title: 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.
  
  
  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.
authors.affiliation: Australian Catholic University School of Nursing, Midwifery and Paramedicine/Prince Charles Hospital, Brisbane, Queensland; Queensland Children's Medical Research Institute, The University of Queensland.
authors.forename: Melanie
authors.initials: M
authors.lastname: Jessup
authors.affiliation: Lady Cilento Children's Hospital, Queensland; Curtin University, Western Australia.
authors.forename: Tonia
authors.initials: T
authors.lastname: Douglas
authors.affiliation: School of Psychology and Social Science, Edith Cowan University, Western Australia.
authors.forename: Lynn
authors.initials: L
authors.lastname: Priddis
authors.affiliation: Edith Cowan University, Western Australia; Telethon Kids Institute, University of Western Australia.
authors.forename: Cindy
authors.initials: C
authors.lastname: Branch-Smith
authors.affiliation: Charles Sturt University, NSW; Medical School, The University of Queensland. Electronic address: lshields@csu.edu.au.
authors.forename: Linda
authors.initials: L
authors.lastname: Shields
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001294:Attitude to Health; D017028:Caregivers / Q000193:education* / Q000523:psychology; D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000451:nursing; D019988:Children with Disabilities; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D008490:Medical Informatics; D020380:Needs Assessment; D015997:Neonatal Screening; D016487:Parenting / Q000523:psychology; D010290:Parents / Q000193:education*; D036301:Qualitative Research; D011793:Queensland; D012494:Sampling Studies
keywords: Caregiving; Cystic fibrosis; Education; Families; Information needs; Parenting; Patient; Phenomenology