In the current 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 aims to clarify the administrators’ user experience of social media health groups within the context of the Inflammatory Bowel Disease (IBD). Semi-structured interviews with seven 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.
|Title of host publication||Communicating Rare Diseases and Disorders in the Digital Age|
|Editors||Liliana Costa, Sónia Oliveira|
|Place of Publication||Pensilvânia, EUA|
|Number of pages||27|
|Publication status||Published - 2020|