Search Results (21)

Background: Live music, understood as real-time musical performance delivered in the physical presence of patients or other participants, is increasingly incorporated into healthcare settings as an arts-based, non-pharmacological practice intended to support well-being and humanize care. While previous reviews have examined a broad range of music-based interventions in healthcare, limited attention has been given specifically to live music, its contextual characteristics, and the values attributed to its use within hospital environments. Objectives: This scoping review aims to map and synthesize the literature on live music in healthcare settings, focusing on clinical contexts, populations involved, and the therapeutic, psychosocial, and environmental values reported. Methods: A scoping review was conducted following the framework of Arksey and O’Malley. Searches were performed in Web of Science, Scopus and Pubmed using terms related to live music and healthcare settings. Studies published in English or Spanish over the past 20 years were considered. After screening titles, abstracts, and full texts, 81 studies met the inclusion criteria. Results: The studies covered diverse hospital units and patient groups, particularly oncology, neonatal and intensive care, palliative care, and haemodialysis. Reported outcomes were mainly psychological and emotional, including reductions in anxiety, stress, and distress, alongside improvements in mood, well-being, and quality of life. Cognitive, physiological, and environmental benefits were also identified, emphasizing the role of live music in creating supportive and humanized care environments. Most studies were conducted in Europe and North America. Conclusions: Live music is widely implemented in healthcare settings and is associated with benefits extending beyond symptom reduction to experiential and humanizing dimensions of care. This scoping review provides an overview of the existing evidence base and identifies directions for future research in arts and health. Full article

Background: Perinatal death in Neonatal Intensive Care Units (NICUs) represents one of the most emotionally challenging experiences for nurses. While parental bereavement has been widely studied, nurses’ experiences in neonatal end-of-life care remain insufficiently explored. Objective: To explore the experiences of NICU nurses facing perinatal death, focusing on emotional, professional, and institutional dimensions of care. Methods: A qualitative study with a hermeneutic phenomenological approach was conducted through ten semi-structured interviews with NICU nurses in a tertiary-level hospital in Spain. Data were analyzed using reflexive thematic analysis supported by NVivo 15. Results: Seven main themes were identified: emotional responses, therapeutic bond, coping strategies, perceived institutional support, training needs, infrastructure and humanization, and professional repercussions. Nurses reported intense emotional responses, including sadness, guilt, moral distress, and perceived failure, particularly in cases of prolonged hospitalization or unexpected death. Peer support emerged as a key protective factor, whereas the lack of formal psychological support and adequate infrastructural conditions were identified as significant gaps. Conclusions: Strengthening institutional support for NICU nurses through structured debriefing, accessible psychological services, targeted training in neonatal palliative care, and improved care environments may enhance their well-being and resilience, contributing to sustainable and compassionate clinical practice. Full article

Objectives: To report the outcomes of a population of fetuses and neonates with life-limiting (LL) or life-threatening (LT) diagnoses leading to adverse prognoses cared for by a service of perinatal palliative care (PPC), the Percorso Giacomo (PG). Study design: This is a single center retrospective cohort study of all fetuses and neonates prenatally or postnatally diagnosed with LL or LT conditions whose families opted to continue the pregnancy at IRCCS Policlinico di Sant’Orsola in Bologna, Italy, from 2013 to 2025. Results: There were 83 fetuses and/or neonates including 64 diagnosed prenatally and 19 postnatally with annual significant increments in number. All families encountered the PG team. Overall, the cohort demonstrated a very high cumulative rate of comfort care plan (90%) with high rate of redirection of goals of care from intensive to palliative. Conclusions: PG showed a significant growth over 13 years suggesting the strong need of a service of PPC. The continuity of care provided by PG facilitated parental decision-making process towards redirection of goals of care. The outcomes observed provided valuable insights related to the wide range of prognoses for each diagnosis that will enable more informed counseling in the future. Full article

Each year, many neonates are born with genetic diagnoses that carry a range of prognoses. As the types and availability of genetic testing have expanded, neonatal intensive care units (NICUs) have served as “launching points” for their clinical application. Broad genetic testing has both improved diagnostic precision and expanded uncertainty. Genetic information may be explicitly uncertain, as in the case of a variant of unknown significance (VUS). But it is also frequently uncertain whether/how the information relates to a patient’s phenotype or what it may mean for a child’s future. Even without ambiguity in the diagnosis or prognosis, the significance within a clinical and familial context may be less certain. Applying the information to clinical care is complex and may engender confusion among clinicians and families as readily as it offers guidance. Since genetic testing results can impact management and, at times, end-of-life decisions, misunderstanding and misapplication of genetic results pose a significant risk. We describe a hypothetical case of an infant with congenital hypotonia and respiratory failure. The family, after discussions with the care team about medically appropriate care paths, is navigating goals of care and considering tracheostomy placement for chronic mechanical ventilation. They consent to rapid genome sequencing in hopes of better understanding the etiology and severity of the neuromuscular condition. We explore three possible scenarios following different genomic results. With each, we discuss how the results may impact decision-making about the best plan of care. We propose a framework for navigating discussions about genetic testing results with families of critically ill children. We illustrate the importance of a multidisciplinary approach with collaboration between neonatology, genetics, and palliative care. By employing the strengths of each subspecialty, providers can manage the inherent uncertainty in genetic testing results, help determine the meaning of the results to the family in the context of their child’s medical care, and enhance the care and support of critically ill neonates and their families. Full article

Background/objectives: High-quality pediatric critical care includes supporting children nearing the end-of-life (EOL) and their families. Cataloging existing interventions for children dying in the neonatal or pediatric intensive care unit (NICU, PICU) establishes critical areas for future research. In this scoping review, we evaluated characteristics of PICU EOL interventions. Methods: A librarian guided a search of OVID Medline, CINAHL, OVID PsycINFO, OVID Embase, Cochrane Central, and Web of Science, plus backwards and forwards reference searching. We included interprofessional interventions, defined as any systematic change (e.g., educational programs, symptom management, electronic medical record, etc.), for children dying from any cause. Studies were independently screened by two reviewers. Data were extracted by one team member and reviewed by a second. We extracted intervention elements, contextual factors, implementation barriers/facilitators, and generated frequencies from qualitative coding. Results: Of 11,643 screened articles, 44 met the inclusion criteria. Most were in neonatal ICUs (n = 28/44, 64%) and general PICUs (n = 10/44, 23%). Most interventions aimed to improve clinician knowledge (25/44, 57%), augment clinical structures and processes (n = 11/44, 25%), or enhance communication (n = 8/44, 18%). Common delivery methods included clinical practice changes (n = 25/44, 57%; e.g., protocols, order sets [n = 12]), and educational sessions (n = 20/44, 45%). Outcomes included clinician knowledge (n = 17/44, 39%), qualitative feedback (n = 18/44, 41%), feasibility/acceptability (n = 12/44, 27%), or treatment utilization (n = 11/44, 25%). Few examined families’ mental health (n = 3, 7%) or bereavement (n = 2, 5%). Few reported implementation facilitators or barriers. Conclusions: Most included studies targeted clinician outcomes through education. Designing, testing, and implementing interventions focused on family outcomes is a critical next step. Full article

Pediatric palliative care (PPC) aims to enhance the quality of life of children with life-limiting conditions and their families through individualized, interdisciplinary support. Among this population, children with neurological diseases represent a substantial and growing group, often facing prolonged disease courses, cognitive impairment, and high prognostic uncertainty. Effective communication is central to PPC; however, it remains deeply influenced by cultural, religious, and spiritual frameworks that shape family perceptions of illness, suffering, and decision-making. This narrative review explores communication strategies in PPC, with a specific focus on children with neurological conditions, highlighting conceptual foundations, cross-cultural variations, and emerging best practices. Key findings highlight the importance of culturally humble approaches, family-centered communication models, and structured tools, such as co-designed advance care planning and dignity therapy, to enhance communication. Additionally, the review highlights the presence of ethical and interdisciplinary challenges, particularly in neonatal and neurology settings, where misaligned team messaging and institutional hesitancy may compromise trust and timely referral to palliative care. Future research, policy, and clinical education priorities should advocate for models that are inclusive, ethically grounded, and tailored to the unique trajectories of neurologically ill children. Integrating cultural competence, team alignment, and family voices is essential for delivering equitable and compassionate PPC across diverse care settings. Full article

Objectives: In the neonatal period, 25% of cases with critical congenital heart disease (CCHD) require surgical or interventional palliative and corrective procedures. Prenatal diagnosis and timely intervention can positively impact neonatal mortality and morbidity. This study evaluated the effects of perinatal follow-up on the management of CCHD. Methods: The study was conducted on term neonates diagnosed with CCHD, who were monitored in the neonatology and pediatric cardiac intensive care unit between 1 January 2023 and 1 January 2024. The cases were categorized into CCHD with prenatal follow-up (Group I), CCHD born without follow-up at our hospital (Group II), and CCHD accepted from external centers (Group III). Neonatal mortality and morbidity outcomes of these cases that underwent surgical or interventional procedures were statistically evaluated. Results: During the study period, there were 280 neonatal cases (50% male). Among these cases, 30% were in Group I (n = 84), 20% in Group II (n = 56), and 50% in Group III (n = 140). The cesarean section rate was higher in Group I compared to the other groups (80% vs. 52% vs. 45%), and the preoperative lactate levels were lower (0.9 vs. 1.7 vs. 2.1). The anatomical diagnoses, ventricular physiology, operation time, and interventional procedure time were similar. After interventional or surgical procedures, morbidity (22% vs. 25% vs. 36%) and mortality rates (6% vs. 9% vs. 18%) were lower in Group I and Group II compared to Group III. Conclusions: All infants diagnosed with CCHD before birth should be delivered in a tertiary heart center, which positively contributes to neonatal mortality and morbidity. More effort is needed to improve prenatal screening programs. Full article

Background and Clinical Significance: Twin pregnancies are associated with an increased risk of congenital malformations. One of them is rare but lethal—acrania—which belongs to the group of neural tube defects. The pathogenesis of acrania is not fully understood. It is presumed that the underlying mechanism of its development is a disorder of migration of mesenchymal tissue. The presence of an acrania in one of the twins may lead to complications such as polyhydramnios, preterm labor, or, in severe cases, an intrauterine death in one or both twins. Case Presentation: A 30-year-old woman (G4P4) was admitted to the Labor Department of a tertiary hospital in 30+3 weeks due to preterm labor. The patient was in a dichorionic diamniotic twin pregnancy with a single lethal fetal anomaly and severe polyhydramnios of a second twin. Hence, the caesarean section was immediately performed. Both twins were admitted to the Neonatology Department. The healthy neonate was hospitalized and discharged after 42 days in good condition. Palliative care for the twin with acrania was provided. Conclusions: Early detection of acrania in twin pregnancies is critical. It allows the implementation of appropriate management and targeted counseling, thereby minimizing the risk of complications both for unaffected twins and the mothers. Our case is a good model of action where a twin pregnancy with a diagnosed lethal defect in an ambulatory setting was managed, providing holistic specialized care. Full article

Genetic testing is rapidly becoming standard practice in the care of critically ill newborns within NICUs. Numerous studies have demonstrated the utility of genetic testing, including changes in clinical care, improved diagnostic certainty, and cost savings, related to a reduced length of hospital stay. Changes in clinical management reported in previous studies also included redirection to comfort or end-of-life care. However, it has been difficult to study the influence of genetic testing in the redirection of care decisions within the NICU because of the complexity of the medical decision-making process. Redirection of care decisions are deeply personal for each individual family and often must be made in the setting of clinical instability and diagnostic and prognostic uncertainty. A recent study exploring the impact of genetic testing in redirection of care decisions by surveying palliative care providers suggested genetic testing plays a minor role in decisions to redirect to end-of-life care or in the implementation of DNR/DNI orders. However, factors such inadequate treatment options were found to be important in redirection of care decisions, implying the need for further investigation to clarify the role of genetic testing. Future studies will need to focus on how genetic information affects healthcare provider recommendations regarding palliative care and how families use this information to make end-of-life care decisions. Full article

Background: Caring for children in palliative care especially impacts healthcare professionals’ personal and professional lives. Their emotional experience and needs are frequently forgotten. Healthcare professionals face emotional demands when caring for children with palliative needs and their parents. Objective: This scoping review aims to identify and map the scientific production about the emotional labor of healthcare professionals in pediatric palliative care. Methods: This scoping review was conducted according to the JBI recommendations and the PRISMA Extension for Scoping Reviews. We searched 16 electronic databases in August 2023 and updated the search on 17 February 2025. Articles were screened according to eligibility criteria, and a content analysis allowed for a summary of key findings. Results: Eleven publications were selected. Most studies were conducted in the United States of America and with nurses as the professionals involved. Many publications were qualitative studies and developed in a neonatal intensive care context. Using content analysis, five themes were identified: (1) emotional experience of healthcare professionals, (2) relational context involved, (3) managing professional and personal boundaries, (4) intrapersonal strategies of emotional labor, and (5) social and organizational strategies of emotional labor. Conclusions: The importance of implementing emotional labor strategies is highlighted, especially intrapersonal, social, and organizational strategies. Education, training, and reflection are needed within a workplace culture that recognizes emotional experiences and supports the emotional management of healthcare professionals. Emotional labor in pediatric palliative care should be recognized. Further research in this area is needed. Full article

Introduction: Nurses and midwives caring for newborns with lethal defects experience significant emotional stress. Understanding coping strategies and the factors influencing stress is crucial for improving their well-being and ensuring high-quality care. Objectives: The aim of this study was to identify the coping strategies used by nurses and midwives in stressful situations and to analyse the relationship between stress levels and selected sociodemographic and professional factors. Methods: A cross-sectional study was conducted in the second quarter of 2023 among 307 nurses and midwives working in neonatal and obstetric wards in the Silesian metropolitan area, Poland. A diagnostic survey method was applied using a standardised questionnaire. The Perceived Stress Scale (PSS-10) and the MINI-COPE Inventory were used to assess stress levels and coping mechanisms. A stratified random sampling method was employed to ensure representation from various professional backgrounds. Data analysis was conducted using descriptive statistics, chi-square tests, Spearman’s correlation, and Cohen’s d coefficient, with statistical significance set at p < 0.05. Results: High stress levels were associated with shorter professional experience, frequent exposure to lethal defects, and emotional discomfort in interactions with grieving families. The most commonly used coping strategies were active coping (M = 2.06, SD = 0.635) and planning (M = 1.95, SD = 0.590), whereas self-blame (M = 1.20, SD = 0.714, p < 0.001) and denial (M = 0.88, SD = 0.751, p < 0.001) were linked to higher stress levels. Positive reinterpretation (r = −0.211, p < 0.001) and seeking emotional support (r = −0.129, p = 0.024) correlated with lower stress levels. Nurses and midwives with secondary education reported higher stress levels compared to those with higher education (χ²(10) = 30.651, p = 0.001). Work experience played a role, with moderate stress levels most frequently observed among those with 2–5 years of professional experience (χ²(14) = 24.023, p = 0.046). Emotional involvement, particularly supporting parents during their farewell to the child (69.1%), was identified as the most stressful aspect of their work. Conclusions: Promoting adaptive coping strategies, such as positive reinterpretation and emotional support, can help reduce stress and improve the well-being of nurses and midwives. Implementing psychological support programmes and stress management training is essential for maintaining high-quality neonatal care. Full article

Background/Objectives: Hypoxic-ischemic encephalopathy (HIE) in late preterm and term neonates accounts for neonatal mortality and unfavorable neurodevelopmental outcomes in survivors despite therapeutic hypothermia (TH) for neuroprotection. The circumstances of death in neonates with HIE, including involvement of neonatal palliative care (NPC) specialists and neurodevelopmental follow-up at 18–24 months in survivors, warrant further evaluation. Methods: A retrospective multicenter cohort study including neonates ≥ 35 weeks gestational age with moderate to severe HIE receiving TH, registered in the Swiss National Asphyxia and Cooling Register between 2011 and 2021. Neurodevelopmental follow-up at 18–24 months in survivors was assessed. The groups of survivors and deaths were compared regarding perinatal demographic and HIE data. Prognostic factors leading to redirection of care (ROC) were depicted. Results: A total of 137 neonates were included, with 23 (16.8%) deaths and 114 (83.2%) survivors. All but one death (95.7%) occurred after ROC, with death on a median of 3.5 (2–6) days of life. Severe encephalopathy was indicated by a Sarnat score of 3 on admission, seizures were more frequent, and blood lactate values were higher on postnatal days 1 to 4 in neonates who died. Lactate in worst blood gas analysis (unit-adjusted odds ratio 1.25, 95% CI 1.02–1.54, p = 0.0352) was the only variable independently associated with ROC. NPC specialists were involved in one case. Of 114 survivors, 88 (77.2%) had neurodevelopmental assessments, and 21 (23.9%) of those had unfavorable outcomes (moderate to severe disability). Conclusions: Death in neonates with moderate to severe HIE receiving TH almost exclusively occurred after ROC. Parents thus had to make critical decisions and accompany their neonate at end-of-life within the first week of life. Involvement of NPC specialists is encouraged in ROC so that there is continuity of care for the families whether the neonate survives or not. Full article

Gastroschisis is a congenital anomaly characterized by herniation of abdominal contents via a defect in the anterior abdominal wall. Gastroschisis can manifest as simple or complex, with additional complications such as atresia, perforation, ischemia, necrosis, or volvulus. While prenatal screening and advancements in surgical techniques have improved outcomes, infants with complex gastroschisis cases pose significant challenges in neonatal care. Vanishing gastroschisis, a rare but dreaded complication with a mortality rate ranging from 10 to 70%, occurs when the abdominal wall closes around the herniated bowel, leading to strangulation. We present a case report focusing on the management of neonatal gastroschisis in a 36-week-old female infant with vanishing gastroschisis. The infant’s clinical course, including surgical interventions, complications, and multidisciplinary management, is discussed in detail. This case underscores the importance of a multidisciplinary approach in optimizing outcomes for infants with complex gastroschisis. Via this case report, we aim to provide insights into the complexities of neonatal gastroschisis management and advocate for a collaborative approach involving neonatology, pediatric surgery, infectious disease, and palliative care to improve outcomes and quality of life for affected infants. Full article

(1) Background: Transposition of the great arteries (TGA) is the most common congenital heart disease, accounting for 5–7% of all cardiac anomalies, with a prevalence of 0.2–0.3 per 1000 live births. (2) Aim: Our main objectives were to evaluate the clinical safety of balloon atrial septostomy in neonates and the possible complications. Furthermore, we tried to establish whether the procedure should be performed in all TGA patients with small atrial septal defects, regardless of oxygen saturation, within a center where corrective surgery cannot be performed on an emergency basis due to the lack of a permanent cardiac surgery team for arterial switch surgery. (2) Methods: We conducted an observational, retrospective, single tertiary-care center study between January 2008 and April 2022, which included 92 neonates with TGA transferred to our institution for specialized treatment. (3) Results: The median age at the time of the Rashkind procedure was four days. The rate of immediate complications after balloon atrial septostomy (BAS) was high (34.3%), but most were transient (metabolic acidosis and arterial hypotension—21.8%). Twenty patients with TGA managed in our hospital underwent definitive and corrective surgical intervention (arterial switch operation) at a median age of 13 days. Most patients (82.6%) were term neonates, but 16 were born preterm. (4) Conclusions: Urgent balloon atrial septostomy is often the only solution to restore adequate systemic perfusion. Bedside balloon atrial septostomy is a safe, effective, and initial palliative intervention in neonates with TGA, which can be performed in the neonatal unit. Full article

When a severe diagnosis is made before or after birth, perinatal palliative care (PPC) can be provided to support the infant, parents and involved healthcare providers. An integrative and systematic overview of effectiveness and working components of existing PPC programs was needed. An integrative search was conducted in MEDLINE, Embase, CENTRAL, CINAHL, PsycInfo and Web of Science. Study designs examining the effect of PPC compared to regular care, and (empirical) articles describing the components of care included in existing PPC initiatives were included. Three independent authors reviewed titles, abstracts and full texts against eligibility criteria. PRISMA guidelines were followed; 21.893 records were identified; 69 publications met inclusion criteria. Twelve publications (17.4%) discussed the effect of a PPC program. Other publications concerned the description of PPC programs, most often by means of a program description (22/69; 31.9%), guidelines (14/769; 20.3%) or case study (10/69; 14.5%). Outcome measures envisioned four main target categories: care coordination, parents and family members, care for the fetus/neonate and healthcare providers. No trials exist to date. Analysis of working components revealed components related to changes directed to the policy of the hospital wards and components involving actual care being provided within the PPC program, directed to the fetus or infant, the family, involved healthcare providers or external actors. PPC is a growing research field where evidence consists mainly of descriptive studies and guidelines. The extensive list of possible PPC components can serve as a checklist for developing future initiatives worldwide. PPC includes several important actors: the fetus/infant and their family and included healthcare providers on both maternity and neonatal wards. This leads to a large variety of possible care components. However, while some studies show proof of concept, an evidence base to determine which components are actually effective is lacking. Full article