9. “Stop Gaslighting Your Patients”: User Experience of IUDs on TikTok

Background TikTok is the largest growing social media platform with approximately 80 million monthly users in the United States. The majority of TikTok users are between the ages of 16-24. TikTok offers an opportunity for patients to access and share IUD-related health information as well as personal experiences with IUDs, but the content, attitudes, and user characteristics of these videos is unknown. Methods We conducted a quantitative and qualitative assessment of videos that appeared when searching for “IUD” on the TikTok platform between July 2019- August 2022. Eligibility criteria were content relevant to IUDs that was spoken and/or written in English. We obtained descriptive characteristics of the videos including classification type (personal experience, educational, other), healthcare expertise of content creator, and mention of IUD types, IUD insertion, side effects, complications, and removal. We used one-way ANOVA testing to compare the effect of video types on likes and views. Results Of the 354 videos that met inclusion criteria, the majority were created by non-healthcare professionals (77%) and mentioned the creator's personal experience with IUDs (68%). However, videos that were educational (5%) or created by healthcare providers (23%) averaged more likes and views than other video classification and user types. There was a significant difference in average likes and views between healthcare expertise and non-healthcare expertise groups (p< 0.001). Across all videos, common content areas included IUD insertion (45%), side effects (31%), and removal (25%). Of the videos that mentioned insertion, the majority described the experience as painful. Perceived gaps in knowledge about the insertion procedure and feeling that providers did not adequately explain or prepare patients for the procedure contributed to video creators’ negative experiences with IUD insertion and motivated them to share their experiences with IUDs on TikTok. Video creators often relied on information that they found on social media to educate themselves about the IUD insertion process. TikTok users expressed frustration at unacceptable levels of pain during the insertion procedure. Conclusions TikTok may serve as a useful resource for clinicians to understand the influence of social media on patients’ healthcare decisions as well as an opportunity for clinicians to contribute to the spread of accurate healthcare information online.