Volume 29, Issue 4 (Fall 2021)                   Avicenna J Nurs Midwifery Care 2021, 29(4): 302-313 | Back to browse issues page

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Sadeghi N, Hesami S A, Sadeghi M, Sadeghi S. Nurses' Experiences of Palliative Care in the Neonatal Intensive Care Unit: A Qualitative Study. Avicenna J Nurs Midwifery Care 2021; 29 (4) :302-313
URL: http://nmj.umsha.ac.ir/article-1-2328-en.html
1- Associated Professor, Community Health Research Center, Isfahan (Khorasgan) Branch, Islamic Azad University, Isfahan, Iran , n45sadeghi@yahoo.com
2- Medical Student, Community Health Research Center, Isfahan (Khorasgan) Branch, Isfahan, Islamic Azad University, Iran
3- MSc Nurse, Community Health Research Center, Isfahan (Khorasgan) Branch, Islamic Azad University, Isfahan, Iran
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✅ The results of this research are in line with the WHO definition of palliative care in pediatric, which refers to the active total care of the child's body, mind and spirit, and family support. The results of this research are used to improve the care of infants and families at the end of life and death for officials and nurses of NICU.

Extended Abstract:   (1307 Views)

P alliative care for newborns and their families is urgent. Nurses' experiences need to be considered in order to implement palliative care. Therefore, the present study was conducted to explain the Nurses' Experiences of Palliative Care in the NICU.


Materials and Methods

This study was conducted by qualitative content analysis in the neonatal intensive care units of Isfahan, Iran, in 2020. Inclusion criteria for nurses were the consent to participate in the study and experience of caring for the newborn and their family at the end of life. For data collection by the purposeful sampling method, in-depth semi-structured interviews were conducted with 12 nurses. Interviews were recorded, typed, and analyzed. Goba and Lincoln criteria were used to ensure the rigor of the data.



The first theme was palliative care for the newborn. This theme consists of two categories: "compassionate end-of-life care" and " spiritual end-of-life care". The second theme was palliative care of the family. This theme consists of two categories: "Palliative care of the family before the death of the newborn" and "Palliative care of the family after the death of the newborn ".


Research has shown that the main values ​​of palliative care for infants include compassion, dignity, respect, cooperation with the family, interventions to support the infant's health, such as prescribing analgesics and managing symptoms, and psychosocial support to parents [2]. Different studies have shown that pediatricians are less involved in end-of-life care than nurses. Nurses spend a lot of time by the crib to provide care for the baby and interact with the parents compared to the other members of the team [25]. In other studies, physicians reported greater confidence and convenience in providing palliative care to infants than nurses. The role of nurses in the palliative care process is primarily to provide parental support and education, support for the child and family, and build prenatal memory. The nurses stated that they are less involved in decision-making, while they notice the baby's suffering before the doctor and the family [2]. One study found that only 56% of nurses received end-of-life care training, and 77 percent said their training was insufficient. In another study, 66.9% of neonatal physicians received no formal training in end-of-life care, while 96.7% stated that it should be part of their training program [2].
Therefore, as in line with the present study, the results of various studies showed that to provide palliative care for infants, nurses need to receive the necessary training in palliative care, end-of-life care, and pain relief to be accompanied by sufficient skill and conscientiousness work care. Various studies have reported the implementation of palliative care in neonatal intensive care units; however, participants believed that palliative care was not performed well in the present study.
In the present study, one of the main classes of palliative care for infants was end-of-life spiritual care. The nurses believed that at the time of the infant's death, the infant should be treated appropriately and given spiritual-religious care.
In one study, physicians stated that palliative care provides emotional and spiritual support and helps families adjust to complex situations [26]. Palliative care is a complex model that requires attention to individuals and includes spirituality. Nurses must play an active role in meeting patients' spiritual needs because it is directly related to improving patients' quality of life and satisfaction with care. Studies have shown that spiritual care is often not well received by nurses. Because they believe that spirituality is a personal matter, they feel that they do not have enough time to provide spiritual care and that it is difficult to assess the spiritual needs of patients when they have different perspectives. In addition to the above, the lack of spiritual care training is also a preventive factor in providing spiritual care [13].
According to the present study results and the emphasis that nurses had on caring with compassion and spiritual care for the end of life of the infant and family and by reviewing related texts in this field, the importance of palliative care in the neonatal ward is determined. In line with the above studies, the participants in the present study also believed that they did not have enough time to provide spiritual-religious care and did not receive the necessary training in this field.
In the present study, the nurses stated that palliative care should be taken care of the family before the baby dies, and the reality of the baby's condition should not be hidden from the parents and bad news should be given to the family by the trained person.
Good communication with parents and family is the core of quality palliative care. Developing a good partnership requires understanding the differences in families. Parents and most families (grandparents, siblings) need to be involved in infant care discussions from the outset. In giving information, one should pay attention to the differences between families and provide a secluded environment [3].
According to the results of the present study and the emphasis that studies have placed on the importance of considering the family in the neonatal intensive care unit, information related to the infant's condition should be provided to families according to their understanding and bad news or truth should be reported through scientific methods and be delivered to families. Therefore, the results of the present study are in line with the studies, and giving importance to the family in the neonatal intensive care unit, like all the above studies, is of particular significance.
In the present study, nurses stated that the family suffers from spiritual distress after the infant's death and needs empathy. Given that it is essential to consider the family, it is necessary to consider palliative care of the family after a baby's death.



The results of this research are in line with the WHO definition of palliative care in pediatric, which refers to the active total care of the child's body, mind and spirit, and family support. The results of this research are used to improve the care of infants and families at the end of life and death for officials and nurses of the NICU.


The present study is approved research in Islamic Azad University, Isfahan Branch (Khorasgan). All costs of the above research have been paid by the Islamic Azad University of Isfahan (Khorasgan). The researchers would like to thank all the Islamic Azad University executive staff, Isfahan Branch (Khorasgan), and the authorities of all the mentioned centers, and the participants who participated in this research.

Conflicts of Interest

The authors declared no conflict of interest.


Type of Study: Original Research | Subject: Midwifery
Received: 2021/04/28 | Accepted: 2021/09/4 | Published: 2021/12/21

1. Azzizadeh Forouzi M, Banazadeh M, Ahmadi JS, Razban F. Barriers of palliative care in neonatal intensive care units: attitude of neonatal nurses in southeast Iran. Am J Hosp Palliat Med. 2017;34(3):205-11. [DOI:10.1177/1049909115616597] [PMID]
2. Beltran SJ, Hamel MN. Caring for dying infants: a systematic review of healthcare providers’ perspectives of neonatal palliative care. American Journal of Hospice and Palliative Medicine®. 2021 Aug;38(8):1013-27. [DOI:10.1177/1049909120965949] [PMID]
3. Jackson C, Vasudevan C. Palliative care in the neonatal intensive care unit. Paediatr Child Health. 2020;30(4):124-8. [DOI:10.1016/j.paed.2020.01.002]
4. Farhat A, Chitgar Rahimi F, Mohammadzade A, Saeedi R, Ghiassi M, Omidbigi J, et al. The Neonatal Outcomes and resuscitation rate of Neonates at Imam Reza Hospital, Mashhad, Iran. J Midwifery Reprod Health. 2020;8(2):2162-7.
5. Moura H, Costa V, Rodrigues M, Almeida F, Maia T, Guimarães H. End of life in the neonatal intensive care unit. Clin. 2011;66(9):1569-72. [DOI:10.1590/S1807-59322011000900011] [PMID] [PMCID]
6. Rosenbaum JL, Smith JR, Zollfrank R. Neonatal end-of-life spiritual support care. J perinat Neonatal Nurs. 2011;25(1):61-9. [DOI:10.1097/JPN.0b013e318209e1d2] [PMID]
7. Hockenberry MJ, Wilson D. Wong's nursing care of infants and children-E-book: Elsevier Health Sci. 2018.
8. Kenner C, Press J, Ryan D. Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach. J Perinatol. 2015;35 Suppl 1:S19-23. [DOI:10.1038/jp.2015.145] [PMID] [PMCID]
9. Banazadeh M, Rafii F. A Concept Analysis of Neonatal Palliative Care in Nursing: Introducing a Dimensional Analysis. Compr Child Adolesc Nurs. 2020:1-26. [DOI:10.1080/24694193.2020.1783029] [PMID]
10. Quinn M, Weiss AB, Crist JD. Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit. Adv Neonatal Care. 2020;20(2):109-17. [DOI:10.1097/ANC.0000000000000707] [PMID]
11. Walters A, Grosse J. Is this my home? a palliative care journey through life and death in the NICU: a case report. Adv Neonatal Care. 2020;20(2):127-35. [DOI:10.1097/ANC.0000000000000697] [PMID]
12. McLaughlin SN, Song M-K, Hertzberg V, Piazza AJ. Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital. Adv Neonatal Care. 2020;20(2):136-41. [DOI:10.1097/ANC.0000000000000698] [PMID]
13. Green A, Kim-Godwin YS, Jones CW. Perceptions of spiritual care education, competence, and barriers in providing spiritual care among registered nurses. J Holistic Nurs. 2020;38(1):41-51. [DOI:10.1177/0898010119885266] [PMID]
14. Branchett K, Stretton J. Neonatal palliative and end of life care: What parents want from professionals. J Neonatal Nurs. 2012;18(2):40-4. [DOI:10.1016/j.jnn.2012.01.009]
15. Kain VJ. An exploration of the grief experiences of neonatal nurses: A focus group study. J Neonatal Nurs. 2013;19(2):80-8. [DOI:10.1016/j.jnn.2012.04.001]
16. Fortney CA, Steward DK. A qualitative study of nurse observations of symptoms in infants at end-of-life in the neonatal intensive care unit. Intensive Crit Care Nurs. 2017;40:57-63. [DOI:10.1016/j.iccn.2016.10.004] [PMID] [PMCID]
17. Hughes MT, Smith TJ. The growth of palliative care in the United States. Annu Rev Public Health. 2014;35:459-75. [DOI:10.1146/annurev-publhealth-032013-182406] [PMID]
18. Kain VJ, Chin SD. Conceptually Redefining Neonatal Palliative Care. Adv Neonatal Care. 2020;20(3):187-95. [DOI:10.1097/ANC.0000000000000731] [PMID]
19. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Q Health Res. 2005;15(9):1277-88. [DOI:10.1177/1049732305276687] [PMID]
20. Munhall PL, Chenail RJ. Qualitative research proposals and reports: A guide: Jones & Bartlett Learning; 2008.
21. Speziale HS, Streubert HJ, Carpenter DR. Qualitative research in nursing: Advancing the humanistic imperative: Lippincott Williams & Wilkins; 2011.
22. Creswell JW, Tashakkori A. Differing perspectives on mixed methods research. Sage Publications Sage CA: Los Angeles, CA; 2007. [DOI:10.1177/1558689807306132]
23. Polit DF, Beck CT. Essentials of nursing research: Appraising evidence for nursing practice: Lippincott Williams & Wilkins; 2009.
24. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurs Educ today. 2004;24(2):105-12. [DOI:10.1016/j.nedt.2003.10.001] [PMID]
25. Cerratti F, Tomietto M, Della Pelle C, Kain V, Di Giovanni P, Rasero L, et al. Italian Nurses' Attitudes Towards Neonatal Palliative Care: A Cross‐Sectional Survey. J Nurs Scholarsh. 2020;52(6):661-70. [DOI:10.1111/jnu.12600] [PMID]
26. Richards CA, Starks H, O'Connor MR, Bourget E, Lindhorst T, Hays R, et al. When and why do neonatal and pediatric critical care physicians consult palliative care? Am J Hosp Palliat Med. 2018;35(6):840-6. [DOI:10.1177/1049909117739853] [PMID] [PMCID]
27. Batstone E, Bailey C, Hallett N. Spiritual care provision to end‐of‐life patients: A systematic literature review. J Clin Nurs. 2020;29(19-20):3609-24. [DOI:10.1111/jocn.15411] [PMID]

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