I suffer from a serious rare disease: a challenge to sing and choreograph on TikTok
DOI:
https://doi.org/10.3145/epi.2021.jul.14Keywords:
Social networks, Social media, Social network analysis, TikTok, Health communication, Rare diseases, Disabillity, Content analysis, Image interpretationAbstract
Rare diseases are extremely severe, disabling pathologies. In total, 7% of the world´s population suffers from a rare disease. To publicize their plight, people suffering from such diseases and their families have turned to Facebook, Twitter, and YouTube, among other social media platforms, as effective tools for sharing their problems, calling for greater investment in research and to cope with their day-to-day hardships. Symbols and representations defining rare diseases that have been established in the media and on social networking services have thus gained in prominence. This research asks what the emergence of the TikTok app, the second most downloaded in 2019 and the first in 2020, has meant for how these diseases are made visible. To answer this question, 2,750 TikTok posts with the 11 most popular hashtags related to rare diseases in six languages "‹"‹were analyzed between 1 January 2019 and 30 September 2020. The findings confirm that, against this highly personalized backdrop, the widespread use of TikTok is changing an already consolidated discourse of protest and fostering the creation of new codes with unpredictable results for the recognition and support needed by this marginalized community.
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Palabras clave: Análisis de redes sociales; TikTok; enfermedades raras; discapacidad; análisis de contenido; interpretación de imágenes.
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A rare disease is an extremely severe, disabling pathology. In total, 7% of the world´s population suffer from rare diseases. In an effort to make their plight known, people suffering from these diseases and their families have turned to Facebook, Twitter, and YouTube, among other social media platforms, as effective tools for sharing their problems, calling for bigger investments in research, and coping with their day-to-day hardships. Consequently, symbols and representations defining rare diseases that have been established in the media and on social networking services have gained currency. This research asks what the irruption of the TikTok application, the most downloaded in 2019 and 2020, has meant in the way in which these diseases are made visible. To answer the question, 2,750 TikTok posts with the 11 most popular hashtags related to rare diseases in six languages "‹"‹have been analyzed, between January 1, 2019 and September 30, 2020. Our findings confirm that, in the context of a highly personalized scenography, the widespread use of TikTok is changing an already consolidated discourse of protest and fostering the creation of new codes with unpredictable results for the recognition and support that this marginalized community needs.
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