Journals / Ağrı Tıp Fakültesi Dergisi / 2026 / Cilt: 4 Sayı: 2

Evaluation of epilepsy-related knowledge levels and stigma perceptions among parents of children diagnosed with epilepsy: A descriptive study

Epilepsi tanılı çocuğu olan ebeveynlerin epilepsiye ilişkin bilgi düzeyleri ve damgalanma algılarının değerlendirilmesi: Tanımlayıcı bir çalışma

Dilek Şayık(LEFKE AVRUPA ÜNİVERSİTESİ)0000-0001-9614-0363
Sevgi Yimenicioğlu(Eskişehir Şehir Hastanesi)0000-0002-1598-4423
Ayfer Açıkgöz(ESKİŞEHİR OSMANGAZİ ÜNİVERSİTESİ)0000-0002-3803-9678
Deniz Yiğit(Kütahya Sağlık Bilimleri Üniversitesi)0000-0001-5627-7963
Pages
87–94
Publication Date
2026-06-30
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AI Summary & Key Takeaways

AI Insight
⚡ TL;DR(Too Long; Didn't Read)

Based on these findings, it is recommended that regular and structured educational programs be planned for children diagnosed with epilepsy and their parents, and that comprehensive support approaches addressing the physical, psychological, and social needs of the child and family be developed.

📌 3 Key Takeaways

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Objective & Hypothesis:Aim: Epilepsy is one of the chronic neurological diseases observed in childhood and significantly affects not only the child but also the knowledge levels and perceptions of social stigma among caregiving parents.
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Key Findings & Data:Materials and Methods: This descriptive and cross-sectional study was completed with 55 parents.
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Conclusion & Impact:Based on these findings, it is recommended that regular and structured educational programs be planned for children diagnosed with epilepsy and their parents, and that comprehensive support approaches addressing the physical, psychological, and social needs of the child and family be developed.
🔬Design:Araştırma Makalesi
📍Scope:Comprehensive Sample
⚙️Variables:Bilgi · Damgalama · Ebeveyn

Abstract

Aim: Epilepsy is one of the chronic neurological diseases observed in childhood and significantly affects not only the child but also the knowledge levels and perceptions of social stigma among caregiving parents. This study was conducted to determine the levels of epilepsy-related knowledge and stigma perceptions among parents of children diagnosed with epilepsy. Materials and Methods: This descriptive and cross-sectional study was completed with 55 parents. Data were collected through face-to-face interviews with parents of children attending a pediatric neurology outpatient clinic in a single center in Türkiye. The “Introductory Information Form,” “Parental Stigma Scale,” and “Parental Epilepsy Knowledge Scale” were used. Statistical significance was accepted as p<0.05. Results: The mean age of children diagnosed with epilepsy was 9.25±3.65 years and the mean time of diagnosis was 42.93±33.90 months. The mean score of the epilepsy knowledge was 11.87±2.49 and the mean score of the stigmatization was 2.57±0.93. As the mean score of the epilepsy knowledge increased, the mean score of the parental stigmatization decreased. A statistically significant negative relationship was found between these two scales (r=-0.274, p<0.05). Conclusion: Parents’ epilepsy-related knowledge levels and stigma perceptions were found to be moderate. As parents’ knowledge levels increased, their perceptions that their children would be stigmatized decreased significantly. Based on these findings, it is recommended that regular and structured educational programs be planned for children diagnosed with epilepsy and their parents, and that comprehensive support approaches addressing the physical, psychological, and social needs of the child and family be developed.

Özet

Amaç: Epilepsi, çocukluk çağında görülen kronik nörolojik hastalıklardan biri olup yalnızca çocuğu değil, bakım veren ebeveynlerin bilgi düzeylerini ve toplumsal damgalanma algılarını da önemli ölçüde etkilemektedir. Bu çalışma, epilepsi tanılı çocuğu olan ebeveynlerin epilepsiye yönelik bilgi düzeyleri ve damgalanma algılarının belirlenmesi amacıyla yapılmıştır. Gereçler ve Yöntemler: Tanımlayıcı ve kesitsel tipte olan araştırma, 55 ebeveyn ile tamamlanmıştır. Araştırma, Türkiye’de tek merkezde çocuk nöroloji polikliniğine gelen hastaların ebeveynleri ile yüz yüze görüşülerek yapılmıştır. Verilerin toplanmasında “Tanıtıcı Bilgi Formu”, “Ebeveyn Damgalanma Ölçeği” ve “Ebeveyn Epilepsi Bilgi Ölçeği” kullanılmıştır. p<0,05 istatistiksel olarak anlamlı kabul edilmiştir. Bulgular: Epilepsi tanısı alan çocukların yaş ortalamasının 9,25±3,65, tanı alma zamanlarının 42,93±33,90 ay olduğu belirlenmiştir. Ebeveynlerin Epilepsi Bilgi Ölçeği puan ortalamasının 11,87±2,49, Ebeveyn Damgalanma Ölçeği puan ortalamasının 2,57±0,93 olduğu tespit edilmiştir. Ebeveynlerin epilepsi bilgi ölçeği puan ortalaması arttıkça ebeveyn damgalama ölçeği puan ortalaması azalmıştır. Bu iki ölçek arasında negatif yönde istatistiksel olarak anlamlı bir ilişki bulunmuştur (r=-0.274, p<0,05). Sonuç: Çalışmada ebeveynlerin epilepsi bilgi düzeyleri ve epilepsili çocukları ile ilgili damgalanma algıları orta düzeydedir. Ebeveynlerin bilgi düzeyleri arttıkça, çocuklarının damgalanacağı ilişkin algıları anlamlı bir şekilde azalmaktadır. Önerimiz; epilepsi tanısı alan çocuklar ve ebeveynlerine yönelik düzenli ve yapılandırılmış eğitim programlarının planlanması; çocuk ve ailesinin fiziksel, psikolojik ve sosyal gereksinimlerini kapsayan bütüncül destek yaklaşımlarının geliştirilmesi önerilmektedir.

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Cite This Article

Şayık, D., Yimenicioğlu, S., Açıkgöz, A., Yiğit, D. (2026). Evaluation of epilepsy-related knowledge levels and stigma perceptions among parents of children diagnosed with epilepsy: A descriptive study. Ağrı Tıp Fakültesi Dergisi, Cilt: 4 Sayı: 2, 87–94. https://doi.org/10.61845/agrimedical.1798384

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References (36)

  1. Cross JH, Reilly C, Delicado EG, Smith ML, Malmgren K. Epilepsy surgery for children and adolescents: evidence-based but underused. Lancet Child Adolesc Health. 2022;6(7):484-494. https://doi.org/10.1016/S2352-4642(22)00098-0
  2. Fiest KM, Sauro KM, Wiebe S, et al. Prevalence and incidence of epilepsy: A systematic review and meta-analysis of international studies. Neurology. 2017;88(3):296-303. https://doi.org/10.1212/WNL.0000000000003509
  3. Rozensztrauch A, Kołtuniuk A. The quality of life of children with epilepsy and the impact of the disease on the family functioning. Int. J. Environ. Res. Public Health. 2022;19(4):2277. https://doi.org/10.3390/ijerph19042277
  4. Scheffer IE, Berkovic S, Capovilla G, et al. ILAE classification of the epilepsies: Position paper of the ILAE commission for classification and terminology. Epilepsia. 2017;58(4):512-521. https://doi.org/10.1111/epi.13709
  5. Minardi C, Minacapelli R, Valastro P, et al. Epilepsy in children: From diagnosis to treatment with focus on emergency. J. Clin. Med. 2019;8(1):39. https://doi.org/10.3390/jcm8010039
  6. Baskale H, Cetinkaya B, Ceylan SS, Oztas U. Satisfaction with life and cope of mothers with epileptic children. J Current Pediatr. 2019;17(2):265-278. https://doi.org/10.32941/pediatri.600332
  7. Gursoy FE, Basgul SS, Saltik S. Effects of epilepsy on family functions. Psychol Res. 2020;1(1):17-23. https://izlik.org/JA29SK67DJ
  8. Sayik D, Acikgoz A, Yimenicioglu S. A randomized controlled study: Evaluating the efficacy of a mobile application developed for mothers who have children with epilepsy in Turkiye. J Pediatr Nurs. 2023;70:103-110. https://doi.org/10.1016/j.pedn.2023.02.010
  9. Yorulmaz DS, Cinar S, Kanbay Y. Experiences and seizure burdens of children diagnosed with epilepsy and their families: a phenomenological research. Turkiye Klinikleri J Health Sci. 2021;6(4):734-744. https://doi.org/10.5336/healthsci.2020-80352
  10. Coban BG. Epilepsy and social stigma. J Vocational and Social Sci Turkey. 2023;5:(12):10-17. https://doi.org/10.46236/jovosst.1314528
  11. Ustuner Top F, Cam HH, Bora Gunes N. Perceptions of stigma of children with epilepsy and their parents and its effects on social life. Curr Psychol. 2024;43(1):62-71. https://doi.org/10.1007/s12144-023-04919-0
  12. Rani A, Thomas PT. Parental knoweldge, attitude, and perception about epilepsy and sociocultural barriers to treatment. J Epilepsy Res. 2019;9(1):65-75. https://doi.org/10.14581/jer.19007
  13. Rani A, Thomas PT. Stress and perceived stigma among parents of children with epilepsy. Neurol Sci. 2019;40:1363-1370. https://doi.org/10.1007/s10072-019-03822-6
  14. Fong CY, Seet YH, Ong LC, Lim WK, Lua PL. Improving awareness, knowledge, and attitude among Malaysian parents of children with epilepsy using an Interactive Animated Epilepsy Education Programme (IAEEP). Epilepsy Behav. 2019;94:52-58. https://doi.org/10.1016/j.yebeh.2019.02.008
  15. Turan Gurhopur FD, Isler Dalgic A. Evaluation of the effectiveness of the education program for the management of seizures out of hospital in children who have epilepsy: systematic review of the randomized control trials. J Turkish Epilepsy Society. 2020;26(2):94-102. https://doi.org/10.14744/epilepsi.2019.43043
  16. Turan FD, Yangoz ST. Effect of educational interventions on level of epilepsy knowledge in children with epilepsy and parents: Systematic review and meta‐analysis. J Clin Nurs. 2023;32(7-8):1381-1397. https://doi.org/10.1111/jocn.16346
  17. Austin JK, MacLeod J, Dunn DW, Shen J, Perkins SM. Measuring stigma in children with epilepsy and their parents: instrument development and testing. Epilepsy Behav. 2004;5(4):472-482. https://doi.org/10.1016/j.yebeh.2004.04.008
  18. Kose S, Celebioglu A. Validity and reliability of Turkish version of the scales of perceived stigma for children with epilepsy and their parents. Int J Nurs Sci. 2018;5(3):238-242. https://doi.org/10.1016/j.ijnss.2018.07.004
  19. Austin JK, McNelis AM, Shore CP, Dunn DW, Musick B. A feasibility study of a family seizure management program:‘Be Seizure Smart’. J Neurosci Nurs. 2002;34(1):30-37.
  20. Sevim A. Problem Solvıng Skills of The Families Who Have Child With Epilepsy. [Doctoral Dissertation]. Ankara, Turkiye: GATA Institute of Health Sciences; 2004.
  21. Celik H, Danis A. Evaluation of school absenteeism and affecting factors in child patients with epilepsy. J General Medic. 2022;32(4):459-463. https://doi.org/10.54005/geneltip.1138873
  22. Young Epilepsy. Guide for Schools: Epilepsy's Impact on Learning. 2023. Available from: https://www.youngepilepsy.org.uk/guide-schools-epilepsys-impact-learning. Accessed 2025 Mar 19.
  23. Makhado TG, Sepeng NV, Makhado L. A systematic review of the effectiveness of epilepsy education programs on knowledge, attitudes, and skills among primary school learners. Front Neurol. 2024;15:1356920. https://doi.org/10.3389/fneur.2024.1356920
  24. AlQaisi SA, Lami FH, Ali EM. Parental knowledge, attitudes, and practice toward their epileptic children, Baghdad, Iraq 2022. JFACMed Baghdad. 2023;65(4):341-347. https://doi.org/10.32007/jfacmedbagdad.2112
  25. Kinkar A, Alqarni D, Alghamdi A, et al. Parental knowledge, attitudes, and behaviors toward their epileptic children at King Abdulaziz University Hospital: Cross-sectional study. Interact J Med Res. 2020;9(1):e12697. https://doi.org/10.2196/12697
  26. Pellinen J, French J, Knupp KG. Diagnostic delay in epilepsy: The scope of the problem. Curr Neurol Neurosci Rep. 2021;21(71):1-6. https://doi.org/10.1007/s11910-021-01161-8
  27. Kava H, Akgun-Dogan O, Yesilyurt A, Alanay Y, Isik U, et al. Evaluation of the etiology of epilepsy and/or developmental delay in children via next-generation sequencing: a single-center experience. Front Pediatr. 2025;13:1471965. https://doi.org/10.3389/fped.2025.1471965
  28. Yu Z, Shao Q, Hou, K, Wang Y, Sun X, et al. The experiences of caregivers of children with epilepsy: a meta-synthesis of qualitative research studies. Front Psychiatr. 2022;13:987892. https://doi.org/10.3389/fpsyt.2022.987892
  29. Wei W, Dong L, Ye J, Xiao Z. Current status and influencing factors of family resilience in families of children with epilepsy: A cross-sectional study. Front Psychiatr. 2024;15:1354380. https://doi.org/10.3389/fpsyt.2024.1354380
  30. Curacall. Caregiving in 2025: innovations, challenges, and opportunities for the future. 2025. Available from: https://www.curacall.com/post/caregiving-in-2025-innovations-challenges-and-opportunities-for-the-future. Accessed 2025 Mar 15.
  31. Bulduk M, Can V. Stigma perception and health fatalism in parents of children with epilepsy: A cross-sectional study. Heliyon. 2024;10:15. https://doi.org/10.1016/j.heliyon.2024.e35525
  32. Brabcová D, Kohout J, Weberová V, Komárek V. Educational video and story as effective interventions reducing epilepsy-related stigma among children. Epilepsy Behav. 2017;69:12-17. https://doi.org/10.1016/j.yebeh.2017.01.019
  33. Pryor JB, Arjan ER (eds). Social psychological perspectives on stigma, Advances in Theory and research. First published. London: Routledge; 2014.
  34. Blixen C, Ogede D, Briggs F, et al. Correlates of stigma in people with epilepsy. J Clin Neurol. 2020;16(3):423-432. https://doi.org/10.3988/jcn.2020.16.3.423
  35. Jeschke S, Woltermann S, Neininger MP, et al. Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?. Eur J Pediatr. 2020;179:1627-1633. https://doi.org/10.1007/s00431-020-03661-0
  36. Aydin S, Oz Tuncer G, Genc S, Kurt Bayir G, Aksoy A. Stigma, seizure self-efficacy, and quality of life in children with epilepsy. Child Nerv Syst. 2024;40(11):3721-3728. https://doi.org/10.1007/s00381-024-06590-7