Autobiographical narratives about psoriasis on social media: analysis of testimonials from YouTube users
DOI:
https://doi.org/10.33448/rsd-v10i16.23210Keywords:
Psoriasis; Stigma; Prejudice; YouTube.Abstract
The experience of those who have an autoimmune disease such as psoriasis affects people's physical appearance and psychosocial status. It can bring significant harm to these people's lives. The study aimed to analyze the experience of chronic illness from psoriasis lived and documented on the YouTube platform. It is documental, qualitative research. The collected data was through the selection of videos from the YouTube platform with autobiographical narratives about psoriasis. Data collection took place in February and March 2021, retrieving six videos available on YouTube. The transcripts of the videos were subjected to thematic-reflective analysis and later discussed based on the scientific literature on psoriasis, especially in the field of mental health. Was produced two main themes: (1) psoriasis discovery and diagnosis; (2) feelings, prejudice towards psoriasis, and how it affects the quality of life of people affected by the disease. The YouTubers' narratives revealed that psoriasis promoted negative feelings, with emotional, physical, and social repercussions. The reports reinforced the importance of an accurate and early diagnosis for better management of the psychosocial effects of this condition. Investigating the role of this social network in the deconstruction of stigmas associated with psoriasis is a recommendation for further studies.
References
Amarante, M. S. D. L. D. et al. (2020). Perfil epidemiológico dos pacientes com diagnóstico de psoríase atendidos na BWS, São Paulo -SP. BWS Journal, 3, e20080094.
Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitiative Research in Sport, 11(1), 1-9. https://doi.org/10.1080/2159676X.2019.1628806
Bruni, F. et al. (2021). Clinical and trichoscopic features in various forms of scalp psoriasis. Journal of the European Academy of Dermatology and Venereology, 35(9), 1830-1837. https://doi.org/10.1111/jdv.17354
Conitec (2021). Protocolo Clínico e Diretrizes Terapêuticas da Psoríase. Brasília: Autor. http://conitec.gov.br/images/Consultas/Relatorios/2021/20210615_Relatorio_Psoriase_CP_52.pdf
Costa, B. B., Viegas, D. J., Moreira, T. A., & Abreu, P. A. (2020). O movimento antivacina no YouTube nos tempos de pós-verdade: Educação em saúde ou desinformação?. Revista Mídia e Cotidiano, 14(1), 220-239. https://doi.org/10.22409/rmc.v14i1.38210
Dure, D. M., & Ceolin, P. (2017). O crescimento do youtube no Brasil e a popularidade do canal nostalgia. https://www.riobrancofac.edu.br/site/doc/simposios/2016/O-crescimento-do-youtube-no-Brasil_Deborah-Dure.pdf
Brasil (2011). Presidência da República da Casa Civil. Subchefia para Assuntos Jurídicos. Lei nº 12.527, de 18 de novembro de 2011. Brasília: Autor.
Guerreiro, T. N. et al. (2018). Alterações no cotidiano de pessoas acometidas por psoríase. Revista Enfermagem UERJ, 26, e28332. https://doi.org/10.12957/reuerj.2018.28332
Guedes, D. R., & Viana, E. S. (2020). Psoríase e sua ligação com os aspectos psicológicos. Revista PubSaúde, 3, a047. https://dx.doi.org/10.31533/pubsaude3.a047
Innamorati, M. et al. (2016). Health-related quality of life and its association with alexithymia and difficulties in emotion regulation in patients with psoriasis. Comprehensive Psychiatry, 70, 200-208. https://doi.org/10.1016/j.comppsych.2016.08.001
Isidorio, E. C. et al. (2020). O uso do tratamento psicológico na melhora da qualidade de vida de pacientes dermatológicos: uma revisão integrativa da literatura. Research, Society and Development, 9(10), e7699109191. https://doi.org/10.33448/rsd-v9i10.9191
Mendes, R. C. A. (2019). Processos de regulação emocional em pessoas com o diagnóstico de Psoríase. (Dissertação) – Escola Superior de Altos Estudos, Instituto Superior Miguel Torga.
Moscardi, E. R., & Ogava, S. E. M. (2017). Psoríase: etiologia, diagnóstico e tratamento. Revista Uningá Review, 29(2), 70-74.
Pollo, C. F. (2020). Fatores associados à qualidade de vida em pacientes com psoríase: um estudo transversal. (Tese) – Universidade Estadual Paulista.
Rodrigues, J. M. C. et al. (2020). Estresse e psoríase: novas abordagens no tratamento. Revista Eletrônica Acervo Científico, 12, e4638. https://doi.org/10.25248/reac.e4638.2020
Rua, M. O. et al. (2021). Influências da depressão na psoríase: uma relação bidirecional. Revista Eletrônica Acervo Científico, 23, e5650. https://doi.org/10.25248/reac.e5650.2021
Scorsolini-Comin, F. (2021). Projeto de pesquisa em ciências da saúde: guia prático para estudantes. Petrópolis: Vozes.
Sociedade Brasileira de Dermatologia [SBD] (2019). Dermatologistas comemoram publicação pelo Governo de parâmetros mínimos para o atendimento de pacientes com psoríase. https://www.sbd.org.br/noticias/conquista-da-sbd-dermatologistas-comemoram-publicacao-pelo-governo-de-parametros-minimos-para-o-atendimento-de-pacientes-com-psoriase/.
Sociedade Brasileira de Dermatologia [SBD] (2021). Psoríase. https://www.sbd.org.br/dermatologia/pele/doencas-e-problemas/psoriase/18/.
Silva, B. F. P., & Faro, A. (2019). Regulação emocional e sintomas depressivos em pacientes com psoríase. Revista de Psicología (Santiago), 28(2), 1-10. https://dx.doi.org/10.5354/0719-0581.2020.55656
Villa, L. S. C., Mello, A. D. C., Gonçalves, J. V., Silva, T. M. G., & Bernuci, M. P. (2021). Avaliação da qualidade dos vídeos sobre câncer de mama mais visualizados no YouTube: relevância para promoção da saúde da mulher. Reciis – Revista Eletrônica de Comunicação, Informação & Inovação em Saúde, 15(3), 648-664. https://doi.org/10.29397/reciis.v15i3.2342
Xavier, F. et al. (2020). Análise de redes sociais como estratégia de apoio à vigilância em saúde durante a Covid-19. Estudos Avançados, 34(99), 261-282. https://doi.org/10.1590/s0103-4014.2020.3499.016
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Copyright (c) 2021 Mila Cristian da Silva; Grasiele Cristina Lucietto da Silva; Luana Vieira Coelho Ferreira; Rondinele Amaral da Silva; Carla Augusta Pavlu Matioli; Patricia Madalena da Rocha Carvalho Costa; Fabio Scorsolini-Comin
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