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.
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.
京公网安备 11010802042870号
京ICP备2023020795号-1
分享
求助内容：
应助结果提醒方式：
扫码关注我们
