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<p>Epilepsy is not only a neurological disease but also a complex condition that profoundly affects individuals’ psychological well-being, social relationships, and quality of life. Individuals with epilepsy often face psychosocial problems such as stigmatization, social exclusion, and emotional difficulties. This study aimed to explore in depth the psychosocial experiences of individuals living with epilepsy about the disease and to reveal the meaning of these experiences. Data were collected through semi-structured in-depth individual interviews. The study was conducted with the participation of 15 individuals diagnosed with epilepsy residing in northern Türkiye. Purposive sampling was employed as the overarching strategy, with criterion sampling applied for participant selection and snowball sampling used to reach eligible individuals, and the interviews continued until data saturation was reached. Interviews were conducted within the framework of ethical rules, and informed consent was obtained from the participants. The qualitative data obtained were systematically analyzed using thematic analysis. The research process and reporting were done per the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist. Data analysis revealed three main themes (Individual meaning of epilepsy and its impact on life, Social life and experiences of discrimination, and Mental and social difficulties and coping processes) and eight sub-themes (Perception of the disease, Physical and mental reflections, Change in identity and self-perception, Social support and acceptance, Discrimination and stigmatization, Psychological difficulties, Difficulties in education and/or work life, and Coping strategies). This study revealed that individuals diagnosed with epilepsy face multifaceted psychosocial challenges not only in physical but also in emotional, social, and economic domains. Experiences such as stigmatization, social exclusion, uncertainty, and loss of self-confidence negatively affect quality of life. These findings emphasize the importance of holistic and inclusive approaches that are sensitive to medical and psychosocial factors.</p>

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The psychosocial dimension of epilepsy: a phenomenological study on life experiences of individuals

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年5月26日

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  • Elif Güzide Emi̇rza,
  • Sevda Uzun,
  • Kübra Yeni̇

摘要

Epilepsy is not only a neurological disease but also a complex condition that profoundly affects individuals’ psychological well-being, social relationships, and quality of life. Individuals with epilepsy often face psychosocial problems such as stigmatization, social exclusion, and emotional difficulties. This study aimed to explore in depth the psychosocial experiences of individuals living with epilepsy about the disease and to reveal the meaning of these experiences. Data were collected through semi-structured in-depth individual interviews. The study was conducted with the participation of 15 individuals diagnosed with epilepsy residing in northern Türkiye. Purposive sampling was employed as the overarching strategy, with criterion sampling applied for participant selection and snowball sampling used to reach eligible individuals, and the interviews continued until data saturation was reached. Interviews were conducted within the framework of ethical rules, and informed consent was obtained from the participants. The qualitative data obtained were systematically analyzed using thematic analysis. The research process and reporting were done per the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist. Data analysis revealed three main themes (Individual meaning of epilepsy and its impact on life, Social life and experiences of discrimination, and Mental and social difficulties and coping processes) and eight sub-themes (Perception of the disease, Physical and mental reflections, Change in identity and self-perception, Social support and acceptance, Discrimination and stigmatization, Psychological difficulties, Difficulties in education and/or work life, and Coping strategies). This study revealed that individuals diagnosed with epilepsy face multifaceted psychosocial challenges not only in physical but also in emotional, social, and economic domains. Experiences such as stigmatization, social exclusion, uncertainty, and loss of self-confidence negatively affect quality of life. These findings emphasize the importance of holistic and inclusive approaches that are sensitive to medical and psychosocial factors.