Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Article
  • Published:

Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the “Baby, Attachment, Comfort Interventions”

Journal of Perinatology volume 39, pages 1640–1647 (2019)Cite this article

Subjects

Abstract

Objective

To test our hypothesis that an innovative method of early palliative care called “Baby, Attachment, Comfort Interventions” reduces psychological distress in parents of neonates with congenital heart disease.

Study design

Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.

Results

Seventy-seven parents participated. Stress decreased in the intervention group (26 parents) but not in the control group (51 parents). There was no decrease in anxiety or depression in either group.

Conclusion

Early palliative care reduces stress in parents of neonates with congenital heart disease. Further work is needed to address depression/anxiety in this group of high-risk parents.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

References

  1. Woolf‐King SE, Anger A, Arnold EA, Weiss SJ, Teitel D. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc Cardiovasc Cerebrovasc Dis. 2017; 2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5523775/. Accessed 5 Nov 2018.

  2. Woolf‐King SE, Arnold E, Weiss S, Teitel D. “There’s no acknowledgement of what this does to people”: a qualitative exploration of mental health among parents of children with critical congenital heart defects. J Clin Nurs. 2018;27:2785–94.

    Article  Google Scholar 

  3. Doherty N, McCusker CG, Molloy B, Mulholland C, Rooney N, Craig B, et al. Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease. J Reprod Infant Psychol. 2009;27:390–400.

    Article  Google Scholar 

  4. Diffin J, Spence K, Naranian T, Badawi N, Johnston L. Stress and distress in parents of neonates admitted to the neonatal intensive care unit for cardiac surgery. Early Hum Dev. 2016;103:101–7.

    Article  CAS  Google Scholar 

  5. Sood E, Karpyn A, Demianczyk AC, Ryan J, Delaplane EA, Neely T, et al. Mothers and fathers experience stress of congenital heart disease differently: recommendations for pediatric critical care. Pedia Crit Care Med. 2018;19:626–34.

    Google Scholar 

  6. Lawoko S, Soares JJF. Psychosocial morbidity among parents of children with congenital heart disease: a prospective longitudinal study. Heart Lung. 2006;35:301–14.

    Article  Google Scholar 

  7. Franck LS, McQuillan A, Wray J, Grocott MPW, Goldman A. Parent stress levels during children’s hospital recovery after congenital heart surgery. Pedia Cardiol. 2010;31:961–8.

    Article  Google Scholar 

  8. Solberg Ø, Dale MTG, Holmstrøm H, Eskedal LT, Landolt MA, Vollrath ME. Long-term symptoms of depression and anxiety in mothers of infants with congenital heart defects. J Pedia Psychol. 2011;36:179–87.

    Article  Google Scholar 

  9. Miles MS, Funk SG, Kasper MA. The neonatal intensive care unit environment: sources of stress for parents. AACN Clin Issues Crit Care Nurs. 1991;2:346–54.

    Article  CAS  Google Scholar 

  10. Cleveland LM. Parenting in the neonatal intensive care unit. J Obstet Gynecol Neonatal Nurs. 2008;37:666–91.

    Article  Google Scholar 

  11. Bertaud S, Lloyd DFA, Laddie J, Razavi R. The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease. Arch Dis Child. 2016;101:984–7.

    Article  Google Scholar 

  12. Rychik J, Donaghue DD, Levy S, Fajardo C, Combs J, Zhang X, et al. Maternal psychological stress after prenatal diagnosis of congenital heart disease. J Pediatr. 2013;162:302–307. e1

    Article  Google Scholar 

  13. Helfricht S, Latal B, Fischer JE, Tomaske M, Landolt MA. Surgery-related posttraumatic stress disorder in parents of children undergoing cardiopulmonary bypass surgery: a prospective cohort study. Pedia Crit Care Med. 2008;9:217–23.

    Article  Google Scholar 

  14. Uzark K, Jones K. Parenting stress and children with heart disease. J Pedia Health Care. 2003;17:163–8.

    Article  Google Scholar 

  15. Melnyk BM, Feinstein NF, Alpert-Gillis L, Fairbanks E, Crean HF, Sinkin RA, et al. Reducing premature infants’ length of stay and improving parents’ mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) neonatal intensive care unit program: a randomized, controlled trial. Pediatrics. 2006;118:e1414–1427.

    Article  Google Scholar 

  16. Browne JV, Talmi A. Family-based intervention to enhance infant-parent relationships in the neonatal intensive care unit. J Pedia Psychol. 2005;30:667–77.

    Article  Google Scholar 

  17. Ravn IH, Smith L, Smeby NA, Kynoe NM, Sandvik L, Bunch EH, et al. Effects of early mother-infant intervention on outcomes in mothers and moderately and late preterm infants at age 1 year: a randomized controlled trial. Infant Behav Dev. 2012;35:36–47.

    Article  Google Scholar 

  18. Kaaresen PI, Rønning JA, Ulvund SE, Dahl LB. A randomized, controlled trial of the effectiveness of an early-intervention program in reducing parenting stress after preterm birth. Pediatrics. 2006;118:e9–19.

    Article  Google Scholar 

  19. Chertok IRA, McCrone S, Parker D, Leslie N. Review of interventions to reduce stress among mothers of infants in the NICU. Adv Neonatal Care. 2014;14:30–7.

    Article  Google Scholar 

  20. Lisanti AJ, Vittner D, Medoff-Cooper B, Fogel J, Wernovsky G, Butler S. Individualized family-centered developmental care: an essential model to address the unique needs of infants with congenital heart disease. J Cardiovasc Nurs. 2018;34:85–93.

    Article  Google Scholar 

  21. Kang TI, Munson D, Hwang J, Feudtner C. Integration of palliative care into the care of children with serious illness. Pedia Rev. 2014;35:318–26.

    Article  Google Scholar 

  22. Carter BS. Pediatric palliative care in infants and neonates. Children. 2018;5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5835990/. Accessed 5 Apr 2019.

  23. Parravicini E. Neonatal palliative care. Curr Opin Pediatr. 2017;29:135–40.

    Article  Google Scholar 

  24. Mazwi ML, Henner N, Kirsch R. The role of palliative care in critical congenital heart disease. Semin Perinatol. 2017;41:128–32.

    Article  Google Scholar 

  25. Ferrell BR, Twaddle ML, Melnick A, Meier DE. National consensus project clinical practice guidelines for quality palliative care guidelines, 4th ed. J Palliat Med. 2018. [Epub ahead of print].

  26. Hancock H, Pituch K, Uzark K, Bhat P, Fifer C, Silveira M, et al. A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease. Cardiol Young. 2018;28:561–70. https://digitalcommons.wustl.edu/open_access_pubs/6728.

    Article  Google Scholar 

  27. Parravicini E, Lorenz JM. Neonatal outcomes of fetuses diagnosed with life-limiting conditions when individualized comfort measures are proposed. J Perinatol. 2014;34:483–7.

    Article  CAS  Google Scholar 

  28. Neonatal Comfort Care Program. http://www.neonatalcomfortcare.com/. (2019).

  29. Jenkins KJ. Risk adjustment for congenital heart surgery: the RACHS-1 method. Semin Thorac Cardiovasc Surg Pedia Card Surg Annu. 2004;7:180–4.

    Article  Google Scholar 

  30. Medicine COFAN and SOAAP. Prevention and management of procedural pain in the neonate: an update. Pediatrics. 2016;137:e20154271.

    Article  Google Scholar 

  31. Lovibond PF, Lovibond SH. The structure of negative emotional states: comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behav Res Ther. 1995;33:335–43.

    Article  CAS  Google Scholar 

  32. Reid T, Bramwell R, Booth N, Weindling AM. A new stressor scale for parents experiencing neonatal intensive care: the NUPS (Neonatal Unit Parental Stress) scale. J Reprod Infant Psychol. 2007;25:66–82.

    Article  Google Scholar 

  33. Sinclair SJ, Siefert CJ, Slavin-Mulford JM, Stein MB, Renna M, Blais MA. Psychometric evaluation and normative data for the depression, anxiety, and stress scales-21 (DASS-21) in a nonclinical sample of U.S. adults. Eval Health Prof. 2012;35:259–79.

    Article  Google Scholar 

  34. Henderson J. It’s like going home to emptiness.” Becoming a mother and providing mother’s milk to premature infants in the neonatal intensive care unit, a latina mother’s perspective. 2015.

  35. Fischer AL, Butz C, Nicholson L, Blankenship A, Dyke P, Cua CL. Caregiver anxiety upon discharge for neonates with congenital heart disease. Congenit Heart Dis. 2012;7:41–5.

    Article  Google Scholar 

  36. Parravicini E, Daho’ M, Foe G, Steinwurtzel R, Byrne M. Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program. J Perinatol. 2018;38:142–7.

    Article  CAS  Google Scholar 

  37. CDC. Data and statistics on congenital heart defects. Centers for Disease Control and Prevention. 2019. https://www.cdc.gov/ncbddd/heartdefects/data.html.

  38. Guzman GG. Household income: 2017. Suitland, MD: US Census Bureau; 2018.

  39. Bureau UC. Educational Attainment in the United States. Bureau UC; 2018. https://www.census.gov/data/tables/2018/demo/education-attainment/cps-detailed-tables.html.

Download references

Acknowledgements

The authors thank the Neonatal Comfort Care Program team for their participation in and support of this study.

Author information

Author notes

  1. Katharine Callahan

    Present address: Childrenʼs Hospital of Philadelphia, Division of Neonatology, Philadelphia, PA, USA

Authors and Affiliations

  1. Department of Pediatrics, Columbia University Irving Medical Center/NewYork-Presbyterian, New York, NY, USA

    Katharine Callahan, Rochelle Steinwurtzel, Sarah Schechter & Elvira Parravicini

  2. New York University, New York, NY, USA

    Lyn Brumarie

Authors
  1. Katharine Callahan
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Rochelle Steinwurtzel
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Lyn Brumarie
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Sarah Schechter
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Elvira Parravicini
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

KPC, EP, and RS designed the study, collected the data, and wrote the manuscript. LB and SS managed, entered, and analyzed the data.

Corresponding author

Correspondence to Katharine Callahan.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Additional information

Publisher’s note: Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Callahan, K., Steinwurtzel, R., Brumarie, L. et al. Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the “Baby, Attachment, Comfort Interventions”. J Perinatol 39, 1640–1647 (2019). https://doi.org/10.1038/s41372-019-0490-y

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41372-019-0490-y

Search

Advanced search

Quick links