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

Melanie Jessup, Tonia Douglas, Lynn E Priddis, Cindy Branch-Smith, Linda Shields

Research output: Contribution to journalArticle

6 Citations (Scopus)

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.
Original languageEnglish
Pages (from-to)e233-e241
Number of pages9
JournalJournal of Pediatric Nursing
Volume31
Issue number3
Early online date2015
DOIs
Publication statusPublished - 01 May 2016

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