CTEV is considered the most common serious musculoskeletal birth defect across the globe [5,11]. Considering the high prevalence of the disease, the low level of treatment within LMIC, and ability of the disease to harm in ways beyond the physical level, there is great opportunity for improvement in current management [6,12]. Multiple studies have been done comparing the Ponseti method to other treatment types such as the French method; however, the Ponseti method continues to produce the best outcomes and satisfaction [13–18]. Despite an adequate method to treat clubfoot, patients and families continue to face uncertainty and fear when receiving this diagnosis about[19,20]. One author described their experience as a “stressful, complicated journey.” Online social communities have the ability to provide an avenue of relief and connection with those across the globe . The online community with respect to clubfoot has a presence in over 50 countries, spans multiple platforms, and unites the perspectives of organizations, families, and patients.
Instagram has an active social media clubfoot community. The authors of the posts predominantly (1,320/1,440, 92%) post from the United States, the United Kingdom, and Australia (Fig 3). Despite this, over 40 different countries were represented and thus giving this community a far-reaching influence. These posts were shared predominantly (1432/1499, 95.5%) from personal accounts and contained a positive tone (1157/1499, 77.2%). Given the positive nature of these posts and focus on the patient experience (893/1499, 59.6%), the stories shared on Instagram indicate the platform has provided individuals a forum to share the daily obstacles and updates. Posts are rarely shared by physicians, which perhaps, has allowed a sense of vulnerability to develop within the Instagram community. One individual with a child diagnosed with clubfoot commented that Instagram has allowed her to see adults with clubfoot do “amazing things” and has given her confidence that one day her child will also be able to do those things (Anonymous, unpublished).
Twitter similarly has an active clubfoot community but with a different demographic. Many of the posts were made from within the United States, but as compared to Instagram, were not shared from personal accounts but primarily from organizations that are based within the U.S and have a large global reach. One public account for a large, international organization authored the highest number of tweets (168/493) and is based in the United States, however, also conducts work in 26 other countries across the globe thus showing that location data may be skewed towards higher income countries . The included tweets were most frequently advertisements (374/493, 75.8%), many of which were focused on fundraising. With a much smaller influence from personal accounts and posts focused on patient experience, the Twitter community is one of education, awareness, and fundraising. Physicians had an underwhelming presence on Twitter but may be more active on other social media sites not included in this study . It is also plausible that the content shared by the organizations on Twitter were authored by physicians and other providers working within the organizations and thus may represent a similar viewpoint. The demographics and topics represented within this platform form a pillar of the clubfoot social media community, one that emphasizes the scientific progress in the treatment and care for those with clubfoot .
Active treatment posts from both Instagram and Twitter were analyzed (Fig 2) for the type of content and treatment shown. Ponseti casting and bracing posts made up over 45% of active treatment posts on Instagram and over 50% of active treatment posts on Twitter. Post-treatment posts frequently showed children riding bikes, running, standing, and even displaying their feet with a clear sense of delight in their facial expressions. This community is one of pride for the treatment that is able to be offered, and the outcomes for many involved. It is positive and often described as an oasis in the midst of trials. One individual said "I find it so refreshing that I feel so connected to each of the [other] mom's journeys" in regard to how unifying the community can be in hard times (Anonymous, unpublished).
While the combination of these two platforms create the image of a holistic community with collaboration between physicians, patients, researchers, and families - the reality is that there is little communication between them. The differences in content posted about and the demographics of the posters highlight this point. With little representation of organizations on Instagram and a smaller portion of posts highlighting the patient experience on Twitter, a divide has been created. Are these communities then at a loss for the lack of collaboration between one another? And can steps be taken to remediate this disunity?
Worth considering first is if this virtual distance between the two groups has been beneficial for those directly affected by clubfoot by creating an open space for vulnerability and community. Without the influence of healthcare providers and researchers this community may have been given the room needed to develop. However, given the positive tone of many of these posts and numerous photos of patients and families smiling, it is reasonable to hypothesize that many have found their interactions with their healthcare system to be positive. This in addition to literature demonstrating that patients using social media for health-related topics are often driven by a search for social support, health information, as well as exchanging advice supports the notion that collaboration between the two groups may be vital [24–26].
Geographic representation: Given the distribution of both of the online social media communities represented in Figs 3A, 3B, and 3C, it is clear that the expanse of this clubfoot community is far-reaching. In an era where collaboration across the globe can be instantaneous, representation from individuals from different countries and their unique viewpoints could not be of higher importance. Within the clubfoot community, 53 countries had one or many individuals author at least one post. These 53 countries, however, only represent where the author is based in and does not include the numerous countries that individual or organization represent. If united perhaps through an online forum or another platform, the wide expanse of clubfoot in social media could be used to deepen the sense of community it already has started to develop .
This study is not without limitations. Due to the nature of the social media platforms used, only public posts with the selected hashtags were analyzed. Thus, a large number of posts may have been excluded if they were made private or did not include a relevant hashtag. Yet, the search across the two platforms included a total of 1992 posts, generating a representative sample for analysis. In general, social media users tend to highlight positive aspects of their subject, potentially creating a bias toward positive outcomes while failing to capture the negative experiences that patients may face . Although other social media sites such as Facebook and Snapchat are popular among social media users, Instagram and Twitter were chosen for their ability to provide a large data set of public posts with relevant hashtags that could be objectively analyzed for content.