Parental Use of Social Media and the Internet in the Context of Their Child's Genetic Neurodevelopmental Disorder: Mixed Methods Study Nested in the GenROC Cohort Study.

ABSTRACT:

Background

Social media groups (SMGs) enable individuals with rare diseases to connect with one another and access instant support and advice. Accelerated diagnoses of genetic neurodevelopmental disorders (NDDs) over the last decade have driven rapid expansion of gene-specific SMG membership. Limited literature regarding parental use of SMGs in the context of managing their child's NDD exists.

Objective

The objective of our study was to determine and describe how parents use social media and the internet in the context of their child's NDD.

Methods

We undertook a mixed methods study of 477 parents within a cohort of children with NDDs (Genetic Rare Disease: Observational Cohort Study; GenROC). A total of 359 parents provided quantifiable survey responses regarding the

SUBMITTER: Low KJ 

PROVIDER: S-EPMC12520642 | biostudies-literature | 2025 Oct

REPOSITORIES: biostudies-literature