“I learn here what I don’t learn anywhere else”: An analysis of an online healthcare community

Abstract

This article aims to analyse the dynamics underlying communication within an online health community focused on carers, titled “Vencer Autismo” (Overcoming Autism). The community’s central platform was a Facebook page, supported by a weekly live programme moderated by moderators. A qualitative research approach was adopted, employing digital ethnography and interviews. The empirical study spanned over nine months, from September 2022 to May 2023, with the primary phase consisting of ten weeks of digital ethnography, followed by 10 interviews. The analysis of the relationships between identified elements revealed that the knowledge shared within the community is viewed as rare by its members. This knowledge is based on lived experiences, with an emphasis on practical learning, testing, and irreverent discourse. Regular interactions were found to strengthen relationships, while the sense of inclusion served as a unifying force. Trust, another key theme, was found to be volatile—and in constant development — reliant on minimal factors such as moderators refraining from commenting on topics outside their expertise. Transparency emerged as a shared value within the community. The role of moderators was also recognised, with their participation justified in ensuring that interactions remain respectful.