Exploring the experience of stigma among children and adolescents with epilepsy in China: A qualitative study

IF 2.3 3区医学 Q2 BEHAVIORAL SCIENCES

Epilepsy & Behavior Pub Date : 2025-01-16 DOI:10.1016/j.yebeh.2025.110264

Jing Zhao , Shuangzi Li , Ni Zhang , Junqi Zeng , Cui Cui , Ting Wang , Qing Xia , Yuan Xie

{"title":"Exploring the experience of stigma among children and adolescents with epilepsy in China: A qualitative study","authors":"Jing Zhao , Shuangzi Li , Ni Zhang , Junqi Zeng , Cui Cui , Ting Wang , Qing Xia , Yuan Xie","doi":"10.1016/j.yebeh.2025.110264","DOIUrl":null,"url":null,"abstract":"<div><h3>Objective</h3><div>Epilepsy-related stigma negatively affects the lives of children and adolescents. This study aims to explore the experience of stigma among children and adolescents with epilepsy in China.</div></div><div><h3>Methods</h3><div>This study used purposive sampling to select children and adolescents aged 10–18 diagnosed with epilepsy. A total of sixteen participants with epilepsy engaged in semi-structured interviews. The interviews were audio-recorded, transcribed and translated. The data were then analyzed using a thematic analysis approach to identify themes and subthemes.</div></div><div><h3>Results</h3><div>The study identified four themes in the stigma experiences of children and adolescents with epilepsy: (1) The triggers of stigma, which include epilepsy stereotypes, seizure manifestations, and their unpredictability; (2) Concerns and uncertainties encompassing ASMs, academic pressure, future concerns, and transition uncertainties; (3) The impact of stigma on daily life including sleep and physical activity; and (4) Strategies and resources for addressing stigma, highlighting the importance of education and peer support.</div></div><div><h3>Conclusion</h3><div>Our findings provide a better understanding of the experience of epilepsy-related stigma among children and adolescents in China. The experiences of stigma described reveal the complex causes and the profound negative impact on their lives. However, it’s important to note that children and adolescents can also have positive experiences when confronted with stigma. Psychosocial outcomes can be improved through comprehensive education and peer support. Our findings can inform further research into evidence-based strategies for stigma reduction interventions that promote well-being.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"164 ","pages":"Article 110264"},"PeriodicalIF":2.3000,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Epilepsy & Behavior","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S1525505025000034","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"BEHAVIORAL SCIENCES","Score":null,"Total":0}

引用次数: 0

Abstract

Objective

Epilepsy-related stigma negatively affects the lives of children and adolescents. This study aims to explore the experience of stigma among children and adolescents with epilepsy in China.

Methods

This study used purposive sampling to select children and adolescents aged 10–18 diagnosed with epilepsy. A total of sixteen participants with epilepsy engaged in semi-structured interviews. The interviews were audio-recorded, transcribed and translated. The data were then analyzed using a thematic analysis approach to identify themes and subthemes.

Results

The study identified four themes in the stigma experiences of children and adolescents with epilepsy: (1) The triggers of stigma, which include epilepsy stereotypes, seizure manifestations, and their unpredictability; (2) Concerns and uncertainties encompassing ASMs, academic pressure, future concerns, and transition uncertainties; (3) The impact of stigma on daily life including sleep and physical activity; and (4) Strategies and resources for addressing stigma, highlighting the importance of education and peer support.

Conclusion

Our findings provide a better understanding of the experience of epilepsy-related stigma among children and adolescents in China. The experiences of stigma described reveal the complex causes and the profound negative impact on their lives. However, it’s important to note that children and adolescents can also have positive experiences when confronted with stigma. Psychosocial outcomes can be improved through comprehensive education and peer support. Our findings can inform further research into evidence-based strategies for stigma reduction interventions that promote well-being.

查看原文本刊更多论文

探讨中国儿童和青少年癫痫患者的病耻感经历：一项定性研究。

目的：癫痫相关的耻辱感对儿童和青少年的生活产生负面影响。本研究旨在探讨中国儿童和青少年癫痫患者的病耻感体验。方法：本研究采用有目的抽样的方法，选取10 ~ 18岁确诊为癫痫的儿童和青少年。共有16名癫痫患者参与了半结构化访谈。采访录音、文字记录和翻译。然后使用主题分析方法对数据进行分析，以确定主题和副主题。结果：本研究确定了儿童和青少年癫痫病耻感经历的四个主题：(1)病耻感的触发因素，包括癫痫刻板印象、癫痫表现及其不可预测性；(2)关注和不确定性，包括asm、学术压力、未来关注和过渡不确定性；(3)耻辱感对睡眠和身体活动等日常生活的影响；(4)解决耻辱的战略和资源，强调教育和同伴支持的重要性。结论：我们的研究结果有助于更好地理解中国儿童和青少年的癫痫相关病耻感。所描述的耻辱经历揭示了其复杂的原因和对其生活的深刻负面影响。然而，重要的是要注意，儿童和青少年在面对耻辱时也可以有积极的经历。通过全面的教育和同伴支持可以改善心理社会结果。我们的研究结果可以为进一步研究以证据为基础的减少耻辱感干预策略提供信息，从而促进福祉。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

Epilepsy & Behavior 医学-行为科学

CiteScore

5.40

自引率

15.40%

发文量

385

审稿时长

43 days

期刊介绍： Epilepsy & Behavior is the fastest-growing international journal uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy. Epilepsy & Behavior presents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging. From September 2012 Epilepsy & Behavior stopped accepting Case Reports for publication in the journal. From this date authors who submit to Epilepsy & Behavior will be offered a transfer or asked to resubmit their Case Reports to its new sister journal, Epilepsy & Behavior Case Reports.