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

Abstract

Introduction Epilepsy has been found to affect caregivers’ quality of life, lifestyle, psychological health, social well-being, and 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 are actively involved in communicating with healthcare professionals. Little is known about the lived experiences of caregivers of persons afflicted with epilepsy in Uganda. The purpose of this 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 materials The caregivers’ lived experiences were elicited directly from them and their health workers who work with them in the care of the patients. Forty participants which consisted of 30 caregivers and 10 key informant health workers were selected for the study through purposive sampling. Face-to-face in-depth interviews with an unstructured interview guide were conducted to gather participants’ information. The principal investigator conceptualized the interview guide, the guide was then 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 two sections; the first section comprised 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 participant’s consent. An inductive thematic analysis was employed and adopted to identify the patterns emerging from the texts. Results The caregivers majorly perceived epilepsy as a burden. Four main themes were revealed from the analysis and these are: psychological burdens which included, worries about the future of the patient, being looked down upon; social burdens which entailed, affected public relations, feelings of stigma; an economic burden which included interference with the source of income, affected productivity at work; and physical burdens which included, Feelings of uneasiness and disrupted sleep among others. Conclusion The 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.

Impact of Care Gaps in Epileptic Patients in India—A Review

“…Familial responses to epilepsy often encompass a spectrum of emotional states including avoidance, culpability, apprehension, despondency, angst, perplexity, and desolation. [43] These emotional responses can precipitate significant psychosocial ramifications such as diminished self-assurance, withdrawal from social interactions, strained familial bonds, and, in severe instances, contemplation of self-inflicted harm. Additionally, the adverse effects of pharmacotherapy may exacerbate the overall detriment to the quality of life.…”

A Comprehensive Review of Emerging Trends and Innovative Therapies in Epilepsy Management

“…Drug-resistant epilepsy represents a major clinical hurdle in epilepsy management [ 16 ]. Patients who are refractory to traditional ASMs face recurrent seizures that can severely impact their daily lives, disrupt social interactions, and limit educational and employment opportunities [ 17 , 18 , 19 ]. The unpredictable nature of seizures can lead to anxiety, depression, and a reduced overall quality of life.…”