Experience and perceptions of mental ill-health in people with epilepsy in rural Ethiopia: a qualitative study

Abstract

<title>Abstract</title> <bold>Introduction </bold>The high comorbidity of mental health conditions in people with epilepsy (PWE) is associated with poor quality of life and disability. Understanding the lived experience of mental health and illness in people with epilepsy has been little investigated in Africa and yet is essential to inform person-centred care. The aim of this study was to explore the experiences of mental ill-health in the contexts of the lives of PWE in rural Ethiopia. <bold>Methods</bold> A phenomenological approach was employed, using in-depth individual interviews with PWE. Participants were selected purposely based on their mental distress score measured using a culturally validated scale (the Self-Reporting Questionnaire), their gender, and place of residence. The setting was the Gurage Zone in south-central Ethiopia where efforts had been made to expand access to mental health and epilepsy care through integration in primary health care in the Programme for Improving Mental Health carE (PRIME). Thematic analysis was used, supported by Open Code software. <bold>Findings </bold>Twenty-two PWE were interviewed (8 women, 14 men). The following themes were identified: expression of ill-health; the essence of emotions; the emotional burden of epilepsy and aspirations and mitigating impacts. Participants reported multiple bodily (e.g. fatigue) and emotional (e.g. irritability, sadness) experiences which were tied up with their experience of epilepsy and not separable into physical vs. mental health. Occupation and social life difficulties were interconnected with emotional and bodily sickness. Emotions were considered inherently concerning, with emotional imbalance spoken of as a cause or trigger for seizures. These emotional burdens resulted in difficulties fulfilling occupational and social life obligations, in turn exacerbating the epilepsy-related stigma experienced from others. Participants sought to mitigate these inter-connected psychosocial impacts through finding spiritual meaning in, or acceptance of, their experiences, drawing on family care and, for some, emotional support from health professionals <bold>Conclusions </bold>People living with epilepsy in this rural Ethiopian setting experience various emotional, financial, occupational and interpersonal problems which are crucially interwoven with one another and with the experience of epilepsy. A people-centred approach to supporting recovery of PWE requires consideration of mental health alongside physical health, as well as interventions outside the health system to address poverty and stigma.