Family Experience With Pierre Robin Sequence: A Qualitative Study.

Jonathan R Skirko Sarah Hatch PollardStacey SlagerMan HungCharlene Weir

Published in: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association (2020)

Families of children with PRS have experiences that profoundly affect their lives. Child's physical symptoms/well-being and parents' psychosocial well-being provide content for a future PRS-specific quality-of-life instrument. Concepts that emerged also provide a framework to improve parents' experience and enhance their children's quality of care.

Keyphrases

mental health
young adults
healthcare
quality improvement
physical activity
pain management
patient reported outcomes