The experiences of adolescents and young adults with epilepsy: A systematic review and meta-synthesis of qualitative studies.

ABSTRACT

BACKGROUND: Epilepsy is one of the most common and severe chronic neurological disorders and is associated with psychosocial problems. Several qualitative studies have investigated the experiences of adolescents and young adults with epilepsy. However, the findings were conflicting to some extent. This study examined and synthesized qualitative research data to understand the experiences of adolescents and young adults living with epilepsy, improving the development of targeted interventions and enhancing these experiences. OBJECTIVE: To synthesize qualitative evidence about the experiences of adolescents and young adults suffering from epilepsy. METHODS: This systematic review and qualitative evidence synthesis used the Joanna Briggs methodology for qualitative systematic reviews [1]. PubMed, PsychINFO, EMBASE, and Web of Science were searched for studies indexed until March 2022. Qualitative data were extracted, analyzed, and aggregated using meta-synthesis. RESULTS: Seventeen studies were included in the review. Three distinct themes were identified "impact of epilepsy," "emotions associated with epilepsy," and "self-management of epilepsy." The results show that adolescents and young adults with epilepsy develop different strategies to manage epilepsy and associated problems. CONCLUSION: The results improved our understanding of the experiences of adolescents and young adults suffering from epilepsy. Several approaches are encouraged to improve these experiences and the quality of life, including granting more autonomy to affected children, providing individualized care and advice, improving public awareness of epilepsy to avoid stigma, and strengthening legal frameworks to safeguard the rights of affected people.