Social media utilization in the cochlear implant community.

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.