The lived experiences of caregivers of people with epilepsy in Botswana

Vollständiger Abstract

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Background: Epilepsy is a common neurological disorder affecting about 50 million people worldwide. Caregivers of people with epilepsy face significant emotional, physical and psychological distress due to the demands of caregiving. Limited resources, stigma and the lack of a proper support system often worsen these challenges. Aim: This study aimed to explore the lived experiences of caregivers of individuals with epilepsy in Botswana. Setting: This study was conducted in Gaborone, the capital city of Botswana, located in Botswana’s South-East District. Methods: An interpretive phenomenological approach was used to capture the lived experiences of 13 caregivers, recruited through purposive sampling. In-depth interviews were conducted to gather qualitative data, which were analysed using the General Inductive Approach. Results: Caregivers reported significant emotional distress, including anxiety, stress and social isolation due to the unpredictable nature of seizures. Financial difficulties were dominant concern, with many caregivers losing employment status due to caregiving responsibility. High cost of medication and access to healthcare services was another burden while stigma surrounding epilepsy further exacerbated emotional strain. Additionally, caregivers reported limited coping strategies, which further contributed to their psychological distress. Conclusion: The study highlights the urgent need for culturally sensitive interventions to address the psychological and economic burden faced by caregivers. Strengthening support system, ensuring reliable access to medication and providing financial aid could significantly improve caregivers’ well-being and by extension, the quality of life for individuals living with epilepsy in Botswana. Contribution: This study offers important insights into caregiver experiences in epilepsy, emphasising the need for family inclusive, caregiver centred nursing practices, educational enhancement and improved community policies in Botswana. It highlights the importance of structured psychosocial support, integrating epilepsy care into home services, and culturally relevant coping strategies. These findings aim to guide targeted interventions and create more responsive health systems in similar resource-limited settings.