Elkarim Ghassan Awad, Alotaibi Naif M, Samuel Nardin, Wang Shelly, Ibrahim George M, Fallah Aria, Weil Alexander G, Kulkarni Abhaya V
Division of Neurosurgery, Department of Surgery.
MD/PhD Program, University of Toronto.
J Neurosurg Pediatr. 2017 Aug;20(2):119-124. doi: 10.3171/2017.3.PEDS16552. Epub 2017 May 26.
OBJECTIVE A recent survey has shown that caregivers of children with shunt-treated hydrocephalus frequently use social media networks for support and information gathering. The objective of this study is to describe and assess social media utilization among users interested in hydrocephalus. METHODS Publicly accessible accounts and videos dedicated to the topic of hydrocephalus were comprehensively searched across 3 social media platforms (Facebook, Twitter, and YouTube) throughout March 2016. Summary statistics were calculated on standard metrics of social media popularity. A categorization framework to describe the purpose of pages, groups, accounts, channels, and videos was developed following the screening of 100 titles. Categorized data were analyzed using nonparametric tests for statistical significance. RESULTS The authors' search identified 30 Facebook pages, 213 Facebook groups, 17 Twitter accounts, and 253 YouTube videos. These platforms were run by patients, caregivers, nonprofit foundations, and patient support groups. Most accounts were from the United States (n = 196), followed by the United Kingdom (n = 31), Canada (n = 17), India (n = 15), and Germany (n = 12). The earliest accounts were created in 2007, and a peak of 65 new accounts were created in 2011. The total number of users in Facebook pages exceeded those in Facebook groups (p < 0.001). The majority of users in Facebook groups were in private groups, in contrast to public groups (p < 0.001). The YouTube videos with the highest median number of views were for surgical products and treatment procedures. CONCLUSIONS This study presents novel observations into the characteristics of social media use in the topic of hydrocephalus. Users interested in hydrocephalus seek privacy for support communications and are attracted to treatment procedure and surgical products videos. These findings provide insight into potential avenues of hydrocephalus outreach, support, or advocacy in social media.
目的 最近的一项调查显示，接受分流治疗的脑积水患儿的照料者经常使用社交媒体网络来获取支持和信息。本研究的目的是描述和评估对脑积水感兴趣的用户对社交媒体的使用情况。方法 2016年3月，在3个社交媒体平台（Facebook、Twitter和YouTube）上全面搜索了公开可用的与脑积水主题相关的账号和视频。计算了社交媒体人气标准指标的汇总统计数据。在筛选了100个标题后，制定了一个分类框架来描述页面、群组、账号、频道和视频的用途。使用非参数检验分析分类数据的统计学意义。结果 作者的搜索共识别出30个Facebook页面、213个Facebook群组、17个Twitter账号和253个YouTube视频。这些平台由患者、照料者、非营利基金会和患者支持团体运营。大多数账号来自美国（n = 196），其次是英国（n = 31）、加拿大（n = 17）、印度（n = 15）和德国（n = 12）。最早的账号创建于2007年，2011年创建的新账号达到峰值65个。Facebook页面中的用户总数超过了Facebook群组中的用户总数（p < 0.001）。与公共群组相比，Facebook群组中的大多数用户处于私密群组中（p < 0.001）。观看次数中位数最高的YouTube视频是关于手术产品和治疗程序的。结论 本研究对脑积水主题中社交媒体使用的特征提出了新的见解。对脑积水感兴趣的用户寻求私密的支持交流方式，并被治疗程序和手术产品视频所吸引。这些发现为社交媒体中脑积水宣传、支持或倡导的潜在途径提供了见解。
