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.

  • Original Article
  • Published:

Neonatal intensive care unit to home: the transition from parent and pediatrician perspectives, a prospective cohort study

Journal of Perinatology volume 34, pages 761–766 (2014)Cite this article

Subjects

Abstract

Objectives:

To describe the experience of a low-income population during the transition from the neonatal intensive care unit (NICU) to home and to compare these experiences with pediatrician perspectives.

Study Design:

A prospective cohort study in a Level III, 40-bed NICU at a county hospital in Northern California affiliated with seven outpatient pediatric clinics. We surveyed parents in English or Spanish at discharge (n=79) and two weeks after discharge (n=49), along with outpatient pediatricians (n=17). Parents assessed experiences with discharge and the frequency with which barriers were encountered after discharge. We compared parent experiences with pediatrician estimates on four of these barriers.

Result:

Spanish survey participants had more difficulty finding a NICU doctor (P=0.05) or nurse (P=0.001) to answer their questions. After discharge, 16% of families experienced significant challenges with two or more barriers. In contrast, the majority of pediatricians estimated that 50% or more families had significant challenges with all four barriers.

Conclusion:

Communication difficulties were the most commonly reported barriers during the NICU stay and physicians overestimated the frequency that families experienced challenges after discharge. Parent input is important to create effective interventions aimed at improving care and limiting disparities.

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

Figure 1

Similar content being viewed by others

References

  1. Hamilton B, Martin JA, Ventura SJ . Births: preliminary data for 2010; last accessed 17 November, 2011.

  2. Mathews TJ, MacDorman MF . Infant mortality statistics from the 2007 period linked birth/infant death data set. Natl Vital Stat Rep 2011; 59 (6): 1–30.

    CAS  PubMed  Google Scholar 

  3. Allen MC . Neurodevelopmental outcomes of preterm infants. Curr Opin Neurol 2008; 21 (2): 123–128.

    Article  Google Scholar 

  4. Cavalier S, Escobar GJ, Fernbach SA, Quesenberry CP Jr., Chellino M . Postdischarge utilization of medical services by high-risk infants: experience in a large managed care organization. Pediatrics 1996; 97 (5): 693–699.

    CAS  PubMed  Google Scholar 

  5. Escobar GJ, Joffe S, Gardner MN, Armstrong MA, Folck BF, Carpenter DM . Rehospitalization in the first two weeks after discharge from the neonatal intensive care unit. Pediatrics 1999; 104 (1): e2.

    Article  CAS  Google Scholar 

  6. Wade KC, Lorch SA, Bakewell-Sachs S, Medoff-Cooper B, Silber JH, Escobar GJ . Pediatric care for preterm infants after NICU discharge: high number of office visits and prescription medications. J Perinatol 2008; 28 (10): 696–701.

    Article  CAS  Google Scholar 

  7. Brooks-Gunn J, McCormick MC, Klebanov PK, McCarton C . Health care use of 3-year-old low birth weight premature children: effects of family and neighborhood poverty. J Pediatr 1998; 132 (6): 971–975.

    Article  CAS  Google Scholar 

  8. Lorch SA, Wade KC, Bakewell-Sachs S, Medoff-Cooper B, Escobar GJ, Silber JH . Racial differences in the use of respiratory medications in premature infants after discharge from the neonatal intensive care unit. J Pediatr 2007; 151 (6): 604–610, 610.e1.

    Article  Google Scholar 

  9. Morris BH, Gard CC, Kennedy K . Rehospitalization of extremely low birth weight (ELBW) infants: are there racial/ethnic disparities? J Perinatol 2005; 25 (10): 656–663.

    Article  Google Scholar 

  10. Wang C, Guttmann A, To T, Dick PT . Neighborhood income and health outcomes in infants: how do those with complex chronic conditions fare? Arch Pediatr Adolesc Med 2009; 163 (7): 608–615.

    Article  Google Scholar 

  11. Lamarche-Vadel A, Blondel B, Truffer P, Burguet A, Cambonie G, Selton D et al. Re-hospitalization in infants younger than 29 weeks' gestation in the EPIPAGE cohort. Acta Paediatr 2004; 93 (10): 1340–1345.

    Article  CAS  Google Scholar 

  12. Collaco JM, Choi SJ, Riekert KA, Eakin MN, McGrath-Morrow SA, Okelo SO . Socio-economic factors and outcomes in chronic lung disease of prematurity. Pediatr Pulmonol 2011; 46 (7): 709–716.

    Article  Google Scholar 

  13. Medical home initiatives for children with special needs project advisory committee. American Academy of Pediatrics. The medical home. Pediatrics 2002; 110 (1 Pt 1): 184–186.

    Google Scholar 

  14. Raphael JL, Guadagnolo BA, Beal AC, Giardino AP . Racial and ethnic disparities in indicators of a primary care medical home for children. Acad Pediatr 2009; 9 (4): 221–227.

    Article  Google Scholar 

  15. Strickland B, McPherson M, Weissman G, van Dyck P, Huang ZJ, Newacheck P . Access to the medical home: results of the National Survey of Children with Special Health Care Needs. Pediatrics 2004; 113 (5 Suppl): 1485–1492.

    PubMed  Google Scholar 

  16. Blumberg SJ, Read D, Avila RM, Bethell CD . Hispanic children with special health care needs from Spanish-language households. Pediatrics 2010; 126 (Suppl 3): S120–S128.

    Article  Google Scholar 

  17. Child Population, by Race/Ethnicity: 2010. 2012 (cited 2013 June 24) available from http://www.kidsdata.org/data/topic/pie/child-population-race.aspx?fmt=144&loc=59.

  18. IBM Corp . SPSS Statistics for Windows.. 20th edn. IBM Corp: Armonk, NY, 2011.

    Google Scholar 

  19. Satariano HJ, Briggs NJ, O'Neal C . Discharged from neonatal intensive care: how satisfied are parents?. Pediatr Nurs 1987; 13 (5): 352–353, 357.

    CAS  PubMed  Google Scholar 

  20. Miquel-Verges F, Donohue PK, Boss RD . Discharge of infants from NICU to Latino families with limited English proficiency. J Immigr Minor Health 2010; 13 (2): 309–314.

    Article  Google Scholar 

  21. DeCamp LR, Choi H, Davis MM . Medical home disparities for Latino children by parental language of interview. J Health Care Poor Underserved 2011; 22 (4): 1151–1166.

    Article  Google Scholar 

  22. Weiss S, Goldlust E, Vaucher YE . Improving parent satisfaction: an intervention to increase neonatal parent-provider communication. J Perinatol 2010; 30 (6): 425–430.

    Article  CAS  Google Scholar 

  23. Flores G, Abreu M, Olivar MA, Kastner B . Access barriers to health care for Latino children. Arch Pediatr Adolesc Med 1998; 152 (11): 1119–1125.

    Article  CAS  Google Scholar 

  24. Sheikh L, O'Brien M, McCluskey-Fawcett K . Parent preparation for the NICU-to-home transition: staff and parent perceptions. Child Health Care 1993; 22 (3): 227–239.

    Article  CAS  Google Scholar 

  25. Drake E . Discharge teaching needs of parents in the NICU. Neonatal Netw 1995; 14 (1): 49–53.

    CAS  PubMed  Google Scholar 

  26. Smith VC, Young S, Pursley DM, McCormick MC, Zupancic JA . Are families prepared for discharge from the NICU? J Perinatol 2009; 29 (9): 623–629.

    Article  CAS  Google Scholar 

  27. Cook WK . Integrating research and action: a systematic review of community-based participatory research to address health disparities in environmental and occupational health in the USA. J Epidemiol Community Health 2008; 62 (8): 668–676.

    Article  CAS  Google Scholar 

  28. Lopez R . ¿Por qué? Questions of validity in Hispanic survey research. Alert! Magazine. 2008 edn. Marketing Research Associations; 2008. Available at: http://www.mra-net.org/alert/archives/07-08.pdf. Accessed 8 January 2012.

  29. Hopwood CJ, Flato CG, Ambwani S, Garland BH, Morey LC . A comparison of Latino and Anglo socially desirable responding. J Clin Psychol 2009; 65 (7): 769–780.

    Article  Google Scholar 

  30. Yin HS, Johnson M, Mendelsohn AL, Abrams MA, Sanders LM, Dreyer BP . The health literacy of parents in the United States: a nationally representative study. Pediatrics 2009; 124 (Suppl 3): S289–S298.

    Article  Google Scholar 

  31. Yin HS, Sanders LM, Rothman RL, Mendelsohn AL, Dreyer BP, White RO et al. Assessment of health literacy and numeracy among Spanish-Speaking parents of young children: validation of the Spanish Parental Health Literacy Activities Test (PHLAT Spanish). Acad Pediatr 2012; 12 (1): 68–74.

    Article  Google Scholar 

  32. Zambrana RE, Carter-Pokras O . Health data issues for Hispanics: implications for public health research. J Health Care Poor Underserved 2001; 12 (1): 20–34.

    Article  CAS  Google Scholar 

  33. Goodrich K, Conway PH . Affordable care act implementation: Implications for hospital medicine. J Hosp Med 2013; 8 (3): 159–161.

    Article  Google Scholar 

Download references

Acknowledgements

The Community Access to Child Health (CATCH) Resident Grant program and the Lucile Packard Children’s Hospital Community Foundation provided grants to support the design and conduction of the study as well as collection, management, analysis and interpretation of the data.

Author information

Authors and Affiliations

  1. Division of Neonatology, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    E Enlow & S A Lorch

  2. Department of Pediatrics, Pediatric Residency Program, Lucile Packard Children's Hospital, Palo Alto, CA, USA

    E Enlow

  3. Division of General Pediatrics, Stanford School of Medicine, Palo Alto, CA, USA

    S L Herbert & L J Chamberlain

  4. Stanford University, Stanford, CA, USA

    I J Jovel

  5. Division of Neonatology, Santa Clara Valley Medical Center, San Jose, CA, USA

    C Anderson

Authors
  1. E Enlow
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. S L Herbert
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. I J Jovel
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. S A Lorch
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. C Anderson
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. L J Chamberlain
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to E Enlow.

Ethics declarations

Competing interests

The authors declare no conflicts of interest.

Additional information

Supplementary Information accompanies the paper on the Journal of Perinatology website

Supplementary information

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Enlow, E., Herbert, S., Jovel, I. et al. Neonatal intensive care unit to home: the transition from parent and pediatrician perspectives, a prospective cohort study. J Perinatol 34, 761–766 (2014). https://doi.org/10.1038/jp.2014.75

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/jp.2014.75

This article is cited by

Search

Advanced search

Quick links