Between seizures and support: A narrative exploration of lived experiences of epilepsy and caregiving in rural India

Epilepsy is disproportionately prevalent in low- and middle-income countries such as India. Rural areas in India face unique challenges, including limited access to healthcare, stigma, and cultural misconceptions. This narrative study explores the lived experiences of a 17-year-old female with epilepsy (Y) and her primary caregiver, her brother, in rural India. Using in-depth interviews and thematic analysis, the study uncovers five primary themes: (i) navigating an epileptic episode, (ii) the invisible struggle of cognitive decline, (iii) misconceptions and knowledge gaps, (iv) fear-driven exclusion by society, and (v) the balancing act of emotional resilience and practical stress in epilepsy caregiving. The findings reveal that epilepsy’s impact extends beyond medical symptoms, significantly influencing cognitive functioning, emotional well-being, and social dynamics. The study highlights the pervasive stigma and discrimination faced by individuals with epilepsy and their families, often fueled by misinformation and cultural beliefs. Caregivers, while resilient, endure emotional and practical burdens, balancing caregiving duties with personal aspirations. The research underscores the urgent need for culturally sensitive education campaigns to dispel myths, strengthen community support, and enhance awareness about epilepsy as a medical condition. Interventions should include counseling for caregivers and advocacy for disability rights to alleviate the burden and improve the quality of life for individuals with epilepsy and their families. This study calls for collaborative efforts from healthcare professionals, allied health professionals, educators, and policymakers to address epilepsy as a public health priority and foster an inclusive, informed society.