Cláudia Pernencar, investigadora integrada do ICNOVA, assina em co-autoria o capítulo “How Is the Administrator’s Experience in Managing Health Facebook Groups?: The Impact of Social Media in Patients With IBD”, no livro Communicating Rare Diseases and Disorders in the Digital Age (IGI Global), organizado por Liliana Vale Costa e Sónia Oliveira, ambas da Universidade de Aveiro.
This decade, patients with chronic conditions take advantage of technological resources to share experiences, look for help, and get together in groups. Social media has become a productive spot of health information for users. This chapter clarifies the administrators’ user experience of social media health groups within the context of the Inflammatory Bowel Disease (IBD). Semi-structured interviews with 7 Portuguese and Brazilian managers of Facebook groups were carried out. The authors propose a model of participation in online communities that take into account the variables of Presence–Interconnection between users in daily lives; Relationship–Aspects of experience where users meet; Reputation–Positioning of users related to the status; Groups–Relationship issues between members; Conversations – Extension of the user interaction; Sharing–Represents the exchange, distribution, and reception and Education–The information transmitted. Findings reinforced that administrators’ groups use social media to lead patients´ empowerment.
Pernencar, C., & Saboia, I. (2020). How Is the Administrator’s Experience in Managing Health Facebook Groups?: The Impact of Social Media in Patients With IBD. In L. Costa, & S. Oliveira (Eds.), Communicating Rare Diseases and Disorders in the Digital Age (pp. 315-341). Hershey, PA: IGI Global. doi:10.4018/978-1-7998-2088-8.ch011