Role for Social Media in Pediatric Liver Disease: Caregiver and Provider Perspectives

Douglas B. Mogul, Mary Grace Bowring, Jennifer Lau, Erin Babin, John F.P. Bridges, Sanjiv Harpavat, Tamir Miloh

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


Purpose: To better understand the benefits and harms of engagement with online pediatric liver disease communities within social media. Methods: We conducted a survey of caregivers of children with liver disease participating in online pediatric liver disease communities within social media, as well as a survey of healthcare providers (e.g., physicians, surgeons, nurse coordinators) from this field to better understand the perceived benefits and harms of participation. Results: Among 138 caregivers of children with liver disease that completed the survey, 97.8% agreed social media was a good place to learn about patient experiences and 88% agreed it was a good source of general information. Among caregivers, 84.8% agreed social media helps them to better advocate for their child. While 18% agreed that the information over social media was equal to the information from their healthcare team and 19% neither agreed/disagreed, only 3% indicated they would use this information to change care without telling their provider; in contrast, among 217 healthcare providers, 55% believed social media may lead caregivers to change management without telling their team. Conclusion: Engagement with online disease-specific communities in social media yields several benefits for caregivers and, in contrast to healthcare providers' concerns, participation is unlikely to lead to problems including caregivers changing the treatment plan without first discussing these plans with their team. Openness between caregivers and medical teams about the role for social media can help to improve trust and maximize the potential benefits of engagement with these groups.

Original languageEnglish (US)
Pages (from-to)548-557
Number of pages10
JournalPediatric Gastroenterology, Hepatology and Nutrition
Issue number6
StatePublished - Nov 2020


  • Facebook
  • Patient participation
  • Social media

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Hepatology
  • Gastroenterology


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