Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis

JMIR Pediatrics and Parenting
Sarah Catrin Titgemeyer, Christian Patrick Schaaf

Abstract

Loneliness, social isolation, and feeling disconnected from society are commonly experienced by parents of children with rare diseases and are, among others, important reasons for special supportive care needs. Social networking platforms are increasingly used for health communication, information exchange, and support. In the field of rare pediatric diseases, qualitative studies have shown that Facebook online support groups are utilized by and beneficial for persons affected by rare pediatric diseases. Nonetheless, the extent of this usage has not been investigated. This study aims to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to explore factors that influence a disease's representation on Facebook. These results potentially offer important insights for future public health initiatives and give direction to further research that can give much needed support to parents of children with rare diseases. We determined rare pediatric diseases using the inventory of the online portal Orphanet. Facebook support groups were identified by searching 5 synonymous disease descriptions using the group category search bar. Disease- and group-describin...Continue Reading

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Citations

May 12, 2021·Orphanet Journal of Rare Diseases·Andrew A DwyerChristopher S Lee
Jul 21, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Emily G MillerMeghan C Halley
Jul 9, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Alexander A IyerAnnette Rid

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