Browse Items · Pediatric Palliative Care Library

Fifteen years of shared care for paediatric oncology, haematology and palliative patients across Queensland: The role of Regional Case Managers

Objective: A shared care model was implemented in 2006 in Queensland to facilitate paediatric oncology, haematology and palliative care patients receiving care as close to home as possible. Following initial diagnosis, care planning and treatment at…

Siblings’ voices: A prospective investigation of experiences with a dying child

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive…

Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review

Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric…

Demographic and Clinical Differences Between Applied Definitions of Medical Complexity

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…

Tags: 2022, Child, Chronic Disease, Cross-sectional Studies, Demography, Goodman DM, Heneghan JA, Hospital Pediatrics, Hospitalization, Hospitals, Humans, Infant, October 2022 List, Pediatric, Ramgopal S, Retrospective, Studies

Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death From Cancer: Room for Improvement

CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents…

Tags: 2021, 2022 Special Edition 2 - Parent Perspectives, Bereavement, Bereavement Support, Child, Childhood Cancer, Dole OR, Grief, Helton G, Hospitals, J Pain Symptom Manage, Morris SE, Neoplasms/therapy, Parents, Perception, Snaman JM, Wolfe J

Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews

Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care…

Tags: 2019, 2022 Special Edition 1 - Parent Perspectives, Ambulatory Care, Engler F, Engler J, Erler A, Gerlach FM, Gruber D, Hach M, Hospitals, Journal of Palliative Medicine, Kuss K, Palliative Care, Parents, Pediatrics, Qualitative Research, Seipp H, Ulrich LR

Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews

Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care…

Tags: 2019, Ambulatory Care, Engler F, Engler J, Erler A, Gerlach F M, Gruber D, Hach M, Hospitals, January 2020 List, Journal of Palliative Medicine, Kuss K, Palliative Care, Parents, Pediatrics, Qualitative Research, Seipp H, Ulrich L R

Introduction of triggers for palliative care consultation improves utilization and satisfaction within a level four NICU

OBJECTIVE: We sought to explore the beliefs regarding palliative care team utilization, as well as increase consultation and awareness of the palliative care team's role in the NICU. STUDY DESIGN: The study design in this Level 4 NICU included…

Tags: 2018, Cooperberg DB, December 2019 List, Hospitals, Humans, Intensive Care Units, Journal Of Perinatology, Neonatal/organization & administration/standards, Nguyen LT, Palliative Care/standards/statistics & Numerical Data, Patient Care Team/organization & administration, Pediatric, Personal Satisfaction, Referral And Consultation/statistics & Numerical Data, Spear ML

Why Are There So Few Ethics Consults in Children's Hospitals?

In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that…

Pharmacological Management of Symptoms in Children with Life-Limiting

Background: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. Objective: To determine medications available and…

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

Caring for children living with life-threatening illness: a growing relationship between pediatric hospital medicine and pediatric palliative care

2014-08

Tags: 2014, Backlog, Child, Critical Illness, Hospital Medicine, Hospitals, Humans, Journal Article, Palliative Care, Pediatric, Pediatric Clinics of North America, Pediatrics, Ullrich CK, Wolfe J

Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution

BACKGROUND: Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care…

Parent and clinician preferences for location of end-of-life care: Home, hospital or freestanding hospice?

BACKGROUND: Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We…

Promoting resilience among parents and caregivers of children with cancer

BACKGROUND: Promoting resilience is an aspect of psychosocial care that affects patient and whole-family well-being. There is little consensus about how to define or promote resilience during and after pediatric cancer. OBJECTIVES: The aims of this…

A mother's perspective: the power of holistic care for the terminally ill child

This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.

Parental explicit heuristics in decision-making for children with life-threatening illnesses

OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by…

Differences in characteristics of dying children who receive and do not receive palliative care

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…

"You've only got one chance to get it right": children's cancer nurses' experiences of providing palliative care in the acute hospital setting

The aim of this study was to understand children's cancer nurses experiences of providing palliative care in the acute hospital setting. Palliative care for children with cancer is rarely hospital- centred and predominately care is provided in the…

Tags: 2013, Adult, Backlog, Child, Female, Hospitals, Humans, Issues In Comprehensive Pediatric Nursing, Journal Article, Neoplasms, Oncology Nursing, Palliative Care, Pearson HN, Pediatric Nursing, Young Adult

Exploring communication difficulties in pediatric hematology: oncology nurses

BACKGROUND: Communication plays an important role for the well being of patients, families and also health care professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety, hopelessness and decreased of…

Factors associated with congruence between preferred and actual place of death

Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home…

Impact of writing "comfort measures only" orders in a community teaching hospital.

OBJECTIVES: We compared end-of-life care for patients with and without orders for "comfort measures only" (CMO) and evaluated whether standards for palliative medicine were met., DESIGN: We retrospectively reviewed the charts of 40 patients, 20 with…

Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit

OBJECTIVE: Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians…

Age limits and transition of health care in pediatric emergency medicine

OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by…

Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit

OBJECTIVE: Many childhood deaths in the United States occur in intensive care settings. The environmental needs of parents experiencing their child's death in a pediatric intensive care unit must be understood to design facilities that comfort at the…

Transition in chronic illness: Who is going where?

AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for…

Tags: 2008, Adolescent, Adolescent Medicine, Adolescent Transitions, Backlog, Brodie L, Child, Chronic Disease/epidemiology/therapy, Continuity Of Patient Care/organization & Administration, Delivery of Health Care/organization & administration, Hospitals, Humans, Interviews As Topic, Journal Article, Journal of Paediatrics and Child Health, New South Wales/epidemiology, Pediatric, Steinbeck KS, Towns SJ

Withdrawal and limitation of life-sustaining treatments in a paediatric intensive care unit and review of the literature.

OBJECTIVES: To examine withdrawal and limitation of life-sustaining treatment (WLST) in an Australian paediatric intensive care unit (PICU) and to compare this experience with published data from other countries. DESIGN: Retrospective chart review…

Finding the right words: using the terms allow natural death (AND) and do not resuscitate (DNR) in pediatric palliative care.

When children are dying in a hospital setting, healthcare providers need to help families make important end-of-life care decisions. Most providers use the term do not resuscitate (DNR) when suggesting a course of action that involves not using…

The costs and potential savings of a novel telepaediatric service in Queensland

BACKGROUND: There are few cost-minimisation studies in telemedicine. We have compared the actual costs of providing a telepaediatric service to the potential costs if patients had travelled to see the specialist in person. METHODS: In November 2000,…

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.…

Information exchange among physicians caring for the same patient in the community

BACKGROUND: The exchange of information is an integral component of continuity of health care and may limit or prevent costly duplication of tests and treatments. This study determined the probability that patient information from previous visits…

Clinical characteristics and survival of trisomy 18 in a medical center in Taipei, 1988-2004.

Trisomy 18 is the second most common autosomal trisomy in newborns. The birth prevalence of this disorder is approximately 1 in 3,000 to 1 in 8,000, and the life span of the majority of patients is less than 1 year. As information regarding outcome…

A literature review on off-label drug use in children

The aim was to compare results of studies performed in different settings worldwide and identify common therapeutic areas to allow for focused interventions, because off-label drug use can be a measure of the lack of knowledge concerning paediatric…

Hospitalization for mental illness among parents after the death of a child.

BACKGROUND: The loss of a child is considered one of the most stressful events in the life of a parent. We hypothesized that parental bereavement increases the risk of hospital admission for a psychiatric disorder, especially for affective disorders.…

The benefits of a hospital-based inpatient palliative care consultation service: preliminary outcome data

This report describes the multiple complementary analytic methods used to create a composite evaluation of the benefits of a hospital-based inpatient palliative care consultation service at Montefiore Medical Center in its preliminary phase. We…

Impact of palliative care case management on resource use by patients dying of cancer at a Veterans Affairs medical center

BACKGROUND: The VA Puget Sound Health Care System (VAPSHCS) started a palliative care service (PCS) in October 2001 to provide case management for patients with advanced cancer. OBJECTIVE: To examine resource use during the last 60 days of life for…

Perceptions of the term palliative care

OBJECTIVES: To assess parents' and health care providers' perceptions of the name and description of a pediatric palliative care (PPC) program. METHODS: Survey conducted at three pediatric health care sites; asked respondents (parents and staff)…

Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering

OBJECTIVE: To implement and evaluate a quality improvement program of interdisciplinary palliative care education and support intended to increase the competence, confidence and ability to manage personal grief of health care professionals caring for…

Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback

OBJECTIVE: To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU). DESIGN: Use of an interdisciplinary iterative process to create a…

The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France

The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear…

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