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A multicentric study of disease-related stress, and perceived vulnerability, in parents of children with congenital cardiac disease

Published online by Cambridge University Press:  14 October 2009

C.M. Jantien Vrijmoet-Wiersma ,
Jaap Ottenkamp ,
Matty van Roozendaal ,
Martha A. Grootenhuis  and
Hendrik M. Koopman
C.M. Jantien Vrijmoet-Wiersma*
Affiliation:
Pediatric Department, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands
Jaap Ottenkamp
Affiliation:
CAHAL, Center for congenital Anomalies Heart Amsterdam/Leiden, P.O. Box 9600, 2300 RC Leiden, The Netherlands
Matty van Roozendaal
Affiliation:
Medical Psychology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands
Martha A. Grootenhuis
Affiliation:
Psychosocial Department, Academic Medical Center, Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands
Hendrik M. Koopman
Affiliation:
Medical Psychology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands
*
Correspondence to: Jantien Vrijmoet-Wiersma, Pediatric Department, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands. Tel: 0031-71-5262494; Fax: 0031-71-5248198; E-mail: [email protected]
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Abstract

Parents of children with congenitally malformed hearts can suffer from stress as a result of the medical condition of their child. In this cross-sectional study, we aimed to describe levels of parental stress, and perceived vulnerability, in parents of children who underwent major cardiac surgery, by using both generic and disease-related measures for assessment. We included parents of children who underwent open-heart surgery over the period 2002 through 2007 in the Center for congenital Anomalies Heart Amsterdam/Leiden, abbreviated to provide the acronym CAHAL. In total, we assessed 114 mothers and 82 fathers of 131 children, using the Pediatric Inventory for Parents, short form, General Health Questionnaire, Parental Stress Index-Short Form, State-Trait Anxiety Index and the Child Vulnerability Scale. Compared to the reference groups of the instruments used, parents of children with congenitally malformed hearts did not report higher generic nor disease-related stress scores, and parenting levels of stress were also comparable to reference groups. State anxiety levels, however, were higher in mothers of children with congenitally malformed hearts. Both fathers and mothers reported significantly higher rates of perceived vulnerability than did parents of healthy children. Risk factors for increased anxiety and perceived vulnerability were found in the number of surgical procedures, the time past since the last procedure, and ethnicity. Severity of the lesion did not influence parental levels of stress, but parents of children with hypoplastic left heart syndrome did report higher levels of stress than other parents. Psychosocial screening of parents of children with congenitally malformed hearts is important in order to provide appropriate counselling to those parents most in need.

Keywords

congenitally malformed heartspsychological problemsoverprotectionchildren
Type
Original Articles
Information
Cardiology in the Young , Volume 19 , Issue 6 , December 2009 , pp. 608 - 614
Copyright
Copyright © Cambridge University Press 2009

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