Understanding the psychosocial impact and healthcare experiences of people living with epilepsy in the West Bank, Palestine.

backgroundEpilepsy has several effects on patients and their families, including experiences of fear, stigma, and discrimination. Insights into their well-being are lacking in several under resourced and politically constrained contexts, such as Palestine. This study aimed to explore the lived experiences of people with epilepsy, focusing on their personal, social, and healthcare-related challenges and coping mechanisms.

methodsA qualitative study employing a Husserlian phenomenological approach was conducted through semi structured in-depth interviews from February to April 2024 from primary healthcare clinics throughout the West Bank. The inclusion criteria consisted of adults aged 18 years and older who had been diagnosed with epilepsy for at least one year, who did not have cognitive impairment or significant medical conditions, who had been prescribed antiseizure medication therapy, and who were able to provide informed consent. Thematic analysis was utilized, focusing on phenomenological reduction and eidetic analysis to identify recurring patterns of experience.

resultsWe purposively interviewed twelve participants, aged 20–65 years, of both genders, residing across all districts of the West Bank. Three major themes emerged regarding the lived experiences of people with epilepsy: disruption of the emotional and social lifeworld; healthcare encounters as structures of meaning-making; and intentional coping and sources of support in the lived body. The participants’ narratives illustrate how epilepsy intersects with stigma, systemic inadequacies, and sociopolitical constraints, shaping their daily experiences and identities.

conclusionsThe perceptions and lived experiences of people with epilepsy affect the psychosocial well-being of people with epilepsy, such as stigma, loss of autonomy, and dependence on others and medication. Narratives emphasized the importance of accepting people with epilepsy from society, regaining control strategies, and cultivating resilience through supportive relationships. The lived experience of epilepsy in Palestine is shaped not only by seizures but also by deep psychosocial distress, societal exclusion, and inadequate healthcare support. Despite these challenges, participants demonstrated resilience through familial bonds, faith, and self-developed strategies. These findings call for context-sensitive interventions that integrate psychosocial care into epilepsy management and address structural barriers to equitable healthcare. Amplifying patient voices is essential for informing policy and enhancing support for marginalized populations living with neurological conditions in conflict-affected settings.