ArticleEpilepsy & behavior reports2026
Lived experiences that influence the quality of life among patients with epilepsy at Mulago National Referral Hospital.
Article in Epilepsy & behavior reports, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: In Uganda, the quality of life (QoL) of patients with epilepsy (PWE) remains poor due to clinical, psychological, and social challenges. While several quantitative studies have documented correlates of poor QoL in Ugandan PWE, the specific mechanisms, contextual meanings, and patient-defined priorities through which epilepsy affects daily life remain poorly understood. This study aimed to explore the lived experiences that influence QoL among PWE at Mulago National Referral Hospital (MNRH) in Uganda. Methods: We conducted a qualitative study among 12 purposefully selected adult PWE at MNRH. We collected data using in-depth interview guides and analysed the data using inductive thematic analysis with ATLAS.ti software. We used purposive sampling guided by gender and duration of epilepsy care to ensure depth and breadth of perspectives. Data collection continued until thematic saturation was achieved. Results: Three major themes captured the lived experiences that influence QoL. 1)Psychosocial experiences encompassed social support from friends and religious communities, family relationships that functioned as sources of both support and strain, stigma and discrimination, and psychological, cognitive, and coping processes. 2) Economic and daily living challenges encompassed financial barriers to treatment, employment disruption alongside economic adaptation, and seizure-related physical injury. 3) Healthcare and treatment experiences encompassed access to free antiepileptic drugs (AEDs) and diagnostic services, provider-led counselling and health education, and medication-related effects. Conclusion: Healthcare services should prioritise a shift to holistic, patient-centred care that integrates psychosocial well-being, economic circumstances, and lived treatment experiences into routine epilepsy management.
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