An Exploration of Online Support Community Participation Among Patients With Vestibular Disorders

Abstract

Objectives/Hypothesis: To formally document online support community (OSC) use among patients with vestibular symptoms and gain an appreciation for the perceived influence of participation on psychosocial outcomes and the impact on medical decision-making.Study Design: Self reported internet-based questionnaire.Methods: The Facebook search function was paired with a comprehensive list of vestibular diagnoses to systematically collect publicly available information on vestibular OSCs. Next, a survey was designed to gather clinicodemographic information, OSC characteristics, participation measures, perceived outcomes, and influence on medical decision-making. The anonymous instrument was posted to two OSCs that provide support for patients with general vestibular symptoms.Results: Seventy-three OSCs were identified with >250,000 cumulative members and >10,000 posts per month. The survey was completed by 549 participants, a cohort of primarily educated middle-aged (median = 50, interquartile range 40-60), non-Hispanic white (84%), and female (89%) participants. The participants' most cited initial motivation and achieved goal of participants was to hear from others with the same diagnosis (89% and 88%, respectively). Daily users and those who reported seeing ≥5 providers before receiving a diagnosis indicated that OSC utilization significantly influenced their requested medical treatments (72% daily vs. 61% nondaily, P = .012; 61% <5 providers vs. 71% ≥5 providers P = .019, respectively). Most participants agreed that OSC engagement provides emotional support (74%) and helps to develop coping strategies (68%). Membership of ≥1 year was associated with a higher rate of learned coping skills (61% membership <1-year vs. 71% ≥1-year P = .016).Conclusions: The use of OSCs is widespread among vestibular diagnoses. A survey of two OSCs suggests these groups provide a significant source of peer support and can influence users' ability to interface with the medical system.

Social Media Use in Hearing Loss, Tinnitus, and Vestibular Disorders: A Systematic Review

“…Moreover, only text data were analyzed in seven studies (e.g., Twitter tweets, Facebook posts, and blog posts), followed by video and text data in five studies, and only video data in four studies. The remaining studies analyzed self-reported questionnaire data (Manchaiah et al, 2020b;Manchaiah et al, 2020b;Vanstrum et al, 2021). <<Table 2 near here>>…”

“…Such techniques may aid in the understanding of results amongst hearing healthcare professionals as they are familiar with qualitative analysis techniques. The remaining studies that conducted surveys performed quantitative analyses by using descriptive statistics to examine survey responses (Manchaiah et al, 2020b;Manchaiah et al, 2020d;Vanstrum et al, 2021).…”

“…The main video source was medical ad/profit-oriented companies (60.2%). Kimball et al (2019), Manchaiah et al (2020d), andVanstrum et al (2021) presented demographic data regarding study participants who completed the study survey (e.g., geographic location, age, and gender). Kimball et al (2019) reported participants being 18 years or older, which was determined by viewing Facebook profiles.…”

“…Lastly, Vanstrum et al (2021) analyzed two online support communities on Facebook that provide support for patients with general vestibular symptoms. The cohort of 549 participants consisted of primarily educated middle-aged (median = 50, interquartile range 40-60), non-Hispanic white (84%), and female (89%) participants.…”

“…Most participants received their primary diagnosis between >1 and 5 years previously (45%). Vanstrum et al (2021) also identified the presence of online support communities on Facebook with over 250,000 cumulative members and 10,000 posts among seventy-three online support communities. The remaining studies analyzed the general social media environment without restrictions on populations.…”