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

Edwards, Danielle, Smyth, Wendy, Jones, Rhondda, Wainwright, Claire, Branch-Smith, Cindy, Wicking, Kristin, Douglas, Tonia, and Shields, Linda (2014) Protocol for study of information needs of parents of infants newly diagnosed with cystic fibrosis. Working Papers in the Health Sciences, 1 (8). pp. 1-7.

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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.

Item ID: 34344
Item Type: Article (Research - C1)
ISSN: 2051-6266
Keywords: cystic fibrosis, communication, information needs, parents
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Date Deposited: 17 Sep 2014 00:57
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1110 Nursing > 111003 Clinical Nursing: Secondary (Acute Care) @ 50%
11 MEDICAL AND HEALTH SCIENCES > 1114 Paediatrics and Reproductive Medicine > 111403 Paediatrics @ 50%
SEO Codes: 92 HEALTH > 9202 Health and Support Services > 920210 Nursing @ 50%
92 HEALTH > 9205 Specific Population Health (excl. Indigenous Health) > 920501 Child Health @ 50%
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