Information needs and priorities of parents of infants newly diagnosed with cystic fibrosis: a literature review

Background/Aims: Initial diagnosis and education are landmark events for parents whose children have cystic fibrosis (CF). Education delivery and content exert powerful influences on parental adjustment to diagnosis and ongoing engagement with the CF team. Even with good intentions, current practices may fail to meet parents' information and care needs. Methods: A literature review of articles written in English and published between 2001 and April 2014 was undertaken. We searched CINAHL, MEDLINE, Cochrane Library, and Google Scholar using key words: cystic fibrosis, information needs, education*, parent*, chronic illness*, chronic disease*, infant diagnosis, newborn screening, quality of life, counselling, priorities*, communicat*, NICU, respiratory illness*, and family-centred care. Results: The literature review revealed a dearth of studies investigating education needs of parents during this pivotal period. The main findings include: need for information, timing and type of information required changes over time. Parents seek information from a variety of sources; effective communication when disclosing results is crucial; and knowledge gives parents a sense of control. Conclusion: There is a gap in research about information needs and priorities of this group of parents. Chronic illnesses such as CF have significant impacts on family functioning and overall health outcomes, calling for increased support and education. Parents turn to the Internet as an additional source of information to meet their needs, but this can have varying positive and negative outcomes. This literature review has informed an Honours project about information needs of parents of children recently diagnosed with CF.

Annals of the Australasian College of Tropical Medicine Inc

Annals of the Australasian College of Tropical Medicine

15

1448-4706

N/A

3

1