From knowing nothing to knowing what, how and now : Parents' experiences of caring for their children with Congenital Adrenal Hyperplasia.
Objective This study investigates various kinds of knowing that European parents use when caring for their children with congenital adrenal hyperplasia (CAH). Methods Semi-structured qualitative interviews with 20 parents of 22 children with CAH. Results Parents emphasized the importance of knowing what CAH is and what support their child needs, but also knowing how to cope and make sense of the n
