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.
Edwards, D. J., Wicking, K., Smyth, W., Shields, L., & Douglas, T. (2018). Information needs of parents of infants diagnosed with cystic fibrosis: Results of a pilot study. Journal of Child Health Care, 22(3), 382-392. https://doi.org/10.1177/1367493518760734