As user-generated video dominates media landscapes, it poses an accessibility challenge. While disability advocacy groups globally have secured hard-won accessibility regulations for broadcast media, no such regulation of user-generated content exists. Yet, one major player in this shift, TikTok, has a culture of user-generated, creative captioning. We sought to understand how TikTok videos are captioned and the impact current practices have on those who need captions to access audio content. Therefore, we conducted a content analysis of 300 open-captioned TikToks and contextualized these findings by interviewing nine caption users. We found that the current state of TikTok captioning does facilitate access to the platform but that a user-generated, social video-specific standard for captioning could improve caption quality and expand access. We contribute an empirical account of the state of TikTok captioning and outline steps toward a standard for user-generated captioning.

For geographically dispersed communities, including professional, academic, hobbyist, and fandom communities, in-person events and meetups play a crucial role in the function and health of the whole community. Building off prior literature, we take a nuanced look at large scale community events that blend online and offline interactions across digital and physical embodied experiences in order to build understanding of how this knowledge can be leveraged to build more accessible hybrid modalities for community events. Building on this foundation, this paper presents a comprehensive study using ethnographic methods to examine large scale community events, specifically stadium music concerts of varying modalities (e.g., in-person, live-streamed). Using a disability lens, we explore how such community events are experienced and technologically mediated, as well as how the community and individuals design and construct their own sociotechnical worlds across multiple modalities and embodied experiences. By centering the disabled embodied experience, we examine how community members navigate the concert environment, time, and the social experience of concert attendance. Based on our findings, we highlight the nuanced complexities of inclusive community-centered large scale, multi-modal events.

Body doubling involves using the presence of others to stay focused on or accomplish tasks. The term has emerged as a community-driven phenomenon employed by neurodivergent individuals and technologically mediated services for body doubling have followed. Yet, no academic exploration exists on the topic. We survey 220 people to investigate how, when, and why they engage in body doubling and how they define it. Most participants acknowledged that they had used this technique long before learning its name. We present the variety of ways people engage in body doubling (e.g., at a café, with YouTube), a diverse range of tasks people utilize it for (e.g., studying, dishes, exercising), and their motivations for doing so (e.g., generating momentum, staying on task). We contribute a two-part model of body doubling as a continuum of space/time and mutuality. We close with implications for future development in this space.

Despite a common misconception that Attention-Deficit Hyperactivity Disorder (ADHD) is a childhood disorder, symptoms often persist into adulthood and many adults remain undiagnosed for a variety of reasons. Increased adoption of social media such as Instagram, TikTok, and Twitter has led to increased representation of neurodivergent community members with ADHD. As a result of the COVID-19 pandemic and increased social media use, many have come to recognize themselves in content made by social media members with ADHD and thus sought diagnoses of their own. Social media provides a valuable source of information, first-hand experiences, support, and validation through shared experiences. These networks, which we call “unbounded Online Health Communities”, have encouraged patients to advocate for themselves using information and support they have received from online ADHD communities. To understand these communities better and privilege the lived experiences of people with ADHD, we conduct a digital ethnography of three social media platforms to explore community content, specifically around acceptance, diagnoses, and tensions with the medical community. We discuss these informal online health communities as a source of knowledge, different, but no less important than that of traditional Online Health Communities and further the view of these communities as a valuable resource of shared expertise.

My proposed dissertation work highlights social media as digitally-mediated support for neurodivergent individuals. By adopting a critical disability theory lens, I critique the techno-solutionism currently present in digital mental health care. I argue that existing social media platforms can provide community support for neurodivergent individuals to step away from the individualistic approaches currently promoted by much digital mental health technology. These social media-based communities are providing an important service of care and collective knowledge for individuals going through similar experiences to find validation and a sense of agency regarding treatment options. My research will further explore the relationships neurodivergent individuals have had with diagnostic and care systems, as well as ongoing tensions with healthcare providers in both physical and digital spaces.

Play is an essential part of the human experience and can be found throughout the lifespan. While play has long been of interest to the HCI community, research has often focused on the technologies supporting game play, the potential outcomes of play (e.g., skill-building, health improvements), or play among children. This paper explores what play looks like in online communities that are not specifically game-based and consist primarily of adults. From online ethnographic work of the ARMY (i.e., Adorable Representative M.C. for Youth), fandom of the South Korean musical group BTS, we explore how BTS and ARMY collaboratively construct a playful social environment using various social media platforms. A contribution of this work is to expand our conceptualization of how adults create playful places that are not specifically game-based and highlights the role of socio-technical systems in their community building.

As global rates of anxiety and depression increase, we observe millions of downloads of mobile apps addressing mental health that adopt 'freemium' charging models offering complex combinations of free and paid features. We explore potentially negative outcomes of deploying such freemium designs to vulnerable MH populations. We assess outcomes for 41 frequently downloaded mental health apps, by combining thematic analysis of 41K user reviews with audits to validate app descriptions and reviews. We propose a new analytic framework identifying three types of negative outcomes for freemium deployments: first vulnerable users currently experiencing crises may feel pressure to download unhelpful or costly apps. Second unintuitive descriptions of complex apps can lead to inappropriate treatments and expensive subscriptions. Third, limited duration offers may result in incomplete treatments or unexpected charges. We discuss ethical considerations and broader HCI consequences. We describe implications for mental health app design, including the need for greater transparency around free versus paid features, and propose new approaches to provide vulnerable users with validated information about these commonly downloaded apps.

Conversational agents (CAs) are increasingly ubiquitous and are now commonly used to access medical information. However, we lack systematic data about the quality of advice such agents provide. This paper evaluates CA advice for mental health (MH) questions, a pressing issue given that we are undergoing a mental health crisis. Building on prior work, we define a new method to systematically evaluate mental health responses from CAs. We develop multi-utterance conversational probes derived from two widely used mental health diagnostic surveys, the PHQ-9 (Depression) and the GAD-7 (Anxiety). We evaluate the responses of two text-based chatbots and four voice assistants to determine whether CAs provide relevant responses and treatments. Evaluations were conducted both by clinicians and immersively by trained raters, yielding consistent results across all raters. Although advice and recommendations were generally low quality, they were better for Crisis probes and for probes concerning symptoms of Anxiety rather than Depression. Responses were slightly improved for text versus speech-based agents, and when CAs had access to extended dialogue context. Design implications include suggestions for improved responses through clarification sub-dialogues. Responses may also be improved by the incorporation of empathy although this needs to be combined with effective treatments or advice.