health maintenance, preventative measures, disease treatment interventions, studies investigating the poor outcomes for some treatments in this group of patients, and the challenges when transitioning from adolescent to adult care are addressed within the journal. Practitioners from all disciplines are invited to submit their work as well as health care researchers and patient support groups. Areas covered include: Physical and mental development in the adolescent period, Behavioral issues, Pathologies and treatment interventions specific to this age group, Prevalence and incidence studies, Diet and nutrition, Specific drug handling, efficacy, and safety issues, Drug development programs, Outcome studies, patient satisfaction, compliance, and adherence, Patient and health education programs and studies.
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