Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, Australia.
Heart Centre for Children, The Children's Hospital at Westmead, Sydney, Australia.
Cardiol Young. 2020 Mar;30(3):346-352. doi: 10.1017/S1047951119003226. Epub 2020 Jan 10.
The causes of CHD are complex and often unknown, leading parents to ask how and why this has happened. Genetic counselling has been shown to benefit these parents by providing information and support; however, most parents currently do not receive this service. This study aimed to develop a brochure to determine whether an information resource could improve parents' knowledge about CHD causation and inheritance and increase psychosocial functioning.
In development, the resource was assessed against several readability scales and piloted. Parents of children attending preadmission clinic for surgery were included. Assessments occurred pre- and post-receiving the information resource using a purpose-designed knowledge measure and validated psychological measures.
Participant's (n = 52) knowledge scores increased significantly from the pre-questionnaire ( ${\overline x}, = ,5/10$ , sd = 2.086) to post-questionnaire ( $\overline x, = ,7.88/10$ , sd = 2.094, p < 0.001), with all aware that CHD can be caused by genetic factors after reading the brochure. Perceived personal control also increased from pre- ( $\overline x, = ,11.856/18$ , sd = 4.339) to post-brochure ( $\overline x, = ,14.644/18$ , sd = 3.733, p < 0.001), and many reported reduced feelings of guilt. No negative emotional response to the brochure was reported. The information provided was considered relevant (88%), reassuring (86%), and 88% would recommend the brochure to other parents. However, some wanted more emotional support and assistance in what to tell their child.
Use of the information resource significantly enhanced parents' knowledge of CHD causation and increased their psychosocial functioning. It is a valuable resource in the absence of genetic counselling; however, it should not replace formal genetic counselling when required.
冠心病的病因复杂且常不明确，这使得患儿父母想要了解疾病发生的原因。研究表明，遗传咨询可以为患儿父母提供信息和支持，从而使他们受益。然而，目前大多数患儿父母并未获得此项服务。本研究旨在开发一种宣传册，以确定该信息资源是否可以提高父母对冠心病病因和遗传的认识，并增强其心理社会功能。
在开发过程中，该资源经过了多个可读性量表的评估和试点测试。研究纳入了正在接受术前门诊就诊的患儿的父母。使用专门设计的知识量表和经过验证的心理测量工具，在接受信息资源前后对参与者进行评估。
52 名参与者（n=52）的知识得分在接受信息资源前后有显著提高，从预问卷（${\overline x},=5/10$，sd=2.086）到后问卷（$\overline x,=7.88/10$，sd=2.094，p<0.001），所有参与者在阅读宣传册后均表示知晓冠心病可能由遗传因素引起。感知个人控制也从预问卷（$\overline x,=11.856/18$，sd=4.339）增加到后问卷（$\overline x,=14.644/18$，sd=3.733，p<0.001），许多参与者表示减轻了内疚感。没有报告对宣传册产生负面情绪反应。参与者认为提供的信息相关（88%）、安心（86%），88%的参与者会向其他父母推荐该宣传册。然而，一些父母希望获得更多的情感支持，并寻求如何向孩子解释病情的帮助。
使用信息资源显著提高了父母对冠心病病因的认识，并增强了他们的心理社会功能。在没有遗传咨询的情况下，这是一种有价值的资源；然而，当需要时，它不应替代正式的遗传咨询。
