Information needs of parents of infants diagnosed with cystic fibrosis: Results of a pilot study

Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community
Danielle J EdwardsTonia Douglas

Abstract

This study investigated the information needs, priorities and information-seeking behaviours of parents of infants recently diagnosed with cystic fibrosis (CF) following newborn screening, by piloting the 'Care of Cystic Fibrosis Families Survey'. The questionnaires were posted to eligible parents ( n = 66) attending CF clinics in hospitals in two Australian states; reply-paid envelopes were provided for return of the questionnaires. Twenty-six were returned (response rate 39.4%). The most common questions to which parents required answers during their initial education period related to what CF is, how it is treated and how to care for their child. Parents preferred face-to-face consultations to deliver information, and yet all reported using the Internet to search for more information at some point during the education period. Many parents provided negative feedback about being given their child's CF diagnosis via telephone. The timing, content and method of information delivery can all affect the initial education experience. We can deliver education to better suit the information needs and priorities for education of parents of infants recently diagnosed with CF. The Care of Cystic Fibrosis Families Survey was successfully ...Continue Reading

References

Sep 6, 2005·Patient Education and Counseling·Alda Hummelinck, Kristian Pollock
Dec 21, 2010·Journal of Health Communication·James Price DillardPhillip M Farrell
Sep 18, 2012·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Natalie SalmAudrey Tluczek
Dec 28, 2012·Journal of Cystic Fibrosis : Official Journal of the European Cystic Fibrosis Society·Catherine M McDonaldNatalie Brown
Oct 17, 2013·Journal of Obstetric, Gynecologic, and Neonatal Nursing : JOGNN·Audrey Tluczek, Jane M De Luca
Nov 17, 2016·Evidence-based Nursing·Abbie Jordan, Christine Chambers

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Citations

Mar 7, 2020·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Jim Reeder, Jane Morris
Oct 18, 2020·European Journal of Pediatrics·L SeddonI M Balfour-Lynn
Dec 1, 2020·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Kristen AndrewsNarelle S Cox

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