Neonatal palliative care

BACKGROUND: Extreme prematurity (birth before before 26 weeks of gestation), presents complex challenges and can lead to various complications. Survival rates of extremely preterm infants are lower in France than in other countries. The choice between active and palliative care is decisive in managing these births. OBJECTIVE: To conduct an observational study focused on factors associated with perinatal management, mortality, and morbidity outcomes among extremely preterm births in a regional perinatal network...

The first palliative care services were started in Uganda 30 years ago with services continuing to develop since then. The Ministry of Health and the Palliative Care Association of Uganda have played key roles in the development of paediatric palliative care in the country. There are a range of paediatric palliative care service providers in Uganda, and these have developed alongside educational programmes and research in PPC. Care is provided across the Uganda health system and across the age range from neonates through to adolescents and young adults...

OBJECTIVE: The aim of this study was to investigate variations in mortality before neonatal intensive care unit (NICU) discharge of infants born preterm with intraparenchymal haemorrhage (IPH) in Europe with a special interest for withdrawing life-sustaining therapy (WLST). DESIGN: Secondary analysis of the Effective Perinatal Intensive Care in Europe (EPICE) cohort, 2011-2012. SETTING: Nineteen regions in 11 European countries. PATIENTS: All infants born between 24+0 and 31+6 weeks' gestational age (GA) with a diagnosis of IPH...

A male infant, aged 6 days, was admitted to the hospital due to respiratory distress and systemic desquamative rash after birth. The infant presented with erythema and desquamative rash, respiratory failure, recurrent infections, chronic diarrhea, hypernatremic dehydration, and growth retardation. Comprehensive treatment, including anti-infection therapy, intravenous immunoglobulin administration, and skin care, resulted in improvement of the rash, but recurrent infections persisted. Second-generation sequencing revealed a homozygous mutation in the SPINK5 gene, consistent with the pathogenic variation of Netherton syndrome...

Neonatal palliative care is a specialized area within children's palliative care, which focusses on the needs of infants with life-limiting or life-threatening conditions. Nearly one quarter of global neonatal deaths occur in India, where neonatal palliative care evidence is limited. This study describes the development and implementation of a neonatal palliative care program within a neonatal intensive care unit (NICU) at a government hospital, describing the implementing an 8-month pilot palliative care program for neonates, including the patterns of care, and barriers and enablers of success...

Nurses in NICUs report insufficient education as a persistent barrier to providing quality neonatal palliative care (NPC). Since existing literature on educational interventions in NPC is limited, this review aimed to identify and narratively synthesize literature both about nurses' attitudes toward NPC and the NPC education received by nurses. We conducted a nonsystematic narrative literature review. Four themes were identified from the 28 articles included in this review. These were as follows: (a) nursing work in NPC, (b) NICU nurses' experiences and perceptions of NPC, (c) facilitators and barriers to nursing work in NPC, and (d) educational interventions in NPC...

Patent ductus arteriosus stenting (PDAS) for ductal-dependent pulmonary blood flow (DDPBF) provides a new paradigm for managing neonates with single ventricles (SV). Currently, sparse data exist regarding outcomes for subsequent palliation. We describe our experience with inter-stage care and stage 2 (S2P) conversion with PDAS in comparison to a prior era of patients who received surgical aorto-pulmonary shunts (APS). Retrospective review of 18 consecutive DDPBF SV patients treated with PDAS between 2016 and 2021 was done and compared with 9 who underwent APS from 2010 to 2016...

INTRODUCTION: The death of a child may be the most traumatic event a family can experience. Bereavement care for parents is essential for their physical and mental well-being and is a psychosocial standard of care. Childhood mortality is higher in low- or middle-income countries (LMICs); however, little is known regarding bereavement support or interventions for parents in LMICs. AIM: To identify programs, services, initiatives, or interventions offered to bereaved parents in LMICs in hospital settings...

BACKGROUND: Although the concepts of uncertainty and anticipated loss have been explored in a variety of contexts, advances in genetic testing and life-sustaining technology rendered changes in the care of medically complex infants. The separate concepts no longer have the descriptive power to clarify new phenomena endured by parents in the changing neonatal landscape. A current concept analysis examining uncertainty in anticipated loss is necessary to generate knowledge concurrently with deviations observed in the neonatal intensive care unit...

BACKGROUND AND PURPOSE: Management strategies for children with congenital health diseases (CHDs) should encompass more than just the medical aspect of the disease and consider how heart diseases affect their everyday activities and, subsequently, their quality of life (QoL). Global studies witnessed a greater emphasis on studying the QoL associated with CHD. However, there is still a great lag in such data in the Arab region. The purpose of this study was to evaluate QoL in children with CHD using an Arab sample from Jordan...

AIM: This study aimed to assess the impact of two educational modules on enhancing the communication confidence, competence and performance of perinatal nurses in the context of palliative care. BACKGROUND: Concerns have arisen regarding the preparedness of perinatal nurses in delivering palliative care, especially in terms of deficiencies in communication skills and negative attitudes toward making life-support decisions for parents facing neonates with terminal conditions...

AIM: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. METHODS: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included...

Gene editing of the porcine genome has enabled the production of pigs that do not express the three known carbohydrate antigens that are associated with hyperacute rejection of a pig organ xenotransplant. In addition, it is now possible to insert a variety of human transgenes to protect against the human immune response, e.g., to protect from complement and coagulation activation. As a result, cardiac xenotransplantation of the gene-edited porcine heart is progressing towards clinical application. Many hope that it will definitively address the disparity between organ supply and demand...

Although there are known disparities in neonatal and perinatal deaths across cultural groups, less is known about how cultural diversity impacts neonatal palliative care. This article critically reviews available literature and sets out key questions that need to be addressed to enhance neonatal palliative care provision for culturally diverse families. We begin by critically reviewing the challenges to recording, categorizing and understanding data which need to be addressed to enable a true reflection of the health disparities in neonatal mortality...

OBJECTIVE: To describe the experiences of nurses as they learned to provide palliative care in the NICU. DESIGN: Interpretive description. SETTING: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. PARTICIPANTS: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. METHODS: We collected data using online interviews that we recorded and transcribed...

BACKGROUND/OBJECTIVES: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation. DESIGN: Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors...

This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases (PubMed, Cochrane, CINAHL, Research Information Sharing Service, and Korean Studies Information Service System) were searched to identify relevant articles published between 2011 and 2020. From the systematic search and review process, 13 studies that met the eligibility criteria were selected for the analysis...

BACKGROUND: Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units...

BACKGROUND: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, survival, acceptance and peaceful death. OBJECTIVE: To map scientific evidence on parents' hope in perinatal and neonatal palliative care contexts. METHOD: a scoping review theoretically grounded on Dufault and Martocchio's Framework, following the Joanna Briggs Institute methodological recommendations...

INTRODUCTION: The management of pregnant women at risk of preterm delivery poses a challenge to the interdisciplinary team. At the edge of viability, it is crucial to take into consideration maternal and fetal risk factors when determining individual counseling and therapeutic approaches. METHODS: At a level 4 perinatal center, all preterm infants (PI) born in the years 2017 to 2020 who had a gestational age between 230/7 and 246/7 weeks and were cared for with a curative therapeutic approach were enrolled in a retrospective observational study...