Quality of Life Research

, Volume 22, Issue 8, pp 2063–2072 | Cite as

Well-being in mothers of children with congenital heart defects: a 3-year follow-up

  • Maria T. Grønning DaleEmail author
  • Øivind Solberg
  • Henrik Holmstrøm
  • Markus A. Landolt
  • Leif T. Eskedal
  • Margarete E. Vollrath



This prospective case–cohort study compared subjective well-being (SWB) among mothers whose children had various degrees of congenital heart defects (CHD) with mothers of children without CHD (controls).


Nationwide CHD registry data were linked to data collected from the Norwegian Mother and Child Cohort Study at gestational week 30, 6 months, and 36 months postpartum. A total of 175 mothers of children with mild, moderate, and severe CHD were identified in a cohort of 44,144 mothers. The SWB index was operationalized by means of three subscales: a cognitive aspect, positive affect, and negative affect.


Mothers of children with severe CHD reported significantly lower SWB than the controls at 6 months postpartum (p = .003), with further decrease in SWB at 36 months postpartum (p = .001). SWB levels in the mild and moderate CHD group did not deviate significantly from controls.


The findings suggest a pattern in which all stressors concerning the severely ill child lead to significant deterioration of maternal well-being. Having a child with mild or moderate CHD, which is a less severe and shorter-term stressor, did not reduce mothers’ well-being.


Congenital heart defects Longitudinal research Distress Motherhood Coping 



Congenital heart defect


Subjective well-being



The authors thank Bo Engdahl for his expert contribution to the statistical discussion prior to the final analysis of the data and Sarah E. Hampson for critically reviewing the paper for important intellectual content (NCR fund no. 194190). We are grateful to all the participating families who take part in this ongoing cohort study. A special thanks to the parents we met in the Oslo University Hospital who voluntarily took time to give us insight into their everyday lives and challenges for their children with CHD. The Norwegian Mother and Child Cohort Study is supported by the Norwegian Ministry of Health, NIH/NIEHS (grant no. N0-ES-75558), NIH/NINDS (grant no.1 UO1 NS 047537-01), and the Norwegian Research Council/FUGE (grant no. 186031/V50).

Conflict of interest

We declare that we have no conflicts of interest.

Ethical standards

The study has been approved by the Norwegian Regional Committee of Medical Ethics and by the Norwegian Data Inspectorate and is in agreement with the established international research codes of ethics.


  1. 1.
    Boneva, R. S., Botto, L. D., Moore, C. A., Yang, Q., Correa, A., & Erickson, J. D. (2001). Mortality associated with congenital heart defects in the United States: trends and racial disparities, 1979–1997. Circulation, 2001(103), 2376–2381.CrossRefGoogle Scholar
  2. 2.
    Eskedal, L., Hagemo, P. S., Eskild, A., Aamodt, G., Seiler, K. S., & Thaulow, E. (2005). Survival after surgery for congenital heart defects: does reduced early mortality predict improved long-term survival? Acta Paediatrica, 94, 438–443.PubMedCrossRefGoogle Scholar
  3. 3.
    Hoffman, J. I. E., & Kaplan, S. (2000). The incidence of congenital heart disease. Journal of the American College of Cardiology, 39, 1890–1900.CrossRefGoogle Scholar
  4. 4.
    Meberg, A., Otterstad, J. E., Froland, G., Lindberg, H., & Sorland, S. J. (2000). Outcome of congenital heart defects—A population-based study. Acta Paediatrica, 89, 1344–1351.PubMedCrossRefGoogle Scholar
  5. 5.
    Lawoko, S. (2007). Factors influencing satisfaction and well-being among parents of congenital heart disease children: Development of a conceptual model based on the literature review. Scandinavian Journal of Caring Sciences, 21, 106–117.PubMedCrossRefGoogle Scholar
  6. 6.
    Murphy, N. A., Christian, B., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care Health and Development, 33, 180–187.CrossRefGoogle Scholar
  7. 7.
    Utens, E. M., Versluis-Den Bieman, H. J., Verhulst, F. C., Witsenburg, M., Bogers, A. J. J. C., & Hess, J. (2000). Psychological distress and styles of coping in parents of children awaiting elective cardiac surgery. Cardiology in the Young, 10, 239–244.PubMedCrossRefGoogle Scholar
  8. 8.
    Wray, J., & Sensky, T. (2004). Psychological functioning in parents of children undergoing elective cardiac surgery. Cardiology in the Young, 14, 131–139.PubMedCrossRefGoogle Scholar
  9. 9.
    Cohn, J. K. (1996). An empirical study of parents’ reaction to the diagnosis of congenital heart disease in infants. Social Work in Health Care, 23, 67–79.PubMedCrossRefGoogle Scholar
  10. 10.
    Diener, E. (2009). Subjective Well-Being. In E. Diener (Ed.), The science of well-being (pp. 11–58). Netherlands: Springer.CrossRefGoogle Scholar
  11. 11.
    Diener, E. (1994). Assessing subjective well-being: Progress and opportunities. Social Indicators Research, 31, 103–157.CrossRefGoogle Scholar
  12. 12.
    Diener, E., Suh, E. M., Lucas, R. E., & Smith, H. L. (1999). Subjective well-being: Three decades of progress. Psychological Bulletin, 125, 276–302.CrossRefGoogle Scholar
  13. 13.
    Diener, E., & Suh, E. (1997). Measuring quality of life: Economic, social, and subjective indicators. Social Indicators Research, 40, 189–216.CrossRefGoogle Scholar
  14. 14.
    Røysamb, E. (2006). Personality and well-being. In M. E. Vollrath (Ed.), Handbook of personality and health (pp. 115–134). New York: Wiley.CrossRefGoogle Scholar
  15. 15.
    Barakat, L. P., Alderfer, M. A., & Kazak, A. E. (2006). Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Journal of Pediatric Psychology, 31, 413–419.PubMedCrossRefGoogle Scholar
  16. 16.
    Folkman, S., & Moskowitz, J. T. (2000). Positive affect and the other side of coping. American Psychologist, 55, 647–654.PubMedCrossRefGoogle Scholar
  17. 17.
    Suh, E., Diener, E., & Fujita, F. (1996). Events and subjective well-being: Only recent events matter. Journal of Personality and Social Psychology, 70, 1091–1102.PubMedCrossRefGoogle Scholar
  18. 18.
    Korkelia, J. (2000). Measuring aspects of mental health. National Research and Development Centre for Welfare and Health (Stakes): Helsinki.Google Scholar
  19. 19.
    Lawoko, S., & Soares, J. J. F. (2003). Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Quality of Life Research, 12, 655–666.PubMedCrossRefGoogle Scholar
  20. 20.
    Landolt, M. A., Buechel, E. V., & Latal, B. (2011). Predictors of parental quality of life after child open heart surgery: A 6-month prospective study. The Journal of Pediatrics, 158, 37–43.PubMedCrossRefGoogle Scholar
  21. 21.
    Arafa, M., Zaher, S., El Dowaty, A., & Moneeb, D. (2008). Quality of life among parents of children with heart disease. Health and Quality of Life Outcomes, 6, 91.PubMedCrossRefGoogle Scholar
  22. 22.
    Dale, M., Solberg, O., Holmstrøm, H., Landolt, M., Eskedal, L., & Vollrath, M. (2012). Mothers of infants with congenital heart defects: Well-being from pregnancy through the child’s first six months. Quality of Life Research, 21, 115–122.PubMedCrossRefGoogle Scholar
  23. 23.
    Magnus, P., Irgens, L. M., Haug, K., Nystad, W., Skjaerven, R., & Stoltenberg, C. (2006). Cohort profile: The Norwegian mother and child cohort study (MoBa). International Journal of Epidemiology, 35, 1146–1150.PubMedCrossRefGoogle Scholar
  24. 24.
    Irgens, L. M. (2000). The medical birth registry of Norway. Epidemiological research and surveillance throughout 30 years. Acta Obstetricia et Gynecologica Scandinavica, 79, 435–439.PubMedCrossRefGoogle Scholar
  25. 25.
    Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49, 71–75.PubMedCrossRefGoogle Scholar
  26. 26.
    Pavot, W., Diener, E., Colvin, C. R., & Sandvik, E. (1991). Further validation of the satisfaction with life scale: Evidence for the cross-method convergence of well-being measures. Journal of Personality Assessment, 57, 149–161.PubMedCrossRefGoogle Scholar
  27. 27.
    Pavot, W., & Diener, E. (1993). Review of the satisfaction with life scale. Psychological Assessment, 5, 164–172.CrossRefGoogle Scholar
  28. 28.
    Schafer, J. L., & Graham, J. W. (2002). Missing data: Our view of the state of the art. Psychological Methods, 7, 147–177.PubMedCrossRefGoogle Scholar
  29. 29.
    Dempster, A. P., Laird, N. M., & Rubin, D. B. (1977). Maximum likelihood from incomplete data via the EM algorithm. Journal of the Royal Statistical Society: Series B, 39, 1–38.Google Scholar
  30. 30.
    Tabachnick B. G., & Fidell, L. S. (2007). Using multivariate statistics. (5 ed.). Boston, MA: Pearson/Allyn and Bacon.Google Scholar
  31. 31.
    Brandlistuen, R. E., Stene-Larsen, K., Holmstrøm, H., Landolt, M. A., Eskedal, L. T., & Vollrath, M. E. (2011). Symptoms of communication and social impairment in toddlers with congenital heart defects. Child: Care Health and Development, 37, 37–43.CrossRefGoogle Scholar
  32. 32.
    Clemente, C., Barnes, J., Shinebourne, E., & Stein, A. (2001). Are infant behavioural feeding difficulties associated with congenital heart disease? Child: Care Health and Development, 27, 47–59.CrossRefGoogle Scholar
  33. 33.
    Stene-Larsen, K., Brandlistuen, R. E., Holmstrøm, H., Landolt, M. A., Eskedal, L. T., Engdahl, B., et al. (2011). Longitudinal analysis of emotional problems in children with congenital heart defects: A follow-up from age 6 to 36 months. Journal of Developmental and Behavioral Pediatrics, 32, 461–464.PubMedCrossRefGoogle Scholar
  34. 34.
    Tandberg, B. S., Ystrøm, E., Vollrath, M. E., & Holmstrøm, H. (2010). Feeding infants with CHD with breast milk: Norwegian mother and child cohort study. Acta Paediatrica, 2010(99), 373–378.CrossRefGoogle Scholar
  35. 35.
    Lawoko, S., & Soares, J. J. F. (2004). Satisfaction with care: A study of parents of children with congenital heart disease and parents of children with other diseases. Scandinavian Journal of Caring Sciences, 18, 90–102.PubMedCrossRefGoogle Scholar
  36. 36.
    Leiter, V., Krauss, M. W., Anderson, B., & Wells, N. (2004). The consequences of caring—Effects of mothering a child with special needs. Journal of Family Issues, 25, 379–403.CrossRefGoogle Scholar
  37. 37.
    Lawoko, S., & Soares, J. J. F. (2002). Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. Journal of Psychosomatic Research, 52, 193–208.PubMedCrossRefGoogle Scholar
  38. 38.
    Solberg, O., Grønning Dale, M. T., Holmstrøm, H., Eskedal, L. T., Landolt, M. A., & Vollrath, M. E. (2010). Long-term symptoms of depression and anxiety in mothers of infants with congenital heart defects. Journal of Pediatric Psychology, 36, 179–187.PubMedCrossRefGoogle Scholar
  39. 39.
    Uzark, K., & Jones, K. (2003). Parenting stress and children with heart disease. Journal of Pediatric Health Care, 17, 163–168.PubMedGoogle Scholar
  40. 40.
    Hobbs, D. F. (1968). Transition to parenthood: A replication and an extension. Journal of Marriage and Family, 30, 413–417.CrossRefGoogle Scholar
  41. 41.
    Mclanahan, S., & Adams, J. (1987). Parenthood and psychological well-being. Annual Review of Sociology, 13, 237–257.CrossRefGoogle Scholar
  42. 42.
    Antonovsky, A. (1987). Unraveling the mystery of health—How people manage stress and stay well. London: Jossey-Bass.Google Scholar
  43. 43.
    Spijkerboer, A. W., Helbing, W. A., Bogers, A. J. J. C., Van Domburg, R. T., Verhulst, F. C., & Utens, E. M. W. J. (2007). Long-term psychological distress, and styles of coping, in parents of children and adolescents who underwent invasive treatment for congenital cardiac disease. Cardiology in the Young, 17, 638–645.PubMedCrossRefGoogle Scholar
  44. 44.
    Mussatto, K. (2006). Adaptation of the child and family to life with a chronic illness. Cardiology in the Young, 16, 110–116.PubMedCrossRefGoogle Scholar
  45. 45.
    Lawoko, S., & Soares, J. J. F. (2006). Psychosocial morbidity among parents of children with congenital heart disease: A prospective longitudinal study. Heart and Lung, 35, 301–314.PubMedCrossRefGoogle Scholar
  46. 46.
    Huppert, F., Marks, N., Clark, A., Siegrist, J., Stutzer, A., Vittersø, J., et al. (2009). Measuring well-being across Europe: Description of the ESS well-being module and preliminary findings. Social Indicators Research, 91, 301–315.CrossRefGoogle Scholar
  47. 47.
    Meberg, A. (2008). Critical heart defects-the diagnostic challenge. Acta Paediatrica, 97, 1480–1483.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2012

Authors and Affiliations

  • Maria T. Grønning Dale
    • 1
    • 2
    Email author
  • Øivind Solberg
    • 1
    • 2
  • Henrik Holmstrøm
    • 3
  • Markus A. Landolt
    • 4
  • Leif T. Eskedal
    • 5
  • Margarete E. Vollrath
    • 1
    • 2
  1. 1.Department of Psychosomatics and Health BehaviorNorwegian Institute of Public HealthOsloNorway
  2. 2.Department of PsychologyUniversity of OsloOsloNorway
  3. 3.Department of PediatricsOslo University HospitalOsloNorway
  4. 4.Department of Psychosomatics and Psychiatry, Children’ Research CenterUniversity Children’s HospitalZurichSwitzerland
  5. 5.Department of PediatricsSørlandet Hospital HFKristiansandNorway

Personalised recommendations