Protocol for study of information needs of parents of infants newly diagnosed with cystic fibrosis

Danielle Edwards, Wendy Smyth, Rhondda Jones, Claire Wainwright, Cindy Branch-Smith, Kristin Wicking, Tonia Douglas, Linda Shields

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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 is unexpected and requires intensive daily treatment and monitoring. Parents have a variety of information needs and priorities. Research is needed to identify and address these needs.
Aims: To investigate the information needs, priorities, and information-seeking behaviours of parents of infants newly diagnosed with CF using a validated questionnaire in a prospective study within Queensland.
Significance: Results will assist health care professionals in communicating with parents of infants recently diagnosed with CF, and contribute to the development of adequate, appropriate and timely information packages tailored to individuals and families.
Methods: A convenience sample of 20 parents will be recruited through the Brisbane CF centre, and will be asked to participate by completing the validated questionnaire. Responses will be analysed using descriptive statistics, and open-ended questions will be grouped into themes and described.
Conclusion: This protocol describes the background, significance, aims and methods of the study.
Original languageEnglish
Article number20140045
Pages (from-to)1-7
Number of pages7
JournalWorking Papers in the Health Sciences
Issue number8
Publication statusPublished - 2014

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