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Psychosocial needs of children undergoing an invasive procedure for a CHD and their parents

Published online by Cambridge University Press:  08 April 2016

Eveline M. Levert
Affiliation:
Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands
Willem A. Helbing
Affiliation:
Department of Paediatric Cardiology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands
Karolijn Dulfer
Affiliation:
Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands
Ron T. van Domburg
Affiliation:
Department of Cardiology-Thoraxcentre, Erasmus Medical Center, Rotterdam, The Netherlands
Elisabeth M. W. J. Utens*
Affiliation:
Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC-Sophia Children’s Hospital, Rotterdam, The Netherlands
*
Correspondence to: E. M. W. J. Utens, Department of Child and Adolescent Psychiatry/Psychology, Erasmus MC-Sophia Children’s Hospital, P.O. Box 2060, 3000 CB Rotterdam, The Netherlands. Tel: (+31)10-704-0209; Fax: (+31)10-463-6804; E-mail: e.utens@erasmusmc.nl

Abstract

Objective

The aim of this study was to investigate the psychosocial needs of both parents of children with CHD (aged 0–18 years) and patients themselves (aged 8–18 years) in the week before cardiac surgery or a catheter intervention.

Patients

Eligible participants included all consecutive patients (0–18 years) scheduled to undergo cardiac surgery or a catheter intervention in our hospital between March, 2012 and July, 2013. Psychosocial needs were assessed using a disease-specific questionnaire designed for this study, consisting of a 83-item parent version and a 59-item child version (for children ⩾8 years), each covering five domains: physical/medical, emotional, social, educational/occupational, and health behaviour; two items assessed from whom and in what format psychosocial care was preferred. Quality of life was also assessed.

Interventions

If parents/patients reported a need for psychosocial care, referral to adequate mental health-care professionals was arranged.

Results

More than 40% of participating parents and >50% of participating children reported a need for psychosocial care on each of the five domains. Needs for psychosocial care for parents themselves were highest for those with children aged 0–12 years. Parents and patients report clear preferences when asked from whom and in what format they would like to receive psychosocial care. Quality of life was relatively high for both parents and patients. Psychosocial care interventions in our hospital increased significantly after the implementation of this study.

Conclusions

Results show that psychosocial care is rated as (very) important by both parents and children during an extremely stressful period of their life.

Type
Original Articles
Copyright
© Cambridge University Press 2016 

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References

1. Opic, P, Roos-Hesselink, JW, Cuypers, JA, et al. Longitudinal development of psychopathology and subjective health status in CHD adults: a 30-to 43-year follow-up in a unique cohort. Cardiol Young 2015; 26: 19.Google Scholar
2. Karsdorp, PA, Everaerd, W, Kindt, M, Mulder, BJ. Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatr Psychol 2007; 32: 527541.Google Scholar
3. Spijkerboer, AW, Helbing, WA, Bogers, AJ, 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: 638645.CrossRefGoogle ScholarPubMed
4. Bellinger, DC, Newsburger, JW. Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Prog Pediatr Cardiol 2010; 29: 8792.Google Scholar
5. Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 11431172.Google Scholar
6. Lawoko, S, Soares, JJ. Psychosocial morbidity among parents of children with congenital heart disease: a prospective longitudinal study. Heart Lung 2006; 35: 301314.Google Scholar
7. Casey, FA, Stewart, M, McCusker, CG, et al. Examination of the physical and psychosocial determinants of health behaviour in 4-5-year-old children with congenital cardiac disease. Cardiol Young 2010; 20: 532537.Google Scholar
8. Hartman, DM, Medoff-Cooper, B. Transition to home after neonatal surgery for congenital heart disease. MCN Am J Matern Child Nurs 2012; 37: 95100.Google Scholar
9. Solberg, O, Dale, MT, Holmstrom, H, Eskedal, LT, Landolt, MA, Vollrath, ME. Long-term symptoms of depression and anxiety in mothers of infants with congenital heart defects. J Pediatr Psychol 2011; 36: 179187.Google Scholar
10. Menahem, S, Poulakis, Z, Prior, M. Children subjected to cardiac surgery for congenital heart disease. Part 2-parental emotional experiences. Interact Cardiovasc Thorac Surg 2008; 7: 605608.Google Scholar
11. Utens, EM, Versluis-Den Bieman, HJ, Witsenburg, M, Bogers, AJ, Hess, J, Verhulst, FC. Does age at the time of elective cardiac surgery or catheter intervention in children influence the longitudinal development of psychological distress and styles of coping of parents? Cardiol Young 2002; 12: 524530.Google Scholar
12. Menahem, S, Poulakis, Z, Prior, M. Children subjected to cardiac surgery for congenital heart disease. Part 1-emotional and psychological outcomes. Interact Cardiovasc Thorac Surg 2008; 7: 600604.Google Scholar
13. Dulfer, K, Duppen, N, Kuipers, IM, et al. Aerobic exercise influences quality of life of children and youngsters with congenital heart disease: a randomized controlled trial. J Adolesc Health 2014; 55: 6572.Google Scholar
14. Dulfer, K, Bossers, SS, Utens, EM, et al. Does functional health status predict health-related quality of life in children after Fontan operation? Cardiol Young 2015; 26: 459468.Google Scholar
15. Spijkerboer, AW, Utens, EM, Bogers, AJ, Verhulst, FC, Helbing, WA. 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 2008; 125: 6673.Google Scholar
16. Spijkerboer, AW, Utens, EM, De Koning, WB, Bogers, AJ, Helbing, WA, Verhulst, FC. Health-related quality of life in children and adolescents after invasive treatment for congenital heart disease. Qual Life Res 2006; 15: 663673.Google Scholar
17. Bright, MA, Franich-Ray, C, Anderson, V, et al. Infant cardiac surgery and the father-infant relationship: feelings of strength, strain, and caution. Early Hum Dev 2013; 89: 593599.Google Scholar
18. Garson, SL, Baer, PE. Psychological aspects of heart disease in childhood. In: Garson A Jr, Bricker JT, McNamara DG (eds). The Science of Pediatric Cardiology. Lea & Febiger, Philadelphia, PA and London, 1990: 25192527.Google Scholar
19. Limbers, CA, Emery, K, Uzark, K. Factors associated with perceived cognitive problems in children and adolescents with congenital heart disease. J Clin Psychol Med Settings 2013; 20: 192198.Google Scholar
20. Miatton, M, De Wolf, D, Francois, K, Thiery, E, Vingerhoets, G. Neuropsychological performance in school-aged children with surgically corrected congenital heart disease. J Pediatr 2007; 151: 7378; e71.CrossRefGoogle ScholarPubMed
21. Dulfer, K, Duppen, N, Blom, NA, et al. 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 2013; 9: 415423.Google Scholar
22. Sable, C, Foster, E, Uzark, K, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues: a scientific statement from the American Heart Association. Circulation 2011; 123: 14541485.Google Scholar
23. Reid, GJ, Irvine, MJ, McCrindle, BW, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 2004; 113: e197e205.Google Scholar
24. Golfenshtein, N, Srulovici, E, Medoff-Cooper, B. Investigating parenting stress across pediatric health conditions – a systematic review. Issues Compr Pediatr Nurs 2015; 39: 149.Google Scholar
25. LeRoy, S, Elixson, EM, O’Brien, P, et al. 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 2003; 108: 25502564.Google Scholar
26. Lesch, W, Specht, K, Lux, A, Frey, M, Utens, E, Bauer, U. Disease-specific knowledge and information preferences of young patients with congenital heart disease. Cardiol Young 2014: 321330.Google Scholar
27. Dulfer, K, Helbing, WA, Utens, EM. 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, NY, 2012: 307320.Google Scholar
28. Utens, EM, Versluis-Den Bieman, HJ, Verhulst, FC, Witsenburg, M, Bogers, AJ, Hess, J. Psychological distress and styles of coping in parents of children awaiting elective cardiac surgery. Cardiol Young 2000; 10: 239244.CrossRefGoogle ScholarPubMed
29. Spijkerboer, AW, Utens, EM, Bogers, AJ, Helbing, WA, Verhulst, FC. A historical comparison of long-term behavioral and emotional outcomes in children and adolescents after invasive treatment for congenital heart disease. J Pediatr Surg 2008; 43: 534539.CrossRefGoogle ScholarPubMed
30. Opic, P. Impact of congenital heart disease at adulthood (2013). PhD thesis, Erasmus University, Rotterdam.Google Scholar
31. Moons, P, Van Deyk, K, De Bleser, L, et al. Quality of life and health status in adults with congenital heart disease: a direct comparison with healthy counterparts. Eur J Cardiovasc Prev Rehabil 2006; 13: 407413.Google Scholar
32. Statistics Netherlands. Occupational classification 2010 system. Statistics Netherlands, the Netherlands, 2010.Google Scholar
33. Kendall, L, Sloper, P, Lewin, RJ, Parsons, JM. The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease. Cardiol Young 2003; 13: 2027.CrossRefGoogle ScholarPubMed
34. Kendall, L, Sloper, P, Lewin, RJ, Parsons, JM. The views of young people with congenital cardiac disease on designing the services for their treatment. Cardiol Young 2003; 13: 1119.Google Scholar