PP1401 - Dizzy Discussions! Exploring Social Media Use in the Vestibular Disorder Community

Abstract:
Vestibular disorders impact all ages and are often debilitating conditions. Despite their prevalence, literature on this community’s online behavior is limited. This study investigates the social media usage of individuals impacted by vestibular disorders. We selected popular social platforms including Instagram, Reddit, YouTube, Facebook, TikTok, and Quora. Data collection began on September 26, 2024, targeting English-language content. To date, 650 sources have been collected. Data analysis will include thematic classifications to identify trends and patterns in online conversations related to vestibular disorders. Ultimately, we hypothesize that this information will enhance understanding of the current needs of the vestibular disorders community.

Summary:
Objectives and Rationale
The purpose of this study is to explore social media use within the vestibular disorders community to better understand how individuals affected by these conditions share information, seek support, and engage online. These disorders not only affect the individual’s quality of life but also impact the caregivers. Past research suggest that social media can play a significant role in providing information and support for individuals with health disorders (Choudhury et al., 2017; Choudhury et al., 2018; Deshpande et al., 2018). However, little research has been done on social media use among the broader vestibular disorder community. Ulep et al. (2022) conducted a systematic review examining the use of social media among patients with hearing loss, tinnitus, and vestibular disorders, addressing these conditions collectively rather than focusing solely on vestibular disorders. The current study seeks to fill that gap by analyzing social media discussions to identify the key themes that resonate within this community and to assess the value of social media as a source of support and information for those with vestibular disorders. 

Research Design and Methods
We used Statista data to identify the most popular social media platforms worldwide in 2024, focusing on Facebook, YouTube, Instagram, and TikTok. We also included additional unlisted platforms—X/Twitter, Quora, and Reddit—due to their high user engagement, demographic diversity, and potential for marketing outreach. Data collection began on September 26, 2024, with two researchers manually scraping, collating, and analyzing relevant items independently. Social media activity was collected using appropriate search terms and measured engagement metrics such as “likes,” followers, and thread/post counts, gathering around 650 sources so far. We only included English content from publicly available groups to ensure availability and relevance.

Initially, we analyzed quantitative metrics and then conducted thematic analysis to generate qualitative insights. This analysis identified seven primary themes: (1) Information Sharing, (2) Personal Story, (3) Advancements, (4) Service Provider, (5) Advice & Support, and (6) Corporate. These themes reflect the main areas of focus within the vestibular disorder community and highlight social media’s role as a multifaceted engagement platform. Data collection and analysis are ongoing as we seek to map the patterns of psychosocial behavior and community interactions online.

Results and Conclusions
Our analysis so far indicates that social media is a rich and multifaceted resource for individuals affected by vestibular disorders, providing a space for emotional support, information exchange, and resource sharing. As social media increasingly becomes a popular information source, clinicians could potentially guide patients toward reputable online resources to enhance patient care. Social media may also offer readily accessible information and peer support for patients and caregivers, which is crucial given the lack of awareness and resources often reported by those with vestibular disorders. We hypothesize that with appropriate guidance, social media can play a supportive role in the healthcare journey for those impacted by vestibular disorders.

Plan
Data collection is complete, and analysis is ongoing. We will finish the analysis before February 3, and complete results and conclusions will be presented.