Characterizing Collective Efforts in Content Sharing and Quality Control for ADHD-relevant Content on Video-sharing Platforms

Abstract

Video-sharing platforms (VSPs) have become increasingly important for individuals with ADHD to recognize symptoms, acquire knowledge, and receive support. While videos offer rich information and high engagement, they also present unique challenges, such as information quality and accessibility issues to users with ADHD. However, little work has thoroughly examined the video content quality and accessibility issues, the impact, and the control strategies in the ADHD community. We fill this gap by systematically collecting 373 ADHD-relevant videos with comments from YouTube and TikTok and analyzing the data with a mixed method. Our study identified the characteristics of ADHD-relevant videos on VSPs (e.g., creator types, video presentation forms, quality issues) and revealed the collective efforts of creators and viewers in video quality control, such as authority building, collective quality checking, and accessibility improvement. We further derive actionable design implications for VSPs to offer more reliable and ADHD-friendly content.

2. Background & Related Work

2.1 ADHD: Diagnostic Challenges

Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental disorder that affects 7.6% of children and 6.8% of adults [61]. People with ADHD could display inattention and/or hyperactivity/impulsivity [82], and poorly managed ADHD could put people under various risks, including low self-esteem, underachievement, and substance abuse [80]. Despite the prevalence of ADHD and the importance of timely recognition and treatment, diagnosing ADHD can be challenging. Previously known as hyperkinetic behavior syndrome, ADHD was originally characterized as a childhood disorder that mainly affects boys who exhibit disruptive behaviors [38]. As a result, children who have the inattentive sub-type of ADHD have more difficulties getting a timely diagnosis and intervention in childhood [68]. Additionally, biases along the axes of age, gender, and race also contribute to diagnostic challenges. Adults [23, 53, 60], women [34, 88], people of color [65, 93], and their intersections [8, 51, 78] are more likely to experience undiagnosed or misdiagnosed ADHD, as their experiences are misinterpreted or dismissed [8, 29]. For individuals who failed to have their ADHD diagnosed early, they gradually adopt coping strategies or masking techniques to fit into their environment, making their ADHD presentations even less identifiable [2, 37]. As a result, self-exploration and awareness become crucial for people with undiagnosed ADHD to realize the need to seek help [39, 58]. Social media thus becomes an indispensable source for users with ADHD. While ADHD affects each individual differently, research has shown that people with ADHD could be particularly attracted to social media [7], a condition that was exacerbated during the COVID-19 lockdown [81]. We unpack the impact of social media on ADHD and the broader health community below.

2.2 Using Social Media for Health Purposes

Conventional text/image-based social media platforms, including Facebook, Reddit, and Twitter, have long been used to support users with health needs in sharing experiences, exchanging support, and deconstructing stereotypes [20, 62, 76]. More recently, however, video-sharing platforms (VSPs) have emerged rapidly among health communities, since videos afford particularly rich information and fast propagation [41]. YouTube and TikTok are the two most prominent VSPs in the U.S., with 83% of adults reported using YouTube and 33% using TikTok [59]. Both platforms bring increasing impact on the dissemination of a wide range of health-related content [48].

2.3 Quality of Health Contents on Social Media

Despite the important role thatsocial media playsin offering health-relevant content, research hascalled the quality of such content into question. Numerous efforts in the health field have been made to assess the quality of health information on various social media platforms, covering topics of drugs [5, 85], vaccines[10, 63], chronic illnesses [13, 52], pandemics [3, 19], and mental health [46, 71], and discovered that 30% to 87% of posts on different social media platforms contain misinformation [73]. The content quality issues for ADHD-relevant videos on VSPs can be more severe and challenging due to the rich, multimodal, and less controllable nature of videos [55]. For example, Thapa et al. [75] collected ADHD-relevant videos on YouTube, rated the video quality with a self-devised scoring system, and identified 38.4% of the videos as misleading. More recently, Yeung et al. [86] invited experts to rate the top 100 videos under the hashtag “#adhd” on TikTok in 2022, and identified 52% as misleading. However, although prior work has highlighted the potential content quality risk of ADHD-relevant videos, such quantitative evaluation of ADHD video quality relied on a score-based assessment system developed from a clinical lens [9], without diving into creators’ and viewers’ reactions, practices, and challenges when combating video quality issues. Such clinical criteria are usually not well-suited for videos that share unique personal experiences— an important type of content for ADHD community building and experience sharing [18]. This gap highlights the need for a more nuanced and thorough approach to examine the characteristics, qualities, and impact of ADHD content on VSPs.

4. Findings

In this section, we present the main findings from our mixed methods analysis, including quantitative results on the characteristics of ADHD-relevant videos, the collective efforts by creators and viewers in video quality control alongside their challenges, and ADHD-relevant accessibility issues and practices in video creation.

Platform-level content characteristics. TikTok is dominated by self-identified individuals with ADHD sharing short, humorous, and experiential content, while YouTube features more institutions, organizations, and health professionals producing longer, educational videos. Both platforms frequently cover ADHD symptoms and lived experiences, but YouTube includes significantly more medical information, demographic discussions, advocacy content, and practical tips, reflecting its more “authoritative” orientation.

Collective quality control practices. Content quality control emerges as a collective effort. Creators signal authorship and credibility through identity disclosure, references, and disclaimers, and platforms occasionally highlight licensed health professionals. Viewers actively participate in quality checking by challenging misleading content, pointing out factual errors, and sharing alternative experiences in comments; however, vague credentials, irrelevant references, and low visibility of disclaimers can still mislead viewers or obscure creators’ intentions.

Accessibility and perceptual gaps. For ADHD viewers, video length, slow pace, distracting sounds and visuals, and incorrect or missing captions critically affect accessibility. Community-driven practices such as using video chapters and comment-based timestamps help make long videos more digestible, yet professional talks and documentaries often remain hard to follow. We also surface perceptual gaps between professional creators and ADHD viewers (e.g., attitudes toward stimulant use and self-diagnosis), which shape how viewers interpret “authoritative” content and make help-seeking decisions.

Figure 1: Creator and video distributions on YouTube and TikTok. (a) Distributions of creator types; (b) Distributions of videos convering different contents; (c) Distributions of video forms.

Figure 2: Examples of different videos forms except for compilation. A compilation video could consist of multiple forms above.

6. Conclusion

Our work contributed the first in-depth characterization and analysis of ADHD-relevant content on different VSPs. By carefully analyzing 373 videos and the corresponding comments, we characterized the unique creator demographics, content covered and presentation forms on each platform, identified the collective content quality control efforts and tensions across different user groups, and highlighted video accessibility issues for viewers with ADHD on each platform. Building on these insights, we proposed design guidelines on how VSPs could improve ADHD-relevant video sharing experiences to create a safer and more inclusive online environment for the ADHD community.