Browse Items · Pediatric Palliative Care Library

Indicators of family resilience after the death of a child

The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in…

Pediatric palliative care patients: a prospective multicenter cohort study

OBJECTIVE: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations. DESIGN, SETTING, AND PATIENTS: Prospective observational cohort study of all patients…

Annual summary of vital statistics: 2008

The number of births in the United States decreased between 2007 and 2008 (preliminary estimate: 4 251 095). Birth rates declined among all women aged 15 to 39 years; the decrease among teenagers reverses the increases seen in the previous 2 years.…

Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care

The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its…

Place of death and palliative care following discharge from paediatric intensive care units

OBJECTIVE: To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care. DESIGN: National cohort of PICU admissions linked to…

Swedish parents' experiences of parenthood and the need for support to siblings when a baby is stillborn

BACKGROUND: It has been argued that having a stillborn baby in the family affects older siblings more than parents realize. The aim of this study was to describe parenthood and the needs of siblings after stillbirth from the parents' perspective.…

Tags: 2011, Adolescent, Adult, Avelin P, Backlog, Birth (berkeley, Calif.), Child, Erlandsson K, Female, Hildingsson I, Humans, Infant, Journal Article, Male, Parenting, Preschool, Rådestad I, sibling bereavement, Siblings, Stillbirth, Sweden

Neonatal end-of-life spiritual support care

The death of an infant is a profound loss that may complicate, disrupt, or end relationships between parents; and lead to maladaptive grieving, long-term decreased quality of life, and symptoms related to psychological morbidity. Facing neonatal loss…

Care goals and decisions for children referred to a pediatric palliative care program

OBJECTIVE: To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. METHODS: Goals of care were elicited from the parents and children with complex, life-limiting…

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

Tracking neonatal nosocomial infection: the continuous quality improvement cycle

Neonatal nosocomial infection (NNI) is a major complication of neonatal care, increasing mortality, morbidity and the costs of healthcare. Management of NNI involves attention to many details of care, creating a culture of change within a neonatal…

Tags: 2011, Aydon L, Backlog, Biggs S, Cross Infection/epidemiology/prevention & control, Gill AW, Humans, Incidence, Infant, Infant Care/methods/organization & administration/standards, Infection Control/methods/organization & administration/standards, Jones C, Journal Article, Keil AD, Newborn, Quality Improvement/organization & administration/standards, The Journal Of Hospital Infection

Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy

BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed.…

Physiological stress and brain vulnerability: understanding the neurobiology of connectivity in preterm infants

Tags: 2011, Annals Of Neurology, Backlog, Brain, Developmental Disabilities, Female, Humans, Infant, Infant Behavior, Intensive Care Units, Journal Article, Magnetic Resonance Imaging, Male, Msall ME, Neonatal, Pregnancy, Premature

Pediatric sedation with analgesia

Sedation with analgesia is frequently required to perform painful or invasive procedures in children. The best medication combination for pediatric sedation with analgesia is yet to be identified. Sixty-four of 243 total sedation with analgesia…

Pain and symptom control in terminally ill children

The management of pain in terminally ill pediatric patients has incalculable benefits to patients, their families, and physicians and nurses. A therapeutic management plan is dependent on a thorough understanding of the causes of pain in these…

Occurrence of withdrawal in critically ill sedated children

OBJECTIVES: To record the number of children with withdrawal symptoms after the administration of sedatives for mechanical ventilation, and to discuss the possible connection with the administration of midazolam. DESIGN: Retrospective data collection…

Life expectancy of children with cerebral palsy

Risk factors for mortality of young children with cerebral palsy were studied using a sample of 12,709 children aged 0.5-3.5 years with cerebral palsy who had received services from the State of California between 1980 and 1995. The most powerful…

Prognosis for survival and improvement in function in children with severe developmental disabilities

OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The…

Communication with parents of children with cancer

The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire,…

Neurodegenerative disease: the neuronal ceroid lipofuscinoses (Batten disease)

In the past decade there have been significant advances in our understanding of the molecular genetic basis of the neuronal ceroid lipofuscinoses, a clinically and genetically heterogeneous group of childhood neurodegenerative storage disorders.…

Tags: 2001, Animal, Backlog, Child, Chromosome Mapping, Current Opinion in Neurology, Genetic, Genotype, Human, Infant, Journal Article, Membrane Proteins/genetics, Mitchison HM, Models, Mole SE, Neuronal Ceroid-Lipofuscinosis/diagnosis/genetics/therapy, Phenotype, Phosphoprotein Phosphatase/genetics, Proteins/genetics

Codeine phosphate in children: time for re-evaluation?

2001

Tags: 2001, Analgesics, Backlog, British Journal Of Anaesthesia, Child, Codeine/therapeutic use, Cunliffe M, Evidence-based Medicine, Human, Infant, Journal Article, Opioid/therapeutic use, Pain, Postoperative/drug therapy

Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood

OBJECTIVE: To determine the prevalence of non-malignant life-threatening illness in childhood and associated morbidity in the affected child and their family members. DESIGN: Cross-sectional survey. SETTING: Bath Clinical Area (total population…

Effect of severity of disability on survival in north east England cerebral palsy cohort

AIMS: To investigate the effect of motor and cognitive disabilities on the survival of people on the North of England Collaborative Cerebral Palsy Survey, and compare this with other published results. METHODS: The cerebral palsy cohort consists of…

Population pharmacokinetics of oral morphine and its glucuronides in children receiving morphine as immediate-release liquid or sustained-release tablets for cancer pain

OBJECTIVES: (1) To determine the pharmacokinetics of morphine, morphine-6-glucuronide (M6G), and morphine-3-glucuronide (M3G) in children with cancer receiving morphine as immediate-release morphine liquid or sustained-release tablets. (2) To…

End-of-Life Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service

Objective. Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study…

Tags: 2001, Backlog, Death and Dying, End-of-life Care, Infant, Infants, Journal Article, Kirby RS, Leuthner SR, Palliative Care, Pediatrics, Pierucci R, Terminal Illness

Equivalence reliability of the functional independence measure for children (WeeFIM) administration methods.

OBJECTIVE: This study examined the equivalence reliability of two administration methods for the Functional Independence Measure for Children (WeeFIM). The two methods were direct observation of child performance and parental interview. METHOD:…

Pain in the pediatric patient: practical aspects of assessment

A child's pain is plastic and complex. In order to more effectively alleviate suffering, emphasis must shift from an exclusive focus on the source of tissue damage to a more comprehensive focus that includes factors that modulate pain. Evaluating a…

Tags: 1995, Adolescent, Backlog, Child, Child Behavior, Female, Humans, Infant, Journal Article, Male, McGrath PA, Pain Measurement/methods, Pain/etiology/psychology/therapy, Pediatric Annals, Preschool, Questionnaires

Neurologic course of congenital disorders of glycosylation

Congenital disorders of glycosylation, formerly called carbohydrate-deficient glycoprotein syndrome, may present in infancy with slowly progressive neurologic deficits including cognitive impairment, ataxia, pigmentary retinal degeneration, and…

Clinical pharmacokinetics and pharmacodynamics of opioid analgesics in infants and children

Pain in childhood has not always been managed as actively as that in adults because of the limited amount of research available to provide guidelines for the management of paediatric pain. However, for many years now the pharmacokinetics and…

Tags: 1995, Analgesics, Backlog, Child, Clinical Pharmacokinetics, Hamunen K, Humans, Infant, Journal Article, Maunuksela EL, Olkkola KT, Opioid/administration & dosage/pharmacokinetics/pharmacology, Preschool

Metabolic assessment and enteral tube feeding usage in children with acute neurological diseases

OBJECTIVE: To report on acquired experience of metabolic support for children with acute neurological diseases, emphasizing enteral tube feeding usage and metabolic assessment, and also to recommend policies aimed towards improving its…

Tags: 1998, Acute Disease, Backlog, Child, Enteral Nutrition/adverse effects, Fantozzi G, Humans, Infant, Journal Article, Leite HP, Nervous System Diseases/metabolism/therapy, Nitrogen/urine, Nutritional Status, Preschool, Retrospective Studies, Sao Paulo Medical Journal = Revista Paulista De Medicina, Urea/urine

Palliative care for children.

This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also…

Tags: 2000, American Academy of Pediatrics, American Academy of Pediatrics Committee on Hospital Care, Backlog, Child, Committee on Bioethics, Death and Euthanasia, Humans, Infant, Journal Article, Longitudinal Studies, Palliative Care, Pediatrics, Practice Guidelines, Preschool, Terminal Care, United States

Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society

Autism is a common disorder of childhood, affecting 1 in 500 children. Yet, it often remains unrecognized and undiagnosed until or after late preschool age because appropriate tools for routine developmental screening and screening specifically for…

Seizures in children with congenital hydrocephalus: long-term outcome

We documented seizures in 33 of 68 (48.5%) children with congenital hydrocephalus not associated with myelomeningocele. Mental retardation (MR) and CNS malformations correlated with seizure occurrence; age at shunt insertion and number of shunt…

Tags: 1992, Analysis of Variance, Backlog, Blake JN, Child, Epilepsy/etiology/physiopathology, Follow-up Studies, Humans, Hydrocephalus/complications/physiopathology, Infant, Journal Article, Neurology, Noetzel MJ, Preschool, Prognosis, Q3 Scoping Review Results, Recurrence, Regression Analysis

Gender differences in parental psychological distress following perinatal death or sudden infant death syndrome

1995

Tags: 1995, Backlog, Boyle FM, British Journal Of Psychiatry, Death, Gender, Infant, Infant Death, Journal Article, Najman JM, Perinatal, Sudden Infant Death, Syndrome, Thearle MJ, Vance JC

Treasure Weekend: supporting bereaved siblings

The importance of allowing bereaved siblings the opportunity to be involved and mourn the loss of a sibling family member has gained increasing recognition. Child family members may need support in the same way that parents might need support to cope…

Empowerment through photo novella: portraits of participation

Photo novella does not entrust cameras to health specialists, policymakers, or professional photographers, but puts them in the hands of children, rural women, grassroots workers, and other constituents with little access to those who make decisions…

Hospice care for children: past, present, and future

Of the 100,000 children who die each year in the United States, close to 15,000 children could benefit from hospice/home care services. This article describes the concept of pediatric hospice care, reviews the Martinson study that was conducted in…

Tags: 1993, administration/statistics &, Adolescent, Backlog, Child, Child Health Services/organization &, Forecasting, Health Services Research, Home Care Services/organization &, Hospices/organization &, Humans, Infant, Journal Article, Journal Of Pediatric Oncology Nursing, Martinson IM, Mortality, numerical data/trends, Preschool

The death of a twin

Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the…

Tags: 1995, Adolescent, Adult, Backlog, Bryan EM, Child, Child Psychology, Counseling, Death, Female, Fetal Death, Grief, Guilt, Humans, Infant, Journal Article, Male, Newborn, Palliative Medicine, Parent-child Relations, Preschool, sibling bereavement, Social Support, Twins

A comparative longitudinal study of gastrostomy devices in children

Long-term gastrostomy is a predictable intervention to ameliorate the effects of feeding and swallowing difficulties among children with severe spastic cerebral palsy. The evidence evaluating the efficacy and implications of the available gastrostomy…

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,…

The Functional Independence Measure for Children (WeeFIM). Conceptual basis and pilot use in children with developmental disabilities.

Few tools are available to pediatricians for tracking and monitoring disability status in children. We describe the conceptual basis and pilot use of the Functional Independence Measure for Children (WeeFIM). Our pilot use of this instrument in…

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