Caring Through Challenges: A Narrative Exploration of Epilepsy Caregiving in Rural India - Abstract
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: (1) Navigating an
Epileptic Episode, (2) The Invisible Struggle of Cognitive Decline, (3) Misconceptions and Knowledge Gaps, (4) Fear-Driven Exclusion by Society, and (5) 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, 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 accessible healthcare services, counseling for caregivers, and advocacy for
disability rights to alleviate stigma and improve quality of life for persons with epilepsy and their families. This study calls for collaborative efforts from
healthcare professionals, educators, and policymakers to address epilepsy as a public health priority and foster an inclusive, informed society.