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.

  • Review Article
  • Published:

Families as partners in neonatal neuro-critical care programs

Pediatric Research (2024)Cite this article

Abstract

Parents of neonates with neurologic conditions face a specific breadth of emotional, logistical, and social challenges, including difficulties coping with prognostic uncertainty, the need to make complex medical decisions, and navigating new hopes and fears. These challenges place parents in a vulnerable position and at risk of developing mental health issues, which can interfere with bonding and caring for their neonate, as well as compromise their neonate’s long-term neurodevelopment. To optimize neurologic and developmental outcomes, emerging neonatal neuro-critical care (NNCC) programs must concurrently attend to the unique needs of the developing newborn brain and of his/her parents. This can only be accomplished by embracing a family-centered care environment—one which prioritizes effective parent-clinician communication, longitudinal parent support, and parents as equitable partners in clinical care. NNCC programs offer a multifaceted approach to critical care for neonates at-risk for neurodevelopmental impairments, integrating expertise in neonatology and neurology. This review highlights evidence-based strategies to guide NNCC programs in developing a family-partnered approach to care, including primary staffing models; staff communication, implicit bias, and cultural competency trainings; comprehensive and tailored caregiver training; single-family rooms; flexible visitation policies; colocalized neonatal and maternal care; uniform mental health screenings; follow-up care referrals; and connections to peer support.

Impact

  • Parents of neonates with neurologic conditions are at high-risk for experiencing mental health issues, which can adversely impact the parent-neonate relationship and long-term neurodevelopmental outcomes of their neonates.

  • While guidelines to promote families as partners in the neonatal intensive care unit (NICU) have been developed, no protocols integrate the unique needs of parents in neonatal neurologic populations.

  • A holistic approach that makes families true partners in the care of their neonate with a neurologic condition in the NICU has the potential to improve mental and physical well-being for both parents and neonates.

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

Similar content being viewed by others

References

  1. National Research Council (US) and Institute of Medicine (US) Committee on Integrating the Science of Early Childhood Development. From Neurons to Neighborhoods: The Science of Early Childhood Development (eds Shonkoff, J. P. & Phillips, D. A.) (National Academies Press, 2000).

  2. Garner, A. S. et al. Early childhood adversity, toxic stress, and the role of the pediatrician: translating developmental science into lifelong health. Pediatrics 129, e224–e231 (2012).

    Article  PubMed  Google Scholar 

  3. Verbeek, T. et al. Postpartum depression predicts offspring mental health problems in adolescence independently of parental lifetime psychopathology. J. Affect Disord. 136, 948–954 (2012).

    Article  PubMed  Google Scholar 

  4. Lahti, M. et al. Maternal depressive symptoms during and after pregnancy and psychiatric problems in children. J. Am. Acad. Child Adolesc. Psychiatry 56, 30–39.e37 (2017).

    Article  PubMed  Google Scholar 

  5. Earls, M. F., Yogman, M. W., Mattson, G. & Rafferty, J. Incorporating recognition and management of perinatal depression into pediatric practice. Pediatrics 143, e20183259 (2019).

    Article  PubMed  Google Scholar 

  6. Field, T. Postnatal anxiety prevalence, predictors and effects on development: a narrative review. Infant Behav. Dev. 51, 24–32 (2018).

    Article  PubMed  Google Scholar 

  7. McManus, B. M. & Poehlmann, J. Maternal depression and perceived social support as predictors of cognitive function trajectories during the first 3 years of life for preterm infants in Wisconsin. Child Care Health Dev. 38, 425–434 (2012).

    Article  CAS  PubMed  Google Scholar 

  8. Huhtala, M. et al. Parental psychological well-being and behavioral outcome of very low birth weight infants at 3 years. Pediatrics 129, e937–e944 (2012).

    Article  PubMed  Google Scholar 

  9. Gray, R. F., Indurkhya, A. & McCormick, M. C. Prevalence, stability, and predictors of clinically significant behavior problems in low birth weight children at 3, 5, and 8 years of age. Pediatrics 114, 736–743 (2004).

    Article  PubMed  Google Scholar 

  10. Hoffman, C., Dunn, D. M. & Njoroge, W. F. M. Impact of postpartum mental illness upon infant development. Curr. Psychiatry Rep. 19, 100 (2017).

    Article  PubMed  Google Scholar 

  11. Bansal, S. et al. Supporting disclosure of unmet mental health needs among parents of critically ill infants. J. Pediatr. 262, 113596 (2023).

    Article  PubMed  Google Scholar 

  12. Lemmon, M. E., Donohue, P. K., Parkinson, C., Northington, F. J. & Boss, R. D. Communication challenges in neonatal encephalopathy. Pediatrics 138, e20161234 (2016).

  13. Lemmon, M. et al. Parent experience of caring for neonates with seizures. Arch. Dis. Child Fetal Neonatal Ed. 105, 634–639 (2020).

    Article  PubMed  Google Scholar 

  14. Pineda, R. et al. Parent participation in the neonatal intensive care unit: predictors and relationships to neurobehavior and developmental outcomes. Early Hum. Dev. 117, 32–38 (2018).

    Article  PubMed  Google Scholar 

  15. Garten, L., Maass, E., Schmalisch, G. & Bührer, C. O father, where art thou? Parental NICU visiting patterns during the first 28 days of life of very low-birth-weight infants. J. Perinat. Neonatal Nurs. 25, 342–348 (2011).

    Article  PubMed  Google Scholar 

  16. Sigurdson, K. et al. Former NICU families describe gaps in family-centered care. Qual. Health Res. 30, 1861–1875 (2020).

    Article  PubMed  PubMed Central  Google Scholar 

  17. Pilon, B., Craig, A. K., Lemmon, M. E. & Goeller, A. Supporting families in their child’s journey with neonatal encephalopathy and therapeutic hypothermia. Semin. Fetal Neonatal Med. 26, 101278 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  18. O’Brien, K. et al. Effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial. Lancet Child Adolesc. Health 2, 245–254 (2018).

    Article  PubMed  Google Scholar 

  19. Reynolds, L. C. et al. Parental presence and holding in the neonatal intensive care unit and associations with early neurobehavior. J. Perinatol. 33, 636–641 (2013).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  20. Bera, A. et al. Effect of kangaroo mother care on growth and development of low birthweight babies up to 12 months of age: a controlled clinical trial. Acta Paediatr. 103, 643–650 (2014).

    Article  PubMed  Google Scholar 

  21. Twohig, A. et al. The preterm infant-parent programme for attachment-PIPPA study: a randomised controlled trial. Pediatr. Res. 90, 617–624 (2021).

    Article  PubMed  Google Scholar 

  22. Craig, A. K., Gerwin, R., Bainter, J., Evans, S. & James, C. Exploring parent expectations of neonatal therapeutic hypothermia. J. Perinatol. 38, 857–864 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  23. Craig, A. K., Gerwin, R., Bainter, J., Evans, S. & James, C. Exploring parent experience of communication about therapeutic hypothermia in the neonatal intensive care unit. Adv. Neonatal Care 18, 136–143 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  24. Craig, A. K., James, C., Bainter, J., Evans, S. & Gerwin, R. Parental perceptions of neonatal therapeutic hypothermia; emotional and healing experiences. J. Matern. Fetal Neonatal Med.33, 1–171 (2018).

  25. Pilon, B. Family reflections: hope for hie. Pediatr. Res. 86, 672–673 (2019).

    Article  PubMed  Google Scholar 

  26. Craig, A., Deerwester, K., Fox, L., Jacobs, J. & Evans, S. Maternal holding during therapeutic hypothermia for infants with neonatal encephalopathy is feasible. Acta Paediatr. 108, 1597–1602 (2019).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  27. Bäcke, P., Hjelte, B., Hellström Westas, L., Ågren, J. & Thernström Blomqvist, Y. When all I wanted was to hold my baby—the experiences of parents of infants who received therapeutic hypothermia. Acta Paediatr.110, 480–486 (2021).

  28. Arora, I., Bhandekar, H., Lakra, A., Lakra, M. S. & Khadse, S. S. Filling the gaps for feeding difficulties in neonates with hypoxic-ischemic encephalopathy. Cureus 14, e28564 (2022).

    PubMed  PubMed Central  Google Scholar 

  29. Bracht, M., OʼLeary, L., Lee, S. K. & OʼBrien, K. Implementing family-integrated care in the NICU: a parent education and support program. Adv. Neonatal Care 13, 115–126 (2013).

    Article  PubMed  Google Scholar 

  30. Dahan, S. et al. Peer support groups for families in neonatology: why and how to get started? Acta Paediatr. 109, 2525–2531 (2020).

  31. Archibald, S.-J. What about fathers? A review of a fathers’ peer support group on a neonatal intensive care unit. J. Neonatal Nurs. 25, 272–276 (2019).

    Article  Google Scholar 

  32. Fraiman, Y. S., Barrero-Castillero, A. & Litt, J. S. Implications of racial/ethnic perinatal health inequities on long-term neurodevelopmental outcomes and health services utilization. Semin. Perinatol. 46, 151660 (2022).

    Article  PubMed  Google Scholar 

  33. Ravi, D., Iacob, A. & Profit, J. Unequal care: racial/ethnic disparities in neonatal intensive care delivery. Semin. Perinatol. 45, 151411 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  34. Glazer, K. B., Sofaer, S., Balbierz, A., Wang, E. & Howell, E. A. Perinatal care experiences among racially and ethnically diverse mothers whose infants required a NICU stay. J. Perinatol. 41, 413–421 (2021).

    Article  PubMed  Google Scholar 

  35. Cricco-Lizza, R. Black non-Hispanic mothers’ perceptions about the promotion of infant-feeding methods by nurses and physicians. J. Obstet. Gynecol. Neonatal Nurs. 35, 173–180 (2006).

    Article  PubMed  Google Scholar 

  36. Lee, H. C., Gould, J. B., Martin-Anderson, S. & Dudley, R. A. Breast-milk feeding of very low birth weight infants as a function of hospital demographics. J. Perinatol. 31, S82 (2011).

    Article  Google Scholar 

  37. Profit, J. et al. Racial/ethnic disparity in NICU quality of care delivery. Pediatrics 140, e20170918 (2017).

    Article  PubMed  Google Scholar 

  38. McGowan, E. C., Abdulla, L. S., Hawes, K. K., Tucker, R. & Vohr, B. R. Maternal immigrant status and readiness to transition to home from the NICU. Pediatrics 143, e20182657 (2019).

  39. Sigurdson, K., Morton, C., Mitchell, B. & Profit, J. Disparities in NICU quality of care: a qualitative study of family and clinician accounts. J. Perinatol. 38, 600–607 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  40. Martin, A. E., D’Agostino, J. A., Passarella, M. & Lorch, S. A. Racial differences in parental satisfaction with neonatal intensive care unit nursing care. J. Perinatol. 36, 1001–1007 (2016).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  41. Back, A. L. et al. Efficacy of communication skills training for giving bad news and discussing transitions to palliative care. Arch. Intern. Med. 167, 453–460 (2007).

    Article  PubMed  Google Scholar 

  42. Kodjebacheva, G. D., Sabo, T. & Xiong, J. Interventions to improve child-parent-medical provider communication: a systematic review. Soc. Sci. Med. 166, 120–127 (2016).

    Article  PubMed  Google Scholar 

  43. Tulsky, J. A. et al. A research agenda for communication between health care professionals and patients living with serious illness. JAMA Intern. Med. 177, 1361–1366 (2017).

    Article  PubMed  Google Scholar 

  44. Nikendei, C. et al. Outcome of parent-physician communication skills training for pediatric residents. Patient Educ. Couns. 82, 94–99 (2011).

    Article  PubMed  Google Scholar 

  45. Henner, N. & Boss, R. D. Neonatologist training in communication and palliative care. Semin. Perinatol. 41, 106–110 (2017).

    Article  PubMed  Google Scholar 

  46. Weiss, S., Goldlust, E. & Vaucher, Y. E. Improving parent satisfaction: an intervention to increase neonatal parent-provider communication. J. Perinatol. 30, 425–430 (2010).

    Article  CAS  PubMed  Google Scholar 

  47. Toivonen, M., Lehtonen, L., Loyttyniemi, E., Ahlqvist-Bjorkroth, S. & Axelin, A. Close collaboration with parents intervention improves family-centered care in different neonatal unit contexts: a pre-post study. Pediatr. Res. 88, 421–428 (2020).

  48. Janvier, A., Lantos, J. & Investigators, P. Ethics and etiquette in neonatal intensive care. JAMA Pediatr. 168, 857–858 (2014).

    Article  PubMed  Google Scholar 

  49. Benzies, K. M. Relational communications strategies to support family-centered neonatal intensive care. J. Perinat. Neonatal Nurs. 30, 233–236 (2016).

    Article  PubMed  Google Scholar 

  50. Cummings, J. Committee on Fetus and Newborn. Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation. Pediatrics 136, 588–595 (2015).

    Article  PubMed  Google Scholar 

  51. Haward, M. F., Gaucher, N., Payot, A., Robson, K. & Janvier, A. Personalized decision making: practical recommendations for antenatal counseling for fragile neonates. Clin. Perinatol. 44, 429–445 (2017).

    Article  PubMed  Google Scholar 

  52. Tysdahl, C., Tysdahl, T., Wendt, J., Wendt, L. & Feltman, D. M. Helping families navigate center variability in antenatal counseling for extremely early births. Pediatrics 144, e20191625 (2019).

  53. Marc-Aurele, K. L., Hull, A. D., Jones, M. C. & Pretorius, D. H. A fetal diagnostic center’s referral rate for perinatal palliative care. Ann. Palliat. Med. 7, 177–185 (2018).

    Article  PubMed  Google Scholar 

  54. Kukora, S., Gollehon, N. & Laventhal, N. Antenatal palliative care consultation: implications for decision-making and perinatal outcomes in a single-centre experience. Arch. Dis. Child Fetal Neonatal Ed. 102, F12–F16 (2017).

    Article  PubMed  Google Scholar 

  55. Mefford, L. C. & Alligood, M. R. Evaluating nurse staffing patterns and neonatal intensive care unit outcomes using Levine’s conservation model of nursing. J. Nurs. Manag 19, 998–1011 (2011).

    Article  PubMed  Google Scholar 

  56. Nadeau, K., Pinner, K., Murphy, K. & Belderson, K. M. Perceptions of a primary nursing care model in a pediatric hematology/oncology unit. J. Pediatr. Oncol. Nurs. 34, 28–34 (2017).

    Article  PubMed  Google Scholar 

  57. Manley, K., Hamill, J. M. & Hanlon, M. Nursing staff’s perceptions and experiences of primary nursing practice in intensive care 4 years on. J. Clin. Nurs. 6, 277–287 (1997).

    Article  CAS  PubMed  Google Scholar 

  58. Glass, H. C., Rogers, E. E., Peloquin, S. & Bonifacio, S. L. Interdisciplinary approach to neurocritical care in the intensive care nursery. Semin. Pediatr. Neurol. 21, 241–247 (2014).

    Article  PubMed  Google Scholar 

  59. Peloquin, S., Carley, A., Bonifacio, S. L. & Glass, H. C. The neurointensive care nursery and evolving roles for nursing. Neonatal Netw. 35, 87–94 (2016).

    Article  PubMed  Google Scholar 

  60. Davidson, J. E. et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004–2005. Crit. Care Med. 35, 605–622 (2007).

    Article  PubMed  Google Scholar 

  61. Davidson, J. E. et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit. Care Med. 45, 103–128 (2017).

    Article  PubMed  Google Scholar 

  62. Bidegain, M. & Younge, N. Comfort care vs. palliative care: is there a difference in neonates? Neoreviews 16, 333–339 (2015).

    Article  Google Scholar 

  63. Lemmon, M. E., Bidegain, M. & Boss, R. D. Palliative care in neonatal neurology: robust support for infants, families and clinicians. J. Perinatol. 36, 331–337 (2016).

    Article  CAS  PubMed  Google Scholar 

  64. Denham, M. E., Bushehri, Y. & Lim, L. Through the eyes of the user: evaluating neonatal intensive care unit design. Health Environ. Res. Des. J. 11, 49–65 (2018).

    Google Scholar 

  65. O’Callaghan, N., Dee, A. & Philip, R. K. Evidence-based design for neonatal units: a systematic review. Matern. Health Neonatol. Perinatol. 5, 6 (2019).

    Article  PubMed  PubMed Central  Google Scholar 

  66. Griffin, T. Family-centered care in the NICU. J. Perinatal Neonatal Nurs. 20, 98–102 (2006).

  67. Loewy, J. Nicu music therapy: song of kin as critical lullaby in research and practice. Ann. N. Y. Acad. Sci. 1337, 178–185 (2015).

    Article  PubMed  Google Scholar 

  68. Shepley, M. M., Harris, D. D. & White, R. Open-bay and single-family room neonatal intensive care units: caregiver satisfaction and stress. Environ. Behav. 40, 249–268 (2008).

    Article  Google Scholar 

  69. Griffin, T. A family-centered “Visitation” policy in the neonatal intensive care unit that welcomes parents as partners. J. Perinatal Neonatal Nurs. 27, 160–165 (2013).

  70. Stelwagen, M. A., van Kempen, A. A. M. W., Westmaas, A., Blees, Y. J. & Scheele, F. Integration of maternity and neonatal care to empower parents. J. Obstet. Gynecol. Neonatal Nurs. 49, 65–77 (2020).

    Article  PubMed  Google Scholar 

  71. Lee, L. A., Carter, M., Stevenson, S. B. & Harrison, H. A. Improving family-centered care practices in the NICU. Neonatal Netw. 33, 125–132 (2014).

    Article  PubMed  Google Scholar 

  72. Murray, P. D. & Swanson, J. R. Visitation restrictions: is it right and how do we support families in the NICU during Covid-19? J. Perinatol. 40, 1576–1581 (2020).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  73. Kilpatrick, S.J. & Papile, L. Guidelines for Perinatal Care8th edn. (American Academy of Pediatrics & American College of Obstetricians and Gynecologists, 2017).

  74. White, R. D., on behalf of the Consensus Committee on Recommended Design Standards for Advanced Neonatal, C. Recommended standards for newborn ICU design, 9th edition. J. Perinatol. 40, 2–4 (2020).

    Article  PubMed  Google Scholar 

  75. Watson, J., DeLand, M., Gibbins, S., MacMillan York, E. & Robson, K. Improvements in Staff quality of work life and family satisfaction following the move to single-family room NICU design. Adv. Neonatal Care 14, 129–136 (2014).

    Article  PubMed  Google Scholar 

  76. Stevens, D. C. et al. A comprehensive comparison of open-bay and single-family-room neonatal intensive care units at sanford children’s hospital. Health Environ. Res. Des. J. 5, 23–39 (2012).

    Google Scholar 

  77. Lester, B. M. et al. Single-family room care and neurobehavioral and medical outcomes in preterm infants. Pediatrics 134, 754–760 (2014).

    Article  PubMed  Google Scholar 

  78. Carter, B. S., Carter, A. & Bennett, S. Families’ views upon experiencing change in the neonatal intensive care unit environment: from the ‘baby barn’ to the private room. J. Perinatol. 28, 827–829 (2008).

    Article  CAS  PubMed  Google Scholar 

  79. Erdeve, O. et al. The impact of individual room on rehospitalization and health service utilization in preterms after discharge. Acta Paediatr. 97, 1351–1357 (2008).

    Article  CAS  PubMed  Google Scholar 

  80. Ortenstrand, A. et al. The Stockholm Neonatal Family Centered Care Study: effects on length of stay and infant morbidity. Pediatrics 125, e278–e285 (2010).

    Article  PubMed  Google Scholar 

  81. Domanico, R., Davis, D. K., Coleman, F. & Davis, B. O. Jr. Documenting the NICU design dilemma: parent and staff perceptions of open ward versus single family room units. J. Perinatol. 30, 343–351 (2010).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  82. Stevens, D. C., Helseth, C. C., Khan, M. A., Munson, D. P. & Reid, E. J. A comparison of parent satisfaction in an open-bay and single-family room neonatal intensive care unit. Herd 4, 110–123 (2011).

    Article  PubMed  Google Scholar 

  83. Gavey, J. Parental perceptions of neonatal care. J. Neonatal Nurs. 13, 199–206 (2007).

    Article  Google Scholar 

  84. Whittingham, K., Boyd, R. N., Sanders, M. R. & Colditz, P. Parenting and prematurity: understanding parent experience and preferences for support. J. Child Fam. Stud. 23, 1050–1061 (2014).

    Article  Google Scholar 

  85. Brockman, V. Implementing the mother-baby model of nursing care using models and quality improvement tools. Nurs. Womens Health 19, 490–503 (2015).

    Article  PubMed  Google Scholar 

  86. Elliott-Carter, N. & Harper, J. Keeping mothers and newborns together after cesarean: how one hospital made the change. Nurs. Womens Health 16, 290–295 (2012).

    Article  PubMed  Google Scholar 

  87. Flacking, R., Thomson, G., Ekenberg, L., Löwegren, L. & Wallin, L. Influence of NICU co-care facilities and skin-to-skin contact on maternal stress in mothers of preterm infants. Sex. Reprod. Healthc. 4, 107–112 (2013).

    Article  CAS  PubMed  Google Scholar 

  88. Rodgers, M. Two peas in the same pod: transitioning to couplet care. J. Obstet. Gynecol. Neonatal Nurs. 41, S96 (2012).

    Article  Google Scholar 

  89. Clarke, P., Allen, E., Atuona, S. & Cawley, P. Delivery room cuddles for extremely preterm babies and parents: concept, practice, safety, parental feedback. Acta Paediatr. 110, 1439–1449 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  90. Phillips, R. The sacred hour: uninterrupted skin-to-skin contact immediately after birth. Newborn Infant Nurs. Rev. 13, 67–72 (2013).

    Article  Google Scholar 

  91. Craig, A. K., James, C., Bainter, J., Evans, S. & Gerwin, R. Parental perceptions of neonatal therapeutic hypothermia; emotional and healing experiences. J. Matern Fetal Neonatal Med. 33, 2889–2896 (2020).

    Article  PubMed  Google Scholar 

  92. Johnston, M., Landers, S., Noble, L., Szucs, K. & Viehmann, L. Breastfeeding and the use of human milk. Pediatrics 129, e827–e841 (2012).

  93. White, R. D. The next big ideas in NICU design. J. Perinatol. 36, 259–262 (2016).

    Article  CAS  PubMed  Google Scholar 

  94. Mason, L. et al. Interventions for supporting parents of infants requiring neonatal inter-hospital transport: a systematic review. Nurs. Crit. Care 29,1–14(2023).

  95. Mullaney, D. M., Edwards, W. H. & DeGrazia, M. Family-centered care during acute neonatal transport. Adv. Neonatal Care 14, S16–S23 (2014).

  96. Psychogiou, K. et al. Novel use of facetime in supporting maternal-infant bonding. J. Neonatal Nurs. 26, 106–108 (2020).

    Article  Google Scholar 

  97. Sandy, K. et al. Asynchronous video messaging promotes family involvement and mitigates separation in neonatal care. Arch. Dis. Child. Fetal Neonatal Ed. 106, 172 (2021).

    Article  Google Scholar 

  98. McGrath, J. M. Implementation of interventions that support sleep in the NICU. J. Perinat. Neonatal Nurs. 21, 83–85 (2007).

    Article  PubMed  Google Scholar 

  99. Wang, D. et al. Examining the effects of a targeted noise reduction program in a neonatal intensive care unit. Arch. Dis. Child. Fetal Neonatal Ed. 99, F203 (2014).

    Article  CAS  PubMed  Google Scholar 

  100. Santos, J., Pearce, S. E. & Stroustrup, A. Impact of hospital-based environmental exposures on neurodevelopmental outcomes of preterm infants. Curr. Opin. Pediatr. 27, 254–260 (2015).

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  101. Wachman, E. M. & Lahav, A. The effects of noise on preterm infants in the NICU. Arch. Dis. Child. Fetal Neonatal Ed. 96, F305 (2011).

    Article  PubMed  Google Scholar 

  102. Lebel, V., Feeley, N., Robins, S. & Stremler, R. Factors influencing mothers’ quality of sleep during their infants’ NICU hospitalization. Behav. Sleep. Med. 20, 610–621 (2022).

    Article  PubMed  Google Scholar 

  103. Carvalhais, C., Santos, J., da Silva, M. V. & Xavier, A. Is there sufficient training of health care staff on noise reduction in neonatal intensive care units? A pilot study from neonoise project. J. Toxicol. Environ. Health A 78, 897–903 (2015).

    Article  CAS  PubMed  Google Scholar 

  104. Ahamed, M. F., Campbell, D., Horan, S. & Rosen, O. Noise reduction in the neonatal intensive care unit: a quality improvement initiative. Am. J. Med. Qual. 33, 177–184 (2017).

    Article  PubMed  Google Scholar 

  105. Mietzsch, U., Parikh, N. A., Williams, A. L., Shankaran, S. & Lasky, R. E. Effects of hypoxic-ischemic encephalopathy and whole-body hypothermia on neonatal auditory function: a pilot study. Am. J. Perinatol. 25, 435–441 (2008).

    Article  PubMed  PubMed Central  Google Scholar 

  106. Allen, K. A. Music therapy in the NICU: is there evidence to support integration for procedural support? Adv. Neonatal Care 13, 349–352 (2013).

    Article  PubMed  Google Scholar 

  107. Standley, M. J. & Gutierrez, C. Benefits of a comprehensive evidence-based NICU-Mt Program: family- centered, neurodevelopmental music therapy for premature infants. Pediatr. Nurs. 46, 40–46 (2020).

    Google Scholar 

  108. Lai, H.-L. et al. Randomized controlled trial of music during kangaroo care on maternal state anxiety and preterm infants’ responses. Int. J. Nurs. Stud. 43, 139–146 (2006).

    Article  PubMed  Google Scholar 

  109. Loewy, J., Stewart, K., Dassler, A. M., Telsey, A. & Homel, P. The effects of music therapy on vital signs, feeding, and sleep in premature infants. Pediatrics 131, 902–918 (2013).

    Article  PubMed  Google Scholar 

  110. Ballantyne, M. et al. A whole new world: a qualitative investigation of parents’ experiences in transitioning their preterm child with cerebral palsy to developmental/rehabilitation services. Dev. Neurorehabil. 22, 87–97 (2019).

    Article  PubMed  Google Scholar 

  111. Ballantyne, M. et al. Parents’ early healthcare transition experiences with preterm and acutely ill infants: a scoping review. Child Care Health Dev. 43, 783–796 (2017).

    Article  CAS  PubMed  Google Scholar 

  112. Boykova, M. Transition from hospital to home in parents of preterm infants: a literature review. J. Perinat. Neonatal Nurs. 30, 327–348 (2016).

    Article  PubMed  Google Scholar 

  113. Hynan, M. T. et al. Recommendations for mental health professionals in the NICU. J. Perinatol. 35, S14–S18 (2015).

    Article  PubMed  PubMed Central  Google Scholar 

  114. Purdy, I. B., Craig, J. W. & Zeanah, P. Nicu discharge planning and beyond: recommendations for parent psychosocial support. J. Perinatol. 35, S24–S28 (2015).

    Article  PubMed  PubMed Central  Google Scholar 

  115. Bayer, N. D. et al. A national mental health profile of parents of children with medical complexity. Pediatrics 148, e2020023358 (2021).

    Article  PubMed  Google Scholar 

  116. Franck, L. S. et al. Associations between infant and parent characteristics and measures of family well-being in neonates with seizures: a cohort study. J. Pediatr. 221, 64–71.e64 (2020).

    Article  PubMed  PubMed Central  Google Scholar 

  117. Malin, K. J. et al. Infant illness severity and perinatal post-traumatic stress disorder after discharge from the neonatal intensive care unit. Early Hum. Dev. 140, 104930 (2019).

    Article  PubMed  PubMed Central  Google Scholar 

  118. Feeley, N. et al. Posttraumatic stress among mothers of very low birthweight infants at 6 months after discharge from the neonatal intensive care unit. Appl. Nurs. Res. 24, 114–117 (2011).

    Article  PubMed  Google Scholar 

  119. Griffin, T. & Abraham, M. Transition to home from the newborn intensive care unit: applying the principles of family-centered care to the discharge process. J. Perinat. Neonatal Nurs. 20, 243–249 (2006).

    Article  PubMed  Google Scholar 

  120. Vohr, B. et al. Impact of a transition home program on rehospitalization rates of preterm infants. J. Pediatr. 181, 86–92.e81 (2017).

    Article  PubMed  Google Scholar 

  121. Liu, Y. et al. Transition home plus program reduces medicaid spending and health care use for high-risk infants admitted to the neonatal intensive care unit for 5 or more days. J. Pediatr. 200, 91–97.e93 (2018).

    Article  PubMed  Google Scholar 

  122. Lemmon, M. E. et al. Family-centered care for children and families impacted by neonatal seizures: advice from parents. Pediatr. Neurol. 124, 26–32 (2021).

    Article  PubMed  PubMed Central  Google Scholar 

  123. Parker, M. G. et al. Approaches to addressing social determinants of health in the NICU: a mixed methods study. J. Perinatol. 41, 1983–1991 (2021).

    Article  PubMed  Google Scholar 

  124. Bry, A. & Wigert, H. Psychosocial support for parents of extremely preterm infants in neonatal intensive care: a qualitative interview study. BMC Psychol. 7, 76 (2019).

    Article  PubMed  PubMed Central  Google Scholar 

  125. Dahan, S. et al. Community, hope, and resilience: parental perspectives on peer support in neonatology. J. Pediatr. 243, 85–90.e82 (2022).

    Article  PubMed  Google Scholar 

  126. Hall, S. L., Ryan, D. J., Beatty, J. & Grubbs, L. Recommendations for peer-to-peer support for NICU parents. J. Perinatol. 35, S9–S13 (2015).

    Article  PubMed  PubMed Central  Google Scholar 

  127. Noergaard, B., Johannessen, H., Fenger-Gron, J., Kofoed, P. E. & Ammentorp, J. Participatory action research in the field of neonatal intensive care: developing an intervention to meet the fathers’ needs. A case study. J. Public Health Res. 5, 744 (2016).

    Article  PubMed  PubMed Central  Google Scholar 

  128. Thomson-Salo, F., Kuschel, C. A., Kamlin, O. F. & Cuzzilla, R. A fathers’ group in NICU: recognising and responding to paternal stress, utilising peer support. J. Neonatal Nurs. 23, 294–298 (2017).

    Article  Google Scholar 

  129. Treyvaud, K., Spittle, A., Anderson, P. J. & O’Brien, K. A multilayered approach is needed in the NICU to support parents after the preterm birth of their infant. Early Hum. Dev. 139, 104838 (2019).

    Article  PubMed  Google Scholar 

  130. Witt, R. E. et al. Racism and quality of neonatal intensive care: voices of black mothers. Pediatrics 150, e2022056971 (2022).

    Article  PubMed  Google Scholar 

  131. Bonanno, G. A., Westphal, M. & Mancini, A. D. Resilience to loss and potential trauma. Annu. Rev. Clin. Psychol. 7, 511–535 (2011).

    Article  PubMed  Google Scholar 

  132. Fabiyi, C., Rankin, K., Norr, K., Shapiro, N. & White-Traut, R. Anxiety among Black and Latina mothers of premature infants at social-environmental risk. Newborn Infant Nurs. Rev. 12, 132–140 (2012).

    Article  PubMed  PubMed Central  Google Scholar 

  133. Hiscock, H. et al. Preventing early infant sleep and crying problems and postnatal depression: a randomized trial. Pediatrics 133, e346–e354 (2014).

    Article  PubMed  Google Scholar 

  134. Hussain, S. A. et al. Recognition of infantile spasms is often delayed: the assist study. J. Pediatr. 190, 215–221.e211 (2017).

    Article  PubMed  Google Scholar 

  135. Smith, V. C., Love, K. & Goyer, E. Nicu discharge preparation and transition planning: guidelines and recommendations. J. Perinatol. 42, 7–21 (2022).

    Article  PubMed  PubMed Central  Google Scholar 

  136. White, Z., Gilstrap, C. & Hull, J. “Me against the World”: parental uncertainty management at home following neonatal intensive care unit discharge. J. Fam. Commun. 17, 105–116 (2017).

    Article  Google Scholar 

  137. Feehan, K. et al. Development of a multidisciplinary medical home program for NICU graduates. Matern. Child Health J. 24, 11–21 (2020).

    Article  PubMed  Google Scholar 

  138. Goyal, N. K., Teeters, A. & Ammerman, R. T. Home visiting and outcomes of preterm infants: a systematic review. Pediatrics 132, 502–516 (2013).

    Article  PubMed  PubMed Central  Google Scholar 

  139. McManus, B. M., Carle, A. C. & Poehlmann, J. Effectiveness of part C early intervention physical, occupational, and speech therapy services for preterm or low birth weight infants in Wisconsin, United States. Acad. Pediatr. 12, 96–103 (2012).

    Article  PubMed  PubMed Central  Google Scholar 

  140. Spittle, A., Orton, J., Anderson, P. J., Boyd, R. & Doyle, L. W. Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. Cochrane Database Syst. Rev. 2015, Cd005495 (2015).

    PubMed  PubMed Central  Google Scholar 

  141. Maitre, N. L. et al. Network Implementation of guideline for early detection decreases age at cerebral palsy diagnosis. Pediatrics 145, e20192126 (2020).

    Article  PubMed  Google Scholar 

  142. Kuppala, V. S., Tabangin, M., Haberman, B., Steichen, J. & Yolton, K. Current State of high-risk infant follow-up care in the United States: results of a national survey of academic follow-up programs. J. Perinatol. 32, 293–298 (2012).

    Article  CAS  PubMed  Google Scholar 

  143. Hintz, S. R. et al. Factors associated with successful first high-risk infant clinic visit for very low birth weight infants in California. J. Pediatr. 210, 91–98.e91 (2019).

    Article  PubMed  Google Scholar 

  144. Finder, M. et al. Two-year neurodevelopmental outcomes after mild hypoxic ischemic encephalopathy in the era of therapeutic hypothermia. JAMA Pediatr. 174, 48–55 (2020).

    Article  PubMed  Google Scholar 

  145. Hintz, S. R. et al. Referral of very low birth weight infants to high-risk follow-up at neonatal intensive care unit discharge varies widely across California. J. Pediatr. 166, 289–295 (2015).

    Article  PubMed  Google Scholar 

  146. Swearingen, C., Simpson, P., Cabacungan, E. & Cohen, S. Social disparities negatively impact neonatal follow-up clinic attendance of premature infants discharged from the neonatal intensive care unit. J. Perinatol. 40, 790–797 (2020).

    Article  PubMed  PubMed Central  Google Scholar 

  147. Lee, W. C., Veeranki, S. P., Serag, H., Eschbach, K. & Smith, K. D. Improving the collection of race, ethnicity, and language data to reduce healthcare disparities: a case study from an academic medical center. Perspect. Health Inf. Manag. 13, 1g (2016).

    PubMed  PubMed Central  Google Scholar 

  148. De Jesus-Rojas, W. et al. The effect of comprehensive medical care on the long-term outcomes of children discharged from the NICU with tracheostomy. Open Respir. Med J. 12, 39–49 (2018).

    Article  PubMed  PubMed Central  Google Scholar 

  149. Greene, M. & Patra, K. Part C early intervention utilization in preterm infants: opportunity for referral from a nicu follow-up clinic. Res. Dev. Disabil. 53-54, 287–295 (2016).

    Article  PubMed  Google Scholar 

  150. Van Cleave, J. et al. Care coordination over time in medical homes for children with special health care needs. Pediatrics 135, 1018–1026 (2015).

    Article  PubMed  Google Scholar 

  151. Neu, M. & Robinson, J. Maternal Holding of preterm infants during the early weeks after birth and dyad interaction at six months. J. Obstet. Gynecol. Neonatal Nurs. 39, 401–414 (2010).

    Article  PubMed  PubMed Central  Google Scholar 

  152. Parker, C., Warmuskerken, G. & Sinclair, L. Enhancing neonatal wellness with home visitation. Nurs. Womens Health 19, 36–45 (2015).

    Article  PubMed  Google Scholar 

  153. Paul, I. M. et al. A randomized trial of single home nursing visits vs office-based care after nursery/maternity discharge: the nurses for infants through teaching and assessment after the nursery (Nittany) Study. Arch. Pediatr. Adolesc. Med. 166, 263–270 (2012).

    Article  PubMed  Google Scholar 

  154. Teti, D. M. et al. Intervention with African American premature infants: four-month results of an early intervention program. J. Early Interv. 31, 146–166 (2009).

    Article  Google Scholar 

  155. Dodge, K. A., Goodman, W. B., Murphy, R. A., O’Donnell, K. & Sato, J. Randomized controlled trial of universal postnatal nurse home visiting: impact on emergency care. Pediatrics 132, S140–S146 (2013).

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgements

This manuscript was reviewed and endorsed by the Newborn Brain Society Guidelines and Publications Committee.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA

    Simran Bansal, Margarita Bidegain, Monica E. Lemmon & Monica Lemmon

  2. Paediatric Research Laboratory, Trinity Translational Medicine Institute (TTMI), St. James’ Hospital, Dublin, Ireland

    Eleanor J. Molloy & Tim Hurley

  3. Discipline of Paediatrics, Dublin Trinity College, The University of Dublin, Dublin, Ireland

    Eleanor J. Molloy & Tim Hurley

  4. Trinity Research in Childhood Centre (TriCC), Children’s Health Ireland & Coombe Hospital, Dublin, Ireland

    Eleanor J. Molloy

  5. Department of Pediatrics, University of California San Francisco, San Francisco, CA, USA

    Elizabeth Rogers

  6. Hope for HIE, West Bloomfield, MI, USA

    Betsy Pilon

  7. Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA

    Monica E. Lemmon & Monica Lemmon

  8. Department of Pediatrics (Neonatology), Lucile Packard Children’s Hospital and Stanford University, Palo Alto, CA, USA

    Sonia Bonifacio

  9. Department of Pediatrics, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada

    Pia Wintermark

  10. Division of Neonatology, Cleveland Clinic Children’s Hospital, Cleveland, OH, USA

    Hany Aly

  11. Centre for Reproductive Health, Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK

    James Boardman

  12. Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK

    James Boardman

  13. University of Wisconsin School of Medicine and Public Health, Madison, WI, USA

    Melisa Carrasco McCaul

  14. Department of Pediatrics (Neurology), The Hospital for Sick Children, SickKids Research Institute (Neuroscience and Mental Health) and University of Toronto, Toronto, ON, Canada

    Vann Chau & Gabrielle deVeber

  15. Departments of Neurology & Pediatrics, UCSF School of Medicine, University of California, San Francisco, San Francisco, CA, USA

    Dawn Gano & Hannah Glass

  16. Department of Pediatrics (Neurology and Epilepsy), Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Andrea Pardo

  17. Department of Pediatrics, Children’s Nebraska, Omaha, NE, USA

    Eric Peeples

  18. Department of Neurology, Stanford University, Palo Alto, CA, USA

    Courtney Wusthoff

  19. Department of Pediatrics, Section of Neonatology Cumming School of Medicine, University of Calgary, Calgary, AB, Canada

    Lara Leijser

  20. Department of Paediatrics and Child Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa

    Firdose Nakwa

  21. Department of Pediatrics, BC Children’s Hospital Research Institute and University of British Columbia, Vancouver, BC, Canada

    Thiviya Selvanathan

Authors
  1. Simran Bansal
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Eleanor J. Molloy
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Elizabeth Rogers
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Margarita Bidegain
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Betsy Pilon
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Tim Hurley
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Monica E. Lemmon
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

on behalf of the Newborn Brain Society Guidelines and Publications Committee

  • Sonia Bonifacio
  • , Pia Wintermark
  • , Hany Aly
  • , James Boardman
  • , Melisa Carrasco McCaul
  • , Vann Chau
  • , Gabrielle deVeber
  • , Dawn Gano
  • , Hannah Glass
  • , Monica Lemmon
  • , Andrea Pardo
  • , Eric Peeples
  • , Courtney Wusthoff
  • , Lara Leijser
  • , Firdose Nakwa
  •  & Thiviya Selvanathan

Contributions

All authors were involved in drafting, writing, and critically revising the article. Each author has approved the final version for publication.

Corresponding author

Correspondence to Monica E. Lemmon.

Ethics declarations

Competing interests

E.J.M. serves as the Associate Editor-in-Chief of Pediatric Research. M.E.L. receives salary support from the National Institutes of Health. No other authors have any conflicts of interest to disclose.

Additional information

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

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Bansal, S., Molloy, E.J., Rogers, E. et al. Families as partners in neonatal neuro-critical care programs. Pediatr Res (2024). https://doi.org/10.1038/s41390-024-03257-6

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1038/s41390-024-03257-6

Search

Advanced search

Quick links