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From knowing nothing to knowing what, how and now : Parents' experiences of caring for their children with Congenital Adrenal Hyperplasia.

Lundberg, Tove LU ; Lindström, Anders; Roen, Katrina and Hegarty, Peter (2017) In Journal of Pediatric Psychology 42(5). p.520-529
Abstract (Swedish)
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... (More)
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. (Less)
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author
publishing date
type
Contribution to journal
publication status
published
subject
keywords
children, chronic condition, congenital adrenal hyperplasia, Decision-Making, disclosure, Disorders of sex development, knowing, medical information, parents, qualitative methods, Self-management, children, chronic condition, congenital adrenal hyperplasia, decision-making, disclosure, disorders of sex development, knowing, medical information, parents, qualitative methods, self-management
in
Journal of Pediatric Psychology
volume
42
issue
5
pages
9 pages
publisher
Oxford University Press
ISSN
0146-8693
DOI
10.1093/jpepsy/jsw001
language
English
LU publication?
no
id
23699648-ad46-458a-ae95-e4f9c6c24712
date added to LUP
2019-09-02 11:30:26
date last changed
2019-09-03 04:03:24
@article{23699648-ad46-458a-ae95-e4f9c6c24712,
  abstract     = {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.},
  author       = {Lundberg, Tove and Lindström, Anders and Roen, Katrina and Hegarty, Peter},
  issn         = {0146-8693},
  keyword      = {children,chronic condition,congenital adrenal hyperplasia,Decision-Making,disclosure,Disorders of sex development,knowing,medical information,parents,qualitative methods,Self-management,children,chronic condition,congenital adrenal hyperplasia,decision-making,disclosure,disorders of sex development,knowing,medical information,parents,qualitative methods,self-management},
  language     = {eng},
  number       = {5},
  pages        = {520--529},
  publisher    = {Oxford University Press},
  series       = {Journal of Pediatric Psychology},
  title        = {From knowing nothing to knowing what, how and now : Parents' experiences of caring for their children with Congenital Adrenal Hyperplasia.},
  url          = {http://dx.doi.org/10.1093/jpepsy/jsw001},
  volume       = {42},
  year         = {2017},
}