Caregivers’ Experiences in Caring for Persons With Epilepsy, Gulu Regional Referral Hospital, Uganda
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Date
2026
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Gulu University
Abstract
Introduction: Epilepsy is a chronic neurological condition that places a substantial burden on both affected individuals and their caregivers in Gulu City. Caregivers often face emotional, social, and economic challenges, yet they adopt various coping strategies to sustain the caregiving role. Objective: This study examined the experiences and coping strategies of caregivers of persons with epilepsy at Gulu Regional Referral Hospital in Northern Uganda. Methods: A qualitative phenomenological design was employed. Purposive sampling was used to select caregivers attending the hospital’s epilepsy clinic. Data were collected through
in-depth interviews and Focus Group discussion and analysed thematically. Results: Caregivers narrated stigma from the community, emotional distress, financial strain, and physical exhaustion as main experiences. Coping strategies included strict adherence to medication schedules, seizure diaries, environmental safety modifications, regular clinical follow-up, reliance on religious faith, participation in spiritual communities, positive reframing, family task-sharing, peer support groups, and community health worker engagement, adjusting work schedules, sharing income responsibilities, and seeking assistance from charitable organizations. Conclusion: Caregivers of persons with epilepsy employ diverse coping strategies to address the many demands of care. The study recommends that health system and relevant stakeholders strengthen caregiver education, enhancing psychosocial support, promoting economic empowerment, and reducing stigma through community sensitization are essential for improving caregiver well-being and epilepsy care outcomes
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Keywords
Epilepsy, caregivers, coping strategies, experiences, Gulu Regional Referral Hospital, Uganda.