Combatendo o estigma da epilepsia através de um videoclipe / Fighting epilepsy stigma through a music video

João Gabriel Barboza Rios, Luiza Rahmeier Fietz Rios, Vivian Rahmeier Fietz, Carlos Alberto Leal Costa, Henrique Antonio Delziovo, Rafael Gustavo Sato Watanabe, Katia Lin

Resumo


Objetivo. Visando diminuir o estigma da epilepsia e o despreparo da população para lidar com as crises epilépticas, o videoclipe "Epilepsia" foi desenvolvido como um instrumento de ensino didático, agradável e memorável para a população leiga. É objetivo desse estudo investigar o potencial pedagógico e sua eficácia em reduzir o estigma em epilepsia através de um videoclipe. Métodos. Um videoclipe musical foi produzido especificamente para este projeto ( https://youtu.be/18En8n7dX74 ), contendo os principais fatores relacionados ao estigma da epilepsia e instruções sobre como agir frente a um indivíduo tendo uma crise epiléptica. Foi aplicada a Escala de Estigma na Epilepsia (EEE), previamente desenvolvida e validada no Brasil, antes e depois da intervenção. Resultados. Foram entrevistados 128 indivíduos da população geral em três cidades no Brasil (Florianópolis – SC, São Paulo – SP e Dourados – MS) antes e depois de assistir ao videoclipe. Observou-se redução estatisticamente significante nos escores antes e depois de assistir ao videoclipe, [38,88 versus 20,81; p < 0,0001]. Esta redução do estigma foi diretamente proporcional ao nível de escolaridade do indivíduo e foi mais proeminente naqueles que desconheciam alguém com diagnóstico de epilepsia antes da intervenção. Quarenta e três (33%) indivíduos afirmaram que segurariam a língua de uma pessoa durante uma crise epiléptica antes da intervenção, enquanto apenas 13 (10%) responderam o mesmo após (p<0,0001). Conclusão. O videoclipe “Epilepsia” mostrou-se eficaz como ferramenta de educação social, em reduzir o estigma na epilepsia, com a vantagem de ser gratuita e de fácil acesso à população.

 

Introduction: Epilepsy imposes considerable psychological and emotional burden not only on people with epilepsy, but also on their families. It is a stigmatizing condition, as a result of uncontrolled and unpredictable seizures. Interventions to fight stigma in epilepsy exist, however, little is known about their efficacy. Therefore, this study aims to assess people's potential learning and stigma towards epilepsy before and after watching an educational music video. Methods: We composed a song and produced a music video  (https://youtu.be/18En8n7dX74),  addressing the most common stigma issues, attitudes, and perceptions towards someone having a seizure, and evaluated quantitatively the impact of this intervention in the general population using a previously validated protocol in Brazil, the Stigma Scale of Epilepsy (SSE). Results: One-hundred-and-twenty-eight individuals were interviewed in three different cities in Brazil scored 38.88 (median) before and 20.81 after watching the music video (p<0.0001). This reduction of perceived stigma was directly proportional to educational level and it was most prominent among individuals who declared not having any known relative or friend with epilepsy. Fourty-three (33%) individuals declared they would hold the tongue of a person having a seizure before listening to the music, while only 13 (10%) answered the same after the intervention (p<0.0001). Conclusion: Attitudes and perceptions about epilepsy can be easily improved through simple interventions such as watching a short music video, which may be appropriate as a mass media campaign towards minimizing epilepsy stigma. 


Palavras-chave


Epilepsia; Estigma Social; Música; Recursos Audiovisuais; Gravação em Vídeo /Epilepsy; Social Stigma; Music; Audiovisual Aids; Video Recording

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Referências


Fisher RS, Acevedo C, Arzimanoglou A, Bogacz A, Cross JH, Elger CE, et al. A practical clinical definition of epilepsy. Epilepsia. 2014;55:475-82. doi: 10.1111/epi.12550. Epub 2014 Apr 14

Thurman DJ, Beghi E, Begley CE, Berg AT, Buchhalter JR, Ding D, et al. Standards for epidemiologic studies and surveillance of epilepsy. Epilepsia. 2011;52:2-26. doi: 10.1111/j.1528-1167.2011.03121.x

de Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy Behav. 2008;12:540-6. doi: 10.1016/j.yebeh.2007.12.019

Fernandes PT, Salgado PC, Noronha AL, Sander JW, Li LM. Stigma Scale of Epilepsy: validation process. Arq Neuropsiquiatr. 2007;65:35-42. doi: 10.1590/s0004-282x2007001000006

Goffman E. Stigma: notes on the management of spoiled identity. Prentice-Hall, Upper Saddle River, NJ. 1963.

Fernandes PT, Snape DA, Beran RG, Jacoby A. Epilepsy stigma: what do we know and where next? Epilepsy Behav. 2011;22:55-62. doi: 10.1016/j.yebeh.2011.02.014

Fernandes PT, Li ML. Percepção de estigma na epilepsia. J Epilepsy Clin Neurophysiol. 2006;12:207-18.

Zatorre RJ, Evans AC, Meyer E. Neural mechanisms underlying melodic perception and memory for pitch. J Neurosci. 1994;14:1908-19. doi: 10.1523/JNEUROSCI.14-04-01908.1994

Salpekar JA. Mula M. Common psychiatric comorbidities in epilepsy: how big a problem is it? Epilepsy Behav. 2018;98:293-7. doi: 10.1016/j.yebeh.2018.07.023

Tedrus GMAS, Pereira RB, Zoppi M. Epilepsy, stigma, and family. Epilepsy Behav 2018;78:265-8. doi: 10.1016/j.yebeh.2017.08.007

Pitkänen A, Henshall DC, Cross JH, Guerrini R, Jozwiak S, Kokaia M, et al. Advancing research toward faster diagnosis, better treatment, and end of stigma in epilepsy. Epilepsia 2019;60:1281-92. doi: 10.1111/epi.16091

Holmes E, Bourke S, Plumpton C. Attitudes towards epilepsy in the UK population: results from a 2018 national survey. Seizure. 2019;65:12-9. doi: 10.1016/j.seizure.2018.12.012

Kane JC, Elafros MA, Murray SM, Mitchell EM, Augustinavicius JL, Causevic S, et al. A scoping review of health-related stigma outcomes for high-burden diseases in low-and middle-income countries. BMC Medicine. 2019;17:17. doi: 10.1186/s12916-019-1250-8

Tombini M, Assenza G, Quintiliani L, Ricci L, Lanzone J, De Mojà R, et al. Epilepsy-associated stigma from the perspective of people with epilepsy and the community in Italy. Epilepsy Behav. 2019;98:66-72. doi: 10.1016/j.yebeh.2019.06.026

Giuliano L, Cicero CE, Padilha S, Mayaregua DR, Villarreal WMC, Sofia V, 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;92:90-7. doi: 10.1016/j.yebeh.2018.11.036

Caixeta J, Fernandes PT, Bell GS, Sander JW, Li ML. Epilepsy perception amongst university students. Arq Neuropsiquiatr. 2007;65:43-8. doi: 10.1590/s0004-282x2007001000007

Yeni K, Tülek Z, Bebek N, Cavusoglu A, Güven H, Simsek N, et al. Knowledge and attitudes toward epilepsy among students of health occupations in a university. Epilepsi. 2019;25:13-20. doi: 10.14744/epilepsi.2018.21043

Fernandes PT, Noronha AL, Araújo U, et al. Teachers perception about epilepsy. Arq Neuropsiquiatr. 2007;65:28-34. doi: 10.1590/S0004-282X2007001000005

Clement S, Lassman F, Barley E, Evans-Lacko S, Williams P, Yamaguchi S, Slade M, Rüsch N, Thornicroft G. Mass media interventions for reducing mental health-related stigma. Cochrane Database Syst Rev. 2013;23:CD009453. doi: 10.1002/14651858.CD009453.pub2

Smythe T, Adelson JD, Polack S. Systematic review of interventions for reducing stigma experienced by children with disabilities and their families in low- and middle-income countries: state of the evidence. Trop Med Int Health. 2020;25:508-24. doi: 10.1111/tmi.13388

Hartog K, Hubbard CD, Krouwer AF, Thornicroft G, Kohrt BA, Jordans MJD. Stigma reduction interventions for children and adolescents in low- and middle- income countries: systematic review of intervention strategies. Soc Sci Med. 2020;246:112749. doi: 10.1016/j.socscimed.2019.112749




DOI: https://doi.org/10.32963/bcmufsc.v6i2.4242

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Direitos autorais 2020 Katia Lin, Rafael Gustavo Sato Watanabe, Henrique Antonio Delziovo, Carlos A. L. Costa, Vivian Rahmeier Fietz, Luiza Rahmeier Fietz Rios, João Gabriel Barboza Rios

URL da licença: https://creativecommons.org/licenses/by/3.0/