Social media has grown exponentially in recent years and gained popularity among not only internet users, but also researchers. According to reports by the Pew Research Center's Internet & American Life Project, a vast majority of U.S. adults use social media sites to access and share information (PewInternet, 2014). Social media, also referred to as Web 2.0, offers a platform for users to publish, share, discuss, network, and modify user-generated content. The current social media landscape offers thousands of sites; however, the most popular are the ones used for networking, such as Facebook and Twitter (PewInternet, 2016).
Social media has also changed people's information-seeking behavior, especially when dealing with health care. In the United States, 72 percent of adults access the internet for medical information, and 26 percent go online to learn about others’ health experience (PewResearch, 2016). People living with a chronic disease are more likely to access social media to connect with others (PewInternet, 2011).
Tinnitus can affect an individual's quality of life, and leads to many debilitating problems such as emotional difficulties, problems in social interactions, sleep deprivation, and reduced overall health (Am J Otolaryngol. 2000;2:287). However, many individuals with tinnitus are not bothered by the sound and do not seek medical help. About 50 million Americans (16%) experience tinnitus, 16 million of whom seek medical help, and another two million live with distressing tinnitus that restricts them from enjoying normal lives (ATA, 2011).
Social scientists have recently shown immense interest in social media studies in hearing health care, especially social media utilization among individuals with hearing impairment who use amplification devices such as hearing aids or cochlear implants (CIs). The CI community's social media engagement revealed that the community connects with various resources to seek support and share personal experiences (J Am Acad Audiol. 2015;26(2):197). Hearing aid users and their families were also reported to use social media extensively for various purposes like gathering information and seeking advice and support (Am J Audiol. 2017;26:1).
Since tinnitus is often associated with hearing loss, it may be conjectured that people with tinnitus also show interest in social media. The purpose of this survey was to quantify and analyze the social media utilization of individuals living with tinnitus. Understanding the online activity of the tinnitus community may provide powerful insights into its needs, available opportunities for networking and support, and options for aural rehabilitation.
To investigate how individuals with tinnitus are accessing and using social media, a systematic survey of online tinnitus-related social media searches was conducted in April 2017. An IRB approval was obtained from New Mexico State University in Las Cruces, NM.
The fundamental approach used in this survey was similar to that used in our previous study (Am J Audiol. 2017). Four social media platforms and two social media websites were chosen for this study. The social media platforms included Facebook Pages, Facebook groups, Twitter, and YouTube. The keyword “tinnitus” was used in each platform, and the sources in the search results were noted. The sources were included in the survey if they had the term “tinnitus” in the url link, title and/or description of the web pages. The social media sources were included if they had:
- ≥100 “likes” and a minimum of 10 posts for Facebook Pages,
- ≥100 members for Facebook groups,
- at least 100 followers for Twitter accounts and a minimum of 20 posted tweets, and
- a minimum of 100 views for YouTube accounts appearing in the first 20 pages of search results.
To identify tinnitus-related forums and blogs, the keywords “tinnitus and forum” and “tinnitus and blog” were used in popular search engines such as Google, Yahoo, and Bing. The inclusion criteria for social media websites comprised (1) a blog, if they displayed the term “blog” in the url link and/or title, and (2) a forum, with communication related to hearing aids as described in the title or description of the website.
All items were manually scraped from the publicly available social media sources. Social media activities were measured by the following indices: number of “likes” for Facebook groups, number of “likes” for Facebook Pages, number of followers and tweets for Twitter accounts, and number of views for YouTube videos.
Posts from all social media sources were assigned to functional categories according to the nature of the posts. Seven categories were identified: (1) information & support (I&S), (2) personal story (PS), (3) research (Re), (4) service provider (SP), (5) sound therapy (ST), (6) tinnitus-related product (TR), and (7) music and arts (M&A). The category descriptions are in Table 1.
A total of 337 tinnitus-related social media sources were identified, of which 198 YouTube videos, 51 Twitter accounts, 37 Facebook Pages, and 35 Facebook groups met the inclusion criteria and were included in the study.
YouTube had the highest level of activity in the tinnitus community. The 198 YouTube videos aggregated more than 19 million views and gathered 88,375 “likes” at the time of the survey. The top 10 percent videos (n=20), based on the index of total number of views, got over 13 million counts. The most popular video, a 12-hour white noise sound therapy to alleviate tinnitus symptoms, gathered almost six million views.
Twitter, another popular platform, published a total of 367,558 tweets, with more than 176,408 followers of tinnitus-related accounts at the time of the survey. The top 10 percent Twitter accounts were identified based on the highest number of followers and published tweets. The top Twitter accounts (n=5 accounts) contributed to 69 percent of the total number of Twitter followers. The most popular Twitter accounts, based both on followership and the highest number of tweets, published posts on tinnitus treatment that were allegedly evidence-based.
The 37 tinnitus-related Facebook Pages had a total of 114,572 “likes” at the time of the survey. Based on the number of “likes”, the top 10 percent of Facebook Pages (n=4 Pages) contributed to 51.8 percent of the total number of “likes”. The top Facebook Page with the highest number of “likes” (n=23,126) published posts on tinnitus-related products allegedly recommended by otolaryngologists.
Of the 35 tinnitus-related Facebook groups, only 11.4 percent (n=4 pages) were open access, meaning anyone can join the group and all content can be viewed by the public. The remaining 88.6 percent (n=31 groups) were closed-access groups. In this survey, only data from open-access groups were investigated, where information was freely available. The tinnitus-related Facebook groups identified at the time of the survey had a total of 38,571 group members. The top 10 percent Facebook groups (n=4 groups) contributed to 55.6 percent of the total number of membership.
Six tinnitus-related forums and 10 blogs were also identified.
The social media sources were classified according to the nature of the posts to identify how the tinnitus community utilizes social media, and each source was assigned one of seven functional categories. Figure 1 shows the utilization patterns of tinnitus-related platforms and websites by the tinnitus community.
Most YouTube videos had information and support (31%) and sound therapy (30%). Twitter was used for sharing information and support (29%) and personal stories (27%); 38 percent of Facebook Pages were used to offer information and support. Service providers (such as ENT doctors, audiologists, or healers) who offered services to manage or cure tinnitus dominated Facebook Pages (27%). Only four Facebook groups were open access, from which data could be analyzed, and they contributed to music and arts (50%) and information and support (50%). The I&S functional category was frequently observed in forums (83%) and blogs (67%). Figure 2 shows the tinnitus community's social media utilization pattern across different platforms.
This survey indicates that the tinnitus community engages in social media for many purposes, and its strongest digital presence is on YouTube and Twitter.
The most common and popular functional category seen in the social media sources was information and support (see Table 1). Thirty-eight percent of Facebook Pages, 31 percent of YouTube videos, and 29 percent of Twitter handles published posts that offered support and provided information on tinnitus. Among the websites, 83 percent of forums and 67 percent of blogs contained tinnitus information and support, suggesting a sense of care within the community. Accounts from service providers were only seen in Facebook pages (27%) and Twitter (12%). Personal experiences of tinnitus were shared on Twitter (27%) and YouTube (21%).
In the survey, the authors came across many posts that prompted questions about the veracity of the information, particularly on some tinnitus therapy posts that were not supported by evidence-based practice. However, the present study did not attempt to judge the quality and accuracy of information shared in social media platforms. The findings from this survey could not be compared with any studies due to lack of published data on tinnitus. Social media research has its own inherent flaws, and this survey also had limitations, as discussed in our previous study (Am J Audiol. 2017).
The current pattern of social media utilization by the tinnitus community suggests that individuals and families living with tinnitus may find relevant information and support from Facebook Pages, YouTube, and Twitter. Twitter and blogs are also excellent sources to learn about personal experiences about tinnitus. Facebook Pages may be accessed to find information about local health care professionals who offer tinnitus treatment services.
Social media is a dynamic space where information changes every day—even every moment. This survey offers new and important insights into tinnitus-related conversations in social media that could help clinicians in tinnitus counselling and patients in finding necessary support.