Skip to main content

Advertisement

SpringerLink
Log in

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

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

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).

Methods

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.

Results

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.

Conclusions

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

Abbreviations

CHD:

Congenital heart defect

SWB:

Subjective well-being

References

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  3. Hoffman, J. I. E., & Kaplan, S. (2000). The incidence of congenital heart disease. Journal of the American College of Cardiology, 39, 1890–1900.

    Article  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  8. Wray, J., & Sensky, T. (2004). Psychological functioning in parents of children undergoing elective cardiac surgery. Cardiology in the Young, 14, 131–139.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  10. Diener, E. (2009). Subjective Well-Being. In E. Diener (Ed.), The science of well-being (pp. 11–58). Netherlands: Springer.

    Chapter  Google Scholar 

  11. Diener, E. (1994). Assessing subjective well-being: Progress and opportunities. Social Indicators Research, 31, 103–157.

    Article  Google Scholar 

  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.

    Article  Google Scholar 

  13. Diener, E., & Suh, E. (1997). Measuring quality of life: Economic, social, and subjective indicators. Social Indicators Research, 40, 189–216.

    Article  Google Scholar 

  14. Røysamb, E. (2006). Personality and well-being. In M. E. Vollrath (Ed.), Handbook of personality and health (pp. 115–134). New York: Wiley.

    Chapter  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  16. Folkman, S., & Moskowitz, J. T. (2000). Positive affect and the other side of coping. American Psychologist, 55, 647–654.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  18. Korkelia, J. (2000). Measuring aspects of mental health. National Research and Development Centre for Welfare and Health (Stakes): Helsinki.

    Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  25. Diener, E., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49, 71–75.

    Article  PubMed  CAS  Google Scholar 

  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.

    Article  PubMed  CAS  Google Scholar 

  27. Pavot, W., & Diener, E. (1993). Review of the satisfaction with life scale. Psychological Assessment, 5, 164–172.

    Article  Google Scholar 

  28. Schafer, J. L., & Graham, J. W. (2002). Missing data: Our view of the state of the art. Psychological Methods, 7, 147–177.

    Article  PubMed  Google Scholar 

  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. Tabachnick B. G., & Fidell, L. S. (2007). Using multivariate statistics. (5 ed.). Boston, MA: Pearson/Allyn and Bacon.

  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.

    Article  CAS  Google Scholar 

  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.

    Article  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  39. Uzark, K., & Jones, K. (2003). Parenting stress and children with heart disease. Journal of Pediatric Health Care, 17, 163–168.

    PubMed  Google Scholar 

  40. Hobbs, D. F. (1968). Transition to parenthood: A replication and an extension. Journal of Marriage and Family, 30, 413–417.

    Article  Google Scholar 

  41. Mclanahan, S., & Adams, J. (1987). Parenthood and psychological well-being. Annual Review of Sociology, 13, 237–257.

    Article  Google Scholar 

  42. Antonovsky, A. (1987). Unraveling the mystery of health—How people manage stress and stay well. London: Jossey-Bass.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  44. Mussatto, K. (2006). Adaptation of the child and family to life with a chronic illness. Cardiology in the Young, 16, 110–116.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  47. Meberg, A. (2008). Critical heart defects-the diagnostic challenge. Acta Paediatrica, 97, 1480–1483.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

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.

Author information

Authors and Affiliations

  1. Department of Psychosomatics and Health Behavior, Norwegian Institute of Public Health, Post Box 4404, Nydalen, 0403, Oslo, Norway

    Maria T. Grønning Dale, Øivind Solberg & Margarete E. Vollrath

  2. Department of Psychology, University of Oslo, Oslo, Norway

    Maria T. Grønning Dale, Øivind Solberg & Margarete E. Vollrath

  3. Department of Pediatrics, Oslo University Hospital, Oslo, Norway

    Henrik Holmstrøm

  4. Department of Psychosomatics and Psychiatry, Children’ Research Center, University Children’s Hospital, Zurich, Switzerland

    Markus A. Landolt

  5. Department of Pediatrics, Sørlandet Hospital HF, Kristiansand, Norway

    Leif T. Eskedal

Authors
  1. Maria T. Grønning Dale
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Øivind Solberg
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Henrik Holmstrøm
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Markus A. Landolt
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Leif T. Eskedal
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Margarete E. Vollrath
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Maria T. Grønning Dale.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Grønning Dale, M.T., Solberg, Ø., Holmstrøm, H. et al. Well-being in mothers of children with congenital heart defects: a 3-year follow-up. Qual Life Res 22, 2063–2072 (2013). https://doi.org/10.1007/s11136-012-0326-0

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-012-0326-0

Keywords

Search

Navigation