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Quality of Life Research

, Volume 14, Issue 8, pp 1915–1924 | Cite as

Quality of Life in Families of Children with Congenital Heart Disease

  • Lutz Goldbeck
  • Juliane Melches
Article

Abstract

Within a family perspective on quality of life (QL) with congenital heart disease, the study investigates parental QL, and patients’ health-related QL as reported by themselves and by their parents. We examined the hypotheses that parental QL moderates the parental proxy reports. Sixty-nine patients (7–20 years, 61% male) and their caregivers participated in a computer-assisted QL-assessment. Children’s self-rated and proxy-rated QL correlated moderately, with the highest intra-class correlation on the subscale psychological well-being/functioning (r = 0.61; p < 0.001), less convergence in physical well-being/functioning (r = 0.49; p< 0.001) and absent correlation in the evaluation of intra-family relationships. Parental QL was correlated both with the children’s self-rated QL (r = 0.42; p< 0.05) and children’s parent-rated QL (r = 0.60; p< 0.001). Support for the moderator hypotheses is indicated by the results of regression analyses demonstrating a significant interaction effect of parental QL and patients’ self-reported QL in predicting parental proxy reports on their children’s QL. Post-hoc tests reveal that parents with low own QL agree significantly more with their children than parents with high QL. Parent–child agreement on the children’s QL is limited and reflects complementary subjective viewpoints. Psychosocial interventions should be family-focused and provide support for patients’ and their caregivers’ QL.

Keywords

Congenital heart disease Family aspects Multi-informant assessment Quality of life 

Abbreviations

CHD

chronic heart disease

QL

quality of life

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References

  1. 1.
    Gortmaker, SL, Walker, DB, Weitzman, M, Sobol, AM. 1990Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescentsPediatrics85267276PubMedGoogle Scholar
  2. 2.
    Resch, F, Salzer-Muhar, U, Mutschlechner, R, Wimmer, M. 1996Kognitive und psychosoziale Risikofaktoren der Selbstentwicklung bei Kindern mit angeborenen HerzfehlernLehmkuhl, G. eds. Chronisch kranke Kinder und ihre FamilienQuintessenzMünchen240249Google Scholar
  3. 3.
    Lawoko, S, Soares, JJF. 2002Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy childrenJ Psychosom Res52193208CrossRefPubMedGoogle Scholar
  4. 4.
    Eiser, C, Morse, R. 2001Can parents rate their childs health-related quality of life?Results of a systematic review. Qual Life Res10347357CrossRefGoogle Scholar
  5. 5.
    Drotar, D eds. 1998Measuring Health Related Quality of Life in Children and AdolescentsLawrence Earlbaum AssociatesMahwah NJGoogle Scholar
  6. 6.
    Bullinger, M, Schmidt, S, Peterson, C. 2002Assessing quality of life of children with chronic health conditions and disabilities: a European approachInt J Rehabil Res25197206CrossRefPubMedGoogle Scholar
  7. 7.
    Quittner, AL, Davis, MA, Modi, AC. 2003Health-related quality of life in pediatric populationsRoberts, M. eds. Handbook of Pediatric Psychology3New YorkGuildford696709Google Scholar
  8. 8.
    Theunissen, NCM, Vogels, TGC, Koopman, HM,  et al. 1998The proxy problem: child report versus parent report in health-related quality of life researchQual Life Res7387397CrossRefPubMedGoogle Scholar
  9. 9.
    Landgraf, JM, Maunsell, E, Nixon Speechley, K,  et al. 1998Canadian–French, German and UK versions of the Child Health Questionnaire. Methodology and preliminary item scaling resultsQual Life Res7433445CrossRefPubMedGoogle Scholar
  10. 10.
    Varni JW. The Peds QL 4.0 Measurement Model for the Pediatric Quality of Life Inventory TM Version 40. www.pedsql.org 2004Google Scholar
  11. 11.
    Uzark, K, Jones, K, Burwinkle, TM, Varni, JW. 2003The pediatric quality of life inventory in children with heart diseaseProg Pediatr Cardio18141148CrossRefGoogle Scholar
  12. 12.
    Eiser, C, Morse, R. 2001The measurement of quality of life in children: past and future perspectivesDevel Behav Pediatr2224856Google Scholar
  13. 13.
    Jachuk, SJ, Bierley, H, Jachuk, S, Willcox, PM. 1982The effects of hypotensive drugs on the quality of lifeJ R Col Gen Pract17197201Google Scholar
  14. 14.
    Connolly, D, Rutkowski, M, Auslender, M, Artman, M. 2002Measuring health-related quality of life in children with heart diseaseAppl Nurs Res157480CrossRefPubMedGoogle Scholar
  15. 15.
    Sturms, LM, Sluis, CK, Groothoff, JW, ten Duis, HJ, Eisma, WH. 2003Young traffic victims’ long-term health-related quality of life: child self-reports and parental reportsArch of Phys Med and Rehabil84431436CrossRefGoogle Scholar
  16. 16.
    Achenbach, TM, McConaughy, SH, Howell, CT. 1987Child/adolescent behavioral and emotional problems: implications of cross-informant correlations for situational specifityPsychol Bull101213232CrossRefPubMedGoogle Scholar
  17. 17.
    Verrips, GHW, Vogels, AGC, den Ouden, AL, Paneth, N, Verloove-Vanhorick, SP. 2000Measuring health-related quality of life in adolescents: agreement between raters and between methods of administrationChild Care Health Dev26457469CrossRefPubMedGoogle Scholar
  18. 18.
    Annett, RD, Bender, BG, Du Hamel, TR, Lapidus, J. 2003Factors influencing parent reports on quality of life for children with asthmaJ Asthma40577587CrossRefPubMedGoogle Scholar
  19. 19.
    Price, MR, Bratton, DL, Klinnert, MD. 2002Caregiver negative affect is a primary determinant of caregiver report of pediatric asthma quality of lifeAnn Allergy Asthma Immunol89572577PubMedGoogle Scholar
  20. 20.
    Vila, G, Hayder, R, Bertrand, C,  et al. 2003Psychopathology and quality of life for adolescents with asthma and their parentsPsychosomatics44319328CrossRefPubMedGoogle Scholar
  21. 21.
    Cohen, S. 1999Families coping with childhood chronic illness: a research reviewFam Syst Health17149164Google Scholar
  22. 22.
    Thompson, RJ, Gustafson, KE. 1996Adaptation to Chronic Childhood IllnessAmerican Psychological AssociationWashington, DCGoogle Scholar
  23. 23.
    Wallander, JL, Varni, JW, Babani, L, Banis, T, Wilcox, KT. 1989Family resources as resistance factors for psychological maladjustment in chronically ill and handicapped childrenJ Pediatr Psychol14157173PubMedGoogle Scholar
  24. 24.
    Lawoko, S, Soares, JJF. 2003Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy childrenQual Life Res12655666CrossRefPubMedGoogle Scholar
  25. 25.
    Davis, CC, Brown, RT, Bakeman, R, Campbell, R. 1998Psychological adaption and adjustment of mothers of children with congenital heart disease: stress, coping, and family functioningJ Pediatr Psychol28219228Google Scholar
  26. 26.
    Kirschenbaum Cohn, J. 1996An empirical study of parents‘reaction to the diagnosis of congenital heart disease in infantsSoc Work Health Care236779Google Scholar
  27. 27.
    Uzark, K, Jones, K. 2003Parenting stress and children with heart diseaseJ Pediat Health Care17163168CrossRefGoogle Scholar
  28. 28.
    Goldbeck, L, Braun, R. 2003LQ-KID – Ein computergestütztes Verfahren zur Erfassung der Lebensqualität chronisch kranker Kinder und JugendlicherPrävent Rehabil15117126Google Scholar
  29. 29.
    Goldbeck, L, Storck, M. 2003ULQIE – Ulmer Lebensqualitäts-Inventar für Eltern chronisch kranker KinderSchumacher, JKlaiberg, ABrähler, E eds. Diagnostische Verfahren zu Lebensqualität und WohlbefindenGöttingenHogrefe313315Google Scholar
  30. 30.
    Ware JE, Snow KK, Kosinski M, Gandek B. (1993) SF-36 Health Survey Manual. Boston, JE. WareGoogle Scholar
  31. 31.
    Baron, RM, Kenny, DA. 1986The moderator – mediator variable distinction in social psychological research: Conceptual, strategic, and statistical considerationsJ Personal Soc Psychol5111731182CrossRefGoogle Scholar
  32. 32.
    Holmbeck, GN. 1997Toward terminological, conceptual, and statistical clarity in the study of mediators and moderators: examples from the child-clinical and pediatric psychology literaturesJ Consult Clin Psychol65599610CrossRefPubMedGoogle Scholar
  33. 33.
    Aiken, L, West, SG. 1991Multiple Regression: Testing and Interpreting InteractionsSageNewbury Park, CAGoogle Scholar
  34. 34.
    Holmbeck, GN. 2002Post-hoc probing of significant moderational and mediational effects in studies of pediatric populationsJ Pediatr Psychol278796CrossRefPubMedGoogle Scholar
  35. 35.
    Bullinger, M. 2000Lebensqualität – Aktueller Stand und neuere Entwicklungen der internationalen LebensqualitätsforschungRavens-Sieberer, UCieza, A eds. Lebensqualität und Gesundheitsökonomie in der Medizin. Konzepte – Methoden – AnwendungLandsbergEcomed1324Google Scholar
  36. 36.
    McCubbin, MA, McCubbin, HI. 1991Family stress theory and assessment. the resiliency model of family stress, adjustment, and adaptationMcCubbin, HIThompson, AI eds. Family Assessment Inventories for Research and PracticeMadison, Wisconsin, University of WisconsinMadison332Google Scholar

Copyright information

© Springer 2005

Authors and Affiliations

  1. 1.University Clinic of Child and Adolescent Psychiatry/Psychotherapy, UlmUlmGermany

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