Parental experience of information and education processes following diagnosis of their infant with cystic fibrosis via newborn screening

Jessup, Melanie, Douglas, Tonia, Priddis, Lynn, Branch-Smith, Cindy and Shields, Linda (2016) Parental experience of information and education processes following diagnosis of their infant with cystic fibrosis via newborn screening. Journal of Pediatric Nursing, 31 3: e233-e241. doi:10.1016/j.pedn.2015.11.010


Author Jessup, Melanie
Douglas, Tonia
Priddis, Lynn
Branch-Smith, Cindy
Shields, Linda
Title Parental experience of information and education processes following diagnosis of their infant with cystic fibrosis via newborn screening
Journal name Journal of Pediatric Nursing   Check publisher's open access policy
ISSN 0882-5963
1532-8449
Publication date 2016-05-01
Year available 2016
Sub-type Article (original research)
DOI 10.1016/j.pedn.2015.11.010
Open Access Status Not yet assessed
Volume 31
Issue 3
Start page e233
End page e241
Total pages 9
Place of publication Maryland Heights, MO, United States
Publisher W.B. Saunders
Language eng
Subject 2919 Pediatrics
Abstract Following diagnosis with cystic fibrosis (CF), initial education powerfully influences parental adjustment and engagement with care teams. This study explored the education needs of ten parents following their infant's diagnosis with CF via newborn screening. Design and methods: Phenomenological study using van Manen's approach, with ten participant parents of children 1-8 years with CF. Results: Parents recounted varying degrees of coping with information they acknowledged as overwhelming and difficult. For some it was too much too soon, while others sought such clarity to put CF into context. Conclusions: Participants delivered insight into their engagement with their education about CF. Their recommendations for appropriate context, content, format and timing of delivery enable development of education that is accurate and relevant.
Formatted abstract
Purpose: Following diagnosis with cystic fibrosis (CF), initial education powerfully influences parental adjustment and engagement with care teams. This study explored the education needs of ten parents following their infant's diagnosis with CF via newborn screening.

Design and methods: Phenomenological study using van Manen's approach, with ten participant parents of children 1-8 years with CF.

Results: Parents recounted varying degrees of coping with information they acknowledged as overwhelming and difficult. For some it was too much too soon, while others sought such clarity to put CF into context.

Conclusions: Participants delivered insight into their engagement with their education about CF. Their recommendations for appropriate context, content, format and timing of delivery enable development of education that is accurate and relevant.
Keyword Caregiving
Cystic fibrosis
Education
Families
Information needs
Parenting
Patient
Phenomenology
Q-Index Code C1
Q-Index Status Provisional Code
Institutional Status UQ

Document type: Journal Article
Sub-type: Article (original research)
Collections: HERDC Pre-Audit
Admin Only - School of Medicine
School of Medicine Publications
Child Health Research Centre Publications
 
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