Children’s at Home: Dedicated Social Media for Parents of Adolescents With Neurofibromatosis Type 1

Abstract

Purpose: To evaluate Children’s at Home (C@H), a social media website created for parents of adolescents with Neurofibromatosis Type 1 (NF1.) Methods: Interventional study for parents of adolescents with NF1 aged 13-18 years including 2 phases: (1) Creating Video Intervention/Prevention Assessment (VIA) visual narratives on smartphones about parenting a child with NF1; (2) Interacting on C@H, a secure, medically-moderated social media website, with phase 1 visual narratives and responses using video and text. C@H was evaluated qualitatively via semi-structured phone interviews at: enrollment (T0), after creating video narratives (T1), and after interacting with other parents on C@H (T2).