PARENTAL MANAGEMENT OF PEDIATRIC EPILEPSY: A QUALITATIVE STUDY

Abstract

Introduction: Pediatric epilepsy is a long-term neurological disorder that impacts the whole family, particularly the parents, who play a key role in providing care. Research on parents' experiences with managing childhood epilepsy is lacking in Kazakhstan, especially when it comes to qualitative studies. This study's primary goal is to investigate and comprehend how parents deal with childhood epilepsy, with an emphasis on their experiences, difficulties, and coping mechanisms. Methods: Twelve parents of children with epilepsy receiving treatment in the neurology department at the University Medical Center's Mother and Child Center in Astana, Kazakhstan, participated in semi-structured interviews as part of this study's qualitative methodology. Purposive sampling was used to choose the respondents. Hospital-based interviews were audio recorded and verbatim transcribed. The data was analyzed using thematic analysis to find themes and recurrent themes. Results: There were six essential themes : (1) psychological and mental effects on families, such as ongoing stress, anxiety, and relapse fear; (2) challenges in accessing medical care and medication, such as shortage of medication/ diagnostic procedures and inadequate rehabilitation services; (3) effects on child development, including worries about cognitive and motor delays, speech issues, and learning challenges; (4) financial burden as parents had to pay high prices for therapy and medication; (5) long-term worries and uncertainties regarding the child's future independence, social adaptation, and job opportunities; (6) parents also made explicit recommendations for improving care including enhancing access to medications, expediting the diagnosing process, increasing the availability of rehabilitation treatments. Discussion: The results demonstrate how difficult it is for parents in Kazakhstan to raise children with epilepsy. Financial limitations, inconsistent health care, and issues with the health system all contribute to the substantial emotional loads that people bear. The study emphasizes how crucial it is to treat epilepsy with a holistic, family-centered strategy that considers families' psychological, social, and financial needs in addition to their medical ones. Conclusion: This study offers a thorough examination of parental experiences, adding to the limited information on pediatric epilepsy in Kazakhstan. In addition to providing helpful advice for clinicians, educators, and policymakers, it expands the regional database. Children with epilepsy and their caregivers can have better lives if the issues are addressed through better medical care, inclusive education, and family support. It is suggested that more extensive and varied sample sizes be used in future studies in order to create national plans and advance fair, family-centered epilepsy care.