Sociodigital Networks and Quality of Life in Patients with Rare Diseases
DOI:
https://doi.org/10.62008/ixc/15/02RedesKeywords:
Health Communication, Rare Diseases, Social Media, Quality of Life, Digital Health, Emotional SupportAbstract
This study aims to analyse how communication in social media influences the quality of life of patients with rare diseases (RD) through a comparative approach across different associations and platforms. The methodology includes a content analysis of Facebook and Instagram, surveys with patients and families, and in-depth interviews with representatives from the associations AIPAMM and MPN Spain. Findings indicate that the use of social media not only facilitates access to personalized information but also provides a space for emotional support. Significant differences were also observed in the effectiveness of communication strategies depending on the platform used and the type of content shared. In conclusion, social media are important tools for improving the visibility of RD and providing emotional support to patients, although challenges such as information quality and accuracy remain.
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