Living with epilepsy in adolescence-A qualitative study of young people's experiences in Singapore:Peer socialization, autonomy, and self-esteem

Background: Systematic reviews of quantitative research on the effects of childhood epilepsy have established its association with higher levels of psychiatric diagnosis, externalizing and internalizing problems, lower health-related quality of life, social competence and poorer academic achievements, compared to their peers. However, much less is known about young people’s experiences of living with epilepsy and its impact on their development from their own perspectives. Methods: Semi-structured interviews were conducted with 15 young people aged between 13 and 16 years. Participants were recruited as part of larger mixed-methods study examining individual and family influences on outcomes for young people with epilepsy. These young people attended an epilepsy clinic in KK Women’s and Children’s Hospital, Singapore. The Framework approach to data management and analyses involved both inductive and deductive generation of themes. Results: Findings from young people’s interviews provided in-depth descriptions of stressful circumstances encountered. Interconnectedness between severity of the impairment and its impact on key developmental tasks, such as independence, autonomy, and social development, were emphasized. Seizures and illness-related demands disrupted their day-to-day functioning and challenged their abilities to meet these tasks. Young people’s experiences of social exclusion resulted from these impairment effects and both social and environmental factors that act as systemic barriers to participation. In turn, this has an effect on their self-esteem. Nevertheless, young people reported positive experiences, such as support from both family and friends, which served as protective factors against the stress of living with a chronic medical condition. Conclusion: The demands of epilepsy affect various domains of young people’s lives. In order to obtain a holistic understanding of young people’s inclusion or exclusion to participation, it is necessary to consider ‘impairment effects’, ‘barriers to doing’ ...