The content and quality of publicly available information about congenital diaphragmatic hernia: Descriptive study

Frank Coyle Soltys, Kimi Spilo, Mary C. Politi

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Congenital diaphragmatic hernia (CDH) diagnosis in an infant is distressing for parents. Parents often feel unableto absorb the complexities of CDH during prenatal consultations and use the internet to supplement their knowledge and decisionmaking.Objective: We aimed to examine the content and quality of publicly available, internet-based CDH information.Methods: We conducted internet searches across 2 popular search engines (Google and Bing). Websites were included if theycontained CDH information and were publicly available. We developed a coding instrument to evaluate websites. Two coders(FS and KS) were trained, achieved interrater reliability, and rated remaining websites independently. Descriptive statistics wereperformed.Results: Searches yielded 520 websites; 91 met inclusion criteria and were analyzed. Most websites provided basic CDHinformation including describing the defect (86/91, 95%), need for neonatal intensive care (77/91, 85%), and surgical correction(79/91, 87%). Few mentioned palliative care, decisions about pregnancy termination (13/91, 14%), or support resources (21/91,23%).Conclusions: Findings highlight the variability of information about CDH on the internet. Clinicians should work to developor identify reliable, comprehensive information about CDH to support parents.

Original languageEnglish
Article numbere30695
JournalJMIR Pediatrics and Parenting
Volume4
Issue number4
DOIs
StatePublished - Oct 2021

Keywords

  • Congenital diaphragmatic hernia
  • Fetal care
  • Online information
  • Parental decision making
  • Prenatal counseling

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