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REVIEW

Self-Disclosure Patterns Among Children and Youth with Epilepsy: Impact of Perceived-Stigma

ORCID Icon, &
Pages 27-43 | Received 07 Oct 2022, Accepted 19 Jan 2023, Published online: 05 Feb 2023

References

  • Olusanya BO, Wright SM, Nair MKC, et al. Global burden of childhood epilepsy, intellectual disability, and sensory impairments. Pediatrics. 2020;146(1):e20192623. doi:10.1542/peds.2019-2623
  • Aaberg KM, Bakken IJ, Lossius MI, et al. Comorbidity and childhood epilepsy: a nationwide registry study. Pediatrics. 2016;138(3). doi:10.1542/peds.2016-0921
  • Dunn DW, Johnson CS, Perkins SM, et al. Academic problems in children with seizures: relationships with neuropsychological functioning and family variables during the 3 years after onset. Epilepsy Behav. 2010;19(3):455–461. doi:10.1016/j.yebeh.2010.08.023
  • Clary LE, Vander Wal JS, Titus JB. Examining health-related quality of life, adaptive skills, and psychological functioning in children and adolescents with epilepsy presenting for a neuropsychological evaluation. Epilepsy Behav. 2010;19(3):487–493. doi:10.1016/j.yebeh.2010.08.002
  • Reynolds EH. The ILAE/IBE/WHO epilepsy global campaign history. International League Against Epilepsy. International Bureau for Epilepsy. Epilepsia. 2002;43(Suppl 6):9–11. doi:10.1046/j.1528-1157.43.s.6.5.x
  • Goffman E. Stigma: Notes on the Management of Spoiled Identity. Simon and Schuster; 1963.
  • Scambler G, Hopkins A. Being epileptic: coming to terms with stigma. Sociol Health Illn. 1986;8(1):26–43. doi:10.1111/1467-9566.ep11346455
  • Weiss MG, Utzinger J. Stigma and the social burden of neglected tropical diseases. PLoS Negl Trop Dis. 2008;2(5):e237. doi:10.1371/journal.pntd.0000237
  • Fisher RS. Epilepsy from the patient’s perspective: review of results of a community-based survey. Epilepsy Behav. 2000;1(4):S9–S14. doi:10.1006/ebeh.2000.0107
  • Kwon CS, Jacoby A, Ali A, et al. Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy-report from the International League Against Epilepsy Task Force on Stigma in Epilepsy. Epilepsia. 2022;63(3):573–597. doi:10.1111/epi.17135
  • Patton GC, Sawyer SM, Santelli JS, et al. Our future: a Lancet commission on adolescent health and wellbeing. Lancet. 2016;387(10036):2423–2478. doi:10.1016/S0140-6736(16)00579-1
  • Somerville LH. Special issue on the teenage brain: sensitivity to social evaluation. Curr Dir Psychol Sci. 2013;22(2):121–127. doi:10.1177/0963721413476512
  • MacLeod JS, Austin JK. Stigma in the lives of adolescents with epilepsy: a review of the literature. Epilepsy Behav. 2003;4(2):112–117. doi:10.1016/s1525-5050(03)00007-6
  • Greene K. An integrated model of health disclosure decision-making. In: Uncertainty, Information Management, and Disclosure Decisions. Routledge; 2015:242–269.
  • Lambert V, Gallagher P, O’Toole S, Benson A. Stigmatising feelings and disclosure apprehension among children with epilepsy. Nurs Child Young People. 2014;26(6):22–26. doi:10.7748/ncyp.26.6.22.e440
  • Wilde M, Haslam C. Living with epilepsy: a qualitative study investigating the experiences of young people attending outpatients clinics in Leicester. Seizure. 1996;5(1):63–72. doi:10.1016/s1059-1311(96)80065-3
  • Eklund PG, Sivberg B. Adolescents’ lived experience of epilepsy. J Neurosci Nurs. 2003;35(1):40–49. doi:10.1097/01376517-200302000-00008
  • Lewis A, Parsons S. Understanding of epilepsy by children and young people with epilepsy. Eur J Spec Needs Educ. 2008;23(4):321–335. doi:10.1080/08856250802387273
  • Benson A, Lambert V, Gallagher P, Shahwan A, Austin JK. ”I don’t want them to look at me and think of my illness, I just want them to look at me and see me”: child perspectives on the challenges associated with disclosing an epilepsy diagnosis to others. Epilepsy Behav. 2015;53:83–91. doi:10.1016/j.yebeh.2015.09.026
  • Benson A, O’Toole S, Lambert V, Gallagher P, Shahwan A, Austin JK. The stigma experiences and perceptions of families living with epilepsy: implications for epilepsy-related communication within and external to the family unit. Patient Educ Couns. 2016;99(9):1473–1481. doi:10.1016/j.pec.2016.06.009
  • Benson A, Lambert V, Gallagher P, O’Toole S, Shahwan A, Austin JK. Development and psychometric evaluation of the youth and parent versions of the Epilepsy Disclosure Scale (EDS). Epilepsy Behav. 2018;82:111–118. doi:10.1016/j.yebeh.2018.02.015
  • Houston EC, Cunningham CC, Metcalfe E, Newton R. The information needs and understanding of 5–10-year old children with epilepsy, asthma or diabetes. Seizure. 2000;9(5):340–343. doi:10.1053/seiz.2000.0416
  • 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(10):1627–1633. doi:10.1007/s00431-020-03661-0
  • Moffat C, Dorris L, Connor L, Espie CA. The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy. Epilepsy Behav. 2009;14(1):179–189. doi:10.1016/j.yebeh.2008.09.025
  • Ronen GM, Rosenbaum P, Law M, Streiner DL. Health-related quality of life in childhood epilepsy: the results of children’s participation in identifying the components. Dev Med Child Neurol. 1999;41(8):554–559. doi:10.1017/S0012162299001176
  • Westbrook LE, Bauman LJ, Shinnar S. Applying stigma theory to epilepsy: a test of a conceptual model. J Pediatr Psychol. 1992;17(5):633–649. doi:10.1093/jpepsy/17.5.633
  • Sheridan K, Salmon N, O’Connell N. Experiences of university students disclosing epilepsy to peers: ‘It’s a shared thing now’. Br J Occup Ther. 2016;79(8):484–491. doi:10.1177/0308022616638672
  • Chew J, Carpenter J, Haase AM. Living with epilepsy in adolescence-a qualitative study of young people’s experiences in Singapore: peer socialization, autonomy, and self-esteem. Child Care Health Dev. 2019;45(2):241–250. doi:10.1111/cch.12648
  • Austin JK, Perkins SM, Dunn DW. A model for internalized stigma in children and adolescents with epilepsy. Epilepsy Behav. 2014;36:74–79. doi:10.1016/j.yebeh.2014.04.020
  • Heimlich TE, Westbrook LE, Austin JK, Cramer JA, Devinsky O. Brief report: adolescents’ attitudes toward epilepsy: further validation of the Child Attitude Toward Illness Scale (CATIS). J Pediatr Psychol. 2000;25(5):339–345. doi:10.1093/jpepsy/25.5.339
  • Austin JK, Huberty TJ. Development of the child attitude toward illness scale. J Pediatr Psychol. 1993;18(4):467–480. doi:10.1093/jpepsy/18.4.467
  • Jeschke S, Woltermann S, Neininger MP, et al. Interviews with patients aged 6–17 years provide valuable insights for physicians who need to deliver an epilepsy diagnosis. Acta Paediatr. 2021;110(5):1556–1561. doi:10.1111/apa.15672
  • World Health Assembly (75th session). Follow-up to the political declaration of the third high-level meeting of the General Assembly on the prevention and control of non-communicable diseases: draft intersectional global action plan on epilepsy and other neurological disorders 2022–2031. 2022.
  • 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. doi:10.1016/j.seizure.2014.11.010
  • Mendes TP, Crespo CA, Austin JK. Family cohesion, stigma, and quality of life in dyads of children with epilepsy and their parents. J Pediatr Psychol. 2017;42(6):689–699. doi:10.1093/jpepsy/jsw105
  • 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. doi:10.1016/j.yebeh.2004.04.008
  • Austin JK, Haber LC, Dunn DW, Shore CP, Johnson CS, Perkins SM. Children with new onset seizures: a prospective study of parent variables, child behavior problems, and seizure occurrence. Epilepsy Behav. 2015;53:73–77. doi:10.1016/j.yebeh.2015.09.019
  • Carlton-Ford S, Miller R, Nealeigh N, Sanchez N. The effects of perceived stigma and psychological over-control on the behavioural problems of children with epilepsy. Seizure. 1997;6(5):383–391. doi:10.1016/s1059-1311(97)80038-6
  • Benson A, Lambert V, Gallagher P, Shahwan A, Austin JK. Parent perspectives of the challenging aspects of disclosing a child’s epilepsy diagnosis to others: why don’t they tell? Chronic Illn. 2017;13(1):28–48. doi:10.1177/1742395316648749
  • Elafros MA, Sakubita-Simasiku C, Atadzhanov M, Haworth A, Chomba E, Birbeck GL. Stigma and psychiatric morbidity among mothers of children with epilepsy in Zambia. Int Health. 2013;5(4):288–294. doi:10.1093/inthealth/iht028
  • Lachake AV, Desai N, Udani V. ‘To reveal or to conceal’- disclosure strategies in parents of children with epilepsy in India. Seizure. 2021;91:507–512. doi:10.1016/j.seizure.2021.07.026
  • Rood JE, Schultz JR, Rausch JR, Modi AC. Examining perceived stigma of children with newly-diagnosed epilepsy and their caregivers over a two-year period. Epilepsy Behav. 2014;39:38–41. doi:10.1016/j.yebeh.2014.08.004
  • Admi H, Shaham B. Living with epilepsy: ordinary people coping with extraordinary situations. Qual Health Res. 2007;17(9):1178–1187. doi:10.1177/1049732307307548
  • Elliott IM, Lach L, Smith ML. I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life. Epilepsy Behav. 2005;7(4):664–678. doi:10.1016/j.yebeh.2005.07.004
  • Engel ML, Shanley R, Scal PB, Kunin-Batson A. Anxiety and depressive symptoms in adolescents and young adults with epilepsy: the role of illness beliefs and social factors. Epilepsy Behav. 2021;116:107737. doi:10.1016/j.yebeh.2020.107737
  • Fernandes PT, Cabral P, Araújo U, Noronha AL, Li LM. Kids’ perception about epilepsy. Epilepsy Behav. 2005;6(4):601–603. doi:10.1016/j.yebeh.2005.02.011
  • Ani C, Ola BA, Coker R. School children’s stigmatising attitude towards peers with epilepsy in Nigeria. Vulnerable Child Youth Stud. 2011;6(4):330–338. doi:10.1080/17450128.2011.630491
  • Bellon M, Walker C, Peterson C, Cookson P. The “E” word: epilepsy and perceptions of unfair treatment from the 2010 Australian Epilepsy Longitudinal Survey. Epilepsy Behav. 2013;27(1):251–256. doi:10.1016/j.yebeh.2013.01.016
  • Bronfenbrenner U, Morris PA. The bioecological model of human development. In: Handbook of Child Psychology. John Wiley \& Sons, Inc; 2007.
  • Kampra M, Tzerakis NG, Losidis S, et al. Teachers’ knowledge about epilepsy in Greece: information sources and attitudes towards children with epilepsy during school time. Epilepsy Behav. 2016;60:218–224. doi:10.1016/j.yebeh.2016.04.004
  • Alzhrani SH, AlSufyani MH, Abdullah RI, Almalki S. School teacher's knowledge, attitudes, and practice toward student with epilepsy in Taif, Saudi Arabia: cross-sectional study. J Family Med Prim Care. 2021;10(7):2668–2678. doi:10.4103/jfmpc.jfmpc_2087_20
  • Berhe T, Yihun B, Abebe E, Abera H. Knowledge, attitude, and practice about epilepsy among teachers at Ethio-National School, Addis Ababa, Ethiopia. Epilepsy Behav. 2017;70(Pt A):150–153. doi:10.1016/j.yebeh.2017.02.009
  • Al-Harbi AF, Alsaid LA, Parameaswari PJ. Primary school female teachers’ knowledge, attitude, and practice toward students with epilepsy in Riyadh, Saudi Arabia. J Family Med Prim Care. 2018;7(2):331–336. doi:10.4103/jfmpc.jfmpc_58_18
  • Birbeck GL, Chomba E, Atadzhanov M, Mbewe E, Haworth A. Zambian teachers: what do they know about epilepsy and how can we work with them to decrease stigma? Epilepsy Behav. 2006;9(2):275–280. doi:10.1016/j.yebeh.2006.06.005
  • Asindi AA, Eyong KI. Stigma on Nigerian children living with epilepsy. J Pediatr Neurol. 2012;10(02):105–109. doi:10.3233/JPN-2012-0554
  • Kolahi AA, Abbasi-Kangevari M, Bakhshaei P, Mahvelati-Shamsabadi F, Tonekaboni SH, Farsar AR. Knowledge, attitudes, and practices among mothers of children with epilepsy: a study in a teaching hospital. Epilepsy Behav. 2017;69:147–152. doi:10.1016/j.yebeh.2016.10.018
  • Gzirishvili N, Kasradze S, Lomidze G, et al. Knowledge, attitudes, and stigma towards epilepsy in different walks of life: a study in Georgia. Epilepsy Behav. 2013;27(2):315–318. doi:10.1016/j.yebeh.2013.02.011
  • Barennes H, Sengkhamyong K, Sambany EM, et al. Children’s access to treatment for epilepsy: experience from the Lao People’s Democratic Republic. Arch Dis Child. 2011;96(3):309–313. doi:10.1136/adc.2009.181255
  • El Sharkawy G, Newton C, Hartley S. Attitudes and practices of families and health care personnel toward children with epilepsy in Kilifi, Kenya. Epilepsy Behav. 2006;8(1):201–212. doi:10.1016/j.yebeh.2005.09.011
  • Hirfanoglu T, Serdaroglu A, Cansu A, Soysal AS, Derle E, Gucuyener K. Do knowledge of, perception of, and attitudes toward epilepsy affect the quality of life of Turkish children with epilepsy and their parents? Epilepsy Behav. 2009;14(1):71–77. doi:10.1016/j.yebeh.2008.08.011
  • Baker GA, Spector S, McGrath Y, Soteriou H. Impact of epilepsy in adolescence: a UK controlled study. Epilepsy Behav. 2005;6(4):556–562. doi:10.1016/j.yebeh.2005.03.011
  • Elafros MA, Mulenga J, Mbewe E, et al. Peer support groups as an intervention to decrease epilepsy-associated stigma. Epilepsy Behav. 2013;27(1):188–192. doi:10.1016/j.yebeh.2013.01.005
  • Maya Kaye A. Pediatric epilepsy and psychoeducational interventions: a review of the literature. Epilepsy Behav. 2021;121(Pt A):108084. doi:10.1016/j.yebeh.2021.108084
  • Lewis MA, Hatton CL, Salas I, Leake B, Chiofalo N. Impact of the Children’s Epilepsy Program on parents. Epilepsia. 1991;32(3):365–374. doi:10.1111/j.1528-1157.1991.tb04665.x
  • Brabcova D, Lovasova V, Kohout J, Zarubova J, Komarek V. Improving the knowledge of epilepsy and reducing epilepsy-related stigma among children using educational video and educational drama--a comparison of the effectiveness of both interventions. Seizure. 2013;22(3):179–184. doi:10.1016/j.seizure.2012.11.017
  • 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. doi:10.1016/j.yebeh.2017.01.019
  • Brabcova DB, Belohlavkova A, Kohout J, Ebel M, Rokytova J, Krsek P. Psychometric properties of the Czech versions of the Impact of Pediatric Epilepsy Scale (IPES) and quality of life in epilepsy inventory for adolescents (QOLIE-AD-48). Epilepsy Behav. 2021;114(PtA):107629. doi:10.1016/j.yebeh.2020.107629
  • Gebrewold MA, Enquselassie F, Teklehaimanot R, Gugssa SA. Ethiopian teachers: their knowledge, attitude and practice towards epilepsy. BMC Neurol. 2016;16(1):167. doi:10.1186/s12883-016-0690-4
  • Martiniuk AL, Speechley KN, Secco M, Campbell MK, Donner A. Evaluation of an epilepsy education program for Grade 5 students: a cluster randomized trial. Epilepsy Behav. 2007;10(4):604–610. doi:10.1016/j.yebeh.2007.03.009
  • Roberts RM, Farhana HS. Effectiveness of a first aid information video in reducing epilepsy-related stigma. Epilepsy Behav. 2010;18(4):474–480. doi:10.1016/j.yebeh.2010.06.004
  • Cicero CE, Giuliano L, Todaro V, et al. Comic book-based educational program on epilepsy for high-school students: results from a pilot study in the Gran Chaco region, Bolivia. Epilepsy Behav. 2020;107:107076. doi:10.1016/j.yebeh.2020.107076
  • Bozkaya IO, Arhan E, Serdaroglu A, Soysal AS, Ozkan S, Gucuyener K. Knowledge of, perception of, and attitudes toward epilepsy of schoolchildren in Ankara and the effect of an educational program. Epilepsy Behav. 2010;17(1):56–63. doi:10.1016/j.yebeh.2009.10.011
  • Mecarelli O, Messina P, Capovilla G, et al. An educational campaign about epilepsy among Italian primary school teachers. 2. The results of a focused training program. Epilepsy Behav. 2015;42:93–97. doi:10.1016/j.yebeh.2014.07.022
  • Giuliano L, Cicero CE, Padilla S, et al. Knowledge, stigma, and quality of life in epilepsy: results before and after a community-based epilepsy awareness program in rural Bolivia. Epilepsy Behav. 2019;92:90–97. doi:10.1016/j.yebeh.2018.11.036