Edwards Danielle J, Wicking Kristin, Smyth Wendy, Shields Linda, Douglas Tonia
1 College of Healthcare Sciences, James Cook University, Townsville, Queensland, Australia.
3 Charles Sturt University, Bathurst, New South Wales, Australia.
J Child Health Care. 2018 Sep;22(3):382-392. doi: 10.1177/1367493518760734. Epub 2018 Feb 27.
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 piloted and recommendations for amendments have been made for use in a larger study across Australia.
本研究通过试行“囊性纤维化家庭护理调查”，调查了新生儿筛查后近期被诊断为囊性纤维化（CF）的婴儿父母的信息需求、优先事项和信息寻求行为。问卷被寄给了澳大利亚两个州医院CF诊所的符合条件的父母（n = 66）；提供了回邮信封以便他们返还问卷。共收回26份（回复率39.4%）。在初始教育阶段，父母最常需要解答的问题与CF是什么、如何治疗以及如何照顾孩子有关。父母更喜欢面对面咨询来获取信息，但所有人都报告说在教育阶段的某个时候会使用互联网搜索更多信息。许多父母对通过电话告知他们孩子的CF诊断结果给出了负面反馈。信息传递的时间、内容和方式都会影响初始教育体验。我们可以提供更适合近期被诊断为CF的婴儿父母的信息需求和教育优先事项的教育。“囊性纤维化家庭护理调查”试行成功，并已提出修订建议，以便在澳大利亚更大规模的研究中使用。
