Browse Items · Pediatric Palliative Care Library

Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed

PURPOSE: To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS: We conducted a prospective, ethnographic study of parents, patients,…

Retrospective, multicentric study of 180 children with cytochrome C oxidase deficiency

A retrospective, multicenter study of 180 children with cytochrome c oxidase (COX) deficiency analyzed the clinical features, prognosis, and molecular bases of the COX deficiency. Clinical symptoms including failure to thrive, encephalopathy,…

Melatonin treatment in individuals with intellectual disability and chronic insomnia: a randomized placebo-controlled study

BACKGROUND: While several small-number or open-label studies suggest that melatonin improves sleep in individuals with intellectual disabilities (ID) with chronic sleep disturbance, a larger randomized control trial is necessary to validate these…

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…

Plasma morphine levels produced by continuous infusion in children

Blood samples were taken from six children aged between 10 months and 15 years, at intervals over a period of 40 hours while they were receiving continuous morphine infusions. The plasma morphine values obtained showed similar and consistent levels…

Tags: 1986, Adolescent, Anaesthesia, Backlog, Beeton C, Bray RJ, Child, Hinton W, Humans, Infant, Infusions, Journal Article, Morphine/administration & dosage/blood/therapeutic use, Pain, Parenteral, Postoperative/drug therapy, Preschool, Seviour JA, Time Factors

Continuity Reexamined: Differential Impact on Satisfaction with Medical Care for Disabled and Normal Children

1982

Tags: 1982, Adolescent, Backlog, Breslau N, Child, Consumer Satisfaction, Continuity Of Patient Care, Disabled Persons, Humans, Journal Article, Medical Care, Miller 2009 BMC HSR Refs, Ohio, Physician-patient Relations, Preschool, Primary Health Care/standards, Process Mapping, Questionnaires, Regression Analysis

Acute and chronic paediatric intensive care patients: current trends and perspectives on resource utilization

BACKGROUND: Advances in paediatric critical care have resulted in increased survival of critically ill patients, many of whom require long-term ventilation as a means of life support. AIM: To determine current trends in resource utilization, and…

Predicting death in children

Rarely do paediatric palliative medicine physicians have to break the news of a diagnosis of a life-limiting condition. It is much commoner for us to be faced with the question: "how long?". This cannot be answered with certainty, and yet a great…

Tags: 2008, Archives of Disease in Childhood, Attitude To Death, Backlog, Brook L, Child, Female, Hain R, Humans, Journal Article, Life Expectancy, Male, Palliative Care/methods/standards, Parents/psychology, Preschool, Professional-Family Relations/ethics, Terminally Ill

Recent trends in cerebral palsy survival. Part II: individual survival prognosis

AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4…

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…

The use of haloperidol in the agitated, critically ill pediatric patient with burns

Haloperidol has become the drug of choice for sedation of the acutely agitated, delirious adult patient in the critical care setting because of its well-documented efficacy and lack of major side effects. Its use in the critically ill pediatric…

Pyruvate dehydrogenase E3 binding protein (protein X) deficiency

Pyruvate dehydrogenase (PDH) deficiency is a major cause of neurological dysfunction and lactic acidosis in infancy and early childhood. The great majority of cases (>80%) result from mutations in the X-linked gene for the E1alpha subunit of the…

Treatment of pediatric chronic pain with tramadol hydrochloride: siblings with Ehlers-Danlos syndrome - Hypermobility type

OBJECTIVE: To evaluate the effectiveness of tramadol hydrochloride for the treatment of chronic pain refractory to previous treatment in two pediatric patients. METHODS: Tramadol hydrochloride was administered (50 mg/day to 150 mg/day) to two…

Tags: 2004, Analgesics, Backlog, Brown SC, Child, Chronic Disease, Ehlers-Danlos Syndrome/complications, Humans, Joint Instability/etiology, Journal Article, Male, Opioid/administration & dosage, Pain Research & Management, Pain/drug therapy/etiology, Preschool, Stinson J, Tramadol/administration & dosage

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

Parental assessment of pain coping in individuals with intellectual and developmental disabilities

Pain coping is thought to be the most significant behavioural contribution to the adjustment to pain. Little is known about how those with intellectual and developmental disabilities (IDD) cope with pain. We describe parental reported coping styles…

An unusual clinical and biochemical presentation of ornithine transcarbamylase deficiency in a male patient

We report a male patient with a history of recurrent idiopathic vomiting, normal plasma ammonia and glutamine concentrations in acute phase, who died at 3 years of age. Ornithine transcarbamylase deficiency was diagnosed after detecting elevated…

Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale

Epilepsy has a significant impact on a child's life, the extent to which is based on four factors: epilepsy, cognition, behavioral, and physical/neurologic function. This study evaluates the ability of the 44-item Impact of Childhood Neurologic…

Unilateral closed-lip schizencephaly and epilepsy: a comparison with cases of unilateral polymicrogyria

We compared the electroclinical features and evolution of patients with two different types of abnormal cortical organization: unilateral closed-lip schizencephaly (SCHZ) and unilateral polymicrogyria (PMG). Between February 1990 and June 2002, 51…

Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec

OBJECTIVE: To examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience. A significant controversy has emerged regarding the role of parents,…

Circumstances surrounding the deaths of hospitalized children: opportunities for pediatric palliative care.

OBJECTIVES: Little is known regarding the assessment and treatment of symptoms during end-of-life (EOL) care for children. This study was conducted to describe the circumstances surrounding the deaths of hospitalized terminally ill children,…

Morbidity and mortality after percutaneous endoscopic gastrostomy in children with neurological disability

BACKGROUND AND AIM: Gastrostomy placement has become an integral mechanism for delivering nutritional support to children with severe neurological disability. Its impact on gastroesophageal reflux and mortality remains contentious. We examined the…

Beta-endorphin levels in peripheral blood mononuclear cells and long-term naltrexone treatment in autistic children

We assessed the clinical and biological effects of high-dose, long-term Naltrexone (NTX) treatment in 11 children (3-11 years), who had been diagnosed as autistic. The drug was given following an open design, for 12 weeks. Beta-Endorphin (beta-END)…

The parents' postoperative pain measure: replication and extension to 2-6-year-old children

Pain assessment is a difficult task for parents at home following children's surgery. The purpose of the present study was to confirm the psychometric properties of a behavioural measure of postoperative pain developed to assist parents with pain…

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

Systemic carnitine deficiency--a treatable inherited lipid-storage disease presenting as Reye's syndrome

A 3 1/2-year-old boy presented at three months of age with an acute episode of lethargy, somnolence, hypoglycemia, hepatomegaly, and cardiomegaly, which responded poorly to restoration of the blood sugar level to normal. The absence of ketonuria…

Family function in families of children with Duchenne muscular dystrophy

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

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…

Reduced life expectancy in 40 cases of early onset cerebellar ataxia with retained tendon reflexes: a population-based study

A survival analysis of 40 cases of early onset cerebellar ataxia (EOCA) with retained tendon reflexes was performed. They represent all cases of EOCA diagnosed between 1945 and 1990 among residents of a defined area of Northwestern Italy, followed up…

Speaking a Different Language: A Qualitative Analysis Comparing Language of Palliative Care and Pediatric Intensive Care Unit Physicians

Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU…

Fifteen-minute consultation: Not the whole story-considering children's spirituality and advance care planning

In a society of diverse views, faiths and beliefs, what can paediatric palliative care contribute to our understanding of children's spirituality? By failing to recognise and respond to their spirituality in this work, we risk missing something of…

Emotionally focused interventions for couples with chronically ill children: a 2-year follow-up

Couples with chronically ill children are particularly at risk for experiencing marital distress. The study presented here is a 2-year follow-up of a randomized control trial that assessed the efficacy of Emotionally Focused Therapy (EFT) in…

Control of severe pain in children with terminal malignancy

OBJECTIVE: To identify the characteristics of the subset of children with malignancy in whom massive opioid infusions are needed during the terminal phase. DESIGN: Retrospective review of the records of the 199 patients who died of malignancy after…

Mothers' recollections of the Paediatric Intensive Care Unit: associations with psychopathology and views on follow up

The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff.…

Sleep problems in children with Sanfilippo syndrome.

Sanfilippo syndrome is a rare degenerative disorder which has severe intellectual and behavioural sequelae, commonly including sleep problems. A parental questionnaire was used to gather information on the sleep patterns of 80 children with…

Family experience in a regional participant contact registry for research on intellectual disability

Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather…

Assessment of the need for palliative care for children in South Africa

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

Resource utilization and cost of episodes of febrile neutropenia in children with acute leukemias and lymphomas

The resource utilization and cost of 51 episodes of febrile neutropenia in children with leukemia and lymphomas who were admitted to the Pediatric Oncology Institute (GRAAC) of the Federal University of Sao Paulo were analyzed. Patients aged 60 days…

Medical, surgical, and health outcomes of gastrostomy feeding

A prospective controlled study with repeated measures before and after surgery examined the medical, surgical, and health outcomes of gastrostomy for children with disabilities at a tertiary paediatric referral centre in the North Thames area, UK.…

Withdrawing artificial feeding from children with brain damage

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…

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