Background: When making end-of-life decisions for a child in the neonatal intensive care unit (NICU), standard practice is to involve parents in shared decision-making so that the values of parents are considered and decisions are made in the…
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue…
OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of…
Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns…
Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established.…
Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face…
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was…
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the…
Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were…
Having an infant diagnosed with a life-limiting condition is a stressful time for parents and has been shown to have an impact on parental mental health. Music Therapy, when provided by an HCPC registered Music Therapist with enhanced Neonatal…
This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death.…
Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of…
For the first time since he was born, we looked at our son as a baby who had withstood endless medical interventions. Rather than taking each new diagnosis in stride, we stopped to reflect. [...]
Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC…
Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in…
BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition,…
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations…
In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13…
In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and…
OBJECTIVE: To determine the prevalence of life support limitation (LSL) in patients who died after at least 24h of a pediatric intensive care unit (PICU) stay, parent participation and to describe how this type of care is delivered. METHODS:…
Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care.…
OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents
Background: Pediatric palliative care (PPC) does not meet current needs, particularly in low- and middle-income countries. Objective: We evaluated the first PPC team to serve patients with cancer in a tertiary children's hospital in China. Design:…
Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures…
BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative…
BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents…
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation…
PURPOSE: To characterise the care management trajectories of infants with life-limiting conditions, who died before 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from…
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one.…
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather…
OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a…
Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family's goals and values.…
BACKGROUND: Specialist palliative care (SPC) is often needed to manage complex or refractory problems in children with life-threatening conditions during end-of-life. This study explores the perceptions of healthcare professionals (HPs) to determine…
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families…
We aimed to identify characteristics associated with postdischarge health resource use in children without medical complexity who survived an episode of prolonged mechanical ventilation for respiratory illness. We hypothesized that longer durations…
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty.…
