Canty Michael J, Breitbart Sara, Siegel Lauren, Fehlings Darcy, Milo-Manson Golda, Alotaibi Naif M, Ibrahim George M
Division of Neurosurgery, The Hospital for Sick Children, Toronto, Ontario, M5G 1H4, Canada.
Neurosciences and Mental Health Program, The Hospital for Sick Children, Toronto, Ontario, Canada.
Childs Nerv Syst. 2019 Nov;35(11):2179-2185. doi: 10.1007/s00381-019-04197-x. Epub 2019 May 11.
Selective dorsal rhizotomy (SDR) is a surgical treatment for spasticity, primarily in cerebral palsy (CP). There is a growing trend for patients to seek medical information from their peers on social media platforms. This study qualitatively and quantitatively assessed the use of social media as an information-sharing and support-seeking tool by patients and caregivers.
A search was performed on Facebook, Twitter, and YouTube. Public information was quantitatively assessed by category, users, year of creation, and country of origin. Representative samples of comments and posts were then qualitatively assessed by thematic analysis.
One hundred eighty-five Facebook groups and pages, 97 YouTube videos, and 14 Twitter accounts were identified, based in 13 countries. SDR and CP groups had a mean membership of 3063 and 2339, respectively; SDR and CP pages had a mean number of "likes" of 1650 and 10,711, respectively. Total YouTube video views were 593,135 (mean 6115). Total Twitter followers were 62,609 (mean 2160). Qualitative analysis identified seven categories of comments: emotional support and forming connections (22.34%), sharing information and advice (15.96%), appreciation and successes (31.91%), challenges and difficulties (8.51%), advertising/offering services (4.79%), inequities and access (4.79%), and social media as a second opinion (11.7%).
This study outlines the use of social media platforms in the distribution of information regarding SDR. We highlight the importance placed by patients and caregivers on the advice of their peers. The current report should inform healthcare providers' interactions with patients with respect to information seeking and provision of support.
选择性背根切断术（SDR）是一种主要用于治疗脑瘫（CP）所致痉挛的外科手术。患者通过社交媒体平台向同龄人寻求医疗信息的趋势日益增长。本研究对患者及护理人员将社交媒体用作信息共享和寻求支持工具的情况进行了定性和定量评估。
在脸书、推特和优兔上进行搜索。通过类别、用户、创建年份和来源国对公开信息进行定量评估。然后通过主题分析对评论和帖子的代表性样本进行定性评估。
共识别出185个脸书群组和页面、97个优兔视频以及14个推特账户，分布于13个国家。SDR群组和CP群组的平均成员数分别为3063人和2339人；SDR页面和CP页面的平均“点赞”数分别为1650次和10711次。优兔视频的总观看次数为593135次（平均6115次）。推特的总关注者人数为62609人（平均2160人）。定性分析确定了七类评论：情感支持与建立联系（22.34%）、分享信息与建议（15.96%）、赞赏与成功（31.91%）、挑战与困难（8.51%）、广告/提供服务（4.79%）、不平等与获取（4.79%）以及将社交媒体作为第二种观点（11.7%）。
本研究概述了社交媒体平台在传播有关SDR信息方面的应用。我们强调了患者及护理人员对同龄人建议的重视。本报告应为医疗保健提供者在患者寻求信息和提供支持方面的互动提供参考。
