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

Published online by Cambridge University Press:  10 January 2020

Alexis V. Hunt ,
Desiree C. K. Hilton ,
Charlotte E. Verrall ,
Kristine K. Barlow-Stewart ,
Jane Fleming ,
David S. Winlaw  and
Gillian M. Blue Open the ORCID record for Gillian M. Blue [Opens in a new window]
Alexis V. Hunt
Affiliation:
Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, Australia
Desiree C. K. Hilton
Affiliation:
Heart Centre for Children, The Children’s Hospital at Westmead, Sydney, Australia
Charlotte E. Verrall
Affiliation:
Heart Centre for Children, The Children’s Hospital at Westmead, Sydney, Australia
Kristine K. Barlow-Stewart
Affiliation:
Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, Australia
Jane Fleming
Affiliation:
Faculty of Medicine and Health, Northern Clinical School, University of Sydney, St Leonards, Australia
David S. Winlaw
Affiliation:
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
Gillian M. Blue*
Affiliation:
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
*
Author for correspondence: Dr Gillian Blue, Heart Centre for Children, The Children’s Hospital at Westmead, Locked Bag 4001, Westmead, NSW2145, Australia. Tel: +61 9845 2345; Fax: +61 9845 3275; E-mail: [email protected]
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Abstract

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.

Keywords

CHDgenetics educationinformation resourcepsychosocial functioningpatient care
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 3 , March 2020 , pp. 346 - 352
Copyright
© Cambridge University Press 2020

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