Browse Items (231 total)

BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life…

Objective: The aim of this study was to explore the experience of community palliative care nurses providing home care to children. Method: A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala…

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…

Objectives: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. Design: Substudy of a nation-wide retrospective…

Losing a child is devastating for parents and grandparents. Family and friends generally focus on comforting and supporting the bereaved parents, unintentionally ignoring the bereaved grandparents. Grandmothers and grandfathers often struggle with…

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…

OBJECTIVE: To identify and describe the population of children with congenital or perinatally acquired neurodevelopmental diagnoses in a pediatric intensive care unit and to assess the nature and extent of their utilization of critical care…

AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and…

BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about…

CONTEXT: Palliative care in children is used to be only intended for those in near end-of-life phase. Ideally, palliative intervention should be given since the first time of cancer diagnosis. Palliative care is introduced from the beginning of the…

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: For hospitalized children admitted outside of a critical care unit, the location, mode of death, "do-not-resuscitate" order (DNR) use, and involvement of palliative care teams have not been described across high-income countries.…

OBJECTIVE: To determine the frequency of selective nontreatment of extremely premature, critically ill, or malformed infants among all infant deaths in a level III intensive care nursery (ICN) and to determine the reasons documented by neonatologists…

OBJECTIVE: To facilitate critical decision making and improve satisfaction with care among families of patients in a pediatric intensive care unit. DESIGN: Prospective observational study followed by a nonrandomized controlled trial of a clinical…

OBJECTIVE: To explore factors that influence professionals in deciding whether to withdraw treatment from a child and how decision-making is managed amongst professionals as an individual and as a team. STUDY DESIGN: Semi-structured interviews were…

While social workers are a well-established, part of the pediatric palliative care team, this manuscript presents the first published definition of the core competencies of a pediatric palliative care social worker. National experts in the field,…

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…

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…

OBJECTIVE: Comparing demographic and clinical characteristics associated with receipt of palliative care (PC) among children who died in children's hospitals to those who did not receive PC and understanding the trends in PC use. METHODS: This…

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…

This study describes the influence of a palliative care team on location of death and location of death discussions with patients/caregivers, and determines whether location of death discussions influence location of death. With palliative care or a…

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…

Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families,…

CONTEXT: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. OBJECTIVES: To describe perceived financial…

CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and…

OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking…

BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with…

OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support…

Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC…

Pediatric Critical Care Medicine has evolved drastically as a specialty since its inception more than five decades ago.1 Advances in technology and medical interventions have led to a substantial reduction in mortality rates, which are now in the…

OBJECTIVE: To describe the attitudes and practice of clinicians in providing sedation and analgesia to dying patients as life-sustaining treatment is withdrawn. STUDY DESIGN: Prospective case series of 53 consecutive patients who died after the…

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.…

Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes…

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…

OBJECTIVE: The importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs.…

Background: Pediatric nurses are particularly vulnerable to moral distress and turnover due to frequent experiences with patient death combined with limited pediatric palliative resources and related support. Objective(s): This study examined…
Output Formats

atom, dcmes-xml, json, omeka-xml, rss2