Improving community-based care for children with a rare condition: The example of long-segment congenital tracheal stenosis and perceptions of health professionals, parents and teachers

Long segment congenital tracheal stenosis (LSCTS) is a rare, complex condition which is often poorly understood by community-based health professionals (HPs). Anecdotally, such HPs often lack confidence providing care for children, resulting in children being brought to the tertiary centre more frequently than necessary. We wanted to identify the information and support needs of HPs in primary and secondary care looking after a child with LSCTS,...