Volume 23 No 9 (2025)
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KNOWLEDGE, ATTITUDE AND PRACTICES ABOUT EPILEPSY IN PARENTS OF CHILDREN WITH EPILEPSY IN RURAL TERTIARY CARE HOSPITAL AND THEIR DISCLOSURE PRACTICES
Mohammed Nabeel Nayyar, Lalit Une, Dr Ayesha sayed
Abstract
Background: Epilepsy is a chronic neurological disorder with significant psychological and social implications for affected children and their families. Disclosure of a child's epilepsy status is a crucial aspect influencing social support and stigma but remains understudied in rural Indian settings. Aim: To assess the knowledge, attitude, and practices (KAP) regarding epilepsy among parents of children with epilepsy in a rural tertiary care hospital, and to explore their disclosure practices and associated factors. Methods: A descriptive, self-report survey was conducted on 262 parents of children aged below 18 years diagnosed with epilepsy as per the 2014 ILAE criteria. Data were collected using a semi-structured questionnaire assessing KAP, demographic variables, disclosure status, reasons for disclosure/non-disclosure, and its consequences. Statistical analyses included chi-square and Fisher’s exact tests. Results: 64.88% of parents disclosed their child’s epilepsy status to two or more target groups; 35.12% concealed it. Socioeconomic status, family type, and family history of epilepsy did not significantly affect disclosure rates. Disclosure was motivated by reduced parental anxiety, perceived lower social stigma, and increased help from schools and community. Non-disclosure was mainly due to fears of school exclusion, bullying, and embarrassment. Conclusion: Disclosure practices are improving among parents of children with epilepsy in rural India, leading to better social acceptance and reduced parental anxiety. Nonetheless, persistent stigma and misconceptions highlight the need for enhanced awareness and psychosocial interventions.
Keywords
Parental disclosure. Epilepsy stigma. Knowledge, attitude, and practices (KAP).
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