Social Media Utilization in the Cochlear Implant Community

Abstract

Background More than 200,000 individuals worldwide have received a cochlear implant (CI). Social media Websites may provide a paramedical community for those who possess or are interested in a CI. The utilization patterns of social media by the CI community, however, have not been thoroughly investigated. Purpose The purpose of this study was to investigate participation of the CI community in social media Websites. Research Design We conducted a systematic survey of online CI-related social media sources. Using standard search engines, the search terms cochlear implant, auditory implant, forum, and blog identified relevant social media platforms and Websites. Social media participation was quantified by indices of membership and posts. Study Sample Social media sources included Facebook, Twitter, YouTube, blogs, and online forums. Each source was assigned one of six functional categories based on its description. Intervention No intervention was performed. Data Collection and Analysis We conducted all online searches in February 2014. Total counts of each CI-related social media source were summed, and descriptive statistics were calculated. Results More than 350 sources were identified, including 60 Facebook groups, 36 Facebook pages, 48 Twitter accounts, 121 YouTube videos, 13 forums, and 95 blogs. The most active online communities were Twitter accounts, which totaled 35,577 members, and Facebook groups, which totaled 17,971 members. CI users participated in Facebook groups primarily for general information/support (68%). Online forums were the next most active online communities by membership. The largest forum contained approximately 9,500 topics with roughly 127,000 posts. CI users primarily shared personal stories through blogs (92%), Twitter (71%), and YouTube (62%). Conclusions The CI community engages in the use of a wide range of online social media sources. The CI community uses social media for support, advocacy, rehabilitation information, research endeavors, and sharing of personal experiences. Future studies are needed to investigate how social media Websites may be harnessed to improve patient-provider relationships and potentially used to augment patient education.

A Quantitative Analysis of Social Media to Determine Trends in Brain Tumor Care and Treatment

“…Social media is an increasingly common way to learn, discuss, and share information [1,[3][4]8]. Previous studies have analyzed social media utilization in brain aneurysms, vagal nerve stimulators placement, and pediatric hydrocephalus, but, to our knowledge, there has not been an evaluation of social media utilization for brain tumors, particularly glioblastoma [1,[9][10][11][12][13][14].…”

“…The returned social media content was filtered for relevance and for English language. The inclusion criteria for social media content were determined by activity parameters similar to those proposed by Saxena et al [ 3 ]. These were utilized to ensure that the included content had sufficient engagement for analysis.…”

“…With nearly 75% of Americans using YouTube, and a similar number active on Facebook, social media sites can provide individuals with a virtual community [2]. Patients have increasingly adopted the use of social media for educational purposes as well as emotional support for their healthcare concerns [2][3][4][5][6].…”

Digital revolution in depression: A technologies update for clinicians

“…We drew from previous social media studies in medicine [37,38]. Manual electronic searches were performed by ML in Google, Tumblr, Facebook, and YouTube.…”

Large Vestibular Aqueduct Syndrome: Parents’ and Audiologists’ Perspectives

“…It is possible that parents of children with LVAS have had similar experiences with healthcare professionals. Parents who do not get appropriate support from their healthcare professionals may have to rely on the array of support sources for people with hearing loss, in particular those with cochlear implants, which are available on social media (Saxena et al, 2015). Stroebel and Swanepoel (2014) recommended that healthcare professionals should provide ongoing consultations and structured timelines throughout the diagnostic and habilitative processes to reduce uncertainty for parents of children with ANSD; these recommendations may also be helpful for families of children with LVAS.…”