From Lived Experience to Digital Advocacy: Eating Disorder Recovery Content Creation on Social Media.

Abstract

Objective: Despite the importance of incorporating individuals with lived experience in the collaborative development and delivery of eating disorder (ED) services, a paucity of research has addressed the role of content creators with lived experience within the context of social media in contributing to help-seeking and recovery spaces. This qualitative study documents content creators' experiences of recovery-oriented content creation and informal digital support through social media platforms. It also explores how content creators contribute to recovery-oriented communication, prevention, and co-design of digital interventions.

Method: A total of 10 Italian female content creators in stable recovery from eating disorders (i.e., no relapse in the past 5 years) were recruited via the Instagram community #DicciComeAiutarti and they were interviewed.

Results: Through a reflexive inductive thematic analysis five overarching themes were identified: (1) Using Lived Experience to Build Recovery-Oriented Narratives and Communities, which highlighted lived experience as a relational resource for fostering recovery and shared meaning online; (2) Social media as a Double-Edged Sword, describing social media as both a supportive and potentially harmful space for ED recovery; (3) Communication Strategies for Effective Engagement, focusing on how participants adapted communication practices to the affordances and limits of different platforms; (4) Social Networking, Prevention, and Health Promotion, which framed online activity as part of a broader prevention and health advocacy effort; and (5) Providing Hope in Digital Peer Support, illustrating how structured peer-support contexts reshaped the sharing of lived experience and hope in recovery.

Discussion: Finally, the findings of the present study suggest that content creators can meaningfully contribute to the prevention and treatment of ED when integrated into supervised, ethically framed digital networks. The co-production of interventions with individuals who have recovered can engender a more humanised form of digital health communication, strengthening therapeutic engagement and supporting recovery-oriented public health strategies.