Iran Journal of Nursing

Introduction
Neonates with life-threatening conditions have complex and challenging clinical situations. Parental participation in decision-making for these neonates is morally and ethically approved, as it is the parents who live with the consequences of their neonate’s illness. There is much debate about the role of parents in making decisions in complex and challenging medical settings. Since infants are unable to make decisions, the family bears the primary responsibility for decision-making. Parents are generally the best advocates for their children and, in most cases, are actively involved in decisions for their infants. 
The health care team in the neonatal intensive care unit is not prepared to involve parents in these decisions. In Iran, there is no formal decision-making clinical guideline for children with life-threatening conditions, and parents are highly doubtful about decision-making. Parental participation in decision-making has also not been considered. Few studies have examined the factors affecting parents’ participation in decisions for neonates with life-threatening conditions. Further studies have examined the factors related to parents and the structure of the health system, particularly those related to health workers that affect parental participation in decision-making. 
Factors related to the organizational system remain unknown. No study was found in this field in Iran. In addition, very few studies have examined factors related to neonates with life-threatening conditions in neonatal settings. Identifying factors affecting parental participation in decision-making can lead to removing the barriers and improving parents’ participation. Conducting qualitative research in this field can clarify various aspects of parental participation in decision-making and create a deeper understanding of this phenomenon. The present study aimed to identify organizational factors affecting parents’ participation in decision-making for neonates with life-threatening conditions.

Materials & Methods
As part of a comprehensive project based on Corbin and Straus’s approach to grounded theory (GT) methodology (Corbin & Strauss, 2015), this study explored the process of parental participation in DM for neonates with LTC. Given that involvement in decision-making occurs in an interactive process, participants included 23 people (10 parents, 10 healthcare providers, 1 official in the Neonatal Health Office of the Ministry of Health and Medical Education, and 1 professor of Jurisprudence) Principles of Islamic Law, and 1 insurance agent). Data were generated using in-depth, semi-structured, and face-to-face interviews and observation (68 hours) and simultaneously were analyzed through constant comparison using the approach of Corbin and Strauss, 2015. It includes: 1) identifying concepts (open coding), 2) developing concepts in terms of their properties and dimensions, 3) analyzing data for the context, 4) bringing the process into the analysis, and 5) integrating categories. Data were managed by MAXQDA software v. 12.
The core category and the related categories reflecting contextual and structural factors, parents’ strategies, and the outcome of the adopted strategies were identified. The contextual and structural category reflected a wide range of factors affecting parents’ participation in DM. Since it was impossible to publish all findings in one article, the current study focused on the organizational factors influencing parents’ participation in DM.

Results
Organizational factors affecting the process of parental participation in decision-making consisted of 5 main categories, including 1) power imbalances resulting from two sub-categories of “power imbalances between parents and physicians” and “power imbalances between physicians and nurses,” 2) ethics committee’s deficiencies resulting from three sub-categories including “ unavailability, “structural deficiencies” and “functional deficiencies,” 3) hospital regulations deficiencies resulting from two sub-categories including “ restricting rules of parental presence “and” lack of rules for selecting a NICU nurse “ and 4) resource constraints including two sub-categories of resource constrain for parents and resource constraints for staffs, and 5) ongoing hospitalization the only choice under the three categories including “lack of palliative care option,” “lack of home care services” and “lack of community-based palliative care services 

Dissection
Organizational factors play an important role in parental participation in decision-making. Providing parents of neonates with life-threatening conditions with accommodation and, developing instructions to encourage the presence of parents in the hospital, setting rules for selecting NICU nurses are necessary. Employing an interdisciplinary team of psychologists, social workers, and trained individuals to provide parents with spiritual care is recommended. Appointing hospital ethics committees to investigate cases of critically ill infants and employing experienced and knowledgeable ethicists about the end-of-life issues in these committees are also recommended. Providing healthcare providers with courses on palliative care and neonatal ethics is suggested. It is recommended to conduct action research studies to implement neonatal palliative care programs and situation analysis of the quality of care for neonates with life-threatening conditions. Establishing home care services and community-based palliative care centers for neonates with life-threatening illnesses with the discharge criteria may facilitate timely decision-making and parental participation in decisions. Interdisciplinary studies are also necessary to develop clinical guidelines for decision-making in infants with life-threatening conditions.

Ethical Considerations

Compliance with ethical guidelines
Ethical permission for this study has been obtained from the ethics committee of Iran University of Medical Sciences with the code IR.IUMS.REC.1397.388.

Funding
This study is taken from the doctoral dissertation of the first author in the Department of Pediatrics and Psychiatric Nursing, School of Nursing and Midwifery, Iran University of Medical Sciences.

Authors' contributions
Research: Marjan Banazadeh; Drafting, editing, finalizing the writing and project management: Seyedeh Fatemeh Haghdoost Oskooi and Marjan Banazadeh.

Conflict of interest
The authors declared no conflict of interest

Acknowledgments
The authors thank all the parents, nurses and doctors of Imam Khomeini Hospital, Ali Asghar Children's Hospital, Hazrat Rasool Akram Hospital, and the Children's Medical Center who helped collect the data.
 

1. Boztepe H, Inci F, Tanhan F. Posttraumatic growth in mothers after infant admission to neonatal intensive care unit. Paediatria Croatica. 2015; 59(1):14-8. https://hrcak.srce.hr/file/210116
2. Larcher V, Craig F, Bhogal K, Wilkinson D, Brierley J; Royal College of Paediatrics and Child Health. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: A framework for practice. Arch Dis Child. 2015; 100(Suppl 2):s3-23. [DOI:10.1136/archdischild-2014-306666] [PMID]
3. Carter BS, Jones PM. Evidence-based comfort care for neonates towards the end of life. Semin Fetal Neonatal Med. 2013; 18(2):88-92. [DOI:10.1016/j.siny.2012.10.012] [PMID]
4. American Academy of Pediatrics Committee on Fetus and Newborn, Bell EF. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics. 2007; 119(2):401-3. [DOI:10.1542/peds.2006-3180] [PMID]
5. McHaffie HE, Laing IA, Parker M, McMillan J. Deciding for imperilled newborns: Medical authority or parental autonomy? J Med Ethics. 2001; 27(2):104-9. [DOI:10.1136/jme.27.2.104] [PMID] [PMCID]
6. Tejedor Torres JC, López de Heredia Goya J, Herranz Rubia N, Nicolás Jimenez P, García Munóz F, Pérez Rodríguez J, et al. [Recommendations on making decisions and end of life care in neonatology (Spanish)]. An Pediatr (Barc). 2013; 78(3):190.e1-190.e14. [PMID]
7. Gillam L, Sullivan J. Ethics at the end of life: Who should make decisions about treatment limitation for young children with life-threatening or life-limiting conditions? J Paediatr Child Healt. 2011; 47(9):594-8. [DOI:10.1111/j.1440-1754.2011.02177.x] [PMID]
8. Aein F, Alhani F, Mohammadi E, Kazemnejad A. Struggling to create new boundaries: A grounded theory study of collaboration between nurses and parents in the care process in Iran. J Adv Nurs. 2011; 67(4):841-53. [DOI:10.1111/j.1365-2648.2010.05515.x] [PMID]
9. Kadivar M, Madani M, Mardani Hamooleh M, Ghasemzadeh N. [An ethical approach to providing medical, supportive and palliative services for infants with chronic renal failure and their families (Persian)]. Iran J Med Ethics Hist Med. 2016; 8(5):10-9. [Link]
10. Boland L, Kryworuchko J, Saarimaki A, Lawson ML. Parental decision making involvement and decisional conflict: A descriptive study. BMC Pediatr. 2017; 17(1):146. [DOI:10.1186/s12887-017-0899-4] [PMID] [PMCID]
11. Aarthun A, Øymar KA, Akerjordet K. How health professionals facilitate parents’ involvement in decision-making at the hospital: A parental perspective. J Child Health Care. 2018; 22(1):108-21. [DOI:10.1177/1367493517744279] [PMID]
12. Aarthun A, Akerjordet K. Parent participation in decision-making in health-care services for children: An integrative review. J Nurs Manag. 2014; 22(2):177-91. [DOI:10.1111/j.1365-2834.2012.01457.x] [PMID]
13. Grove S, Burns NA, Gray J. The practice of nursing research: Appraisal, synthesis, and generation of evidence. Philadelphia:Saunders; 2013. [Link]
14. Polit DF, Beck CT. Essentials of nursing research: Appraising evidence for nursing practice. Philadelphia: Lippincott Williams and Wilkins; 2014. [Link]
15. Holloway I, Galvin K. Qualitative research in nursing and healthcare. New Jersey: Wiley; 2016. [Link]
16. Corbin J, Strauss A. Basics of qualitative research: Techniques and procedures for developing grounded theory. California: SAGE publications; 2015. [Link]
17. Higginbottom GM, Pillay JJ, Boadu NY. Guidance on performing focused ethnographies with an emphasis on healthcare research. Qual Rep. 2013; 18(9):1-16. [DOI:10.46743/2160-3715/2013.1550]
18. Denzin NK, Lincoln YS. The landscape of qualitative research: Theories and issues. California: SAGE Publications; 1998. [Link]
19. Asemani O. [A review of the models of physician-patient relationship and its challenges (Persian)]. Iran J Med Ethics Hist Med. 2012; 5(4):36-50. [Link]
20. Mirlashari J, Brown H, Fomani FK, de Salaberry J, Zadeh TK, Khoshkhou F. The challenges of implementing family-centered care in NICU from the perspectives of physicians and nurses. J Pediatr Nurs. 2020; 50:e91-8. [DOI:10.1016/j.pedn.2019.06.013] [PMID]
21. Orfali K. Parental role in medical decision-making: Fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units. Soc Sci Med. 2004; 58(10):2009-22. [DOI:10.1016/S0277-9536(03)00406-4]
22. Negarandeh R, Oskouie F, Ahmadi F, Nikravesh M. The meaning of patient advocacy for Iranian nurses. Nurs Ethics. 2008; 15(4):457-67. [DOI:10.1177/0969733008090517] [PMID]
23. Joolaee S, Cheraghi MA, Hajibabaee F. [Are hospital ethics committees necessary? (Persian)] Iran J Med Ethics Hist Med. 2015; 8(4):12-20. [Link]
24. Gibbs D, Boshoff K, Stanley M. Becoming the parent of a preterm infant: A meta-ethnographic synthesis. Br J Occup Ther. 2015; 78(8):475-87. [DOI:10.1177/0308022615586799]
25. Scott Tilley DD. Competency in nursing: A concept analysis. J Contin Educ Nurs. 2008; 39(2):58-64. [DOI:10.3928/00220124-20080201-12] [PMID]
26. Namnabati M, Farzi S, Ajoodaniyan N. [Care challenges of the neonatal intensive care unit (Persian)]. Iran J Nurs Res. 2016; 11(4):35-42. [DOI:10.21859/ijnr-110404]
27. Nguyen TAP, Ho LY. Review on neonatal end-of-life decision-making: Medical authority or parental autonomy? Proc Singapore Healthc. 2013; 22(2):140-5. [DOI:10.1177/201010581302200210]
28. Falck AJ, Moorthy S, Hussey-Gardner B. Perceptions of palliative care in the NICU. Adv Neonatal Care. 2016; 16(3):191-200. [DOI:10.1097/ANC.0000000000000301] [PMID]
29. Salmani N, Rassouli M, Mandegari Z, Bagheri I, Fallah Tafti B. Palliative care in neonatal intensive care units: Challenges and solutions. Iran J Neonatol. 2018; 9(2):33-41. [Link]
30. Ghorbani Tabbakhi F. [Nurses’ lived experiences of family-centered care in neonatal intensive care unit: A hermeneutic phenomenological study (Persian)] [PhD thesis]. Tabriz: Tabriz University of Medical Sciences, School of Nursing and Midwifery; 2017.
31. Banazadeh M, Rafii F. A concept analysis of neonatal palliative care in nursing: Introducing a dimensional analysis. Compr Child Adolesc Nurs. 2020; 1-26. [PMID]
32. American College of Obstetricians and Gynecologists and the Society for Maternal–Fetal Medicine, Ecker JL, Kaimal A, Mercer BM, Blackwell SC, deRegnier RA, et al. # 3: Periviable birth. Am J Obstet Gynecol. 2015; 213(5):604-14. [DOI:10.1016/j.ajog.2015.08.035] [PMID]
33. Dunn S, Cragg B, Graham ID, Medves J, Gaboury I. Interprofessional shared decision making in the NICU: A survey of an interprofessional healthcare team. J Res Interprof Pract Educ. 2013; 3(1). [DOI:10.22230/jripe.2013v3n1a91]
34. Stacey D, Légaré F, Pouliot S, Kryworuchko J, Dunn S. Shared decision making models to inform an interprofessional perspective on decision making: A theory analysis. Patient Educ Couns. 2010; 80(2):164-72. [DOI:10.1016/j.pec.2009.10.015] [PMID]
35. Joseph Williams N, Edwards A, Elwyn G. Preparing patients ahead of time to share decisions about their health care. In: Elwyn G, Edwards A, editors. Shared decision making in health care: Achieving evidence-based patient choice. Oxford University Press; 2016. [DOI:10.1093/acprof:oso/9780198723448.003.0008]
36. Quinn M, Gephart S. Evidence for implementation strategies to provide palliative care in the neonatal intensive care unit. Adv Neonatal Care. 2016; 16(6):430-8. [DOI:10.1097/ANC.0000000000000354] [PMID]
37. Kain VJ, Wilkinson DJ. Neonatal palliative care in action: Moving beyond the rhetoric and influencing policy. J Res Nurs. 2013; 18(5):459-68. [DOI:10.1177/1744987113490713]
38. Azizzadeh 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 Care. 2017; 34(3):205-11. [DOI:10.1177/1049909115616597] [PMID]
39. Burns KH, Casey PH, Lyle RE, Bird TM, Fussell JJ, Robbins JM. Increasing prevalence of medically complex children in US hospitals. Pediatrics. 2010; 126(4):638-46. [DOI:10.1542/peds.2009-1658] [PMID]
40. Wool C, Catlin A. Perinatal bereavement and palliative care offered throughout the healthcare system. Ann Palliat Med. 2018; 8(Suppl 1):S22-9. [DOI:10.21037/apm.2018.11.03] [PMID]
41. Iranmanesh S, Banazadeh M, Forozy MA. Nursing staff’s perception of barriers in providing end-of-life care to terminally ill pediatric patients in Southeast Iran. Am J Hosp Palliat Care. 2016; 33(2):115-23. [DOI:10.1177/1049909114556878] [PMID]