Madeline Alizadeh, Natalia Sampaio Moura, Alyssa Schledwitz, Seema A Patil, Jacques Ravel, Jean-Pierre Raufman
Gastroenterology Fellowship and Postdoctoral Training in Omics and Statistics-Part I: Why Is It Needed?
Digestive diseases and sciences
caregivers individuals intellectual developmental disabilities epilepsy dravet syndrome ds must navigate complex web state community services transition childcentered adultoriented healthcare study examined barriers successful transition caregivers perspective primary caregivers teenagers adults ds contemplated completed transition adult care eligible threeweek asynchronous webbased focus group conducted facebook data analyzed iterative process based grounded theory approach participants reviewed findings accuracy transition success defined well ensured adequate care child caregivers became unable provide existing transition programs described kids caregivers reported transition programs began late challenges identifying suitable providers formidable 71 adult patients still seen pediatric neurologists many adult physicians lacked general knowledge ds yet caregivers perceived adult physicians unwilling listen caregivers comfortable accommodating patients intellectual disabilities challenging behaviors community programs often excluded patients ds rural healthcare disparities created additional barriers analysis produced recommendations improving transition process including creation certified transition navigator position clinical setting limitations focus group analysis include possible selection bias study identified key issues pathways improve transition process patients ds caregivers