Browse Items (113 total)

There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three…

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…

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…

BACKGROUND: Palliative care is an important component of pediatric oncology care, especially for children who will not be cured of their disease. However, barriers remain to integration of this service. One barrier is the perception that it indicates…

Caring for a child with a serious or life-limiting illness presents many challenges for families and health care providers. Through that experience (and, many times, as it ends), parents are compelled to find and make meaning from their ultimate loss…

Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving…

Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training,…

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care,…

Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1)…

BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to…

AIM: To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the pediatrics oncology unit of the Istituto Nazionale Tumori of Milan andcompare this cohort to a cohort of patients…

Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early…

Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing…

There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three…

Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at…

CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families…

More than 55,000 children die each year in the United States, and hospice is used for very few of them at the end of their lives. Nearly one-third of pediatric deaths are a result of chronic, complex conditions, and the majority of these children are…

INTRODUCTION: Patient safety is extensively studied in both adults and pediatric medicine; however, knowledge is limited regarding particular safety events in pediatric hospice and palliative care (HPC). Additionally, pediatric HPC lacks a unified…

BACKGROUND: Limited knowledge exists of parents' perceptions and experiences of children's hospices and how these contribute to the varied access and uptake of services. AIM: This study aimed to explore parents' perspectives and experiences of a…

Context: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not…

Theories of good death focused on acceptance, control, and meaning-making inform adult palliative care in high-resource settings. As children's palliative and hospice care (CPHC) develops in resource-limited settings, critical conceptualisations of a…

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…

OBJECTIVE: To present our center's experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit. DESIGN: All cases were identified from our Cardiovascular intensive care unit ( CVICU).…

Objectives: * Interpret results of this study relative to previous research. * Evaluate the benefits of a pediatric inpatient hospice facility. Importance: Pediatric-specific hospice facilities (PHFs) are gaining interest as an alternative for…

Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers. Objective(s): Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two…

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…

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…

Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and…

Purpose: Pediatric patients (pt) awaiting heart transplantation (HTX) are among the most fragile patients, even more so when on continuous milrinone infusion or ventricular assist device (VAD). These pt are often in the hospital for very long periods…

Objectives: * Describe state of current science and theory related to grief and bereavement. * Discuss variations of grief and strategies to support bereaved individuals. * Identify best practices to support healthy grief in hospice and palliative…

Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs,…

Background: End-of-life dreams and visions (ELDVs) are a recognized phenomenon that can occur as part of the normal dying process. Data suggest that ELDVs can provide comfort, foster discussion of waking life concerns, and lessen the fear of death.…

Objectives: * Compare the benefits of a primary palliative care model to those of a specialty palliative care service. * Propose a stepwise process to initiate the transition from a specialty palliative care service to a primary palliative care…

Background: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty…

Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how…

Research conducted using the Haley Transcultural Strengths Assessment Interview Guide used in several studies has identified 11 sources of strength routinely utilized by parents caring for their child with intensive needs and child 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: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. OBJECTIVES: To develop a pediatric…

The field of hospice and palliative medicine has struggled to define the conditions that are appropriate for palliative care. "Life-threatening" appropriately encompasses lethal conditions and helpfully incorporates the concept of probability, which…
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