Browse Items · Pediatric Palliative Care Library

Your child is dead

OBJECTIVE--To determine parent's views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents.…

Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor

OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…

Withholding nutrition from seriously ill newborn infants: a parent's perspective

Withholding and withdrawing treatment in pediatric intensive care. Update of the GFRUP recommendations

In 2005, the French-speaking task force on pediatric critical and emergency care [Groupe Francophone de Réanimation et d'Urgences Pédiatriques (GFRUP)] issued recommendations on withholding and withdrawing treatments in pediatric critical care. Since…

Withdrawal of ventilatory support outside the intensive care unit: guidance for practice

OBJECTIVE: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. METHODS:…

Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units

Withdrawing life-sustaining technologies requires all of the resources and concepts that the field of palliative care has to offer. By learning some fundamental principles of medical management at the time of withdrawal and by mastering a few…

Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views

Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the…

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…

Why don't we talk?

2009

Tags: 2009, Archives Of Pediatrics & Adolescent Medicine, Backlog, Communication, Critical Illness, Emotions, Humans, Infant, Jones Jr MD, Journal Article, Neonatology/education, Newborn, Professional-family Relations

Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?

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…

Tags: 2018, Attitude Of Health Personnel, Clinical Decision-Making/mt [Methods], Humans, Infant, Infant Care/mt [Methods], Infant Care/px [Psychology], Infant Care/st [Standards], July 2019 List, Neonatologists/px [psychology], Neonatologists/st [Standards], Netherlands/ep [Epidemiology], Newborn, Pediatrics, Scandinavian and Nordic Countries/ep [Epidemiology], Survival Rate/td [Trends], Verhagen A A E, Withholding Treatment/st [Standards]

Whom are we comforting? An analysis of comfort medications delivered to dying neonates

Who tells a mother her baby has died? Communication and staff presence during stillbirth delivery and early infant death

OBJECTIVE: Perinatal loss (stillbirth or early infant death) is often a sudden, unexpected event for families. We evaluated who communicates the loss to the parents and who is there for support at the delivery or death. STUDY DESIGN: We conducted a…

Tags: 2017, Bereavement, February 2018 List, Gold KJ, Infant, Journal Of Perinatology, Laventhal NT, Mieras ME, Mothers, Treadwell MC

Who are the children using hospice care?

PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics…

Where infants die: examination of place of death and hospice/home health care options in the state of Wisconsin

Infants (less than 1 year of age) have the highest death rates in the pediatric population, yet there is little published on hospice utilization for infant home deaths. We sought to describe: (1) where infants with a predisposing life-threatening…

Where do children with complex chronic conditions die? Patterns in Washington State, 1980-1998

OBJECTIVE: Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to…

When paediatricians and families can't agree

Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure,…

Tags: 2018, April List 2024, Archives of Disease in Childhood, Child, Child Health Care, Conflict, Ethics, Experimental Therapy, Human, Infant, Medical Ethics, Preschool Child, Terminal Care, Treatment Outcome, Treatment Withdrawal, United Kingdom, Wallis C

When and how do Healthcare Professionals Introduce Specialist Palliative Care to the Families of Children with Life-Threatening Conditions in Taiwan? A Qualitative Study

BACKGROUND: Specialist palliative care (SPC) is often needed to manage complex or refractory problems in children with life-threatening conditions during end-of-life. This study explores the perceptions of healthcare professionals (HPs) to determine…

Tags: 2022, Chang KL, Child, Death, Delivery of Health Care, Huang MC, Humans, Infant, Journal of Pediatric Nursing, Lin SC, Newborn Palliative Care, October 2022 List, Qualitative Research, Taiwan

What influences parents' decisions to limit or withdraw life support?

OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the…

WeeFIM: Normative sample of an instrument for tracking functional independence in children.

A cross-sectional community sample of 417 children, ages 6 months to 8 years without developmental delays or in developmental programs, was seen. The Functional Independence Measure for Children (WeeFIM) was used to assess independence in self-care,…

Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records

BACKGROUND: Planning for care at the end of life (EoL) is an essential component of support and care for families of children with life-limiting conditions. The purpose of this review was to compare documented EoL planning with published children's…

Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting

BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations…

Visualization of protein losing enteropathy in infantile systemic hyalinosis with Tc-99m HSA after albumin challenge

1996

Tags: 1996, Albumins/diagnostic use, Backlog, Chung CJ, Clinical Nuclear Medicine, Contracture/complications, Diarrhea/complications, Female, Humans, Hyalin, Infant, Joint Diseases/complications, Journal Article, Meyers W, Protein-Losing Enteropathies/complications/radionuclide imaging, Shields E, Skin Diseases/complications/radionuclide imaging, Technetium Tc 99m Aggregated Albumin/diagnostic use, Tucker T

Variables influencing end-of-life care in children and adolescents with cancer

BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for…

Validation of the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND)

Purpose: Preliminary validation of the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) for motor skill assessment in spinal muscular atrophy type I. Methods: A total of 27 subjects 3 to 260 months old (mean =…

Tags: (health care), 2011, atrophies of childhood/diagnosis, Child, Child Development/physiology, childhood/physiopathology, CHOP INTEND, Chung W K, Darras B T, De Vivo D C, Deng L Y, Disability Evaluation, Disease Severity, Dunaway S, Female, Finkel R S, Flickinger J, Glanzman A M, Humans, Infant, Kaufmann P, Male, Martens W B, McDermott M P, Montes J, Motor Skills/physiology, Muscle Study Group, natural-history, O'Hagen J, outcome assessment, Pediatric Neuromuscular Clinical Research, Pediatric Physical Therapy, Pediatrics, physical therapy/methods, Preschool, Psychometrics/methods, Quigley J, Rehabilitation, Riley S, scale development, Severity Of Illness Index, Sma, SMA1, smn2 copy number, spinal muscular, spinal muscular atrophies of, spinal muscular-atrophy, Sproule D, Tawil R, tone and motor problems, tool development, Validity, Yang M

Validation of an Electronic Pediatric Index of Mortality 2 Score in a Mixed Quaternary PICU

OBJECTIVE: To assess the validity of an electronic version of the Pediatric Index of Mortality 2 score. DESIGN: Retrospective observational study. SETTING: Pediatric and cardiac ICUs at a quaternary medical center. PATIENTS: Patients more than 60…

Tags: 2020, Child, Cohort Studies, Crana CM, Electronics, Hospital Mortality, Humans, Infant, Intensive Care Units Pediatric, Joyce EL, Kellum JA, March 2021 List, Pediatric Critical Care Medicine, Retrospective Studies, Severity Of Illness Index, Yabes J

Validation of a decision rule identifying febrile young girls at high risk for urinary tract infection

OBJECTIVE: To validate a previously published clinical decision rule to predict risk of urinary tract infection in febrile young girls. METHODS: We performed a retrospective case-control study at a children's hospital emergency department in a…

Utilization of a Prenatal Palliative Care Consultation Pathway for Congenital Heart Disease

Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures…

Utilization and costs for children who have special health care needs and are enrolled in a hospital-based comprehensive primary care clinic

OBJECTIVE: When deciding how much hospital resources should be allocated to comprehensive primary care clinics for children with multisystem disorders, it is important to consider all of the non-primary care revenue streams associated with these…

Using colors to assess pain in toddlers: validation of "the rainbow pain scale"-a proof-of-principle study.

Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale…

Use of methadone in the morphine-tolerant burned paediatric patient

We describe the successful use of methadone in the restoration of sedation and provision of analgesia in two morphine-tolerant, paediatric patients who had suffered significant thermal injuries and were undergoing mechanical ventilation. Both…

Use of melatonin in the treatment of paediatric sleep disorders

A group of Vancouver health professionals, including the authors, have studied the use of oral melatonin in the treatment of chronic sleep disorders in children with disabilities since the Fall of 1991. This review article is based on the first 100…

Tags: 1996, Administration, Adolescence, Adult, Backlog, Child, Chronic Disease, Disabled Persons, Human, Infant, Jan JE, Journal Article, Journal Of Pineal Research, Melatonin/ae [Adverse Effects], Melatonin/tu [Therapeutic Use], O'Donnell ME, Oral, Preschool, Sleep Disorders/dt [Drug Therapy]

Use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units

The purpose of this study was to assess the use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units. The directors of 38 pediatric units and 31 neonatal units reported that analgesics were infrequently…

Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease

BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has…

Upholding Ethical Decision Making in Children With Life Limiting Illnesses

Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.

Tags: 2017, Comprehensive Child and Adolescent Nursing, Decision Making, Ethics, Health Care Delivery, Human, Infant, intestine pseudoobstruction, June 2018 List, Male, mass medium, mitochondrial encephalomyopathy, Mortality, Pediatrics, Procedures, Psychology, Terminal Care, Trends

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