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

  • C.M. Jantien Vrijmoet-Wiersma (a1), Jaap Ottenkamp (a2), Matty van Roozendaal (a3), Martha A. Grootenhuis (a4) and Hendrik M. Koopman (a3)
  • DOI:
  • Published online: 14 October 2009

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.

Corresponding author
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:
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4.CL Brosig , KA Mussatto , EM Kuhn , JS Tweddell . Psychosocial outcomes for preschool children and families after surgery for complex congenitally malformed hearts. Pediatr Cardiol 2007; 28: 255262.

5.K Uzark , K Jones . Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163168.

6.S Lawoko . Factors influencing satisfaction and well-being among parents of congenitally malformed hearts children: development of a conceptual model based on the literature review. Scand J Caring Sci 2007; 21: 106117.

7.S Helfricht , B Latal , J Fischer , M Tomaske , MA Landolt . Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: A prospective cohort study. Pediatr Crit Care Med 2008; 9: 217223.

8.L Goldbeck , J Melches . Quality of Life in Families of Children with Congenitally malformed hearts. Quality of Life Research 2005; 14: 19151924.

9.S Lawoko , JJF Soares . Quality of life among parents of children with congenitally malformed hearts, parents of children with other diseases and parents of healthy children. Quality of Life Research 2003; 12: 655666.

10.S Lawoko , JJF Soares . Distress and hopelessness among parents of children with congenitally malformed hearts, parents of children with other diseases, and parents of healthy children. Journal of Psychosomatic Research 2002; 52: 193208.

11.FA Casey , DH Sykes , BG Craig , R Power , HC Mulholland . Behavioral adjustment of children with surgically palliated complex congenitally malformed hearts. J Pediatr Psychol 1996; 21: 335352.

12.CC Davis , RT Brown , R Bakeman , R Campbell . Psychological Adaptation and Adjustment of Mothers of Children With Congenitally malformed hearts: Stress, Coping, and Family Functioning. J Pediatr Psychol 1998; 23: 219228.

13.S Lawoko , JJF Soares . Psychosocial morbidity among parents of children with congenitally malformed hearts: A prospective longitudinal study. Heart & Lung 2005; 35: 301314.

15.KJ Visconti , KJ Saudino , LA Rappaport , JW Newburger , DC Bellinger . Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. Journal of Developmental and Behavioral Pediatrics 2002; 23: 314321.

22.Y Vance , R Morse , ME Jenney , C Eiser . Issues in measuring quality of life in childhood cancer: measures, proxies, and parental mental health. J Child Psychol Psychiatry 2001; 42: 661667.

23.BJ Wijnberg-Williams , WA Kamps , EC Klip , JE Hoekstra-Weebers . Psychological distress and the impact of social support on fathers and mothers of pediatric cancer patients: long-term prospective results. J Pediatr Psychol 2006; 31: 785792.

26.KA Thomas , MT Renaud , D Depaul . Use of the parenting stress index in mothers of preterm infants. Adv Neonatal Care 2004; 4: 3341.

27.BWC Forsyth , SM Horwitz , JM Leventhal , J Bruger , PJ Leaf . The Child Vulnerability Scale: An Instrument to Measure Parental Perceptions of Child Vulnerability. J Pediatr Psychol 1996; 21: 89101.

30.M Thomasgard , WP Metz . The vulnerable child syndrome revisited. Journal of Developmental and Behavioral Pediatrics 1995; 16: 4753.

32.LK Carey , BC Nicholson , RA Fox . Maternal factors related to parenting young children with congenitally malformed hearts. J Pediatr Nurs 2002; 17: 174183.

34.RT Fouladi , CJ McCarthy , NP Moller . Paper and Pencil or Online? Evaluating mode effects on measures of emotional functioning and attachment. Assessment 2002; 9: 204215.

35.SM Kongsved , M Basnov , K Holm-Kristensen , NH Hjollund . Response rate and completeness of questionnaires: a randomized study of Internet versus paper-and-pencil versions. J Med Internet Res 2007; 9: e25.

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Cardiology in the Young
  • ISSN: 1047-9511
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