Background YouTube’s online archive of video testimonials related to health information are more commonly viewed than those developed by clinicians and professional groups, suggesting the importance of the patient experience to viewers. We specifically sought to examine the accuracy of information on, and projected acceptability of, the intrauterine device (IUD) from these YouTube testimonials.
Methods We searched YouTube for videos about individual uploaders’ IUD experiences, using the search terms ‘intrauterine device’, ‘IUD’, ‘Mirena’ and ‘Paragard’. Given interest in user testimonials, we excluded professional and instructional videos belonging to commercial or non-profit entities. Two reviewers independently analysed the videos using a structured guide, with attention to inaccurate information.
Results Of 86 identified videos, four videos featured clinicians and were excluded; 62 met inclusion criteria. Interrater agreement on IUD portrayal was good (K=0.73). Young (mean age 25, range 19–38, years), white (75%), nulliparous (61%) women primarily uploaded content. Most described placement of the LNG-IUS (65%), were posted within 1 month of insertion (45%), and mentioned side effects (66%) – bleeding, pain, and partner sensation of the strings. About one-third of videos contained inaccurate information (34%) and were thought to project an overall negative experience (30%). Videos portraying IUDs negatively were associated with inaccurate information and/or mention of side effects.
Conclusion While one-third of IUD user testimonials on YouTube contained inaccurate information, the majority of IUD experiences were perceived by our study viewers to be positive.
- intrauterine devices
- intrauterine systems
- long-acting reversible contraception
- social media
- contraception behavior
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Contributors All the authors contributed to the manuscript as follows: BTN: conceived the study, designed the protocol, developed analysis tools and databases, obtained IRB approval, collected all data, oversaw video interpretation, analysed data, participated in abstract writing, authored the manuscript, and completed all revision requests. BTN is responsible for the overall content as guarantor. AJA: assisted with setting up the database for data collection, interpreted videos, participated in analysis and interpretation of data, led abstract writing, and reviewed the manuscript in its early stages.Collaborators: JTJ: provided initial oversight of the study design and interpretation of the data, as well as providing insights relevant to manuscript writing. RN: helped to analyse video data.
Disclaimer The study findings described in this article have not been published in any other journal.
Competing interests None declared.
Ethics approval Oregon Health & Science University.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement All the videos examined in this study are available publicly on YouTube.com.
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