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 new situation, how to attend to their child's medical needs as well as how to talk to their child. Parents also reported challenges related to connecting with their social network, experiences of emergency care, and how to help their children become independent. These challenges require knowing now: being able to respond appropriately to unique circumstances. Conclusions Parents experience diverse challenges that may moderate the effects of the diagnosis on children's well-being. Parenting children with CAH requires the development of knowing that goes beyond medical information.