Lived experience of young people with epilepsy in Bahir Dar city government hospitals, Ethiopia, a qualitative interview study

Abstract

Background Epilepsy is the most common neurological disorder, which is characterized by persistent derangement of the nervous system due to an abrupt excessive discharge of the group of neurons from the cerebrum. For developing young people with epilepsy coping with the challenges of living with epilepsy and adjusting normative tasks associated with adolescence is stressful in all domains of the lives of young people with epilepsy. But in Ethiopia, published literature regarding the lived experience of young people with epilepsy is lacking. Objectives This study aims to explore lived experience of young people with epilepsy. Methods A qualitative interview study was conducted in Bahir Dar city government specialized and referral Hospitals, from February to April, 2021. Using the rule of saturation, a total of 11 study participants (age 12–24) were selected using hetrogenious types of purposive sampling technique. The data were collected through semi structured interviews technique with the aid of audio recorder. Semi-structured interview guide and observation checklist for care context in health facilities were used. The collected data was transcribed word by word and translated conceptually. The Data were analyzed using thematic approach. The credibility, dependability, Conformability and transferability of the study were assured using different techniques such as peer debriefing, member checking; audit Trail, thick description and purposeful sampling. Atlas- ti version7 software was used to facilitate data analysis. Results The participants’ narratives revealed two main themes: ‘experiences due epilepsy’ and ‘coping strategies to wards epilepsy’. Experience due to epilepsy’ was described by young people with epilepsy in terms of psychosocial, physical, economical and health care related experiences. They described coping strategies towards epilepsy in terms of finding support from family and society as well as religious institutions and other traditions as copping strategy. Conclusion Even though young people with epilepsy had suffered a lot of hurtful experiences, they reported coping strategies towards epilepsy that include support from various sources. These types of findings have implications for social work interventions for young people living with epilepsy.