Factors associated with perceived stigma among adolescents with epilepsy attending a tertiary care hospital

Authors

  • Saira Khan Department of Paediatrics, MH Samorita Hospital and Medical College, Dhaka, Bangladesh
  • Husnea A. Khan Department of Paediatric Neurology, National Institute of Neurosciences and Hospital, Dhaka, Bangladesh
  • Jobaida Parvin Department of Paediatric Neurology, National Institute of Neurosciences and Hospital, Dhaka, Bangladesh
  • Mosammat S. A. Begum Department of Paediatric Neurology, National Institute of Neurosciences and Hospital, Dhaka, Bangladesh
  • Bithi Debnath Department of Paediatric Neurology, National Institute of Neurosciences and Hospital, Dhaka, Bangladesh
  • Nazmul Haque Department of Paediatric Neurology, National Institute of Neurosciences and Hospital, Dhaka, Bangladesh
  • Kamrun N. Nasrin Department of Paediatrics, Child Development Institute (CDI), Naumahal, Mymensingh, Bangladesh
  • Sanjana Sanom Department of Paediatric Neurology, National Institute of Neurosciences and Hospital, Dhaka, Bangladesh

DOI:

https://doi.org/10.18203/2349-3291.ijcp20260815

Keywords:

Epilepsy, Adolescents, Perceived stigma, Kilifi stigma scale, Seizure frequency

Abstract

Background: Epilepsy is a chronic neurological disorder associated with substantial psychosocial burden and stigma, particularly among adolescents. Understanding the factors contributing to perceived stigma is essential to improve their quality of life. This study aimed to assess the level of perceived stigma and identify associated factors among adolescents with epilepsy.

Methods: This cross-sectional study was conducted in the Departments of Paediatric Neurology and Neurology at the National Institute of Neurosciences and Hospital, Dhaka, Bangladesh from January 2024 to December 2024. The study population comprised 206 adolescent patients aged 10 to 19 years diagnosed with epilepsy for more than one year and attended the outpatient departments during the study period.

Results: The mean age of participants was 14.9±2.6 years, with 64.1% males (male-to-female ratio 1.8:1). Generalized seizures were most common (40.8%). The mean KSSE score was 8.9±4.9, with 33% experiencing high perceived stigma. Commonly reported experiences included feeling treated as outcasts (89.8%), mistreatment (78.2%), and discrimination (71.4%). Factors significantly associated with high stigma included female gender (OR=3.73), family history of epilepsy (OR=3.09), and higher seizure frequency in the last three months (OR=1.14). Disclosure of epilepsy reduced the likelihood of high stigma (OR=0.46).

Conclusions: One-third of adolescents with epilepsy experienced high perceived stigma, which was significantly associated with gender, family history, seizure frequency, and disclosure status. Targeted interventions addressing stigma and promoting disclosure may improve psychosocial outcomes in this population.

 

References

Fisher RS, Acevedo C, Arzimanoglou A, Bogacz A, Cross JH, Elger CE, et al. ILAE official report: a practical clinical definition of epilepsy. Epilepsia. 2014;55(4):475-82.

Leonardi M, Ustun TB. The global burden of epilepsy. Epilepsia. 2002;43(6):21-5.

Noronha AL, Borges MA, Marques LH, Zanetta DM, Fernandes PT, De Boer H, et al. Prevalence and pattern of epilepsy treatment in different socioeconomic classes in Brazil. Epilepsia. 2007;48(5):880-5.

Sander JW. The epidemiology of epilepsy revisited. Curr Opin Neurol. 2003;16(2):165-70.

Shakirullah AN, Khan A, Nabi M. The prevalence, incidence and etiology of epilepsy. Int J Clin Exp Neurol. 2014;2(2):29-39.

Mohammad QD, Saha NC, Alam MB, Hoque SA, Islam A, Chowdhury RN, et al. Prevalence of epilepsy in Bangladesh: Results from a national household survey. Epilepsia Open. 2020;5(4):526-36.

De Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy Behav. 2008;12(4):540-6.

Reis R, Meinardi H. ILAE/WHO “Out of the Shadows Campaign” Stigma: does the flag identify the cargo? Epilepsy Behav. 2002;3(6):33-7.

Elliott GC, Ziegler HL, Altman BM, Scott DR. Understanding stigma: Dimensions of deviance and coping. Deviant Behav. 1982;3(3):275-300.

Aydemir N, Özkara Ç, Ünsal P, Canbeyli R. A comparative study of health-related quality of life, psychological well-being, impact of illness and stigma in epilepsy and migraine. Seizure. 2011;20(9):679-85.

Aguiar BVK, Guerreiro MM, McBrian D, Montenegro MA. Seizure impact on school attendance in children with epilepsy. Seizure. 2007;16(8):698-702.

Kirabira J, Forry JB, Kinengyere AA, Adriko W, Amir A, Rukundo GZ, et al. A systematic review protocol of stigma among children and adolescents with epilepsy. Syst Rev. 2019;8:1-5.

Mbuba CK, Abubakar A, Odermatt P, Newton CR, Carter JA. Development and validation of the Kilifi Stigma Scale for Epilepsy in Kenya. Epilepsy Behav. 2012;24(1):81-5.

Bielen I, Friedrich L, Sruk A, Prvan MP, Hajnšek S, Petelin Ž, et al. Factors associated with perceived stigma of epilepsy in Croatia: A study using the revised Epilepsy Stigma Scale. Seizure. 2014;23(2):117-21.

Ryu HU, Lee SA, Eom S, Kim HD. Perceived stigma in Korean adolescents with epilepsy: Effects of knowledge about epilepsy and maternal perception of stigma. Seizure. 2015;24:38-43.

Yeni K, Tulek Z, Bebek N. Factors associated with perceived stigma among patients with epilepsy in Turkey. Epilepsy Behav. 2016;60:142-8.

Shibre T, Alem A, Tekle-Haimanot R, Medhin G. Perception of stigma in people with epilepsy and their relatives in Butajira, Ethiopia. Ethiop J Health Dev. 2006;20(3):1-8.

Kathomi Mbuba C. Epilepsy treatment gap, associated risk factors and intervention strategies in Kilifi, Kenya. University of Basel. 2011.

Kirabira J, Forry BJ, Fallen R, Sserwanga B, Rukundo GZ. Perceived stigma and school attendance among children and adolescents with epilepsy in South Western Uganda. Afr Health Sci. 2020;20(1):376-82.

Biset G, Abebaw N, Gebeyehu NA, Estifanos N, Birrie E, Tegegne KD. Prevalence, incidence, and trends of epilepsy among children and adolescents in Africa: a systematic review and meta-analysis. BMC Public Health. 2024;24(1):1-14.

Rani A, Thomas PT. Parental knowledge, attitude, and perception about epilepsy and sociocultural barriers to treatment. J Epilepsy Res. 2019;9(1):65-75.

Kirabira J, Nakawuki M, Fallen R, Rukundo GZ. Perceived stigma and associated factors among children and adolescents with epilepsy in South Western Uganda: A cross-sectional study. Seizure. 2018;57:50-5.

Reddy DS. The neuroendocrine basis of sex differences in epilepsy. Pharmacol Biochem Behav. 2017;152:97-104.

Beghi E. The epidemiology of epilepsy. Neuroepidemiology. 2020;54(2):185-91.

Baker GA, Brooks J, Buck D, Jacoby A. The stigma of epilepsy: A European perspective. Epilepsia. 2000;41(1):98-104.

Bulduk M, Can V. Stigma perception and health fatalism in parents of children with epilepsy: A cross-sectional study. Heliyon. 2024;10(15):1-10.

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Published

2026-03-25

How to Cite

Khan, S., Khan, H. A., Parvin, J., Begum, M. S. A., Debnath, B., Haque, N., Nasrin, K. N., & Sanom, S. (2026). Factors associated with perceived stigma among adolescents with epilepsy attending a tertiary care hospital. International Journal of Contemporary Pediatrics, 13(4), 553–559. https://doi.org/10.18203/2349-3291.ijcp20260815

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Original Research Articles