Browse Items · Pediatric Palliative Care Library

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

Quality-of-life measures in chronic diseases of childhood

SCOPE OF THE REPORT: This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what…

Tags: 2001, Adolescent, Backlog, Child, Chronic Disease, Disabled Children, Eiser C, Female, Great Britain, Health Services Research, Health Status Indicators, Health Technology Assessment (winchester, England), Humans, Journal Article, Male, Morse R, Preschool, Quality Of Life, Self Assessment (Psychology)

Children with cancer talk about their own death with their families

In this study we looked at children dying from progressive malignant diseases and their families, to see whether they discussed the child's impending death together. We also looked at what factors might influence this. We questioned staff in the…

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…

Grandma's hands: parental perceptions of the importance of grandparents as secondary caregivers in families of children with disabilities

This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive…

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

Assessing mothers' attitudes about the physician's role in child health promotion

OBJECTIVE: This study assessed maternal attitudes about the physician's role in child health promotion. METHODS: Home interviews were conducted with 200 Massachusetts mothers (with one child age 2 to 3 years) enrolled in a health maintenance…

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

Gender differences in parenting a child with cancer

This study of 124 parents of children diagnosed with cancer investigates parents' perceptions of their role in the illness situation. The study found that mothers and fathers differ in their experience of and response to parenting a child with…

Sleep-disordered breathing and respiratory failure in acid maltase deficiency

BACKGROUND: Sleep-disordered breathing (SDB) and respiratory failure (RF) are complications of acid maltase deficiency (AMD), a rare hereditary myopathy. OBJECTIVE: To define the relationship between lung and respiratory muscle function, to establish…

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

Bisphosphonates for treatment of childhood hypercalcemia

Most clinicians only have a limited experience in treating childhood hypercalcemia with bisphosphonates. We report our experience in the use of intravenous and oral bisphosphonates in a 5-year-old with hypercalcemia secondary to acute lymphocytic…

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…

Children's descriptions of their feelings and what they found helpful during bereavement

Although clinicians have described the value of support groups in assisting children mourn the death of someone close, little is known about helping children with bereavement. By understanding what helps children mourn, nurses can better facilitate a…

Tags: 1995, Anger, Art Therapy, Backlog, Bereavement, Child, Child Psychology, Female, Humans, Journal Article, Lehna CR, Male, Nursing Methodology Research, Preschool, Self-Help Groups, sibling bereavement, The American Journal of Hospice & Palliative Care

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

Choices and control: parental experiences in pediatric terminal home care

During the past decade, palliative care at home has become an alternative option to hospital care for terminally ill children. This study describes the experience of caring for a dying child at home from a parent's perspective. A qualitative research…

Nova Scotia Niemann-Pick disease (type D): Clinical study of 20 cases.

Patients with Niemann-Pick type D have been traced to a single Acadian ancestor in Nova Scotia. The objective of this study was to describe the clinical course. A cohort of children with Niemann-Pick type D was identified by chart review. Some…

Tags: 1998, Age of Onset, Backlog, Camfield PR, Cause Of Death, Child, Female, Humans, Jan MM, Journal Article, Journal of Child Neurology, Longitudinal Studies, Male, Niemann-Pick Diseases/epidemiology/genetics/pathology, Nova Scotia, 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…

Bisphosphonates: from grandparents to grandchildren

Bisphosphonates are synthetic analogues of pyrophosphate that inhibit bone resorption by their action on osteoclasts. Bisphosphonates have been extensively used in the elderly with primary and secondary osteoporosis, Paget's disease, and…

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…

Nasogastric or gastrostomy feedings in children with neurologic disabilities

Although pediatricians are increasingly aware of the problem of undernutrition in children with neurologic disabilities, many of these children remain poorly nourished despite prolonged attempts at oral feedings. We studied the effects of tube…

Tags: 1994, Backlog, Child, Christoffel KK, Clinical Pediatrics, Enteral Nutrition, Female, Humans, Infant, Journal Article, Male, Naureckas SM, Nervous System Diseases/complications/therapy, Nutrition Disorders/etiology/prevention & control, Preschool

Beta-endorphin and cholecystokinin 8 concentrations in peripheral blood mononuclear cells of autistic children

beta-Endorphin (beta-EP) and cholecystokinin 8 (CCK-8) concentrations in peripheral blood mononuclear cells were measured in 12 drug-free autistic (AU) children, in 10 drug-free children with pervasive developmental disorders (PDD) and in 11 healthy…

Juvenile hyaline fibromatosis: clinical heterogeneity in three patients

BACKGROUND: Systemic hyalinoses are genetic generalized fibromatoses characterized by an accumulation of hyalin in the dermis. Two distinctive syndromes are recognized in the literature: infantile systemic hyalinosis (ISH) and juvenile hyaline…

Mitochondrial encephalomyopathy: variable clinical expression within a single kindred

The clinical manifestations of mitochondrial encephalomyopathy are described in four generations of a single kindred. The age of onset of major neurological disturbance varied from 3-70 years. In some patients, deafness was the only manifestation; in…

Gastric antral dysrhythmias in children with chronic idiopathic intestinal pseudoobstruction

Chronic idiopathic intestinal pseudoobstruction is a serious disorder of intestinal neuromuscular function resulting in recurrent episodes of intestinal obstruction, and is caused by primary disease of the enteric nerves or enteric smooth muscle.…

Can we use methadone for analgesia in neonates?

2001

Tags: 2001, Adult, Analgesia/methods, Analgesics, Anand KJ, Archives of Disease in Childhood. Fetal and Neonatal Edition, Backlog, Chana SK, Child, Drug Tolerance, Humans, Infant, Journal Article, Methadone, Newborn, Opioid/adverse Effects, Preschool

ABC of palliative care. Special problems of children

1998

Tags: 1998, Backlog, Bereavement, Bmj (clinical Research Ed.), Child, Child Health Services, Child welfare, Family Health, Goldman A, Great Britain, Humans, Journal Article, Pain Measurement, Pain/etiology, Palliative Care, Preschool, Social Support

Withdrawing artificial feeding from children with brain damage

Continuity of care: influence of general practitioners' knowledge about their patients on use of resources in consultations.

OBJECTIVE--To examine the relation between general practitioners' knowledge about their patients and the use of resources in consultations. DESIGN--A cross sectional evaluation of consultations. SETTING AND SUBJECTS--A representative sample of 133…

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.…

Congenital disorder of glycosylation type Ia (CDG-Ia): phenotypic spectrum of the R141H/F119L genotype

AIMS: To delineate common and variable features and outcome of children with congenital disorder of glycosylation type Ia (CDG-Ia) caused by the frequent R141H/F119L PMM2 genotype. METHODS: Clinical data on 25 patients (mean age 7.6 years, range…

Identifying futility in a paediatric critical care setting: a prospective observational study

AIMS: To determine the extent of futile care provided to critically ill children admitted to a paediatric intensive care setting. METHODS: Prospective evaluation of consecutive admissions to a 20 bedded multidisciplinary paediatric intensive care…

Biphosphonates

1997

Tags: 1997, Adolescent, Adult, Allgrove J, Archives of Disease in Childhood, Backlog, Bone Diseases/drug therapy, Calcinosis/drug therapy, Child, Diphosphonates/adverse effects/pharmacology/therapeutic use, Female, Humans, Hypercalcemia/drug therapy, Journal Article, Osteoporosis/drug therapy, Preschool

Behaviour in mucopolysaccharide disorders

This paper reports a study of the nature and prevalence of behaviour problems in 258 children with mucopolysaccharide disorders. Questionnaire data obtained through the post was supplemented by home visits to 42 families in the sample and by regular…

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