Lived experiences of young people with epilepsy in a resource-constraint setting: Contemporary findings from Cape Coast, Ghana

Epilepsy is a chronic neurological condition that affects millions of young people globally, often leading to physical, cognitive, psychological, and social challenges. In resource-constraint settings, access to healthcare and medications, stigma, and psychosocial burdens can further exacerbate the impact of the condition. This study explored the lived experiences of young people with epilepsy (YPWE) who attend the Cape Coast Teaching Hospital, Ghana, focusing on emotional reactions to diagnosis, access to healthcare, coping strategies, support systems, and future aspirations. A qualitative study approach was employed. Twenty young people aged 12–25 years participated in in-depth, semi-structured interviews. Thematic data analysis was conducted using Braun and Clarke's six-step method to identify patterns and themes from the participants' narratives. Six themes emerged: (1) diagnosis and emotional reactions, where participants expressed shock, fear, sadness, and initial anxiety following diagnosis; (2) access to medications and healthcare services, highlighting challenges such as medication availability, affordability, long queues, and financial constraints; (3) psychosocial impact, encompassing disruption to education, social activities, work, and occasional feelings of low self-esteem; (4) coping strategies, including lifestyle modifications, faith-based practices, and engaging in recreational activities; (5) support systems like reliance on friends and family during aura, and (6) future aspirations illustrating the participants' hopes for education and career advancement. Impliedly, YPWE in resource-constrained settings face multifaceted challenges. Adaptive coping strategies, supportive relationships and faith-based resilience ameliorate these challenges. Interventions should focus on improving access to medications and healthcare services, reducing stigma, strengthening psychosocial support, and empowering young people to achieve their aspirations.