“It’s Totally Okay to Be Sad, but Never Lose Hope”: Content Analysis of Infertility-Related Videos on YouTube in Relation to Viewer Preferences

Background: Infertility patients frequently use the internet to find fertility-related information and support from people in similar circumstances. YouTube is increasingly used as a source of health-related information and may influence health decision making. There have been no studies examining the content of infertility-related videos on YouTube. Objective: The purpose of this study was to (1) describe the content of highly viewed videos on YouTube related to infertility and (2) identify video characteristics that relate to viewer preference. Methods: Using the search term “infertility,” the 80 top-viewed YouTube videos and their viewing statistics (eg, views, likes, and comments) were collected. Videos that were non-English, unrelated to infertility, or had age restrictions were excluded. Content analysis was used to examine videos, employing a coding rubric that measured the presence or absence of video codes related to purpose, tone, and demographic and fertility characteristics (eg, sex, parity, stage of fertility treatment). Results: A total of 59 videos, with a median of 156,103 views, met the inclusion criteria and were categorized into 35 personal videos (35/59, 59%) and 24 informational-educational videos (24/59, 41%). Personal videos did not differ significantly from informational-educational videos on number of views, dislikes, subscriptions driven, or shares. However, personal videos had significantly more likes (P<.001) and comments (P<.001) than informational-educational videos. The purposes of the videos were treatment outcomes (33/59, 56%), sharing information (30/59, 51%), emotional aspects of infertility (20/59, 34%), and advice to others (6/59, 10%). The tones of the videos were positive (26/59, 44%), neutral (25/59, 42%), and mixed (8/59, 14%); there were no videos with negative tone. No videos contained only male posters. Videos with a positive tone did not differ from neutral videos in number of views, dislikes, subscriptions driven, or shares; however, positive videos had significantly more likes (P<.001) and comments (P<.001) than neutral videos. A majority (21/35, 60%) of posters of personal videos shared a pregnancy announcement. Conclusions: YouTube is a source of both technical and personal experience-based information about infertility. However, videos that include personal experiences may elicit greater viewer engagement. Positive videos and stories of treatment success may provide hope to viewers but could also create and perpetuate unrealistic expectations about the success rates of fertility treatment. (J Med Internet Res 2018;20(5):e10199) doi:10.2196/10199 J Med Internet Res 2018 | vol. 20 | iss. 5 | e10199 | p.1 http://www.jmir.org/2018/5/e10199/ (page number not for citation purposes) Kelly-Hedrick et al JOURNAL OF MEDICAL INTERNET RESEARCH


Introduction
Up to 1 in 6 Canadian couples may experience infertility [1], defined as the failure to achieve conception following at least 12 months of unprotected intercourse [2]. Prevalence rates are similar or higher in the United States and European countries, with estimates ranging from 10% to 28% [3][4][5][6][7]. The diagnosis and treatment of infertility may have adverse effects on psychological well-being and quality of life [8][9][10].
More than 85% of infertility patients search for Web-based infertility-related content [11][12][13]. They report using the Web to find experience-based information; to learn about others going through similar treatment [14]; and to gain emotional support, reduce isolation, and seek normalcy [15]. The internet is an increasingly common source of health-related information, with 72% of internet users using the Web for health information [16].
Social media allows internet users to connect with others online, facilitating communication and social support regarding health conditions [17]. YouTube is one such social media website that allows users to share video content and engage in discussion. YouTube is the most popular website for video sharing and the second most accessed website with over 1 billion users, reaching a global and diverse audience [18,19]. YouTube is a source of experience-based information on health topics [20,21] and the use of YouTube for social support relating to health topics has been found to relate to higher levels of health care-related empowerment and information engagement [22]. Therefore, examining the content of popular health-related videos on YouTube is of interest. Several studies have examined how YouTube videos characterize chronic health conditions, such as epilepsy [23], Alzheimer's disease [24], and chronic obstructive pulmonary disease [25]. These studies have evaluated level of viewership, discussion, and reliability of information presented in videos on YouTube [23,25,26]. There has not yet been an examination of infertility content on YouTube. As such, this is the first study to assess highly viewed infertility videos on YouTube to document their tone, purpose, and characteristics of posters and fertility-related variables, using content analysis. The coding scheme was based on other studies examining health-related content on YouTube [23,[25][26][27][28]. The study aimed to (1) describe the video content of the most highly viewed videos and (2) identify video characteristics that relate to viewer favorability (eg, video likes, shares). Doing so may provide a richer understanding of people's infertility experiences and purpose for posting infertility information on the internet. Indications of viewers' responses to videos, such as likes and dislikes, may give an indication of viewer preference.

Ethical Considerations
YouTube meets the criteria for a public online database as it is free, publicly accessible without requiring registration, and has a large membership size [18,29]. Consistent with past research [29,30], our institutional ethics board deemed ethics approval unnecessary as content relevant to this study was in the public domain. YouTube was accessed without a registered account to ensure accessed videos were publicly available and had no age restrictions.

Coding Rubric Development
The coding rubric for the video analysis was initially developed through a deductive approach. Specifically, we reviewed studies that used content analysis to examine health-related YouTube topics [23,[25][26][27][28]. Videos were coded as either personal, where the primary focus is on sharing experiences, or informational-educational, where the focus is to provide information. Other variables included (1) tone (positive, negative, neutral, or mixed), (2) purpose(s) of video (sharing information, emotional aspects of infertility, treatment outcomes, and advice to others), (3) whether the video has live people present (character video) or absent (noncharacter video), and (4) source of video, which indicates the type of YouTube channel that posted the video (personal account, organization's channel, news channel, or other type of channel). Before viewing videos, the coding team generated categories hypothesized to be relevant to infertility-related videos, such as the stage of fertility treatment of the poster(s) and parity of the poster(s). Two coders tested the rubric using 7 sets of 3 to 5 videos with low view counts. Over the course of this testing period, the codebook was modified until variables were refined and explicitly defined. Through an inductive process, new variables such as the code "pregnancy announcement" were added if agreed upon by both coders during the training process. Training videos were not included in the final dataset. The training period ended when the 2 coders reached agreement for all codes and code definitions (see Table 1 for codebook). Certain variables (purpose of video, type of informational video, and subtones in videos) were not mutually exclusive, and therefore codes could sum to more than 100%. Video statistics were collected for all videos in the sample. These included number of views, likes, dislikes, comments, date video was posted, transcript (generated by YouTube), subscriptions driven (number of people who subscribed to the channel following viewing of video), number of shares, length of video, number of subscribers to channel, account creation date, and total channel views (sum of views for all videos posted by user). YouTube channels are profiles for users to post their videos and share information about themselves and their videos.  Pregnancy results disclosed to spouse, friends, or family in video a 2 coders, n=14 training videos. b Codes for at least 1 coder were a constant; therefore, we were unable to calculate the kappa statistic.

Sample
In January 2017, the most-viewed infertility YouTube videos were identified using the search term "infertility" on YouTube on Google Chrome browser with the search history and cookies cleared [31]. We chose the term "infertility" to capture the most common, basic query a patient would be likely to search, as people generally use keywords and condition names when searching for health information online [32]. This search produced approximately 314,000 results. Videos were sorted by view count and the 80 most-viewed videos were selected for analysis. Previous research suggests over 90% of users click on results in the first 3 pages of a search [33]; therefore, we elected to include the first 4 pages of results to ensure selection of popular infertility videos most likely to be encountered (20 results per page). Data for each video were collected and stored in Microsoft Excel. When variable information was not provided for a video (eg, number of shares), it was coded as missing. The URL and title of video were saved as a reference during data analysis. Videos were excluded from the sample if they were non-English (n= 16), unrelated to infertility (n= 3), or had age-restricted access (n=2). This produced a final dataset of 59 videos. Refer to Figure 1 for an inclusion flowchart.
Approximately 20% of the final dataset (14/59, 24%) was independently coded by 2 coders (MKH and FB) to examine inter-rater reliability. Cohen kappa was used to evaluate inter-rater reliability (see Table 1 for kappa coefficients). Kappa coefficients ranged from .638 (substantial agreement) to 1.00 (near perfect agreement), reflecting satisfactory or excellent inter-rater reliability for health-related research [34]. All analysis was performed using SPSS Statistics 23 software (IMB Analytics). Median value and inter-quartile range were used for most video statistics to provide a measure of central tendency, which tends to be less influenced by skewed data. A similar approach has been used in previous research of health-related topics on YouTube [35][36][37].

Classification of Videos
The total sample of 59 videos ranged from 50 seconds to 40 min in length (mean 6.6 min, SD 7.10 min). Videos were collectively viewed almost 23 million times (median=156,103 views). Videos received more likes (median=525 likes) than dislikes (median=25.5 dislikes), with a median of 55 comments per video. Only 35 videos indicated number of shares, with a median of 105 shares per video (see Table 2 for video popularity statistics).

Purpose
A total of 33 of the personal videos (33/35, 94%) coded as "treatment outcomes" disclosed the outcome of a diagnosis, test, or treatment. For example, 1 woman filmed herself watching her pregnancy test turn positive and exclaimed: My heart is racing, okay, let's see. [ In some cases, videos discussing emotional aspects of infertility mentioned interactions with those not struggling with infertility. One couple, reflecting on their past infertility experiences, shared:

Whatever the situation, it is okay to be sad, but it's also important to be happy for others. And that was sometimes very...hard for me.
Similarly, some videos discussed the anxiety related to waiting for test results or preparing for treatment. One woman made a video the day she was preparing to undergo a hysterosalpingogram test and stated:

.what our parents and teachers and doctors aren't telling us, is when you get to a certain age, it is close to impossible to have a baby without fertility treatments and IVF.
Finally, 4 personal videos (4/35, 11%) were coded as 'advice to others,' reflecting recommendations or advice to viewers about concrete actions or decisions they should make regarding infertility. This advice was often based on personal experience. For example, 1 woman talking about her journey to get pregnant at age 40, suggested lifestyle changes to her viewers: When those posting conveyed hope or support to the viewer, the video was coded as encouraging, exemplified by the following statement: I think it's totally okay to be sad, but never lose hope. Don't ever get yourself down. I mean, we all have moments where we feel vulnerable and sad and upset and everything but let that just be a small moment of your time. Let happiness fill you.
Videos that incorporated humor included jokes and laughter. A man in 1 video bantered with a relative when disclosing a pregnancy announcement, "this time I'm not joking." Finally, a small number of videos contained statements of gratitude. In 1 video, a couple discussing their child and their second child soon to come, stated: After switching fertility doctors and undergoing treatment, the woman was able to achieve pregnancy, making the positive statement: I finally saw those two lines [on the pregnancy stick]...It was the greatest moment...It's the greatest thing to achieve getting pregnant when you haven't been able to...I will never take it for granted.
The 1 neutral video included an acupuncturist who shared her personal story on natural pregnancy, explaining the steps she took to conceive.

Informational-Educational Videos
The purpose of all 24 informational-educational videos was coded as sharing information and each was neutral in tone. Emotional aspects of infertility treatment and advice to viewers were each present in 2 videos. Over half of the videos contained information relating to infertility causes or detection (16/24, 67%) and/or medical procedures (14/24, 58%), whereas less than one-third discussed lifestyle factors (7/24, 29%) and/or psychological factors related to infertility (6/24, 25%).

Principal Findings
This study was the first to examine infertility-related videos on YouTube using a content analysis method. These videos had high numbers of comments, likes, shares, and subscriptions, indicating that many individuals seek out and engage with infertility-related information on YouTube. The videos were categorized into informational-educational videos and personal videos. Personal and informational-educational videos did not differ in number of views, supporting claims that people use YouTube for both health-related information [38] and social interaction and discussion [38,39]. However, personal videos did elicit more engagement as evidenced by more likes and comments.
This suggests that, compared with informational-educational videos, personal videos may resonate more strongly with viewers. One reason may be that personal videos allow people to observe others undergoing similar experiences to seek reassurance, normalization, and niche support [14,15,40]. In addition, these videos may provide a platform for the posters to share and possibly validate their own infertility experiences.
Viewers also showed greater engagement with positive videos, which garnered more likes and comments than neutral videos. This may indicate viewer preference for videos that convey a positive outlook related to fertility. Video messages showing positive fertility outcomes may increase hope and optimism in the viewer, but they may also give a false impression of the success rates of fertility treatment. In actuality, less than half of embryo transfers for in vitro fertilization result in a live birth in the United States and Canada, with rates dropping with increasing maternal age [41,42]. Reliance on YouTube for infertility information may foster unrealistic expectations regarding the success rates of treatment, which may influence treatment decisions [38,43]. As fertility patients frequently access the internet for information [13,14], research is needed to establish whether YouTube content can affect the perceptions of infertility treatment among fertility patients.
In line with research suggesting that men are less likely to share YouTube videos [39], there was an absence of videos containing men only. When men were present, they were always accompanied by their female partner or other people (eg, friends or family). This finding is consistent with research showing that online activity and communication about infertility is more common among women [44][45][46]. Although we found a lack of male characters in videos, it remains possible that men seek out infertility content through other online avenues, such as websites and discussion forums. Research is needed to determine whether men use YouTube to search for information related to infertility or if they prefer other online platforms.

Limitations and Future Directions
There are several limitations to the study and future directions to consider. As we only examined the content of high-rated videos, the results may not be generalizable to all infertility videos on YouTube. It is possible that less viewed and favored videos may also contain stories of negative experiences and treatment failures, which were mostly absent from highly viewed videos. YouTube videos with negative tones, such as sadness and anger, may be less viewed and preferred by viewers. Our study was a cross-sectional examination of videos and did not explore how video popularity changed over time. Due to the low number of videos where advice was offered to viewers, we were not able to assess quality of the information posted. Further research is needed to undertake such an assessment, as some studies have found health information on YouTube to be false or misleading [28,47,48]. Finally, as we analyzed publicly available content, we were only able to assess metrics available from YouTube and did not ask viewers their motivations for watching videos or the impact of these videos on their attitudes and beliefs. Future research should explore how infertile men and women search for videos, their reasons for doing so, and their reactions to the content of the videos.

Conclusion
This analysis establishes highly viewed YouTube videos as a source of both technical and experience-based information related to infertility. Viewers appeared to prefer and engage more with videos containing personal experiences and positive tones. Although these videos may provide hope to viewers by frequently sharing positive treatment outcomes such as pregnancy announcements, they may also create and perpetuate unrealistic expectations about the success rates of fertility treatments.