JMIR Publications

ABSTRACT

Background:

Social media platforms are increasingly used for both sharing and seeking of health-related information online. Especially TikTok has become one of the most widely used social networking platforms over the last few years. One health-related topic trending on TikTok recently is Attention Deficit/Hyperactivity Disorder (ADHD). However, the accuracy of health-related information on TikTok remains a significant concern. Misleading information on ADHD on TikTok can increase stigmatization and lead to false “self-diagnosis”, pathologizing normal behavior and overuse of care.

Objective:

This study aims at investigating the occurrence of misleading information in TikTok videos about ADHD and at exploring the amount of potential self-diagnosis among viewers based on an in-depths analysis of the video comments.

Methods:

We scraped data from the 124 most liked ADHD-related TikTok videos uploaded between March 2022 and November 2023 using a commercial scraping software. We categorised videos based on the usefulness of their content as "misleading", "personal experience" or "useful" and used the Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V) to evaluate the video quality regarding understandability and actionability. By purposive sampling we selected six videos and analyzed the content of 100 randomly selected user comments per video to understand the extent of self-identification with ADHD-behaviour among the viewers. All qualitative analyses were carried out independently by at least two authors, disagreement was resolved by discussion. Using SPSS 27, we calculated the interrater reliability between the raters and descriptive statistics for video and creator characteristics. We used one-way ANOVA to compare the usefulness of the videos.

Results:

We assessed 51% of the videos as misleading, 30% as personal experience, and 19% as useful. The PEMAT-A/V scores for understandability and actionability are 79.5% and 5.1%, respectively, with the highest scores observed for useful videos (92.3% for understandability, 8.3% for actionability). Viewers resonated with ADHD-related behaviours depicted in the videos in 36.7% and with ADHD in 5.3% of the comments. The self-attribution of behavioural patterns varied significantly, depending on the usefulness of the videos, with personal experience videos showing the most comments on self-attribution of behavioural patterns (102/600, 17% of comments, P<.001). For the self-attribution of ADHD, we found no significant difference depending on the usefulness of the videos (P=.359).

Conclusions:

A high proportion of ADHD-related TikTok videos are misleading and a high percentage of viewers seem to self-identify with the symptoms and behaviours presented. Self-identification is most common in videos on personal experiences, but also occurs in misleading videos, potentially increasing misdiagnosis. This highlights the need to critically evaluate health information on social media and for healthcare professionals to address misconceptions arising from these platforms.