title: From Knowing Nothing to Knowing What, How and Now: Parents' Experiences of Caring for their Children With Congenital Adrenal Hyperplasia.
abstract: This study investigates various kinds of knowing that European parents use when caring for their children with congenital adrenal hyperplasia (CAH).
  
  
  
  Semi-structured qualitative interviews with 20 parents of 22 children with CAH.
  
  
  
  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.
  
  
  
  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.
authors: University of Oslo, Oslo, Norway.
authors: Tove
authors: T
authors: Lundberg
authors: Tellas Consulting, Malmö, Sweden.
authors: Anders
authors: A
authors: Lindström
authors: University of Oslo, Oslo, Norway.
authors: Katrina
authors: K
authors: Roen
authors: University of Surrey, Guildford , UK.
authors: Peter
authors: P
authors: Hegarty
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000312:Adrenal Hyperplasia, Congenital / Q000523:psychology* / Q000628:therapy; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D007407:Interviews as Topic; D019545:Intuition; D008297:Male; D010287:Parent-Child Relations; D016487:Parenting / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D055815:Young Adult
keywords: children; chronic condition; congenital adrenal hyperplasia; decision-making; disclosure; disorders of sex development; knowing; medical information; parents; qualitative methods; self-management