"Why and how did this happen?": development and evaluation of an information resource for parents of children with CHD.

Autor:	Hunt AV; Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, Australia., Hilton DCK; Heart Centre for Children, The Children's Hospital at Westmead, Sydney, Australia., Verrall CE; Heart Centre for Children, The Children's Hospital at Westmead, Sydney, Australia., Barlow-Stewart KK; Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, Australia., Fleming J; Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, Australia., Winlaw DS; Heart Centre for Children, The Children's Hospital at Westmead, Sydney, Australia.; Discipline of Child and Adolescent Health, Sydney Medical School, University of Sydney, Sydney, Australia., Blue GM; Heart Centre for Children, The Children's Hospital at Westmead, Sydney, Australia.; Discipline of Child and Adolescent Health, Sydney Medical School, University of Sydney, Sydney, Australia.
Jazyk:	angličtina
Zdroj:	Cardiology in the young [Cardiol Young] 2020 Mar; Vol. 30 (3), pp. 346-352. Date of Electronic Publication: 2020 Jan 10.
DOI:	10.1017/S1047951119003226
Abstrakt:	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 ( ${\overline x}\, = \,5/10$ , 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. 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.
Databáze:	MEDLINE
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