Protocol For Study Of Information Needs Of Parents Of Infants Newly Diagnosed With Cystic Fibrosis

摘要: Background: Cystic Fibrosis (CF) is an inherited disorder with currently no known cure, and treatment requires significant lifestyle changes. For most parents, the diagnosis of CF in their newborn infant unexpected intensive daily monitoring. Parents have a variety information needs priorities. Research needed to identify address these needs. Aims: To investigate needs, priorities, information-seeking behaviours parents infants newly diagnosed using validated questionnaire prospective study within Queensland. Significance: Results will assist health care professionals communicating recently CF, contribute development adequate, appropriate timely packages tailored individuals families. Methods: A convenience sample 20 be recruited through Brisbane centre, asked participate by completing questionnaire. Responses analysed descriptive statistics, open-ended questions grouped into themes described. Conclusion: This protocol describes background, significance, aims methods study.