Authors
1 School of Nursing and Midwifery, Tehran University of Medical Sciences, Nursing and Midwifery Care Research Center, Isfahan University of Medical Sciences, Isfahan,
2 Student Research Center, School of Nursing and Midwifery, Isfahan University of Medical Sciences, Department of Nursing, Isfahan (Khorasgan) Branch, Islamic Azad University
3 Department of Pediatrics, Tabriz University of Medical Sciences, Tabriz, IranDepartment of Neonatal Health, Ministry of Health and Medical Education, Tehran,
Abstract
Background and Aims: Newborn death is an unexpected outcome for parents. Parents face
with several needs in infant end‑of‑life. The health care team is responsible for meet these
needs. This qualitative study aim was to explore of parental needs in infant end‑of‑life and
bereavement. Materials and Methods: For this qualitative study, 24 single semi‑structure
interviews were done. A qualitative content analysis method was used. Sampling conducted
on purposeful with maximum variation in five Neonatal Intensive Care Unit (NICU) environments
in Isfahan city. Inclusion criteria for nurses and doctors were having at least one experience of
caring for an infant and their family at end‑of‑life. Inclusion criteria for parents and their families
were having at least one infant at end‑of‑life or had lost their infant for 6 months before in
NICU. Results: Data analysis uncovered two main themes. Family’s support needs with two
subthemes (family’s support needs before infant’s death and family’s support needs after infant’s
death) and family’s preparatory needs upon infant’s death with two subthemes (management
of the bad news of infant’s death by treatment team and management of the bad news of
infant’s death by family). Discussion: Mourning mother’s need for her husband’s presence
by her side, getting hospitalized in a separate room, and management of infant’s death news
by father and family were among items rarely pointed out in other studies. Exploration of these
needs cab be helpful for the health care team for providing care.
Keywords
Neonates in the NICU. The Ohio State University; 2012.
2. O’Brien ME. Spirituality in Nursing.: Jones & Bartlett Publishers;
Boston Toronto London Singapore 2008.
3. Kain, V.J., An exploration of the grief experiences of neonatal
nurses: A focus group study. Journal of Neonatal Nursing, 2013;
19:80‑88.
4. Youngblut JM, Brooten D. Perinatal and pediatric issues in palliative
and end‑of‑life care from the 2011 Summit on the Science of
Compassion. Nursing Outlook 2012;60:343‑50.
5. Bremner, I., Reactions to loss. Medicine. 2008; 36:114‑117.
6. Gold KJ. Navigating care after a baby dies: A systematic review of
parent experiences with health providers. J Perinatol 2007;27:230‑7.
7. Williams C, Munson D, Zupancic J, Kirpalani H. Supporting bereaved
parents: Practical steps in providing compassionate perinatal and
neonatal end‑of‑life care. A North American perspective. Semin
Fetal Neonatal Med 2008;13:335‑40.
8. De Rouck S, Leys M. Information needs of parents of children
admitted to a neonatal intensive care unit: A review of the
literature (1990‑2008). Patient Educ Couns 2009;76:159‑73.
9. Rosenbaum JL, Smith JR, Zollfrank R. Neonatal end‑of‑life spiritual
support care. J Perinat Neonatal Nurs 2011;25:61‑9.
10. Meert KL, Thurston CS, Briller SH. The spiritual needs of parents
at the time of their child’s death in the pediatric intensive care unit
and during bereavement: A qualitative study. Pediatr Crit Care Med
2005;6:420‑7.
11. Henley A, Schott J. The death of a baby before, during or shortly
after birth: Good practice from the parents’ perspective. Semin
Fetal Neonatal Med 2008;13:325‑8.
12. Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end‑of‑life
care: The parents’ perspective. J Perinatol 2007;27:510‑6.
13. Davies R. Mothers’ stories of loss: Their need to be with their
dying child and their child’s body after death. J Child Health Care
2005;9:288‑300.
14. Eden LM, Callister LC. Parent involvement in end‑of‑life care and
decision making in the Newborn Intensive Care Unit: An integrative
review. J Perinat Educ 2010;19:29‑39.
15. Graneheim UH, Lundman B. Qualitative content analysis in
nursing research: Concepts, procedures and measures to achieve
trustworthiness. Nurse Educ Today 2004;24:105‑12.
16. Hsieh HF, Shannon SE. Three approaches to qualitative content
analysis. Qual Health Res 2005;15:1277‑88.
17. Laing IA, Freer Y. Reorientation of care in the NICU. Semin Fetal
Neonatal Med 2008;13:305‑9.
18. Branchett K, Stretton J. Neonatal palliative and end of life care:
What parents want from professionals. Journal of Neonatal Nursing.
2012;18:40‑4.
19. Meert KL, Eggly S, Pollack M, Anand KJ, Zimmerman J, Carcillo J,
et al. Parents’ perspectives on physician‑parent communication
near the time of a child’s death in the pediatric intensive care unit.
Pediatr Crit Care Med 2008;9:2‑7.
20. Zuzelo PR. Exploring the moral distress of registered nurses. Nurs
Ethics 2007;14:344‑59
)