Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns.

ABSTRACT:

Background

Because of the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups.

Objective

We aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages, and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy, and views on using Facebook for communication between health professionals and parents, pharmaceutical companies, and study recruitment.

Methods

We contacted 12 Facebook supp

SUBMITTER: Titgemeyer SC 

PROVIDER: S-EPMC8778561 | biostudies-literature | 2022 Jan

REPOSITORIES: biostudies-literature