Parental Experience of Information and Education Processes Following Diagnosis of Their Infant With Cystic Fibrosis Via Newborn Screening

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.

Keywords: Caregiving; Cystic fibrosis; Education; Families; Information needs; Parenting; Patient; Phenomenology.