Lived experiences of caregivers of persons with epilepsy attending an epilepsy clinic at a tertiary hospital, eastern Uganda: A phenomenological approach

Abstract

IntroductionEpilepsy has been found to affect caregivers’ quality of life, life style, psychological health, social well-being and their working time. Caregivers in Uganda as in the rest of the world are important in assisting a person with epilepsy in complying with medical directions and can be actively involved in communicating with health care professionals. Little is known about the lived experiences of caregivers of persons afflicted with epilepsy in Uganda. The purpose of the study was to determine the lived experiences of caregivers of persons with epilepsy attending the epilepsy clinic at Mbale regional referral hospital, eastern Uganda.Methods and materialsForty participants were selected for the study through purposive sampling. Face to face in-depth interviews with unstructured interview guide were conducted to gather participants’ information. The investigator conceptualized the interview guide, reviewed by co-investigators, and revised and approved as the final data collection instrument after an extensive and comprehensive literature review. The interview guide comprised of two sections, the first section comprised of the questions that elicited the participants’ social demographic information. The second section comprised questions that explored caregivers experiences of persons afflicted with epilepsy. Notations were taken and a digital recorder was used purposely for audio-recordings. All interviews lasted for an hour and were audio-recorded with the participants’ consent. An inductive thematic analysis was employed and adopted to identify the patterns emerging from the texts.ResultsThe caregivers majorly perceived epilepsy as a burden. Four main themes were revealed from the analysis and these are; psychological, social, economic, and physical burdens.ConclusionThe caregivers majorly perceived epilepsy as a serious burden. This burden can be psychological, social, economic, and physical. Therefore, services and plans targeting patients with epilepsy need to consider the burden that caregivers encounter to comprehensively manage epilepsy and its resultant burden.