Experiences of adolescents living with epilepsy in South Africa

Abstract

Several studies have highlighted the perspectives and insights of healthcare workers and caregivers involved in ensuring the well-being of adolescents with epilepsy. Research from the perspective of the adolescent living with epilepsy is, however, lacking, especially in the South African context. This qualitative study therefore aimed at exploring and understanding the experiences of adolescents living with epilepsy in South Africa, within an interpretative phenomenological framework. Semi-structured interviews were conducted online via Zoom with three adolescents diagnosed and living with epilepsy. The data was analysed using Interpretative Phenomenological Analysis (IPA) which allowed for the emergence of prominent themes and subordinate themes. The four main themes that emerged were: mental health challenges; cognitive challenges; treatment, support, and coping; and emotional insights. The findings of the study indicated that the participants experienced cognitive challenges such as memory problems which impaired their daily functioning and had an influence on academic performance. The findings further revealed that the participants experienced psychological challenges, such as anxiety, depression, and epilepsy-related fears. The experiences of these adolescents revealed similarities and unique differences in the many facets of their lives, from access to medical treatment, social and cognitive challenges, emotional and personal development, and support systems and how living with epilepsy shaped these experiences. These lived experiences in turn influenced the emotions, insights, and ambitions of these adolescents. The findings of this study provide insight into identifying and understanding the needs, the challenges, and the world view of these young people living with epilepsy in South Africa. The findings further highlight that cultural context, background, and personal factors may shape the experiences of these young people living with epilepsy; thus, a recommendation for future research in diverse cultural contexts is made by the researcher.