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

Introduction: 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-centered care. The aim of this study was to explore the experiences mental ill-health in the contexts of the lives of people with epilepsy in rural Ethiopia. Methods: A phenomenological approach was employed using in-depth individual interviews with PWE. Participants were selected purposely. The setting was 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. Thematic analysis was used. Result: Twenty-two participant 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 that 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 by others. Participants sought to mitigate these interconnected psychosocial impacts through finding spiritual meaning in, or acceptance of, their experiences, drawing on family care and, for some, emotional support from health professionals. Conclusions: People living with epilepsy in this rural Ethiopian setting experience various emotional, financial, occupational and interpersonal problems that are crucially interwoven with one another and with the experience of epilepsy. A people-centered approach to support the recovery of people with epilepsy requires consideration of mental health alongside physical health, as well as interventions outside the health system to address poverty and stigma.