Perceptions and Needs of NICU Professionals Regarding Pediatric Palliative Care: A Qualitative Study Compared with International Literature

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This study explores perceptions, experiences, and needs of NICU staff concerning PPC in the context of implementing collaboration with a pediatric palliative care reference center (CRSPP). Methods A qualitative descriptive study using a semi-structured questionnaire was conducted among NICU professionals. Among 91 staff, 26 complete responses were thematically analyzed. Results were compared with international literature. Results Respondents highlighted emotional distress, communication challenges, need for ethical guidance, training gaps, and a desire for stronger integration of PPC teams. The collaboration with CRSPP was perceived as helpful by many, although underutilized by some. Conclusion NICU professionals face significant moral and emotional burdens in PPC. Strengthening training, team cohesion, and early PPC integration can improve care quality and staff well-being. Neonatal Intensive Care Unit Pediatric Palliative Care Qualitative Research Moral Distress Interdisciplinary Communication Figures Figure 1 Introduction In Belgium, neonatal and infant mortality remains a concern, with an infant mortality rate of 2.9‰ per 1,000 live births in 2022 ( 1 ). The main causes of neonatal deaths are premature births, birth complications (such as neonatal asphyxia and trauma), neonatal infections and congenital anomalies. The provision of pediatric palliative care (PPC) in neonatal intensive care units (NICUs) is a growing priority worldwide. Healthcare professionals face complex ethical dilemmas, emotional stress, and communication challenges, particularly in end-of-life situations. In Belgium, PPC is structured through seven regional liaison teams which provide multidisciplinary support in hospitals, home settings, and other care environments. These teams operate within a coordinated network that includes hospitals, general practitioners, and social services, following a holistic, family-centered approach. Although a legal and organizational framework for PPC exists, early integration of palliative care into pediatric hospital services—particularly in neonatal units—remains inconsistent. ( 2 , 3 ). In 2023, a dedicated Pediatric Palliative Care Reference Center (CRSPP) was established in our hospital with a multidisciplinary structure. The team offers holistic support—medical, psychological, and ethical—to both families and healthcare providers, working in hospital and home settings. Furthermore, the CRSPP is designed to foster a palliative care culture within the hospital and to support healthcare teams that are increasingly understaffed and struggling with the complexity of end-of-life situations in children. .This study aims to explore NICU professionals’ perspectives on PPC and compare findings with current international literature. Methods This qualitative study was conducted in a level 4 NICU located in a Belgian university hospital. The NICU comprised 5 non intensive and 24 intensive care beds, accommodating both preterm infants and full-term neonates with serious or life-threatening conditions. The unit admits approximately 350 newborns per year with a mortality rate of 3.4%. A semi-structured questionnaire was distributed in May 2024 to all healthcare professionals (n = 91) working in this NICU (Table 1 ). The objective of the questionnaire was to explore their perceptions, needs, difficulties, and expectations regarding pediatric palliative care (PPC), particularly in the context of collaboration with a local reference team (CRSPP). A thematic analysis was conducted using an inductive coding approach, with manual categorization of the open-ended responses by two independent reviewers from different professional backgrounds: one physician and one nurse. Anonymity was ensured. Twenty-six responses (28.6%) were received and thematically analyzed. Participants included nurses (n = 18), pediatricians (n = 5), psychologists (n = 2), and physiotherapist (n = 1) (Fig. 1 ). Experience levels ranged from 10 years (n = 11); 12 were full-time, and 14 were part-time employees. The responses to the questionnaire were sent back to the entire neonatology team and a working session was held to look for practical ways of improving the challenges encountered. Table 1 Survey Questions Question Number Survey Question Q1 What is your experience when facing situations that do not follow the curative care approach? Q2 What does limitation of care mean to you, and how do you perceive it? Q3 How do you approach dialogue with families in such situations? What are your difficulties? Q4 How do you manage conflicts with parents? Q5 In a few words, what does pediatric palliative care (PPC) mean to you? Q6 Please list 5 essential qualities for optimal care of a child with a limited prognosis. Q7 Since the collaboration with the specialized PPC team (CRSPP), have you noticed changes in your practice? Q8 Do you have specific needs for supporting children in complex situations? Q9 How do you personally and professionally cope with complex situations? Q10 Do you have any other suggestions? Results Thematic analysis of the 26 qualitative responses yielded five dominant themes and the box 1 summarizes illustrative quotes from responders about these themes : 1. Emotional Distress and Moral Dilemmas : Many respondents shared the intense emotional toll of transitioning from curative to palliative care. Some described feelings of helplessness, while others expressed a sense of moral burden in ceasing life-sustaining interventions. 2. Ethical Reflection on Treatment Limitation : Professionals viewed limitation of care as a complex but necessary decision centered on the child's well-being. Several emphasized the importance of multidisciplinary consensus and involving the family in a transparent manner. 3. Communication with Families : Communication emerged as both a cornerstone of care and a key source of difficulty. Challenges cited included language and cultural barriers, managing parental emotions, and the difficulty of finding the right words in end-of-life contexts. 4. Team Dynamics and Conflict Management : Respondents indicated variability in team cohesion. Some experienced strong interdisciplinary collaboration, while others reported a lack of structured dialogue, especially during ethically charged cases. 5. Training Needs and Institutional Integration : Nearly all participants highlighted the need for PPC-specific training and regular psychological support. PPC is perceived as human, compassionate, and respectful care, emphasizing dignity and family support. The specialized PPC team (CRSPP) was generally well-regarded but inconsistently consulted or integrated. Box 1. Representative Quotations from Respondents concerning the five dominant themes “The death of a child is always difficult; it never becomes routine.” — Nurse, > 10 years “It is sometimes very hard to shift from aggressive treatment to supportive care without feeling like we’ve given up.” — Physician “Limitation of care means seeking what is right for the child, not just what is medically possible.” — Nurse “Talking about the death of a newborn to parents is a violence—for them and for us.” — Pediatrician “The palliative care team is a valuable support, but it should be more integrated.” — Nurse “I think we also need regular psychological support. Deaths leave their mark.” — Nurse Discussion Our study confirms that neonatal palliative care (PPC) is both an ethically sensitive and emotionally taxing field, requiring robust institutional support, interdisciplinary dialogue, and targeted training. The five key themes we identified reflect concerns deeply rooted in the international literature. 1. Moral Distress and Compassion Fatigue Many respondents conveyed emotional exhaustion. Moral distress remains a core concern in neonatal intensive care, particularly when professionals face value conflicts and constrained decision-making. As pointed by Prentice et al., moral distress arises when clinicians are unable to act according to their ethical convictions—typically due to institutional barriers, team disagreements, or family expectations ( 4 ). Key triggers include the provision of care perceived as non-beneficial, lack of consensus on treatment goals, and inadequate communication processes. Nurses in particular have been shown to report higher levels of moral distress than physicians, often linked to their proximity to the infant and family and their limited decision-making authority ( 4 ). This aligns with our findings, where bedside caregivers reported emotional symptoms such as helplessness and sadness. The literature also describes long-term consequences, including burnout, team dysfunction, and lingering moral residue. This is echoed by nurses who stated: The death of a child is always difficult; it never becomes routine. Others argue that neonatal nurses frequently experience compassion fatigue, particularly in units lacking structured psychological support ( 5 ). In our study, participants frequently requested ongoing debriefings, echoing the World Heath Organization (WHO) recommendation that PPC systems must care for professionals as well as patients ( 6 ). 2. Ethical Complexity of Limitation of Care Respondents described limitation of care not as treatment withdrawal but as a decision in favor of the child’s best interests. As one respondent noted: Limitation of care means seeking what is right for the child, not just what is medically possible. This viewpoint aligns with Wilkinson’s concept of the “grey zone,” where clinical decisions cannot rely solely on prognosis or survival data ( 7 ). Instead, ethical discernment and interdisciplinary dialogue become essential. Bertaud et al. also advocate for anticipatory PPC involvement in such decisions ( 8 ). 3. Communication as a Core but Burdensome Competency The difficulty of dialoguing with families, especially when shifting from curative to palliative trajectories, emerged in nearly all responses. One pediatrician wrote: Talking about the death of a newborn to parents is a violence—for them and for us. De Vos et al. emphasize the emotional impact of such conversations on both clinicians and parents ( 9 ). Silveira et al. found that hope—even in palliative contexts—is shaped by how information is conveyed, and by the cultural framing of illness and death ( 10 ). These insights stress the need for training in relational ethics and narrative communication, still lacking in most NICUs ( 11 ). 4. Team Cohesion and Interdisciplinary Challenges Despite the existence of a PPC reference team (CRSPP), responses highlighted inconsistencies in how and when they are involved. Some felt well-supported, while others experienced team fragmentation and decision-making silos. The WHO 2023 underscores that palliative care must be fully integrated from the prenatal period and embedded in institutional practice—not episodic ( 6 ). Quotes such as: The palliative care team is a valuable support, but it should be more integrated. reveal that perceived utility of PPC teams depends on clear referral pathways, role clarification, and shared goals. 5. Need for Training, Support and Institutional Culture Change Almost all respondents called for regular education and reflective spaces. As noted by Koliouli et al., PPC in neonatology is often introduced late and lacks standardization, contributing to role ambiguity and ethical distress ( 12 ). Cultural sensitivity is also key, as Betremieux et al. pointed out in their review of PPC across multicultural settings ( 13 ). A nurse noted: I think we also need regular psychological support. Deaths leave their mark. This aligns with McCarthy et al., who argued for palliative strategies that not only improve patient quality of life but reduce caregiver burnout ( 14 ). In addition to the five core themes, our data also revealed a secondary but significant theme related to intra-team divergence and interprofessional tensions . Several respondents expressed difficulty navigating situations where the care team lacked consensus about palliative approaches: "It is sometimes difficult to reach agreement, especially when some still believe that cure is always possible." (nurse) "The physician proposes a limitation of care, but some nurses or care assistants do not agree, and that creates tension." (nurse) "What burdens me is when we are not aligned within the team—it makes decisions heavier and slower." (Pediatrician) These insights point to the emotional weight carried by professionals when facing ethical ambiguity without team unity. This aligns with Wilkinson, who notes that decision-making becomes ethically complex when there are divergent perceptions of what constitutes the child's best interest ( 7 ). Prentice et al. describe this as a moral residue—when clinicians feel unresolved about decisions made without adequate consensus ( 4 ). Nurses reported higher levels of moral distress compared to physicians. The findings underscore the necessity for structured team discussions and consistent interdisciplinary ethics support. Respondents suggested: "Team meetings should be mandatory when a decision about palliative care is being considered. Too often, not everyone is present or listened to." (NICU midwife) Such suggestions reflect a demand for procedural clarity and emotional containment within teams navigating neonatal end-of-life decisions. Another factor potentially affecting the coherence of care and decision-making is the high proportion of part-time staff (n = 14 out of 26 responders). This workforce dynamic may hinder consistent communication and shared understanding within the NICU team, especially during ethically challenging situations or end-of-life planning ( 4 ). Discontinuity in staffing can lead to fragmented care and make it more difficult to establish a unified palliative approach. To address this, the implementation of structured interdisciplinary handovers, dedicated PPC briefings, and shared digital communication tools may help ensure continuity and alignment among professionals despite variable work schedules. This additional theme enriches our understanding of PPC practice in NICUs, where staff must balance not only family-centered care but also internal professional dynamics that shape the care trajectory. Furthemore, Currie et al. underscores the critical need for earlier integration of pediatric palliative care (PPC) in children with chronic complex conditions ( 15 ). Their findings revealed that most children received PPC consultations only in the final days of life, often too late to meaningfully influence the trajectory of care. This aligns with concerns expressed by respondents in our NICU survey regarding delays in PPC involvement and limited anticipatory planning. They call for proactive identification and earlier engagement supports our recommendation to implement clear referral pathways and empower frontline NICU staff through training ( 15 ). The importance of early palliative care integration is also supported by Deming et al., who analyzed NICU care for infants with complex chronic conditions ( 16 ). Their study found that despite poor prognoses, infants frequently received prolonged, high-intensity interventions such as ventilation and surgeries, often until death. Boss et al. expand the scope of neonatal palliative care by advocating for its application beyond acute NICU care to include support for NICU survivors living with chronic critical illness ( 17 , 18 ). These infants, often reliant on complex technologies and prone to repeated hospitalizations, represent a growing and underserved population. They argue that PPC should be integrated longitudinally, continuing after discharge to address enduring family strain and fragmented care. Akyempon and Aladangady also advocate for a structured neonatal and perinatal palliative care pathway grounded in a parallel planning model ( 19 ). Their approach emphasizes early family engagement, sociocultural sensitivity, and interdisciplinary coordination—elements that resonate with the needs expressed in our own study. By providing operational tools adaptable even in the absence of specialist teams, this model offers practical strategies that NICUs can adopt to bridge care gaps. The work of Bertaud et al. also adds depth to this discussion, proposing a tiered PPC framework that accommodates the diversity of clinical needs ( 8 ). Their model mirrors the heterogeneity observed in our respondents’ experiences—where some staff felt adequately supported while others highlighted coordination challenges. The emphasis on early and routine PPC involvement aligns with our findings and supports a system-level approach to minimizing moral distress. PPC in the NICU must evolve from a reactive service into a foundational element of neonatal care. This perspective echoes the concerns of our participants regarding limited post-discharge planning and emotional exhaustion, suggesting that PPC should serve as a long-term support structure rather than a late-stage intervention. The recent studies and our own data converge not only on the necessity for anticipatory planning, but also an interdisciplinary ethics support, and a cultural shift toward integrating PPC principles into everyday NICU practice. Recommendations to Address Identified Challenges A working session with the PPC team and some representative members of the neonatology unit tried to identify some practical ways of responding to the difficulties expressed in the questionnaire. These recommendations are listed in Table 2 Table 2 Practical Recommendations to Address Identified Challenges Challenge Recommendations Team moral distress and compassion fatigue Debriefing sessions, psychological support groups, resilience training, institutional recognition. Communication with families Training in communication, mediator support, structured tools for family meetings. End-of-life decision-making Written protocols, ethics consultation, clear role definitions. Intra-team divergence Scheduled interdisciplinary meetings, ethics workshops, PPC liaison roles. Integration of PPC in NICU Onboarding PPC training, coordination with mobile PPC teams, institutional integration. Strengths and Weaknesses of NICU PPC Practice Compared to Literature The qualitative survey revealed several key strengths within the NICU's current approach to pediatric palliative care. Most respondents defined PPC as a global, comfort-oriented, and family-centered process, indicating that palliative philosophy is not limited to end-of-life care. This aligns with WHO recommendations and current literature emphasizing early integration of PPC ( 20 ). Another significant asset was the presence of a dedicated PPC team, seen by staff as a valuable source of ethical support. Such organizational structures are widely recommended in international guidelines ( 6 , 8 ). Staff also showed a strong humanistic ethos, citing empathy, dignity, and listening as core values. However, notable gaps persist. The use of the CRSPP remains inconsistent, and decisions about end-of-life care are often made without formal protocols or systematic interdisciplinary meetings. This lack of structured processes may contribute to divergent views within the care team-a theme echoed in participant comments and well-documented in the literature ( 4 , 7 ). Respondents expressed moral distress when facing such divergences, underscoring the need for ethical mediation and leadership clarity. Training deficits were also identified: many respondents requested support in delivering bad news, managing cultural diversity, and regulating emotional fatigue. These align with findings from Chin et al and McCarthy et al. which show that insufficient communication training is a major barrier to effective PPC ( 11 , 14 ). Although informal debriefings are in place, a structured burnout prevention strategy is lacking. Lastly, the 28% response rate raises concern about the general engagement of staff with the topic of PPC. The low participation could indicate time constraints or emotional discomfort with end-of-life themes—a phenomenon also noted by Koliouli et al. ( 12 ). Study Limitations and future This study has several limitations. First, the response rate was 28.6% (26/91), which may reflect non-response bias ; those more engaged or affected by palliative care practices might have been more inclined to respond. Second, the research was conducted in a single Belgian NICU, which limits generalizability to other contexts, particularly in different cultural or institutional environments. Additionally, since the survey was voluntary and anonymous, there may be self-selection bias and no opportunity to follow up with participants to clarify or deepen their responses. Furthermore, the qualitative analysis of open-ended responses introduces potential interpretative bias, although efforts were made to align themes with established literature. The study did not stratify responses by years of experience or by hierarchical role, which might have revealed important differences in perspective—for example, perceptions of intra-team conflict or communication difficulty may vary across seniority levels. Similarly, views on palliative decision-making processes could differ between nurses and physicians, which this study could not explore in depth. Lastly, only staff perspectives were analyzed; the absence of parental or family viewpoints limits the holistic understanding of palliative care dynamics in this setting. Including families’ experiences in future work would provide a more balanced view of the challenges and values guiding neonatal palliative care. Conclusion NICU professionals face complex moral, emotional, and organizational challenges when implementing pediatric palliative care. This qualitative study confirms the need for better and earlier integration of PPC teams. Structured training and psychological support mechanisms are essential to enhance both care quality and staff resilience. The establishment of a shared, anticipatory, and coherent palliative care culture is essential within neonatal care units. Abbreviations PPC Pediatric palliative care CRSPP Pediatric palliative care reference center NICU Neonatal intensive care unit WHO World health organization Declarations Ethic approval This study was conducted in accordance with the ethical standards of our institutional research committee. As the study was based on anonymous responses to an internal qualitative questionnaire among staff and did not involve patient data, formal ethics approval was not required under Belgian legislation and was not requested. Participation was voluntary, and informed consent was implied by completion of the questionnaire. The study did not involve experiments on humans or use of human tissue samples. Consent for publication Not applicable. Availability of data The datasets used and analyzed during the current study are available from the corresponding author on reasonable request. Competing interest The authors declare that they have no competing interests. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors Authors’contributions BB and BDT designed and developped the study. BB, ML, BDT and CH conducted the study in the NICU. BB and ML conducted data analysis and interpretation and drafted the manuscript. BDT, DB, NC, CH reviewed and revised the manuscript. All authors read and approved the final version of the manuscript. Acknowledgements The authors thank all NICU staff members who participated in the survey and contributed their reflections to this study. They also wish to express their gratitude to the CRSPP team for their longstanding commitment and support of children and families facing life-limiting conditions. Authors’information 1 Division of Paediatric Oncology and Haematology, Cliniques Universitaires Saint Luc, Université Catholique de Louvain, 10, avenue Hippocrate, 1200 Brussels, Belgium. 2 Pediatric Palliative Care Reference Center, Cliniques Universitaires Saint Luc, Université Catholique de Louvain, 10, avenue Hippocrate, 1200 Brussels, Belgium. 3 Division of Neonatology, Cliniques Universitaires Saint Luc, Université Catholique de Louvain, 10, avenue Hippocrate, 1200 Brussels, Belgium. 4 Division of Paediatric Neurology, Cliniques Universitaires Saint Luc, Université Catholique de Louvain, 10, avenue Hippocrate, 1200 Brussels, Belgium. References Statbel, Statistics Belgium, Brussels S. 2023 [cited 2025 Jul 28]. Available from: https://statbel.fgov.be/en/themes/population/births-and-fertility/infant-mortality Friedel M, Brichard B, Fonteyne C, Renard M, Misson JP, Vandecruys E, et al. Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014. BMC Palliat Care. 2018;17(1):77. 10.1186/s12904-018-0324-2 . Le Roux M, Bellis D, de Terwangne B, Brichard B. Les soins palliatifs pédiatriques en Belgique: pour qui? Etat des leix en belgique. Louvain Med. 2023;142(08):347–54. Prentice T, Janvier A, Gillam L, Davis PG. Moral distress within neonatal and pediatric intensive care units: a systematic review. Arch Dis Child. 2016;101(8):701–8. 10.1136/archdischild-2015-309410 . Bozdag F, Basdas O, Atli N. Compassion fatigue and palliative care in neonatal nurses. Palliat Support Care. 2025;23(e4):1–8. 10.1017/S147895152400110X . World Health Organization. Palliative care for children [Internet]. 2023 [cited 2025 Jul 8]. Available from: https://www.who.int/europe/news-room/fact-sheets/item/palliative-care-for-children Wilkinson D. Who should decide for critically ill neonates and how? The grey zone in neonatal treatment decisions. In: McDougall R, Delany C, Gillam L, editors. When Doctors and Parents Disagree: Ethics, Paediatrics & the Zone of parental Discretion. Bookshelf URL: Federation; 2016. jun20 Chap. 4. https://www.ncbi.nlm.nih.gov/books/ . Bertaud S, Montgomery AM, Craig F. Paediatric palliative care in the NICU: a new era of integration. Semin Fetal Neonatal Med. 2023;28(4):101509. De Vos MA, Bos AP, Plotz FB, van Heerde M, de Graaf J, Tates K, et al. Talking with parents about end-of-life decisions for their children. Pediatrics. 2015;135(2):e465–76. Silveira AO, Bousso RS, Baliza MF, Balieiro MM, Silva L, Lopes RD. Parents’ hope in perinatal and neonatal palliative care: a scoping review. BMC Palliat Care. 2023;22(1):34. Chin SDN, Paraszczuk AM, Eckardt P, Bressler T. Neonatal nurses’ perceptions of palliative care in neonatal intensive care units. MCN Am J Matern Child Nurs. 2021;46(4):188–94. Koliouli F, Gasper C, Berdot-Talmier L, Zaouche-Gaudron C. Les soins palliatifs en néonatologie : une revue de la littérature. Rev Int Soins Palliat. 2017;32(3):52–60. Betremieux P, Mannoni C. Soins palliatifs du nouveau-né et cultures. Arch Pediatr. 2013;20:1000–5. McCarthy FT, Kenis A, Parravicini E. Perinatal palliative care: focus on comfort. Front Pediatr. 2023;11:1258285. 10.3389/fped.2023.1258285 . Currie ER, Wolfe J, Boss R, Johnston EE, Paine C, Perna SJ, et al. Patterns of pediatric palliative and end-of-life care in children with chronic complex conditions. J Pain Symptom Manage. 2023;66(2):125–34. Deming N, Hwang SS, Boss RD, White MT, Smith K. Care intensity and palliative care in infants with complex chronic conditions. Pediatr Crit Care Med. 2023;24(3):186–94. Akyempon AN, Aladangady N. Neonatal and perinatal palliative care pathway: a tertiary neonatal unit approach. BMJ Paediatr Open. 2021;5(1):e000820. 10.1136/bmjpo-2020-000820 . Boss RD. Palliative care for NICU survivors with chronic critical illness: A missing layer of support. Semin Fetal Neonatal Med. 2023;28:101502. Boss RD, Mercurio MR, Operationalizing Neonatal Palliative Care. Semin Fetal Neonatal Med. 2023;28:101474. 10.1016/j.siny.2023.101474 . American College of Obstetricians and Gynecologists. ACOG Committee Opinion 786: Perinatal Palliative Care. Obstet Gynecol. 2019;134(3):e84–9. Additional Declarations No competing interests reported. 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The main causes of neonatal deaths are premature births, birth complications (such as neonatal asphyxia and trauma), neonatal infections and congenital anomalies.\u003c/p\u003e\u003cp\u003eThe provision of pediatric palliative care (PPC) in neonatal intensive care units (NICUs) is a growing priority worldwide. Healthcare professionals face complex ethical dilemmas, emotional stress, and communication challenges, particularly in end-of-life situations. In Belgium, PPC is structured through seven regional liaison teams which provide multidisciplinary support in hospitals, home settings, and other care environments. These teams operate within a coordinated network that includes hospitals, general practitioners, and social services, following a holistic, family-centered approach. Although a legal and organizational framework for PPC exists, early integration of palliative care into pediatric hospital services\u0026mdash;particularly in neonatal units\u0026mdash;remains inconsistent. (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). In 2023, a dedicated Pediatric Palliative Care Reference Center (CRSPP) was established in our hospital with a multidisciplinary structure. The team offers holistic support\u0026mdash;medical, psychological, and ethical\u0026mdash;to both families and healthcare providers, working in hospital and home settings. Furthermore, the CRSPP is designed to foster a palliative care culture within the hospital and to support healthcare teams that are increasingly understaffed and struggling with the complexity of end-of-life situations in children. .This study aims to explore NICU professionals\u0026rsquo; perspectives on PPC and compare findings with current international literature.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThis qualitative study was conducted in a level 4 NICU located in a Belgian university hospital. The NICU comprised 5 non intensive and 24 intensive care beds, accommodating both preterm infants and full-term neonates with serious or life-threatening conditions. The unit admits approximately 350 newborns per year with a mortality rate of 3.4%.\u003c/p\u003e\u003cp\u003eA semi-structured questionnaire was distributed in May 2024 to all healthcare professionals (n\u0026thinsp;=\u0026thinsp;91) working in this NICU (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). The objective of the questionnaire was to explore their perceptions, needs, difficulties, and expectations regarding pediatric palliative care (PPC), particularly in the context of collaboration with a local reference team (CRSPP). A thematic analysis was conducted using an inductive coding approach, with manual categorization of the open-ended responses by two independent reviewers from different professional backgrounds: one physician and one nurse. Anonymity was ensured. Twenty-six responses (28.6%) were received and thematically analyzed. Participants included nurses (n\u0026thinsp;=\u0026thinsp;18), pediatricians (n\u0026thinsp;=\u0026thinsp;5), psychologists (n\u0026thinsp;=\u0026thinsp;2), and physiotherapist (n\u0026thinsp;=\u0026thinsp;1) (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Experience levels ranged from \u0026lt;\u0026thinsp;5 years (n\u0026thinsp;=\u0026thinsp;7), 6\u0026ndash;10 years (n\u0026thinsp;=\u0026thinsp;8), to \u0026gt;\u0026thinsp;10 years (n\u0026thinsp;=\u0026thinsp;11); 12 were full-time, and 14 were part-time employees.\u003c/p\u003e\u003cp\u003eThe responses to the questionnaire were sent back to the entire neonatology team and a working session was held to look for practical ways of improving the challenges encountered.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eSurvey Questions\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQuestion Number\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSurvey Question\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eWhat is your experience when facing situations that do not follow the curative care approach?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eWhat does limitation of care mean to you, and how do you perceive it?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eHow do you approach dialogue with families in such situations? What are your difficulties?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eHow do you manage conflicts with parents?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eIn a few words, what does pediatric palliative care (PPC) mean to you?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003ePlease list 5 essential qualities for optimal care of a child with a limited prognosis.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSince the collaboration with the specialized PPC team (CRSPP), have you noticed changes in your practice?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDo you have specific needs for supporting children in complex situations?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eHow do you personally and professionally cope with complex situations?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQ10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eDo you have any other suggestions?\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eThematic analysis of the 26 qualitative responses yielded five dominant themes and the box 1 summarizes illustrative quotes from responders about these themes :\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e1. Emotional Distress and Moral Dilemmas\u003c/strong\u003e: Many respondents shared the intense emotional toll of transitioning from curative to palliative care. Some described feelings of helplessness, while others expressed a sense of moral burden in ceasing life-sustaining interventions.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e2. Ethical Reflection on Treatment Limitation\u003c/strong\u003e: Professionals viewed limitation of care as a complex but necessary decision centered on the child's well-being. Several emphasized the importance of multidisciplinary consensus and involving the family in a transparent manner.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e3. Communication with Families\u003c/strong\u003e: Communication emerged as both a cornerstone of care and a key source of difficulty. Challenges cited included language and cultural barriers, managing parental emotions, and the difficulty of finding the right words in end-of-life contexts.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e4. Team Dynamics and Conflict Management\u003c/strong\u003e: Respondents indicated variability in team cohesion. Some experienced strong interdisciplinary collaboration, while others reported a lack of structured dialogue, especially during ethically charged cases.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e5. Training Needs and Institutional Integration\u003c/strong\u003e: Nearly all participants highlighted the need for PPC-specific training and regular psychological support. PPC is perceived as human, compassionate, and respectful care, emphasizing dignity and family support. The specialized PPC team (CRSPP) was generally well-regarded but inconsistently consulted or integrated.\u003c/p\u003e\n\u003cp\u003eBox 1. Representative Quotations from Respondents concerning the five dominant themes\u003c/p\u003e\n\u003cdiv\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026ldquo;The death of a child is always difficult; it never becomes routine.\u0026rdquo; \u0026mdash; Nurse, \u0026gt;\u0026thinsp;10 years\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026ldquo;It is sometimes very hard to shift from aggressive treatment to supportive care without feeling like we\u0026rsquo;ve given up.\u0026rdquo; \u0026mdash; Physician\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026ldquo;Limitation of care means seeking what is right for the child, not just what is medically possible.\u0026rdquo; \u0026mdash; Nurse\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026ldquo;Talking about the death of a newborn to parents is a violence\u0026mdash;for them and for us.\u0026rdquo; \u0026mdash; Pediatrician\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026ldquo;The palliative care team is a valuable support, but it should be more integrated.\u0026rdquo; \u0026mdash; Nurse\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026ldquo;I think we also need regular psychological support. Deaths leave their mark.\u0026rdquo; \u0026mdash; Nurse\u003c/strong\u003e\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eOur study confirms that neonatal palliative care (PPC) is both an ethically sensitive and emotionally taxing field, requiring robust institutional support, interdisciplinary dialogue, and targeted training. The five key themes we identified reflect concerns deeply rooted in the international literature.\u003c/p\u003e\u003cp\u003e\u003cb\u003e1. Moral Distress and Compassion Fatigue\u003c/b\u003e\u003c/p\u003e\u003cp\u003eMany respondents conveyed emotional exhaustion. Moral distress remains a core concern in neonatal intensive care, particularly when professionals face value conflicts and constrained decision-making. As pointed by Prentice et al., moral distress arises when clinicians are unable to act according to their ethical convictions\u0026mdash;typically due to institutional barriers, team disagreements, or family expectations (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Key triggers include the provision of care perceived as non-beneficial, lack of consensus on treatment goals, and inadequate communication processes. Nurses in particular have been shown to report higher levels of moral distress than physicians, often linked to their proximity to the infant and family and their limited decision-making authority (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). This aligns with our findings, where bedside caregivers reported emotional symptoms such as helplessness and sadness. The literature also describes long-term consequences, including burnout, team dysfunction, and lingering moral residue. This is echoed by nurses who stated:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eThe death of a child is always difficult; it never becomes routine.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eOthers argue that neonatal nurses frequently experience compassion fatigue, particularly in units lacking structured psychological support (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). In our study, participants frequently requested ongoing debriefings, echoing the World Heath Organization (WHO) recommendation that PPC systems must care for professionals as well as patients (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003e2. Ethical Complexity of Limitation of Care\u003c/b\u003e\u003c/p\u003e\u003cp\u003e Respondents described limitation of care not as treatment withdrawal but as a decision in favor of the child\u0026rsquo;s best interests. As one respondent noted:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eLimitation of care means seeking what is right for the child, not just what is medically possible.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis viewpoint aligns with Wilkinson\u0026rsquo;s concept of the \u0026ldquo;grey zone,\u0026rdquo; where clinical decisions cannot rely solely on prognosis or survival data (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Instead, ethical discernment and interdisciplinary dialogue become essential. Bertaud et al. also advocate for anticipatory PPC involvement in such decisions (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003e3. Communication as a Core but Burdensome Competency\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe difficulty of dialoguing with families, especially when shifting from curative to palliative trajectories, emerged in nearly all responses. One pediatrician wrote:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eTalking about the death of a newborn to parents is a violence\u0026mdash;for them and for us.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eDe Vos et al. emphasize the emotional impact of such conversations on both clinicians and parents (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e). Silveira et al. found that hope\u0026mdash;even in palliative contexts\u0026mdash;is shaped by how information is conveyed, and by the cultural framing of illness and death (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). These insights stress the need for training in relational ethics and narrative communication, still lacking in most NICUs (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cb\u003e4. Team Cohesion and Interdisciplinary Challenges\u003c/b\u003e\u003c/p\u003e\u003cp\u003eDespite the existence of a PPC reference team (CRSPP), responses highlighted inconsistencies in how and when they are involved. Some felt well-supported, while others experienced team fragmentation and decision-making silos. The WHO 2023 underscores that palliative care must be fully integrated from the prenatal period and embedded in institutional practice\u0026mdash;not episodic (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eQuotes such as:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eThe palliative care team is a valuable support, but it should be more integrated.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003ereveal that perceived utility of PPC teams depends on clear referral pathways, role clarification, and shared goals.\u003c/p\u003e\u003cp\u003e\u003cb\u003e5. Need for Training, Support and Institutional Culture Change\u003c/b\u003e\u003c/p\u003e\u003cp\u003eAlmost all respondents called for regular education and reflective spaces. As noted by Koliouli et al., PPC in neonatology is often introduced late and lacks standardization, contributing to role ambiguity and ethical distress (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Cultural sensitivity is also key, as Betremieux et al. pointed out in their review of PPC across multicultural settings (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eA nurse noted:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eI think we also need regular psychological support. Deaths leave their mark.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis aligns with McCarthy et al., who argued for palliative strategies that not only improve patient quality of life but reduce caregiver burnout (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e\u003cp\u003eIn addition to the five core themes, our data also revealed a \u003cb\u003esecondary but significant theme related to intra-team divergence and interprofessional tensions\u003c/b\u003e. Several respondents expressed difficulty navigating situations where the care team lacked consensus about palliative approaches:\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"It is sometimes difficult to reach agreement, especially when some still believe that cure is always possible.\" (nurse)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"The physician proposes a limitation of care, but some nurses or care assistants do not agree, and that creates tension.\" (nurse)\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"What burdens me is when we are not aligned within the team\u0026mdash;it makes decisions heavier and slower.\" (Pediatrician)\u003c/em\u003e\u003c/p\u003e\u003cp\u003eThese insights point to the emotional weight carried by professionals when facing ethical ambiguity without team unity. This aligns with Wilkinson, who notes that decision-making becomes ethically complex when there are divergent perceptions of what constitutes the child's best interest (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Prentice et al. describe this as a moral residue\u0026mdash;when clinicians feel unresolved about decisions made without adequate consensus (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Nurses reported higher levels of moral distress compared to physicians.\u003c/p\u003e\u003cp\u003eThe findings underscore the necessity for structured team discussions and consistent interdisciplinary ethics support. Respondents suggested:\u003c/p\u003e\u003cp\u003e\u003cem\u003e\"Team meetings should be mandatory when a decision about palliative care is being considered. Too often, not everyone is present or listened to.\" (NICU midwife)\u003c/em\u003e\u003c/p\u003e\u003cp\u003eSuch suggestions reflect a demand for procedural clarity and emotional containment within teams navigating neonatal end-of-life decisions.\u003c/p\u003e\u003cp\u003eAnother factor potentially affecting the coherence of care and decision-making is the high proportion of part-time staff (n\u0026thinsp;=\u0026thinsp;14 out of 26 responders). This workforce dynamic may hinder consistent communication and shared understanding within the NICU team, especially during ethically challenging situations or end-of-life planning (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Discontinuity in staffing can lead to fragmented care and make it more difficult to establish a unified palliative approach. To address this, the implementation of structured interdisciplinary handovers, dedicated PPC briefings, and shared digital communication tools may help ensure continuity and alignment among professionals despite variable work schedules.\u003c/p\u003e\u003cp\u003eThis additional theme enriches our understanding of PPC practice in NICUs, where staff must balance not only family-centered care but also internal professional dynamics that shape the care trajectory.\u003c/p\u003e\u003cp\u003eFurthemore, Currie et al. underscores the critical need for earlier integration of pediatric palliative care (PPC) in children with chronic complex conditions (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Their findings revealed that most children received PPC consultations only in the final days of life, often too late to meaningfully influence the trajectory of care. This aligns with concerns expressed by respondents in our NICU survey regarding delays in PPC involvement and limited anticipatory planning. They call for proactive identification and earlier engagement supports our recommendation to implement clear referral pathways and empower frontline NICU staff through training (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). The importance of early palliative care integration is also supported by Deming et al., who analyzed NICU care for infants with complex chronic conditions (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e). Their study found that despite poor prognoses, infants frequently received prolonged, high-intensity interventions such as ventilation and surgeries, often until death. Boss et al. expand the scope of neonatal palliative care by advocating for its application beyond acute NICU care to include support for NICU survivors living with chronic critical illness (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). These infants, often reliant on complex technologies and prone to repeated hospitalizations, represent a growing and underserved population. They argue that PPC should be integrated longitudinally, continuing after discharge to address enduring family strain and fragmented care.\u003c/p\u003e\u003cp\u003eAkyempon and Aladangady also advocate for a structured neonatal and perinatal palliative care pathway grounded in a parallel planning model (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e). Their approach emphasizes early family engagement, sociocultural sensitivity, and interdisciplinary coordination\u0026mdash;elements that resonate with the needs expressed in our own study. By providing operational tools adaptable even in the absence of specialist teams, this model offers practical strategies that NICUs can adopt to bridge care gaps.\u003c/p\u003e\u003cp\u003eThe work of Bertaud et al. also adds depth to this discussion, proposing a tiered PPC framework that accommodates the diversity of clinical needs (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Their model mirrors the heterogeneity observed in our respondents\u0026rsquo; experiences\u0026mdash;where some staff felt adequately supported while others highlighted coordination challenges. The emphasis on early and routine PPC involvement aligns with our findings and supports a system-level approach to minimizing moral distress.\u003c/p\u003e\u003cp\u003ePPC in the NICU must evolve from a reactive service into a foundational element of neonatal care. This perspective echoes the concerns of our participants regarding limited post-discharge planning and emotional exhaustion, suggesting that PPC should serve as a long-term support structure rather than a late-stage intervention.\u003c/p\u003e\u003cp\u003e The recent studies and our own data converge not only on the necessity for anticipatory planning, but also an interdisciplinary ethics support, and a cultural shift toward integrating PPC principles into everyday NICU practice.\u003c/p\u003e\n\u003ch3\u003eRecommendations to Address Identified Challenges\u003c/h3\u003e\n\u003cp\u003eA working session with the PPC team and some representative members of the neonatology unit tried to identify some practical ways of responding to the difficulties expressed in the questionnaire. These recommendations are listed in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003ePractical Recommendations to Address Identified Challenges\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"4\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003eChallenge\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eRecommendations\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003eTeam moral distress and compassion fatigue\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eDebriefing sessions, psychological support groups, resilience training, institutional recognition.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003eCommunication with families\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eTraining in communication, mediator support, structured tools for family meetings.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003eEnd-of-life decision-making\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eWritten protocols, ethics consultation, clear role definitions.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003eIntra-team divergence\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eScheduled interdisciplinary meetings, ethics workshops, PPC liaison roles.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e\u003cp\u003eIntegration of PPC in NICU\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eOnboarding PPC training, coordination with mobile PPC teams, institutional integration.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\n\u003ch3\u003eStrengths and Weaknesses of NICU PPC Practice Compared to Literature\u003c/h3\u003e\n\u003cp\u003eThe qualitative survey revealed several key strengths within the NICU's current approach to pediatric palliative care. Most respondents defined PPC as a global, comfort-oriented, and family-centered process, indicating that palliative philosophy is not limited to end-of-life care. This aligns with WHO recommendations and current literature emphasizing early integration of PPC (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Another significant asset was the presence of a dedicated PPC team, seen by staff as a valuable source of ethical support. Such organizational structures are widely recommended in international guidelines (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Staff also showed a strong humanistic ethos, citing empathy, dignity, and listening as core values.\u003c/p\u003e\u003cp\u003eHowever, notable gaps persist. The use of the CRSPP remains inconsistent, and decisions about end-of-life care are often made without formal protocols or systematic interdisciplinary meetings. This lack of structured processes may contribute to divergent views within the care team-a theme echoed in participant comments and well-documented in the literature (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Respondents expressed moral distress when facing such divergences, underscoring the need for ethical mediation and leadership clarity.\u003c/p\u003e\u003cp\u003eTraining deficits were also identified: many respondents requested support in delivering bad news, managing cultural diversity, and regulating emotional fatigue. These align with findings from Chin et al and McCarthy et al. which show that insufficient communication training is a major barrier to effective PPC (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). Although informal debriefings are in place, a structured burnout prevention strategy is lacking.\u003c/p\u003e\u003cp\u003eLastly, the 28% response rate raises concern about the general engagement of staff with the topic of PPC. The low participation could indicate time constraints or emotional discomfort with end-of-life themes\u0026mdash;a phenomenon also noted by Koliouli et al. (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e).\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eStudy Limitations and future\u003c/h2\u003e\u003cp\u003eThis study has several limitations. First, the response rate was 28.6% (26/91), which may reflect non-response bias ; those more engaged or affected by palliative care practices might have been more inclined to respond. Second, the research was conducted in a single Belgian NICU, which limits generalizability to other contexts, particularly in different cultural or institutional environments.\u003c/p\u003e\u003cp\u003eAdditionally, since the survey was voluntary and anonymous, there may be self-selection bias and no opportunity to follow up with participants to clarify or deepen their responses. Furthermore, the qualitative analysis of open-ended responses introduces potential interpretative bias, although efforts were made to align themes with established literature.\u003c/p\u003e\u003cp\u003eThe study did not stratify responses by years of experience or by hierarchical role, which might have revealed important differences in perspective\u0026mdash;for example, perceptions of intra-team conflict or communication difficulty may vary across seniority levels. Similarly, views on palliative decision-making processes could differ between nurses and physicians, which this study could not explore in depth.\u003c/p\u003e\u003cp\u003eLastly, only staff perspectives were analyzed; the absence of parental or family viewpoints limits the holistic understanding of palliative care dynamics in this setting. Including families\u0026rsquo; experiences in future work would provide a more balanced view of the challenges and values guiding neonatal palliative care.\u003c/p\u003e\u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eNICU professionals face complex moral, emotional, and organizational challenges when implementing pediatric palliative care. This qualitative study confirms the need for better and earlier integration of PPC teams. Structured training and psychological support mechanisms are essential to enhance both care quality and staff resilience. The establishment of a shared, anticipatory, and coherent palliative care culture is essential within neonatal care units.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003ePPC \u0026nbsp; \u0026nbsp; \u0026nbsp; Pediatric palliative care\u003c/p\u003e\n\u003cp\u003eCRSPP \u0026nbsp;Pediatric palliative care reference center\u003c/p\u003e\n\u003cp\u003eNICU \u0026nbsp; \u0026nbsp; Neonatal intensive care unit\u003c/p\u003e\n\u003cp\u003eWHO \u0026nbsp; \u0026nbsp; World health organization\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthic approval\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was conducted in accordance with the ethical standards of our institutional research committee. As the study was based on anonymous responses to an internal qualitative questionnaire among staff and did not involve patient data, formal ethics approval was not required under Belgian legislation and was not requested. Participation was voluntary, and informed consent was implied by completion of the questionnaire. The study did not involve experiments on humans or use of human tissue samples.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets used and analyzed during the current study are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interest\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003cbr\u003e\u0026nbsp;This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors’contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBB and BDT designed and developped the study. BB, ML, BDT and CH conducted the study in the NICU. BB and ML conducted data analysis and interpretation and drafted the manuscript. BDT, DB, NC, CH reviewed and revised the manuscript. All authors read and approved the final version of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors thank all NICU staff members who participated in the survey and contributed their reflections to this study. They also wish to express their gratitude to the CRSPP team for their longstanding commitment and support of children and families facing life-limiting conditions.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors’information\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e1\u003c/sup\u003eDivision of Paediatric Oncology and Haematology, Cliniques Universitaires Saint Luc, Université Catholique de Louvain, 10, avenue Hippocrate, 1200 Brussels, Belgium.\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e2\u003c/sup\u003ePediatric Palliative Care Reference Center, Cliniques Universitaires Saint Luc, Université Catholique de Louvain, 10, avenue Hippocrate, 1200 Brussels, Belgium.\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e3\u003c/sup\u003eDivision of Neonatology, Cliniques Universitaires Saint Luc, Université Catholique de Louvain, 10, avenue Hippocrate, 1200 Brussels, Belgium.\u003c/p\u003e\n\u003cp\u003e\u003csup\u003e4\u003c/sup\u003eDivision of Paediatric Neurology, Cliniques Universitaires Saint Luc, Université Catholique de Louvain, 10, avenue Hippocrate, 1200 Brussels, Belgium.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eStatbel, Statistics Belgium, Brussels S. 2023 [cited 2025 Jul 28]. 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BMJ Paediatr Open. 2021;5(1):e000820. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1136/bmjpo-2020-000820\u003c/span\u003e\u003cspan address=\"10.1136/bmjpo-2020-000820\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBoss RD. Palliative care for NICU survivors with chronic critical illness: A missing layer of support. Semin Fetal Neonatal Med. 2023;28:101502.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBoss RD, Mercurio MR, Operationalizing Neonatal Palliative Care. 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Obstet Gynecol. 2019;134(3):e84\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-palliative-care","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pcar","sideBox":"Learn more about [BMC Palliative Care](http://bmcpalliatcare.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pcar/default.aspx","title":"BMC Palliative Care","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Neonatal Intensive Care Unit, Pediatric Palliative Care, Qualitative Research, Moral Distress, Interdisciplinary Communication","lastPublishedDoi":"10.21203/rs.3.rs-7298959/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7298959/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003e Pediatric palliative care (PPC) in neonatal intensive care units (NICUs) presents ethical and emotional challenges for healthcare professionals. This study explores perceptions, experiences, and needs of NICU staff concerning PPC in the context of implementing collaboration with a pediatric palliative care reference center (CRSPP).\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eA qualitative descriptive study using a semi-structured questionnaire was conducted among NICU professionals. Among 91 staff, 26 complete responses were thematically analyzed. Results were compared with international literature.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eRespondents highlighted emotional distress, communication challenges, need for ethical guidance, training gaps, and a desire for stronger integration of PPC teams. The collaboration with CRSPP was perceived as helpful by many, although underutilized by some.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eNICU professionals face significant moral and emotional burdens in PPC. Strengthening training, team cohesion, and early PPC integration can improve care quality and staff well-being.\u003c/p\u003e","manuscriptTitle":"Perceptions and Needs of NICU Professionals Regarding Pediatric Palliative Care: A Qualitative Study Compared with International Literature","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-08-27 06:22:14","doi":"10.21203/rs.3.rs-7298959/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-09-02T14:20:03+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-01T21:49:03+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-01T12:43:34+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-09-01T09:11:11+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"311831860235484741077241394222979351640","date":"2025-08-26T18:18:55+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"237963850755291944108914741221591401336","date":"2025-08-18T16:09:16+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"95163566966757614027100901247186324676","date":"2025-08-18T13:02:22+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"159464310513774956220041440200560582815","date":"2025-08-18T11:40:11+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"274836340707566538604260557369075858908","date":"2025-08-17T13:33:04+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-08-17T11:00:43+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-08-08T11:58:00+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-08-08T11:46:58+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Palliative Care","date":"2025-08-08T11:44:06+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-palliative-care","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pcar","sideBox":"Learn more about [BMC Palliative Care](http://bmcpalliatcare.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pcar/default.aspx","title":"BMC Palliative Care","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"fad8d855-6587-40e6-a3f9-818f9bb55e1c","owner":[],"postedDate":"August 27th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-10-20T16:10:35+00:00","versionOfRecord":{"articleIdentity":"rs-7298959","link":"https://doi.org/10.1186/s12904-025-01900-5","journal":{"identity":"bmc-palliative-care","isVorOnly":false,"title":"BMC Palliative Care"},"publishedOn":"2025-10-15 15:58:42","publishedOnDateReadable":"October 15th, 2025"},"versionCreatedAt":"2025-08-27 06:22:14","video":"","vorDoi":"10.1186/s12904-025-01900-5","vorDoiUrl":"https://doi.org/10.1186/s12904-025-01900-5","workflowStages":[]},"version":"v1","identity":"rs-7298959","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7298959","identity":"rs-7298959","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}