Skip to main content

Thank you for visiting 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.

Words matter: exploring communication between parents and neonatologists



To evaluate how neonatologists and NICU parents perceive communication in the NICU.

Study Design

A mixed-methods approach using an online survey and three focus groups with NICU parents and neonatologists, utilizing videos of simulated conversations between a neonatologist and mother.


A total of 72 participants responded to the online survey. Parents ranked the invasiveness of common NICU clinical procedures differently than the neonatologist standard but assessed the quality of the simulated conversation similarly. A total of 13 parents and 6 physicians participated in the focus groups. Major themes from both neonatologist and parent focus groups were the impact of making a connection with the parents, the importance of making decisions yet not making assumptions based on the divergent use of language by neonatologists and parents, and providing hope.


Parents and neonatologists differ in their perception of key aspects of NICU language use and communication but also agree on many aspects.

This is a preview of subscription content

Access options

Buy article

Get time limited or full article access on ReadCube.


All prices are NET prices.


  1. Ely DM, Driscoll AK. Infant mortality in the United States, 2017: data from the period linked birth/infant death file. Natl Vital- Stat Rep. 2019;68:1–20.

    PubMed  Google Scholar 

  2. Harrison W, Goodman D. Epidemiologic trends in neonatal intensive care, 2007–2012 | JAMA Pediatrics. JAMA Network. 2015;169:855–62.

    Google Scholar 

  3. Del Fabbro A, Cain K. Infant mental health and family mental health issues. Newborn Infant Nurs Rev. 2016;16:281–4.

    Article  Google Scholar 

  4. Alkozei A, McMahon E, Lahav A. Stress levels and depressive symptoms in NICU mothers in the early postpartum period. J Matern Fetal Neonatal Med. 2014;27:1738–43.

    Article  Google Scholar 

  5. Aftyka A, Rybojad B, Rozalska I, Rzonca P, Humeniuk E. Post-traumatic stress disorder in parents of children hospitalized in the neonatal intensive care unit (NICU): Medical and demographic risk factors. Psychiatr Danubina. 2014;26:347–52.

    Google Scholar 

  6. Gonya J, Nelin LD. Factors associated with maternal visitation and participation in skin-to-skin care in an all referral level IIIc NICU. Acta Paediatr. 2013;102:e53–56.

    Article  Google Scholar 

  7. Williams KG, Patel KT, Stausmire JM, Bridges C, Mathis MW, Barkin JL. The neonatal intensive care unit: environmental stressors and supports. Int J Environ Res Public Health. 2018;15:60.

    Article  Google Scholar 

  8. Enke C, Oliva y Hausmann A, Miedaner F, Roth B, Woopen C. Communicating with parents in neonatal intensive care units: the impact on parental stress. Patient Educ Counseling. 2017;100:710–9.

    Article  Google Scholar 

  9. Heydarpour S, Keshavarz Z, Bakhtiari M. Factors affecting adaptation to the role of motherhood in mothers of preterm infants admitted to the neonatal intensive care unit: a qualitative study. J Adv Nurs. 2017;73:138–48.

    Article  Google Scholar 

  10. Labrie NHM, van Veenendaal NR, Ludolph RA, Ket JCF, van der Schoor SRD, van Kempen AAMW. Effects of parent-provider communication during infant hospitalization in the NICU on parents: a systematic review with meta-synthesis and narrative synthesis. Patient Educ Couns 2021;104:1526–52.

    Article  Google Scholar 

  11. Slomian J, Honvo G, Emonts P, Reginster JY, Bruyère O. Consequences of maternal postpartum depression: A systematic review of maternal and infant outcomes. Women’s Health (Lond). 2019;15:1–55.

    Google Scholar 

  12. Fallon V, Groves R, Halford JC, Bennett KM, Harrold JA. Postpartum anxiety and infant-feeding outcomes. J Hum Lact. 2016;32:740–58.

    Article  Google Scholar 

  13. O’Brien K, Bracht M, Macdonell K, McBride T, Robson K, O’Leary L, et al. A pilot cohort analytic study of Family Integrated Care in a Canadian neonatal intensive care unit. BMC Pregnancy Childbirth. 2013;13:1–8.

    Article  Google Scholar 

  14. Weiss S, Goldlust E, Vaucher YE. Improving parent satisfaction: an intervention to increase neonatal parent-physician communication. J Perinatol. 2010;30:425–30.

    CAS  Article  Google Scholar 

  15. Berman L, Raval MV, Ottosen M, Mackow AK, Cho M, Goldin AB. Parent perspectives on readiness for discharge home after neonatal intensive care unit admission. J Pediatr. 2019;205:98–104.

    Article  Google Scholar 

  16. Lorié ES, Wreesmann WW, van Veenendaal NR, van Kempen AAMW, Labrie NHM. Parents’ needs and perceived gaps in communication with healthcare professionals in the neonatal (intensive) care unit: a qualitative interview study. Patient Educ Counseling. 2021;104:1518–25.

    Article  Google Scholar 

  17. Wigert H, Dellenmark Blom M, Bry K. Parents’ experiences of communication with neonatal intensive-care unit staff: an interview study. BMC Pediatr. 2014;14:304.

    Article  Google Scholar 

  18. Guttmann KF, Orfali K, Kelley AS. Measuring communication quality in the Neonatal Intensive Care Unit. Pediatr Res. 2021. Online ahead of print.

  19. Lacey J, Corbett J, Forni L, Hooper L, Hughes F, Minto G, et al. A multidisciplinary consensus on dehydration: definitions, diagnostic methods and clinical implications. Ann Med. 2019;51:232–51.

    Article  Google Scholar 

  20. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3:77–101.

    Article  Google Scholar 

  21. Immy H. Qualitative research in health care. McGraw-Hill Educ (UK). 2005;p90-102:147–65.

    Google Scholar 

  22. Umberger E, Canvasser J, Hall SL. Enhancing NICU parent engagement and empowerment. Semin Pediatr Surg. 2018;27:19–24.

    Article  Google Scholar 

  23. Gale G, Franck LS, Kools S, Lynch M. Parents’ perceptions of their infant’s pain experience in the NICU. Int J Nurs Stud. 2004;41:51–8.

    Article  Google Scholar 

  24. Clark OE, Fortney CA, Dunnells ZDO, Gerhardt CA, Baughcum AE. Parent perceptions of infant symptoms and suffering and associations with distress among bereaved parents in the NICU. J Pain Symptom Manag. 2021;S0885-3924:00209–8.

    Google Scholar 

  25. Wreesmann WW, Lorié ES, van Veenendaal NR, van Kempen AAMW, Ket JCF, Labrie NHM. The functions of adequate communication in the neonatal care unit: A systematic review and meta-synthesis of qualitative research. Patient Educ Counseling. 2020;104:1505–17.

    Article  Google Scholar 

  26. Drago M, Lorenz JM, Hammond J, Hardart GE, Morris MC. How to hold an effective NICU family meeting: capturing parent perspectives to build a more robust framework. J Perinatol. 2021;41:2217–24. Epub 2021 Apr 21.

  27. Boss RD, Urban A, Barnett MD, Arnold RM. Neonatal critical care communication (NC3): training NICU physicians and nurse practitioners. J Perinatol. 2013;33:642–6.

    CAS  Article  Google Scholar 

  28. Grobman WA, Kavanaugh K, Moro T, DeRegnier R-A, Savage T. Providing advice to parents for women at acutely high risk of periviable delivery. Obstet Gynecol. 2010;115:904–9.

    Article  Google Scholar 

  29. Guillén Ú, Mackley A, Laventhal N, Kukora S, Christ L, Derrick M, et al. Evaluating the use of a decision aid for parents facing extremely premature delivery: a randomized trial. J Pediatr. 2019;209:52–60.e1.

    Article  Google Scholar 

  30. Muthusamy AD, Leuthner S, Gaebler-Uhing C, Hoffmann RG, Li S-H, Basir MA. Supplemental written information improves prenatal counseling: a randomized trial. Pediatrics 2012;129:e1269–74.

    Article  Google Scholar 

  31. Arnolds M, Laventhal N. Perinatal counseling at the margin of gestational viability: where we’ve been, where we’re going, and how to navigate a path forward. J Pediatr. 2021;233:255–62.

    Article  Google Scholar 

  32. Drach LL. Communication between neonatologists and parents when prognosis is uncertain. J Perinatol. 2020;40:1412–22.

    Article  Google Scholar 

  33. Gaucher N, Payot A. From powerlessness to empowerment: Mothers expect more than information from the prenatal consultation for preterm labour. Paediatr Child Health. 2011;16:638–42.

    Article  Google Scholar 

  34. Jager S, Kavanaugh K, Hoffman S, Laitano T, Jeffries E, Tucker Edmonds B. Parents’ descriptions of neonatal palliation as a treatment option prior to periviable delivery. J Perinat Neonatal Nurs. 2020;34:178–85.

    Article  Google Scholar 

  35. Madrigal VN, Carroll KW, Hexem KR, Faerber JA, Morrison WE, Feudtner C. Parental decision-making preferences in the pediatric intensive care unit. Crit Care Med. 2012;40:2876–82.

    Article  Google Scholar 

  36. Feudtner C, Morrison W. The darkening veil of “do everything. Arch Pediatr Adolesc Med. 2012;166:694.

    Article  Google Scholar 

  37. Quill TE, Arnold R, Back AL. Discussing treatment preferences with patients who want “everything”. Ann Intern Med. 2009;151:345–9.

    Article  Google Scholar 

  38. French KB. Care of extremely small premature infants in the neonatal intensive care unit: a parent’s perspective. Clin Perinatol. 2017;44:275–82.

    Article  Google Scholar 

  39. Boss RD, Hutton N, Sulpar LJ, West AM, Donohue PK. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 2008;122:583–9.

    Article  Google Scholar 

  40. Kaemingk BD, Carroll K, Thorvilson MJ, Schaepe KS, Collura CA. Uncertainty at the limits of viability: a qualitative study of antenatal consultations. Pediatrics. 2021;147:e20201865. Epub 2021 Mar 3.

Download references


Supported by Brown Summer Assistantship Funding.

Author information




RW designed the qualitative study, conducted all focus groups, administered survey, wrote manuscript, and approved final manuscript. CH contributed to study, designed quantitative survey and approved final manuscript. RT conducted statistical analysis and approved final manuscript. KH edited manuscript, performed thematic analysis, and approved final manuscript. BEL substantially contributed to study design, data acquisition, data analysis, edited and approved the final manuscript as submitted.

Corresponding authors

Correspondence to Roger Winters or Beatrice E. Lechner.

Ethics declarations

Competing interests

The authors declare no competing interests.

Ethics approval and consent to participate

The study was conducted with the approval of the Women and Infants hospital Internal Review Board and was given exempt status. Informed consent was obtained from all participants in the study. The study was performed in accordance with the Declaration of Helsinki.

Additional information

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

Supplementary information

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Winters, R., Hennigan, C.M., Tucker, R. et al. Words matter: exploring communication between parents and neonatologists. J Perinatol (2022).

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • DOI:


Quick links