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Psychological Aspects in Children and Adolescents with Congenital Heart Disease and Their Parents

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Clinical Psychology and Congenital Heart Disease

Abstract

The aim of this chapter is to provide an overview of psychosocial aspects of living with a congenital heart disease (ConHD) for children and also for their parents.

The presence of a cardiac defect makes the parent–child relationship more vulnerable. Protective factors to enhance this relationship are described, in order to positively influence the child’s emotional development.

The literature clearly shows that children and adolescents with ConHD are at risk for behavioral/emotional problems, a reduced health-related quality of life, intellectual and school problems, and poorer motor function compared to healthy peers. For adolescents, the transition from the pediatric service to an adult department of cardiology is especially challenging.

For the problem areas mentioned above, clinical recommendations are given, for different developmental phases, and interventions for preparing children and adolescents for invasive cardiac procedures and psychotherapeutic tools are briefly described. Finally a clinical case is presented, illustrating psychosocial problems in an adolescent female with ConHD.

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References

  1. Opic P (2013) Impact of congenital heart disease at adulthood. PhD thesis, Erasmus University Rotterdam, Rotterdam

    Google Scholar 

  2. Roos-Hesselink J (2004) Congenital heart disease at adult age. PhD thesis, Erasmus University Rotterdam, Rotterdam

    Google Scholar 

  3. Wesbite: http://www.corience.org/living-with-a-heart-defect/parents/baby-with-a-heart-defect/cardiopatitis/interview-elisabeth-utens/?sword_list%5B0%5D=utens

  4. Garson SL (1998) Psychological aspects of heart disease in childhood. In: Garson A Jr, Bricker JT, Fishes DT, Neishe SR (eds) The science and practice of pediatric cardiology, 2nd edn. Williams & Wilkins, Baltimore, pp 2929–2937

    Google Scholar 

  5. Lawoko S, Soares JJ (2003) Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res 12(6):655–666

    Article  PubMed  Google Scholar 

  6. Goldberg S, Morris P, Simmons RJ, Fowler RS, Levison H (1990) Chronic illness in infancy and parenting stress: a comparison of three groups of parents. J Pediatr Psychol 15(3):347–358

    Article  PubMed  Google Scholar 

  7. Spijkerboer AW, Utens EMWJ, De Koning WB, Bogers AJJC, Helbing WA, Verhulst FC (2006) Health-related quality of life in children and adolescents after invasive treatment for congenital heart disease. Qual Life Res 15:663–673

    Article  PubMed  Google Scholar 

  8. Tedeschi RG, Calhoun LG (2004) Posttraumatic growth: conceptual foundation and empirical evidence. Psychol Inq 1–18

    Google Scholar 

  9. Dulfer K, Helbing WA, Utens EMWJ (2012) Coping in parents of children with congenital heart disease. In: Molinelli B, Grimaldo V (eds) Handbook of the psychology of coping: new research. Nova Science, Hauppauge, pp 307–320

    Google Scholar 

  10. Chessa M, De Rosa G, Pardeo M, Negura DG, Butera G, Giamberti A, Bossone E, Carminati M (2005) What do parents know about the malformations afflicting the hearts of their children? Cardiol Young 15(2):125–129

    Article  PubMed  Google Scholar 

  11. Garson A Jr, Benson RS, Ivler L, Patton C (1978) Parental reactions to children with congenital heart disease. Child Psychiatry Hum Dev 9(2):86–94

    Article  PubMed  Google Scholar 

  12. Cohen M, Mansoor D, Gagin R, Lorber A (2008) Perceived parenting style, self-esteem and psychological distress in adolescents with heart disease. Psychol Health Med 13(4):381–388

    Article  PubMed  Google Scholar 

  13. Utens EM, Versluis-Den Bieman HJ, Witsenburg M, Bogers AJ, Verhulst FC, Hess J (2001) Cognitive, and behavioural and emotional functioning of young children awaiting elective cardiac surgery or catheter intervention. Cardiol Young 11(2):153–160

    Article  PubMed  Google Scholar 

  14. Wallander JL, Varni JW (1998) Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 39:29–46

    Article  PubMed  Google Scholar 

  15. DeMaso DR, Beardslee WR, Silbert AR, Fyler DC (1990) Psychological functioning in children with cyanotic heart defects. J Dev Behav Pediatr 11:289–294

    Article  PubMed  Google Scholar 

  16. Achenbach TM, Rescorla LA (2001) Manual for the ASEBA school-age forms & profiles. University of Vermont, Burlington

    Google Scholar 

  17. Utens EMWJ, Verhulst FC, Meijboom FJ et al (1993) Behavioural and emotional problems in children and adolescents with congenital heart disease. Psychol Med 23:415–424

    Article  PubMed  Google Scholar 

  18. Oates RK, Turnbull JAB, Simpson JM, Cartmill TB (1994) Parent and teacher perceptions of child behaviour following cardiac surgery. Acta Paediatr 83:1303–1307

    Article  PubMed  Google Scholar 

  19. Gupta S, Mitchell I, Giuffre RM, Crawford S (2007) Covert fears and anxiety in asthma and congenital heart disease. Child Care Health Dev 27:335–348

    Article  Google Scholar 

  20. Hövels-Gürich HH, Konrad K, Wiesner M et al (2002) Long term behavioural outcome after neonatal arterial switch operation for transposition of the great arteries. Arch Dis Child 87:506–510

    Article  PubMed Central  PubMed  Google Scholar 

  21. Karl TR, Hall S, Ford G et al (2004) Arterial switch with full-flow cardiopulmonary bypass and limited circulatory arrest: neurodevelopmental outcome. J Thorac Cardiovasc Surg 127:213–222

    Article  PubMed  Google Scholar 

  22. Miatton M, De Wolf D, François K, Thiery E, Vingerhoets G (2007) Intellectual, neuropsychological, and behavioral functioning in children with tetralogy of fallot. J Thorac Cardiovasc Surg 133:449–455

    Article  PubMed  Google Scholar 

  23. Spijkerboer AW, Utens EMWJ, Bogers AJJC, Verhulst FC, Helbing WA (2007) Long-term behavioural and emotional problems in four cardiac diagnostic groups of children and adolescents after invasive treatment for congenital heart disease. Int J Cardiol 125(1):66–73

    Article  PubMed  Google Scholar 

  24. Karsdorp PA, Everaerd W, Kindt M, Mulder BJM (2007) Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatr Psychol 32:527–541

    Article  PubMed  Google Scholar 

  25. Casey FA, Sykes DH, Craig BG, Power R, Mulholland HC (1996) Behavioral adjustment of children with surgically palliated complex congenital heart disease. J Pediatr Psychol 21:335–352

    Article  PubMed  Google Scholar 

  26. Van der Rijken REA, Maassen BAM, Walk TLM, Daniëls O, Hulstijn-Dirkmaat GM (2007) Outcome after surgical repair of congenital cardiac malformations at school age. Cardiol Young 17:64–71

    Article  PubMed  Google Scholar 

  27. Fredriksen PM, Mengshoel AM, Frydenlund A, Sørbye Ø, Thaulow E (2004) Follow-up in patients with congenital heart disease more complex than haemodynamic assessment. Cardiol Young 14:373–379

    Article  PubMed  Google Scholar 

  28. Spijkerboer AW, Utens EM, Bogers AJ, Helbing WA, Verhulst (2008) A historical comparison of long-term behavioral and emotional outcomes in children and. J Pediatr Surg 43(3):534–539

    Article  PubMed  Google Scholar 

  29. Culbert EL, Ashburn DA, Cullen-Dean G et al (2003) Quality of life of children after repair of transposition of the great arteries. Circulation 108:857–862

    Article  PubMed  Google Scholar 

  30. Dunbar-Masterson C, Wypij D, Bellinger DC et al (2001) General health status of children with D-transposition of the great arteries after the arterial switch operation. Circulation 104(suppl I):I-138–I-142

    Google Scholar 

  31. Kendall L, Lewin RJP, Parsons JM et al (2001) Factors associated with self-perceived state of health in adolescents with congenital cardiac disease attending paediatric cardiological clinics. Cardiol Young 11:431–438

    Article  PubMed  Google Scholar 

  32. Spijkerboer AW, Utens EM, Bogers AJ, Verhulst FC, Helbing WA (2008) Long-term intellectual functioning and school-related behavioural and emotional outcomes in children and adolescents after invasive treatment for congenital heart disease. Br J Dev Psychol 26:457–470

    Article  Google Scholar 

  33. Dulfer K, Helbing WA, Duppen N, Utens EM (2013) Associations between exercise capacity, physical activity, and psychosocial functioning in children with congenital heart disease: a systematic review. Eur J Prev Cardiol 21(10):1200–1215

    Article  PubMed  Google Scholar 

  34. Marino BS, Lipkin PH, Newburger JW et al (2014) Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 126(9):1143–1172

    Article  Google Scholar 

  35. Vogels T, Verrips GHW, Koopman HM et al (2000) TACQOL Manual Parent Form and Child Form. Leiden University MEdical Center (LUMCTNO), Leiden

    Google Scholar 

  36. Takken T, Giardini A, Reybrouck T et al (2012) Recommendations for physical activity, recreation sport, and exercise training in paediatric patients with congenital heart disease: a report from the Exercise, Basic & Translational Research Section of the European Association of Cardiovascular Prevention and Rehabilitation, the European Congenital Heart and Lung Exercise Group, and the Association for European Paediatric Cardiology. Eur J Prev Cardiol 19(5):1034–1065

    Article  PubMed  Google Scholar 

  37. Dulfer K, Duppen N, Blom NA et al (2014) Effect of exercise training on sports enjoyment and leisure-time spending in adolescents with complex congenital heart disease: the moderating effect of health behavior and disease knowledge. Congenit Heart Dis (minor revision resubmitted) 9(5):415–23

    Article  Google Scholar 

  38. LeRoy S, Elixson EM, O’Brien P et al (2003) Recommendations for preparing children and adolescents for invasive cardiac procedures: a statement from the American Heart Association Pediatric Nursing Subcommittee of the Council on Cardiovascular Nursing in collaboration with the Council on Cardiovascular Diseases of the Young. Circulation 108(20):2550–2564

    Article  PubMed  Google Scholar 

  39. Rodenburg R, Benjamin A, de Roos C et al (2009) Efficacy of EMDR in children: a meta-analysis. Clin Psychol Rev 29(7):599–606

    Article  PubMed  Google Scholar 

  40. Tong EM, Kools S (2004) Health care transitions for adolescents with congenital heart disease: patient and family perspectives. Nurs Clin North Am 39(4):727–740

    Article  PubMed  Google Scholar 

  41. Higgings SS, Tong E (2003) Transitioning adolescents with congenital heart disease into adult health care. Prog Cardiovasc Nurs 18(2):93–98

    Article  Google Scholar 

  42. Report of the British Cardiac Society Working Party. Grown-up congenital heart (GUCH) disease: current needs and provision of service for adolescents and adults with congenital heart disease in the UK. Heart 88(Suppl 1):i1–i14

    Google Scholar 

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Correspondence to Elisabeth M. Utens .

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Utens, E.M., Levert, E. (2015). Psychological Aspects in Children and Adolescents with Congenital Heart Disease and Their Parents. In: Callus, E., Quadri, E. (eds) Clinical Psychology and Congenital Heart Disease. Springer, Milano. https://doi.org/10.1007/978-88-470-5699-2_3

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