Publication Date

2016

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.

School/Institute

School of Nursing, Midwifery & Paramedicine

Document Type

Journal Article

Access Rights

ERA Access

Access may be restricted.

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