关键词:
CHD
genetics education
information resource
psychosocial functioning
patient care
摘要:
Background: 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. Methods: 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. Results: Participant's (n = 52) knowledge scores increased significantly from the pre-questionnaire ((x) over bar = 5=10, SD = 2.086) to post-questionnaire ((x) over bar = 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- (<(x)over bar> = 11:856=18, SD = 4.339) to post-brochure ((x) over bar = 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. Conclusions: 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.