Link: http://www.ncbi.nlm.nih.gov/pubmed/27522307

J Pediatr Surg. 2016 Jul 28. pii: S0022-3468(16)30190-7. doi: 10.1016/j.jpedsurg.2016.07.008. [Epub ahead of print]
The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey.
Jacobs R1, Boyd L2, Brennan K1, Sinha CK1, Giuliani S3.
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Abstract
BACKGROUND:
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 26-40years 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.
Copyright © 2016 Elsevier Inc. All rights reserved.
KEYWORDS:
Anorectal malformation; Congenital anomalies; Congenital diaphragmatic hernia; Congenital heart disease; Epispadias; Facebook; Hypospadias; Online support groups; Social media
PMID: 27522307 DOI: 10.1016/j.jpedsurg.2016.07.008
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