Browse Items (221 total)

CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored.…

BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with…

BACKGROUND: When children are seriously ill, parents rely on communication with their clinicians. However, in previous research, researchers have not defined how this communication should function in pediatric oncology. We aimed to identify these…

Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised 1.3 million…

BACKGROUND AND OBJECTIVES: Home nursing is essential for children with medical complexity (CMC), but provision varies substantially across states. Our objectives were to quantify state-to-state variability in distribution of posthospitalization home…

* Abbreviations: CHAM — : Children’s Hospital at Montefiore COVID-19 — : coronavirus disease In March 2020, Montefiore Health System in the Bronx, New York, received an influx of adults who were critically ill with coronavirus disease (COVID-19). The…

The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In…

Title “You have made all the loving choices”: A qualitative study of physician “good parent” statements during Pediatric Intensive Care Unit care conferences Background Parents’ ideas about what it means to be a “good parent” to their seriously ill…

Parents of ill children have willingly identified their personal beliefs about what they should do or focus on to fulfill their own internal definition of being a good parent for their child. This observation has led to the development of the…

The article presents a discussion between bereaved parents on the Quality of Life Steering Council at a large academic pediatric cancer center and interdisciplinary pediatric palliative care clinicians about the coexistence of hope and realism.…

Many ethical issues arise concerning the care of critically ill and dying patients during the coronavirus disease 2019 (COVID-19) pandemic. In this issue's Ethics Rounds, we present 2 cases that highlight 2 different sorts of ethical issues. One is…

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP)…

The use of a palliative care guideline in infants remains controversial in the NICU community. Triggers are only intermittently utilized within the NICU setting. Most NICUs implement strategies for near-death care, but few have guidelines for those…

High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document…

Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and…

Our pediatric palliative care group is called the "Pediatric Advanced Care Team," also known as "PACT." We created a novel system called #PACTimpact to identify situations in which team members go above and beyond for patients providing meaningful…

Podcasts have grown in popularity over the last several years. Pediatric Palliative Care services can use this medium of communication to reach families more effectively. Podcast use is determined by the schedule of parents rather than providers.…

Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of…

BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and…

Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their…

Background: End-of-life (EOL) care for a child is a high-stakes situation that requires careful planning and practice; there is only one chance to get it right. Additionally, distress is often high in those caring for dying children. Despite the fact…

Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician…

Background: Medical trainees consistently report suboptimal instruction and poor self-confidence in communication skills. Despite this deficit, few established training programs provide comprehensive, pediatric-specific communication education,…

Program Goals: Despite the Liaison Committee for Medical Education (LCME) mandatory requirement for the incorporation of end-of-life care education into medical school curriculum, very few studies have reported successful approaches, and…

Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in…

Introduction The specialty of Pediatric Palliative care and Hospice is growing exponentially, however, residency training programs are often underprepared to meet the evolving educational needs of their trainees with regards to the field. While…

Background: NICU length of stay (LOS) data revealed patient outliers with significantly longer LOS and concomitant increased risk of mortality. Baseline data revealed under-utilization of Pediatric Palliative Care (PPC) consultative services in this…

Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014,…

Program Goals: The American College of Critical Care Medicine Task Force, 2004-2005 recommends "family meetings with the multi-professional team begin within 24-48 hours after ICU admission and are repeated as dictated by the condition of the patient…

Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their…

Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician…

Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented…

An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are…

BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective…

Using focus group methodology, we studied the attitudes of neonatologists regarding diagnostic rapid genome sequencing for newborns who were critically ill in a NICU. One focus group took place within the first year after whole-genome sequencing…

BACKGROUND AND OBJECTIVES: Children with neurologic impairment (NI) often undergo feeding tube placement for undernutrition or aspiration. We evaluated survival and acute health care use after tube placement in this population. METHODS: This is a…

BACKGROUND AND OBJECTIVES: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the…
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