Caregiving Experiences and Challenges Among Caregivers of Children with Epilepsy in Thailand: A Qualitative Study

Abstract

Background Childhood epilepsy requires long-term management and places substantial responsibilities on care- givers. In Thailand, limited public awareness and persistent stigma surrounding epilepsy may intensify caregivers’ psychosocial and practical burdens. This study aimed to explore the lived experiences of caregivers of children with epilepsy in Thailand. Methods: A qualitative study using two semi-structured focus group discussions (FGDs; 5 participants per group) and 15 in-depth interviews (IDIs) was conducted with primary caregivers of children with epilepsy receiving care at a neurological referral institute in Thailand. Participants were purposively selected to capture a diverse range of care- giving experiences. Data were audio-recorded, transcribed verbatim, and analyzed using thematic analysis to identify recurring patterns and key themes related to caregiving experiences and challenges. Results: Caregivers described complex caregiving demands encompassing medical management, emotional strain, social stigma, and financial burden. Major themes included persistent anxiety related to seizure unpredictability, inadequate knowledge and confidence in epilepsy management, experiences of stigma in school and community set- tings, and reliance on adaptive coping strategies and informal support networks. Despite these challenges, caregivers demonstrated resilience and commitment to their caregiving role. Conclusion: Caring for children with epilepsy in Thailand involves multifaceted challenges that extend beyond clinical care. The findings underscore the importance of family-centered healthcare approaches, comprehensive care- giver education, school-based initiatives aimed at reducing stigma, and accessible health information resources. Addressing these needs may improve caregiver well-being and contribute to better health and quality-of-life outcomes for children with epilepsy.