Patients' perception of epilepsy and threat to self-identity: A qualitative approach

•The main theme from the categories was “the loss of identity”•The three main categories identified were: a different glance at epilepsy, self-debasement, and being a burden

IntroductionA clinical diagnosis of epilepsy often carries a silent social stigma and is associated with metaphysical forces. This qualitative study aimed to explore the Iranian patients' perception of epilepsy where clinical aspects are more benign than the social implications with long-term psychological consequences. Historically, epilepsy has been known as a form of insanity, madness, sorcery, and possession by evil spirits.MethodThirty participants consisting of 21 patients with epilepsy, 5 family members, and 4 medical staff were selected from urban and rural medical and health care centers, hospitals, physician offices, outpatient clinics, and the Iranian Epilepsy Association. Unstructured and semistructured interviews were applied to obtain data. Transcribed interviews and field notes were analyzed using qualitative content analysis method.FindingsCategories and subcategories emerged from the participants' perceptions of epilepsy and its disruptive effects on their self-identity. The main categories derived from data were 1) a different perspective about epilepsy, 2) self-debasement, and 3) being a burden. The major theme found in this study was “identity loss”.ConclusionOur study results highlight the importance of public awareness among community members and healthcare professionals on how patients with epilepsy experience their disease with psychosocial implications. Understanding patients' perspectives can be essential to developing a comprehensive and holistic care plan for patients with epilepsy and addressing their multidimensional needs.