Hostname: page-component-8448b6f56d-m8qmq Total loading time: 0 Render date: 2024-04-18T08:01:20.924Z Has data issue: false hasContentIssue false
  • English
  • Français

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: c.m.j.vrijmoet-wiersma@lumc.nl
Get access Rights & Permissions [Opens in a new window]

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

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1.van Rijen, EHM, Utens, EM, Roos-Hesselink, JW, et al. Styles of coping and social support in a cohort of adults with congenitally malformed hearts. Cardiol Young 2004; 14: 122–130.CrossRefGoogle Scholar
2.Koopman, HM, Theunissen, NCM, Vogels, AGC, Kamphuis, RP, Verrips, GH. The DUC-25: a short-form questionnaire for measuring health related quality of life of children with a chronic illness. Qual Life Res 1998; 7: 619.Google Scholar
3.Majnemer, A, Limperopoulos, C, Shevell, M, Rohlicek, C, Rosenblatt, B, Tchervenkov, C. Health and well-being of children with congenital cardiac malformations, and their families, following open-heart surgery. Cardiol Young 2006; 16: 157–164.CrossRefGoogle ScholarPubMed
4.Brosig, CL, Mussatto, KA, Kuhn, EM, Tweddell, JS. Psychosocial outcomes for preschool children and families after surgery for complex congenitally malformed hearts. Pediatr Cardiol 2007; 28: 255–262.CrossRefGoogle Scholar
5.Uzark, K, Jones, K. Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163–168.CrossRefGoogle ScholarPubMed
6.Lawoko, S. 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: 106–117.CrossRefGoogle Scholar
7.Helfricht, S, Latal, B, Fischer, J, Tomaske, M, Landolt, MA. Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: A prospective cohort study. Pediatr Crit Care Med 2008; 9: 217–223.CrossRefGoogle ScholarPubMed
8.Goldbeck, L, Melches, J. Quality of Life in Families of Children with Congenitally malformed hearts. Quality of Life Research 2005; 14: 1915–1924.CrossRefGoogle Scholar
9.Lawoko, S, Soares, JJF. 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: 655–666.CrossRefGoogle ScholarPubMed
10.Lawoko, S, Soares, JJF. 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: 193–208.CrossRefGoogle ScholarPubMed
11.Casey, FA, Sykes, DH, Craig, BG, Power, R, Mulholland, HC. Behavioral adjustment of children with surgically palliated complex congenitally malformed hearts. J Pediatr Psychol 1996; 21: 335–352.CrossRefGoogle Scholar
12.Davis, CC, Brown, RT, Bakeman, R, Campbell, R. Psychological Adaptation and Adjustment of Mothers of Children With Congenitally malformed hearts: Stress, Coping, and Family Functioning. J Pediatr Psychol 1998; 23: 219–228.CrossRefGoogle ScholarPubMed
13.Lawoko, S, Soares, JJF. Psychosocial morbidity among parents of children with congenitally malformed hearts: A prospective longitudinal study. Heart & Lung 2005; 35: 301–314.CrossRefGoogle Scholar
14.Tak, YR, McCubbin, M. Family stress, perceived social support and coping following the diagnosis of a child’s congenitally malformed hearts. J Adv Nurs 2002; 39: 198–199.CrossRefGoogle Scholar
15.Visconti, KJ, Saudino, KJ, Rappaport, LA, Newburger, JW, Bellinger, DC. 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: 314–321.CrossRefGoogle ScholarPubMed
16.Spijkerboer, AW, Helbing, WA, Bogers, AJJC, van Domburg, RT, Verhulst, FC, Utens, EM. Long-term psychological distress, and styles of coping, in parents of children and adolescents who underwent invasive treatment for congenital cardiac disease. Cardiol Young 2007; 17: 638–645.CrossRefGoogle ScholarPubMed
17.Utens, EM, Versluis-Den Bieman, HJ, Verhulst, FC, Witsenburg, M, Bogers, AJJC, Hess, J. Psychological distress and styles of coping in parents of children awaiting elective cardiac surgery. Cardiol Young 2000; 10: 239–244.CrossRefGoogle ScholarPubMed
18.Wray, J, Sensky, T. Psychological functioning in parents of children undergoing elective cardiac surgery. Cardiol Young 2004; 14: 131–139.CrossRefGoogle ScholarPubMed
19.Menahem, S. Counselling strategies for parents of infants with congenitally malformed hearts. Cardiol Young 1998; 8: 400–407.CrossRefGoogle Scholar
20.Streisand, R, Braniecki, S, Tercyak, KP, Kazak, AE. Childhood illness-related parenting stress: the pediatric inventory for parents. J Pediatr Psychol 2001; 26: 155–162.CrossRefGoogle ScholarPubMed
21.Koeter, MWJ, Ormel, J. General Health Questionnaire, Dutch manual. Swets & Zeitlinger, Lisse, 1991.Google Scholar
22.Vance, Y, Morse, R, Jenney, ME, Eiser, C. Issues in measuring quality of life in childhood cancer: measures, proxies, and parental mental health. J Child Psychol Psychiatry 2001; 42: 661–667.CrossRefGoogle ScholarPubMed
23.Wijnberg-Williams, BJ, Kamps, WA, Klip, EC, Hoekstra-Weebers, JE. 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: 785–792.CrossRefGoogle ScholarPubMed
24.Bakker, FC, van Wieringen, PCW, van der Ploeg, HM, Spielberger, CD. Manual for the Dutch version of the state-trait anxiety inventory for children (STAIC). Swets & Zeitlinger, Lisse, 1989.Google Scholar
25.Brock de, AJLL, Vermulst, AA, Gerris, JRM, Abidin, RR. Handleiding Nijmeegse Ouderlijke Stress Index. Swets & Zeitlinger, Lisse, 1992.Google Scholar
26.Thomas, KA, Renaud, MT, Depaul, D. Use of the parenting stress index in mothers of preterm infants. Adv Neonatal Care 2004; 4: 33–41.CrossRefGoogle ScholarPubMed
27.Forsyth, BWC, Horwitz, SM, Leventhal, JM, Bruger, J, Leaf, PJ. The Child Vulnerability Scale: An Instrument to Measure Parental Perceptions of Child Vulnerability. J Pediatr Psychol 1996; 21: 89–101.CrossRefGoogle ScholarPubMed
28.Pijzel, M, Last, BF, Houtzager, BA . How vulnerable do parents perceive their children to be? Internal communication: 2007.Google Scholar
29.Vrijmoet-Wiersma, CMJ, Hoekstra-Weebers, JE, Peinder de, WMG, et al. Psychometric qualities of the Dutch version of the Pediatric Inventory for Parents (PIP): a multi-center study. Psychooncology 2009; in press.Google Scholar
30.Thomasgard, M, Metz, WP. The vulnerable child syndrome revisited. Journal of Developmental and Behavioral Pediatrics 1995; 16: 47–53.CrossRefGoogle ScholarPubMed
31.Green, M, Solnit, AJ. Reactions to the threatened loss of a child: a vulnerable child syndrome. Pediatrics 1964; 34: 58–66.CrossRefGoogle Scholar
32.Carey, LK, Nicholson, BC, Fox, RA. Maternal factors related to parenting young children with congenitally malformed hearts. J Pediatr Nurs 2002; 17: 174–183.CrossRefGoogle Scholar
33.Wray, J, Maynard, L. Living with congenital or acquired cardiac disease in childhood: maternal perceptions of the impact on the child and family. Cardiol Young 2005; 15: 133–140.CrossRefGoogle ScholarPubMed
34.Fouladi, RT, McCarthy, CJ, Moller, NP. Paper and Pencil or Online? Evaluating mode effects on measures of emotional functioning and attachment. Assessment 2002; 9: 204–215.CrossRefGoogle ScholarPubMed
35.Kongsved, SM, Basnov, M, Holm-Kristensen, K, Hjollund, NH. Response rate and completeness of questionnaires: a randomized study of Internet versus paper-and-pencil versions. J Med Internet Res 2007; 9: e25.CrossRefGoogle ScholarPubMed