Khouri Joseph S, McCheyne Melisande J, Morrison Clinton S
Cleft Palate Craniofac J. 2018 Aug;55(7):974-976. doi: 10.1597/16-156. Epub 2018 Feb 22.
Many societies and organizations are using social media to reach their target audience. The extent to which parents of patients with craniofacial anomalies use social media has yet to be determined. The goal of this study is to characterize and describe the use of social media by the parents of children with cleft lip and palate as it pertains to the care of their child.
Parents or guardian of all patients presenting for initial consultation regarding a child's congenital cleft anomaly were contacted by phone or mail to complete a survey regarding their use of social media vis-à-vis their child's cleft anomaly. Participants were asked to answer a 19-question survey.
Thirty-two families were contacted and 25 surveys were completed. Ninety-two percent of respondents used social media to learn about their child's diagnosis. Facebook (76%) and blogs (24%) were the most commonly accessed social media outlets, followed by Instagram (8%). Education about the diagnosis and treatment of cleft pathology (87%) was the most common reason for accessing social media, followed by companionship and support (56%), and advice about perioperative care (52%). Almost half (43%) of parents used social media to obtain information on their caregiver and treatment team, and 26% of parents used information gained on social media to guide their decision on where to seek care.
Social media is a readily available resource, one that will certainly shape the experiences of our patients and families for years to come.
许多社会机构和组织都在利用社交媒体来接触他们的目标受众。患有颅面畸形患者的父母使用社交媒体的程度尚未确定。本研究的目的是描述唇腭裂患儿父母使用社交媒体与孩子护理相关的情况。
通过电话或邮件联系所有因孩子先天性腭裂畸形前来进行初次咨询的患者的父母或监护人，以完成一项关于他们使用社交媒体与孩子腭裂畸形相关情况的调查。参与者被要求回答一项包含19个问题的调查。
联系了32个家庭，完成了25份调查问卷。92%的受访者使用社交媒体了解孩子的诊断情况。脸书（76%）和博客（24%）是最常访问的社交媒体平台，其次是照片墙（8%）。获取腭裂病理诊断和治疗方面的知识（87%）是访问社交媒体最常见的原因，其次是陪伴和支持（56%）以及围手术期护理建议（52%）。近一半（43%）的父母使用社交媒体获取关于他们的医护人员和治疗团队的信息，26%的父母利用在社交媒体上获得的信息来指导他们选择就医地点的决定。
社交媒体是一种随时可用的资源，肯定会在未来几年塑造我们患者及其家庭的就医体验。
