The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey

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• 作者：Robyn Jacobs^a ; Leanne Boyd^b ; Kirsty Brennan^a ; C.K. Sinha^a ; Stefano Giuliani^a ; ^{stefano.giuliani@nhs.net" class="auth_mail" title="E-mail the corresponding author}
• 关键词：ARM ; anorectal malformation ; CDH ; congenital diaphragmatic hernia ; CHD ; congenital heart disease ; HCP ; healthcare professional ; HS/ES ; hypospadias/epispadias ; MDT ; multidisciplinary team
• 刊名：Journal of Pediatric Surgery
• 出版年：2016
• 出版时间：November 2016
• 年：2016
• 卷：51
• 期：11
• 页码：1766-1771
• 全文大小：984 K

文摘

We aimed to define characteristics and needs of Facebook users in relation to congenital anomalies.

Methods

Cross-sectional analysis of Facebook related to four congenital anomalies: anorectal malformation (ARM), congenital diaphragmatic hernia (CDH), congenital heart disease (CHD) and hypospadias/epispadias (HS/ES). A keyword search was performed to identify relevant Groups/Pages. An anonymous survey was posted to obtain quantitative/qualitative data on users and their healthcare needs.

Results

54 Groups and 24 Pages were identified (ARM: 10 Groups; CDH: 9 Groups, 7 Pages; CHD: 32 Groups, 17 Pages; HS/ES: 3 Groups), with 16,191 Group members and 48,766 Page likes. 868/1103 (79%) of respondents were parents. Male:female ratio was 1:10.9. 65% of the users were 26–40 years old. Common reasons for joining these Groups/Pages included: seeking support, education, making friends, and providing support to others. 932/1103 (84%) would like healthcare professionals (HCPs) to actively participate in their Group. 31% of the respondents felt that they did not receive enough support from their healthcare system. 97% of the respondents would like to join a Group linked to their primary hospital.

Conclusions

Facebook Groups/Pages related to congenital anomalies are highly populated and active. There is a need for HCPs and policy makers to better understand and participate in social media to support families and improve patient care.