title: The importance of social media for patients and families affected by congenital anomalies: A Facebook cross-sectional analysis and user survey.
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.
authors: Department of Paediatric and Neonatal Surgery, St. George's University Hospitals NHS Foundation Trust, London SW17 0QT, United Kingdom.
authors: Robyn
authors: R
authors: Jacobs
authors: St. George's University of London, Cranmer Terrace, London SW17 0RE, United Kingdom.
authors: Leanne
authors: L
authors: Boyd
authors: Department of Paediatric and Neonatal Surgery, St. George's University Hospitals NHS Foundation Trust, London SW17 0QT, United Kingdom.
authors: Kirsty
authors: K
authors: Brennan
authors: Department of Paediatric and Neonatal Surgery, St. George's University Hospitals NHS Foundation Trust, London SW17 0QT, United Kingdom.
authors: C K
authors: CK
authors: Sinha
authors: Department of Paediatric and Neonatal Surgery, St. George's University Hospitals NHS Foundation Trust, London SW17 0QT, United Kingdom. Electronic address: stefano.giuliani@nhs.net.
authors: Stefano
authors: S
authors: Giuliani
mesh_terms: D000328:Adult; D000071056:Anorectal Malformations; D001294:Attitude to Health; D000013:Congenital Abnormalities; D003430:Cross-Sectional Studies; D004842:Epispadias; D005260:Female; D006330:Heart Defects, Congenital; D065630:Hernias, Diaphragmatic, Congenital; D006801:Humans; D007021:Hypospadias; D008297:Male; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D061108:Social Media; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Anorectal malformation; Congenital anomalies; Congenital diaphragmatic hernia; Congenital heart disease; Epispadias; Facebook; Hypospadias; Online support groups; Social media