Browse Items (672 total)

BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment…

BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed…

Objective: This study aimed to evaluate the quality of the care provided to newborns at End-of-Life (EOL) stages and compare the care which is already being given to the infants admitted to the NICUs of the selected hospital in (XXX) with the…

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.…

BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW,

Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents'…

IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children…

AIMS AND OBJECTIVES: To describe the health challenge for mothers whose infants have died and approaches and resources they used to manage the loss. BACKGROUND: The death of an infant is a devastating experience for families. Bereaved mothers have…

With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse…

OBJECTIVE: Reducing emergency department (ED) use in children with complex chronic conditions (CCC) is a national health system priority. Emergency department visits with minimal clinical intervention may be the most avoidable. We assessed…

BACKGROUND: Early identification of patients in the pediatric intensive care unit (PICU) at risk of nutritional status (NS) deterioration and poor outcomes is desirable. We aimed to identify factors associated with NS deterioration and prolonged PICU…

Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a…

Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course…

OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent…

CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe…

BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with…

PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such…

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing…

BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of…

Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family.…

OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…

Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a…

Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative…

BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support…

OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment,…

OBJECTIVES: Hospital discharge offers an opportunity to initiate coordination of follow-up care, preventing readmissions or emergency department (ED) recidivism. We evaluated how revisits and costs of care varied in a 12-month period between children…

BACKGROUND AND PURPOSE: Illness severity among children with life-limiting illnesses is measured with the pediatric complex chronic conditions (CCC) measure. Developed in 2000/2001, it was revised in 2014 to include infant-specific categories.…

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…

BACKGROUND: Definition and concept of the 'beginning of human life' are weakened by co-existing contrasting hypotheses based on humanistic or religious beliefs rather than scientific foundations. This plethora of conceptually distant views have…

PURPOSE: To investigate the impact of rapid-turnaround exome sequencing in critically ill neonates using phenotype-based subject selection criteria. METHODS: Intensive care unit babies aged

In 2005, the French-speaking task force on pediatric critical and emergency care [Groupe Francophone de Réanimation et d'Urgences Pédiatriques (GFRUP)] issued recommendations on withholding and withdrawing treatments in pediatric critical care. Since…

PURPOSE: Neonatal palliative care guidelines increasingly recommend that parents be encouraged to provide care for their dying baby and to spend time with the before and after death. However, little is currently known about how parents perceive such…

BACKGROUND: Infants who are admitted to a neonatal intensive care unit (NICU) may experience significant symptom burden. Parents are often distressed by these symptoms, which can affect their long-term coping and distress. There is limited research…

Perinatal loss is a major life crisis involving multiple losses, including the loss of future hopes and dreams, of being pregnant, and of self-esteem, to name a few. In the present study I focus on mothers who experienced perinatal loss and chose to…
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