Information-Seeking, Finding Identity: Exploring the Role of Online Health Information in Illness Experience

The identities we hold have a relationship with how we come to express and understand our experiences of illness. Language forms a means for us to express this understanding and experience to others, and receive information to clarify our own experiences. Having access to new information when undergoing an illness experience can be integral in supporting decision-making for one’s health and well-being and change how we understand ourselves and our experience. Individuals are exposed to information about experiences of illness via search engines, social media, and other platforms online. This online health information may thus significantly influence the decision-making process. Research is needed to understand how the affordances of diverse online hubs for health information influence how people understand illness experiences and seek care. How people use the internet for information-seeking is often researched in individual health conditions. This workshop aims to explore the different methods researchers have used to understand online information-seeking journeys and to identify how the internet is, or can be, used to help users make sense of, and give meaning to, their experiences. Through convening a methodologically diverse set of researchers, we hope to generate a foundation and cohesive field of inquiry and community within HCI

Self-injury support online: Exploring use of the mobile peer support application TalkLife

There is growing interest in how technologies can be leveraged to support mental health. Accessible through the Internet and mobile applications (apps), online communities are ubiquitous and have promise in providing individuals with peer support, information, and additional resources. However, empirical evidence for the effects of participation in online communities on mental health outcomes is limited. In this dissertation I address this gap by exploring how individuals use a mobile peer support application, TalkLife, to discuss and exchange support on self-injury. Self-injury was chosen as a case study because it is a common and concerning behavior that affects many young people. While stigma associated with the behavior can prevent people from getting help, the pervasiveness of online communities and online activity around self-injury has been noted. Informal online help-seeking is a recognized, and potentially a critical, resource for these individuals. In chapter 1, I provide an overview of relevant literature on online communities, peer support, and self-injury and discuss areas in need of further study. In chapter 2, I contribute an in-depth description of self-injury related activity on TalkLife including user characteristics, natural use patterns, and common language in posts and comments. In chapter 3, I investigate the dynamics of peer support on TalkLife. I characterize the types of support solicitations and responses on the platform and investigate the relationship between them. Then, I investigate peer responsiveness by identifying individual, message, and platform factors which predict the amount of support posts received and the amount of time it takes for community members to respond to certain types of posts. In chapter 4, I combine log data and survey data in a longitudinal examination of the relationship between TalkLife use and several self-injury outcomes including self-injury behaviors, thoughts, urges, and intentions to injure. Finally, I summarize key findings, describe implications for three key stakeholder groups (designers, clinicians, researchers), and discuss future directions in the concluding chapter. Together the findings from this dissertation make several novel contributions. First, while the methods employed here have proven to be valuable in understanding other mental health conditions, few studies have applied them to self-injury communities, or to TalkLife. Second, I contribute a detailed empirical account of the dynamics of peer support and identify factors which predict the amount of support posts generate. Lastly, this work provides initial evidence for relationship between TalkLife use and self-injury outcomes over time

Developing a Mobile App for Young Adults with Nonsuicidal Self-Injury: A Prototype Feedback Study

Nonsuicidal self-injury (NSSI) affects approximately 13% of young adults. Though evidence-based treatments for NSSI exist, most young adults do not receive treatment. Digital interventions can provide access to evidence-based treatments for NSSI at scale. Further, preliminary research suggests the acceptability, feasibility, and potential efficacy of digital interventions for NSSI. To date, however, there are few publicly available digital interventions developed specifically for young adults who engage in NSSI. The aim of this study was to solicit young adults’ impressions of early app prototypes to identify ways of improving interactive features and content needs. Building on a prior interview study which explored young adults’ self-management of NSSI and their use of technology in self-management, this study involved three waves of iterative app prototype feedback sessions with 10 young adults with past month NSSI. In general, participants responded favorably and provided feedback to augment the app to better meet their needs, including adding new features and functionality as well as increasing opportunities for personalization. We discuss two key design challenges related to the roles of tracking and temporality in digital interventions for NSSI, and then frame design considerations related to these challenges within the lived informatics model

AVATARS AS GHOSTS IN MMORPG

As the adoption rate of new media technologies grows ever faster, possibilities for self expression and virtual identity formation increase. While much is said about the prevalence of our lives online, little research to date considers that mortality on equal terms to the lives we live offline. Informed by theories from existential psychology (Becker, 1973) and communication (Peters, 1999), our research considers the ways in which avatars created for virtual gaming environments capture the essence of their creators and live on inside the game environment by mirroring the features of what in popular culture might be called ghosts. Given that avatars become central features of the game world, our work likens the ghost-like avatar presence to the dynamics of hauntings in popular literature

Young Adults’ Perceptions of 2 Publicly Available Digital Resources for Self-injury: Qualitative Study of a Peer Support App and Web-Based Factsheets

BackgroundDigital resources have the potential to bridge the gaps in mental health services for young people who self-injure. Most research on digital resources for this population has involved observational studies of content in web-based communities or formative studies focused on the design and early evaluation of new interventions. Far less research has sought to understand young people’s experiences with publicly available digital resources or to identify specific components of these resources that are perceived to be of value in their recovery. ObjectiveThis study aimed to understand young people’s experiences with 2 publicly available digital resources for self-injury—a peer support app and web-based factsheets—and to disentangle potential explanatory mechanisms associated with perceived benefits and harms. MethodsParticipants were 96 individuals (aged 16-25 years) with nonsuicidal self-injury behavior in the past month, who recently completed a pilot randomized controlled trial designed to assess the efficacy of a peer support app as compared with web-based factsheets to reduce self-injury behavior. The trial showed that participants using the peer support app reported less self-injury behavior relative to those receiving the web-based factsheets over 8 weeks. In this study, we used a conventional approach to content analysis of responses to 2 open-ended questions delivered at the end of the trial with the aims of exploring participants’ overall experiences with these resources and identifying the qualities of these resources that were perceived to be beneficial to or harmful for participants’ recovery. ResultsOverall, participants were more likely to report benefits than harms. Participants who used the peer support app reported more harms than those who received the web-based factsheets. In the open coding phase, clear benefits were also derived from repeated weekly surveys about self-injury. Key benefits across digital resources included enhanced self-knowledge, reduction in self-injury activity, increased outreach or informal conversations, improved attitudes toward therapy, improved mood, and feeling supported and less alone. Key challenges included worsened or unchanged self-injury activity, diminished mood, and increased barriers to outreach. The most prominent benefit derived from the web-based factsheets and weekly surveys was improved self-understanding. However, the way this manifested differed, with factsheets providing insight on why participants engage in self-injury and the function it serves them and surveys making the frequency and severity of participants’ behaviors more apparent. The benefits perceived from using the peer support app were general improvements in mood and feeling less alone. ConclusionsFindings contribute a nuanced understanding of young people’s experiences with these digital resources and have implications for the optimization of existing platforms and the design of novel resources to support individuals who self-injure