Browse Items (167 total)

BACKGROUND: Very little research has been reported examining nonpharmacologic symptom management strategies for very young, hospitalized children receiving palliative care, and none has involved Reiki-a light touch therapy. OBJECTIVES: To determine…

This article explores ways in which paediatricians can help increase awareness and embed organ and tissue donation in the end-of-life care process. This can save patient lives on the organ transplant waiting list, many of whom currently die…

Objective: To report our first case series of Dignity Therapy modified for a pediatric palliative care population. Background: Dignity Therapy has been utilized successfully with terminally ill adult patients to help restore a sense of dignity and…

BACKGROUND: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric…

INTRODUCTION: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home…

BACKGROUND: Data on the end-of-life phase of children receiving palliative care are limited. The purpose of this study is to investigate the spectrum of symptoms of terminally ill children, adolescents, and young adults, depending on their underlying…

Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the…

Research cooperative groups aim to facilitate collaborative and rigorous palliative care research. The purpose of this article is to (1) demonstrate how cooperative groups are taking formal and sustainable steps with commitment to pediatric…

Pharmacogenomic (PGx) testing provides preemptive pharmacotherapeutic guidance regarding the lack of therapeutic benefit or adverse drug reactions of PGx targeted drugs. Pharmacogenomic information is of particular value among children with complex…

* Abbreviations: IRB — : institutional review board PPC — : pediatric palliative care Patient- and family-centered care “is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a…

Objectives: Accurate prediction of time to death after withdrawal of life-sustaining therapies may improve counseling for families and help identify candidates for organ donation after cardiac death. The study objectives were to: 1) train a long…

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)…

Sickle-cell disease (SCD) is an inherited hematologic disorder characterized by the presence of sickle-shaped red blood cells (RBC). 1 Misshapen RBCs are rigid, which leads to occlusion of blood vessels resulting in tissue ischemia and pain. Pain can…

CONTEXT: Compassionate deactivation (CD) of ventricular assist device (VAD) support is a recognized option for children when the burden of therapy outweighs the benefits. OBJECTIVES: To describe the prevalence, indications, and outcomes of CD of…

OBJECTIVES: Children with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about the clinical care strategies that best support this unique group of parents. This study aimed to elucidate…

Dying –or the possibility of death— is not a topic often addressed in modern medicine, especially in paediatrics. But when parents and children are faced with a life-threatening condition, difficult decisions may arise. How do parents and physicians…

Background: Nausea and vomiting is a common symptom in children through their end of life journey. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. However, its use in palliative care…

Up to 40% of patients cared for by pediatric palliative care teams have severe neurologic impairment (SNI). Children with SNI have congenital/chromosomal, central nervous system static or progressive conditions that result in lifelong cognitive…

Background: Death of any of siblings is an overwhelming, severe, and prolonged challenge in children development process and is a major risk factor for psychiatric disorders in childhood and later. Interventions for bereaved families following a…

Objective:  To determine the costs and hospital resource use from all PICU patients readmitted with a PICU stay within 12 months of hospital index discharge. Design:  Cross-sectional, retrospective cohort study using Pediatric…

BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently…

Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional…

BACKGROUND: Parents of children with complex medical needs describe an internal, personal definition of "trying to be a good parent" for their loved child. Gaps exist in the current "good parent concept" literature: (1) When the idea of "trying to be…

BACKGROUND: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate…

Purpose The purpose of this study is to gather qualitative data regarding the experiences and perceptions of speech-language pathologists (SLPs) practicing in pediatric palliative care (PPC) and investigate their approaches for working with patients,…

The Boston Children's Hospital Hematology/Oncology Bereavement Program has supported bereaved parents for three decades following the death of their child from cancer or blood disorder. An analysis of the current bereavement program as well as a…

PURPOSE: This report represents a subanalysis of data from a primary study and addresses a gap in understanding the similarities and differences of symptom reporting between children with advanced cancer and their parents. The objectives of this…

Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.…

BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the…

Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. We examined the impact of a web-based legacy…

Purpose: Although the radiotherapy utilization rate (RUR) is determined for most adult cancers, it is seldom reported in childhood tumors, particularly in low- and middle-income countries (LMIC) where the majority of pediatric cancer patients reside.…

Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the…

Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family…

CONTEXT: The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians. OBJECTIVE: We aimed to describe the pandemic's impact on…

Significant difference exists between validated indications for noninvasive ventilation (NIV) use in children and current real life practice. Lately, dedicated centers have reported exponential growth of NIV use in children and adolescents. Upper…

INTRODUCTION: Caring for terminally ill children influences nurses' and allied health provider's quality of life, ability to provide personalized, dignified and empathetic care and even their concepts of personhood. In the absence of data this review…

Pediatric palliative care (PPC) literature was utilized to identify barriers for early initiation of palliative care at diagnosis among children with life-threatening diseases. Early integration of PPC enhances quality of life and reduces suffering…

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…

BACKGROUND: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when…
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