Hostname: page-component-8448b6f56d-sxzjt Total loading time: 0 Render date: 2024-04-23T22:29:42.163Z Has data issue: false hasContentIssue false
  • English
  • Français

The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease

Published online by Cambridge University Press:  03 February 2006

Lutz Goldbeck  and
Juliane Melches
Lutz Goldbeck
Affiliation:
University Clinic for Child and Adolescent Psychiatry/Psychotherapy Ulm, Germany
Juliane Melches
Affiliation:
University Clinic for Child and Adolescent Psychiatry/Psychotherapy Ulm, Germany
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective: Increasing rates of survival have raised the question of medical and psychosocial factors contributing to quality of life of patients with congenital cardiac disease. We investigated the impact of the severity of disease, and social disadvantage, on the quality of life of patients and their primary caregivers. Methods: One hundred and thirty two families participated in a computer-assisted evaluation of their quality of life in a German outpatient centre for paediatric cardiac diseases. Quality of life for the patients was evaluated by a multi-dimensional proxy-measure. The quality of life of the caregivers was evaluated by a multi-dimensional self-reporting measure. Severity of the disease was evaluated by the responsible paediatrician. Social disadvantage was defined as single-parent status, ethnic minority status, unfinished parental education or professional training, and/or unemployment. Analyses of variance were calculated with mild, moderate, or severe forms of disease, and risk as opposed to no risk for social status, both factors being treated independently, and the quality of life of the patients and their caregivers as dependent variables. Results: We demonstrated significant effects of the severity of disease on the quality of life of the children, and of social disadvantage on the quality of life of both the children and their parents. A significant interactive effect indicated a cumulative negative impact of the severity of the disease and social disadvantage on the quality of life of the patients. Conclusion: Programmes providing psychosocial support for children with cardiac disease and their caregivers should consider risk factors which are both medical and social.

Keywords

Children and adolescentsparentspsychosocial aspectssubjective health
Type
Original Article
Information
Cardiology in the Young , Volume 16 , Issue 1 , January 2006 , pp. 67 - 75
Copyright
© 2006 Cambridge University Press

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.)

Footnotes

This study was supported by grants of Ulmer Herzkinder e.V, Ulm (Germany) and Bundesverband herzkranke Kinder e.V., Aachen (Germany).

References

Clark EB. Epidemiology of congenital cardiovascular malformations. In: Emmanouilides GC, Riemenschneider ThA, Allen HD, Gutgesell HP (eds). Heart Disease in Infants, Children, and Adolsecents. Williams and Wilkins, Baltimore, 1995, pp 60–70.
Gortmaker SL, Walker DB, Weitzman M, Sobol AM. Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents. Pediatrics 1990; 85: 267–276.Google Scholar
Lawoko S, Soares JJF. Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. J Psychosom Res 2002; 52: 193–208.Google Scholar
Thompson RJ, Gustafson KE. Adaptation to Chronic Childhood Illness. Washington DC: American Psychological Association, 1996.
Resch F, Salzer-Muhar U, Mutschlechner R, Wimmer M. Kognitive und psychosoziale Risikofaktoren der Selbstentwicklung bei Kindern mit angeborenen Herzfehlern. In: Lehmkuhl G (ed.). Chronisch kranke Kinder und ihre Familien. Quintessenz, München, 1996, pp 240–249.
The WHOQOL Group. The World Health Organization Quality of Life Assessment (WHOQOL): Position Paper from the World Health Organization. Soc Sci Med 1995; 41: 1403–1409.
Eiser C, Morse R. The measurement of quality of life in children: past and future perspectives. J Devel Behav Pediatr 2001; 22: 248–256.Google Scholar
McCubbin HI, Thompson AI (eds). Family Assessment Inventories for Research and Practice. The University of Wisconsin-Madison, Madison, Wisconsin, 1991.
Kazak AE. The social context of coping with childhood illness: Family systems and social support. In: La Greca AM, Siegel LJ, Wallander JL, Walker CE (eds). Stress and Coping in Child Health. Guilford, New York, 1992, pp 262–278.
Moons P, Van Deyk K, Budts W, De Geest S. Caliber of quality-of-life assessments in congenital heart disease. A plea for more conceptual and methodological rigor. Arch Pediatr Adolesc Med 2004; 158: 1062–1069.Google Scholar
Connolly D, Rutkowski M, Auslender M, Artman M. Measuring health-related quality of life in children with heart disease. Appl Nurs Res 2002; 15: 74–80.Google Scholar
Van Rijen EHM, Utens EMWJ, Roos-Hesselink JW, et al. Medical predictors for psychopathology in adults with operated congenital heart disease. Eur Heart J 2004; 25: 1605–1613.Google Scholar
Jefferies JL, Noonan JA, Keller BB, Wilson JF, Griffith C. Quality of life and social outcomes in adults with congenital heart disease living in rural areas of Kentucky. Am J Cardiol 2004; 94: 263–266.Google Scholar
Utens E, Cersluis-Den Bieman HJ, Witsenburg M, Bogers A, Verhulst C, Hess J. Cognitive, and behavioral and emotional functioning of young children awaiting elective cardiac surgery or catheter intervention. Cardiol Young 2001; 11: 153–160.Google Scholar
Van Rijen EHM, Utens EMWJ, Roos-Hesselink JW, et al. Psychosocial functioning of the adult with congenital heart disease: a 20–33 years follow-up. Eur Heart J 2003; 24: 673–683.Google Scholar
Utens E, Erdman RA. Psychosocial aspects of congenital heart disease in adolescents and adults. In: Hess J, Sutherland GJ, Congenital heart disease in adolescents and adults. Kluwer Academic Publishers, Dordrecht, 1992, pp 187–197.
Utens E, Cersluis-Den Bieman HJ, Witsenburg M, Bogers A, Verhulst C, Hess J. Does age at the time of elective surgery or catheter intervention in children influence the longitudinal development of psychological distress and styles of coping of parents? Cardiol Young 2002; 12: 524–530.Google Scholar
DeMaso DR, Campis LK, Wypij D, Bertram S, Lipshitz M, Freed M. The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. J Pediactr Psychol 1991; 16: 137–149.Google Scholar
DeMaso DR, Lauretti A, Spieth L, et al. Psychosocial factors and quality of life in children and adolescents with implantable cardioverter-defibrillators. Am J Cardiol 2004; 93: 582–587.Google Scholar
Van Horn M, DeMaso DR, Gonzalez-Heydrich J, Erickson JD. Illness-related concerns of mothers of children with congenital heart disease. J Am Acad Child Adolesc Psychiatry 2001; 40: 847–857.Google Scholar
Kirschenbaum Cohn J. An empirical study of parents' reaction to the diagnosis of congenital heart disease in infants. Soc Work Health Care 1996; 23: 67–79.Google Scholar
Pelchat D, Ricard N, Bouchard J-M, et al. Adaptation of parents in relation to their 6-month-old infant's type of disability. Child Care Health Dev 1999; 25: 377–397.Google Scholar
Sparacino PSA, Tong EM, Messias DKH, Foote D, Chesla CA, Gillis CL. The dilemmas of parents of adolescents and young adults with congenital heart disease. Heart & Lung 1997; 26: 187–195.Google Scholar
Davis CC, Brown RT, Bakeman R, Campbell R. Psychological adaption and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioning. J Pediatr Psychol 1998; 28: 219–228.Google Scholar
Lawoko S, Soares JJF. 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 2003; 12: 655–666.Google Scholar
Uzark K, Jones K. Parenting stress and children with heart disease. J Pediatr Health Care 2003; 17: 163–168.Google Scholar
Morelius E, Lundh U, Nelson N. Parental stress in relation to the severity of congenital heart disease in the offspring. Pediatr Nurs 2002; 28: 28–32.Google Scholar
Wray J, Sensky T. Psychological functioning in parents of children undergoing elective cardiac surgery. Cardiol Young 2004; 14: 131–139.Google Scholar
The Criteria Committee of the New York Heart Association. Nomenclature and criteria for diagnosis of diseases of the heart and great vessels. 8th edn. Little, Brown and Company, Boston, 1979.
Goldbeck L, Braun R. Ulm Inventory (LQ-KID) – Ein computergestütztes Verfahren zur Erfassung der Lebensqualität chronisch kranker Kinder und Jugendlicher. Prävention und Rehabilitation 2003; 15: 117–126.Google Scholar
Varni JW. The PedsQL 4.0 Measurement model for the pediatric quality of life inventory TM Version 4.0. www.pedsql.org. 2003.
Goldbeck L, Melches J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14: 1915–1924.Google Scholar
Goldbeck L, Melches J, Franz A, Voßbeck S, Lang D, Mihatsch W. Lebensqualität in Familien mit einem herzkranken Kind. Kindheit und Entwicklung 2005; 14: 79–82.Google Scholar
Goldbeck L, Storck M. Das Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker Kinder (ULQIE): Entwicklung und psychometrische Eigenschaften. Z Klin Psychol Psychother 2002; 31: 31–39.Google Scholar
Ware JE, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey Manual. J.E. Ware, Boston, 1993.
Goldbeck L, Braun J, Storck M, Tönnessen D, Weyhreter H, Debatin K-M. Adaptation von Eltern an eine chronische Krankheit ihres Kindes nach der Diagnosestellung. Psychother Psychosom Med Psychol 1999; 51: 62–67.Google Scholar
Uzark KC, Sauer SN, Lawrence KS, Miller J, Addonizio L, Crowley DC. The psychosocial impact of pediatric heart transplantation. J Heart Lung Transpl 1992; 11: 1160–1167.Google Scholar
Katschnig H, Freeman H, Sartorius N (eds). Quality of Life in Mental Disorders. Wiley, Chichester, 1997.