Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review.

ABSTRACT:

Background

Caring for children with rare genetic disorders is challenging due to complex medical needs and limited information. Often, information is scarce due to geographical dispersion and lack of access to expertise. Social media groups are increasingly used in parenting and in healthcare as tools for data sharing and acquisition, and online peer support. Online groups relating to specific rare diseases are increasingly used by parents navigating the difficulties of understanding their child's diagnosis and providing them with support. Parents expect professionals to interact with them about information reported from online groups, but little is known regarding the content within these groups and the impact on families.

Objective

We aimed to synthesize current knowledge

SUBMITTER: Davis C 

PROVIDER: S-EPMC12701349 | biostudies-literature | 2025 Nov

REPOSITORIES: biostudies-literature