It is estimated that 10%-20% of the US population will struggle with an eating disorder at some point in their lifetime [258]. Eating disorders is a complex set of psychiatric disorders that, regardless of classification, share several key characteristics including a disturbance of eating habits or weight-control behaviors and a clinically significant impairment of physical health or psychosocial functioning [3]. Self-image and identity are interwoven aspects of ED symptomology [86] and online spaces have been found to have impact on body image and eating pathology [217], thus highlighting the need for a deeper understanding of how ED patients use these online tools throughout their disease journey. A core tenant of social computing research focuses on understanding behaviors of people using online spaces [19,148,267] and how the design [21,190,253] and policies [40,191] of these spaces impact user behavior. This growing research domain is quite diverse. In the last decade, attention on how the social media landscape impacts mental health has drastically increased as the volume of users and the time spent within these online spaces has exponentially increased. The ubiquitous nature of mobile computing technologies and the rise of social media platforms integration into these technologies has given individuals unprecedented access to a diverse set of people and ideas. This ubiquity is so complete that 27% the most recent generation of users estimate being continuously connected to the internet [232]. Taking these factors into consideration, a need exists to understand how people with eating disorders use social technologies to support their disease states and what this online use looks like at a network level. In this dissertation I seek to connect a person’s digital activity to their physical health condition, an eating disorder. I ground my research in a quantitative and qualitive assessment of a specific population and condition: patients with eating disorders and the impacts of their online activities on their disease. I want to understand how social media use impacts a person’s active disease state. How are eating disorders characterized online? Should online activities that support active disease states be classified as a form of digital self-harm? What can be learned from assessing a diagnosed patient’s social media streams leading up to the beginning of their recovery journey? Over the last several years, I have analyzed eating disorder focused social media content across multiple platforms. Using this knowledge, I put forth an expanded concept of digital self-harm, grounding it within a clinical context. Finally, I worked with a set of clinicians and patients to understand the role that social media and other social technologies played in their active eating disordered activities and behaviors, thus testing my thoughts on digital self-harm with a patient population. In this dissertation, I test the following thesis: Patients with a clinically diagnosed eating disorder who actively use social technologies will use social media platforms as a process of engaging with digital self-harm activities. My research addresses the following research questions:1. What is the presentation and characterizations of eating disordered activities online?2. What are the online behaviors of people clinically diagnosed with an eating disorder? 3. How might evidence of online eating disordered behaviors best be integrated into clinical treatment? This work makes contributions to the Human-Centered Computing field through the identification and characterization of mental health issues across multiple online platforms. Additionally, it highlights the potential bias and ethical issues of these practices. To the health informatics field, this work highlights the direct connections of the use of social technologies and exacerbated disease states and the complexities of integrating this knowledge into clinical practice.
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Digital self-harm: Implications of eating disordered behaviors online