The Advances in Neonatal Care (ANC) Editorial Board announces that the journal section Ethical Issues in Neonatal Care is now titled Ethics and Equity in Neonatal Care. In recent years, ANC editorials and an invited paper have addressed health disparities secondary to racism and inequities that have been reported in neonatal intensive care units (NICUs) across the United States and have advocated for change. This work includes “Speaking Up to Address Racism and Health Inequity” (February 2021),1 “Disparities Research in the Neonatal Arena” (August 2021),2 “A Call to Action to Fight for Equity and End Necrotizing Enterocolitis Disparities” (October 2021),3 “Inclusivity and Respect: Beyond Personal Pronouns” (April 2022),4 and “Becoming an Antiracist Neonatal Community” (February 2021)5 to highlight a few. Furthermore, the National Association of Neonatal Nurses (NANN) published position statement #3700, “Racial Disparity in the NICU,” that endorsed “healthcare equality for all infants regardless of race, parental economic or educational status, or geographic area” and highlighted several recommendations for elevating awareness around these issues, encouraging diversity in the workforce, examining our own personal biases and beliefs, and working with diverse families in the NICU and through their transition to home (June 2020).6 Social determinants of health have a major impact on people's health, well-being, and quality of life and contribute to wide health disparities and inequities related to healthcare access, quality of healthcare services and experiences, and health outcomes. The renaming of the section is a natural extension of this previous work and a continued response to the calls for heightened awareness around these important issues.
In the United States, approximately half a million infants are admitted annually to an NICU. Despite medical advances, infants born to Black, Hispanic, and rural7,8 mothers experience worse health outcomes and higher rates of prematurity and mortality than those born to White, urban mothers.9 Such outcomes are linked to disparities in healthcare10–17 and lower satisfaction with care.18 Disparities specific to the NICU are well documented, with minority infants less likely to receive recommended care.10,19,20 For those infants at high risk for neurodevelopmental disabilities and ongoing need for specialized services, the impact of these disparities is magnified even further.19
Family advocates also voice a lack of equitable, family-centered care, which is based on a respectful partnership between healthcare providers (HCPs) and families.21,22 However, negative interactions with HCPs may be precipitated by stereotyping, bias, and failures in communication for minority families.20,21,23,24 Barriers may result that then limit family involvement in activities, such as breastfeeding and skin-to-skin care,25 which are central to infant care.
Furthermore, a systematic review of the literature identified racial/ethnic disparities in neonatal intensive care in all levels of structure, process, and outcome measures and recommended that targeted efforts could improve equity in care delivery.12
In healthcare, ethics and ethical conduct are recognized as important tenets of practice that set standards of right and wrong that can guide clinical decision-making, as well as allocation of valuable resources. Equity relates to fairness and is grounded in the ethical principle of justice.26 It also recognizes that not all patients and families start from the same place. This fact must be acknowledged so that these imbalances can be not only mitigated but also ultimately ameliorated. Disparity must also be considered in the context of not only those who are racial minorities but also for those considered to be minorities in terms of their gender, sexuality, and religion.5 Inequities in healthcare are an injustice and thus an ethical issue.
Furthermore, the NANN Code of Ethics27 describes that ethical behavior is integral to the foundation of nursing and outlines fundamental nursing principles not only for patient care but also for participation in the Association. It also adopts a “responsibility for articulating neonatal nursing values, the integrity of the profession and its practice and for shaping social policy” from Provision 9 of the American Nurses Association Code of Ethics for Nurses.28 As a nursing profession, we must aim to provide safe, efficient, and quality nursing services across the entire population in all health settings.29
The body of evidence around disparities and health inequities in the NICU is growing; however, this is a topic that needs continued attention in clinical practice and research. Together with the ANC editors, I invite you to submit your original manuscripts for consideration for publication in the Ethics and Equity in Neonatal Care section so that others may learn through your work. We welcome any manuscript that discusses health inequities in the NICU through an ethical lens. Manuscripts may be original research, systematic or narrative reviews of the literature, quality improvement or evidence-based practice projects, or other type of project.
Together we have an opportunity to make a difference through the sharing of our research, clinical practice, policy, and education initiatives. We hope that the new focus of this section will continue to increase attention and heighten awareness around racism, discrimination, prejudice, bias, and inequity so that ultimately care for all infants and their families can be improved. I hope you will consider submitting your work. If you have any questions regarding a potential submission, please contact me at [email protected] to discuss.
—Christine A. Fortney, PhD, RN
Section Editor; Ethics and Equity in Neonatal Care
1. Brandon D, McGrath JM. Speaking up to address racism and health inequity. Adv Neonatal Care. 2021;21(1):1–2. doi:10.1097/ANC.0000000000000831.
2. Cartagena DC, McGrath JM, Brandon D. Disparities research in the neonatal arena. Adv Neonatal Care. 2021;21(4):247–248. doi:10.1097/ANC.0000000000000926.
3. Gephart SM, Quinn M. A call to action to fight for equity and end necrotizing enterocolitis disparities. Adv Neonatal Care. 2021;21(5):333–335. doi:10.1097/ANC.0000000000000940.
4. Kyle BL, Dowling DA. Inclusivity and respect: beyond personal pronouns. Adv Neonatal Care. 2022;22(2):95–96. doi:10.1097/ANC.0000000000001001.
5. Vance AJ, Bell T. Becoming an antiracist neonatal community. Adv Neonatal Care. 2021;21(1):9–15. doi:10.1097/ANC.0000000000000829.
7. Long JC, Delamater PL, Holmes GM. Which definition of rurality should I use? Med Care. 2021;59(10)(suppl 5):S413–S419. doi:10.1097/MLR.0000000000001612.
8. Gessert C, Waring S, Bailey-Davis L, Conway P, Roberts M, VanWormer J. Rural definition of health: a systematic literature review. BMC Public Health. 2015;15:378. doi:10.1186/s12889-015-1658-9.
9. Testa A, Jackson DB. Race, ethnicity, WIC participation, and infant health disparities in the United States. Ann Epidemiol. 2021;58:22–28. doi:10.1016/j.annepidem.2021.02.005.
10. Profit J, Gould JB, Bennett M, et al. Racial/ethnic disparity in NICU quality of care delivery. Pediatrics. 2017;140(3):e20170918. doi:10.1542/peds.2017-0918.
11. Townsel C, Keller R, Kuo CL, Campbell WA, Hussain N. Racial/ethnic disparities in morbidity and mortality for preterm neonates admitted to a tertiary neonatal intensive care unit. J Racial Ethn Health Disparities. 2018;5(4):867–874. doi:10.1007/s40615-017-0433-2.
12. Sigurdson K, Mitchell B, Liu J, et al. Racial/ethnic disparities in neonatal intensive care: a systematic review. Pediatrics. 2019;144(2):e20183114. doi:10.1542/peds.2018-3114.
13. Magnusson DM, Mistry KB. Racial and ethnic disparities in unmet need for pediatric therapy services: the role of family-centered care. Acad Pediatr. 2017;17(1):27–33. doi:10.1016/j.acap.2016.06.010.
14. Martin AE, D'Agostino JA, Passarella M, Lorch SA. Racial differences in parental satisfaction with neonatal intensive care unit nursing care. J Perinatol. 2016;36(11):1001–1007. doi:10.1038/jp.2016.142.
15. Jammeh ML, Adibe OO, Tracy ET, et al. Racial/ethnic differences in necrotizing enterocolitis incidence and outcomes in premature very low birth weight infants. J Perinatol. 2018;38(10):1386–1390. doi:10.1038/s41372-018-0184-x.
16. Benavidez OJ, Gauvreau K, Jenkins KJ. Racial and ethnic disparities in mortality following congenital heart surgery. Pediatr Cardiol. 2006;27(3):321–328. doi:10.1007/s00246-005-7121-4.
17. Thienprayoon R, Marks E, Funes M, Martinez-Puente LM, Winick N, Lee SC. Perceptions of the pediatric hospice experience among English- and Spanish-speaking families. J Palliat Med. 2016;19(1):30–41. doi:10.1089/jpm.2015.0137.
18. Knapp C, Sberna-Hinojosa M, Baron-Lee J, Curtis C, Huang IC. Does decisional conflict differ across race and ethnicity groups? A study of parents whose children have a life-threatening illness. J Palliat Med. 2014;17(5):559–567. doi:10.1089/jpm.2013.0604.
19. Horbar JD, Edwards EM, Greenberg LT, et al. Racial segregation and inequality in the neonatal intensive care unit for very low-birth-weight and very preterm infants. JAMA Pediatr. 2019;173(5):455–461. doi:10.1001/jamapediatrics.2019.0241.
20. Beck AF, Edwards EM, Horbar JD, Howell EA, McCormick MC, Pursley DM. The color of health: how racism, segregation, and inequality affect the health and well-being of preterm infants and their families. Pediatr Res. 2020;87(2):227–234. doi:10.1038/s41390-019-0513-6.
21. Sigurdson K, Morton C, Mitchell B, Profit J. Disparities in NICU quality of care: a qualitative study of family and clinician accounts. J Perinatol. 2018;38(5):600–607. doi:10.1038/s41372-018-0057-3.
22. Glazer KB, Sofaer S, Balbierz A, Wang E, Howell EA. Perinatal care experiences among racially and ethnically diverse mothers whose infants required a NICU stay. J Perinatol. 2021;41(3):413–421. doi:10.1038/s41372-020-0721-2.
23. Tucker Edmonds B, Hoffman SM, Laitano T, Jeffries E, Jager S, Kavanaugh K. Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making. J Perinatol. 2021;41(3):396–403. doi:10.1038/s41372-020-0739-5.
24. Sigurdson K, Profit J, Dhurjati R, et al. Former NICU families describe gaps in family-centered care. Qual Health Res. 2020;30(12):1861–1875. doi:10.1177/1049732320932897.
25. Ravi D, Iacob A, Profit J. Unequal care: racial/ethnic disparities in neonatal intensive care delivery. Semin Perinatol. 2021;45(4):151411. doi:10.1016/j.semperi.2021.151411.
26. Bradley SH. The ethics and politics of addressing health inequalities. Clin Med (Lond). 2021;21(2):147–149.
28. American Nurses Association. ANA Code of Ethics for Nurses. https://www.nursingworld.org/practice-policy/nursing-excellence/ethics/
. Published 2023. Accessed January 23, 2023.
29. Rooddehghan Z, ParsaYekta Z, Nasrabadi AN. Equity in nursing care: a grounded theory study. Nurs Ethics. 2019;26(2):598–610. doi:10.1177/0969733017712079.