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

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.

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.

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.

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.