Browse Items · Pediatric Palliative Care Library

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…

Beta-endorphin concentration after administration of sucrose in preterm infants

BACKGROUND: Sucrose is an effective analgesic for procedural pain in preterm infants. It has been hypothesized that its analgesic effects are mediated by the release of endogenous opioid neurotransmitters such as beta-endorphin. OBJECTIVE: To…

Magnetic resonance spectroscopy in Niemann-Pick disease type C: Correlation with diagnosis and clinical response to cholestyramine and lovastatin.

Niemann-Pick type C is an autosomal-recessive, neurovisceral storage disorder that results from defective cholesterol esterification. Cholesterol-lowering agents have been demonstrated to decrease hepatic lipids in Niemann-Pick type C patients. The…

Aromatic L-amino acid decarboxylase deficiency: overview of clinical features and outcomes

In this paper, we provide a brief update of diagnostic considerations and biochemical phenotype in L-amino acid decarboxylase deficiency. We review clinical features and outcome data in 11 affected patients, including 7 previously unreported cases.…

Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study

Does gastrostomy tube feeding in children with cerebral palsy increase the risk of respiratory morbidity?

BACKGROUND: Children with severe neurological impairment may have significant oral motor dysfunction and are at increased risk of nutritional deficiencies, poor growth, and aspiration pneumonia. Gastrostomy tube feeding is increasingly being used for…

Gastrostomy tube feeding in children with cerebral palsy: a prospective, longitudinal study

We report a longitudinal, prospective, multicentre cohort study designed to measure the outcomes of gastrostomy tube feeding in children with cerebral palsy (CP). Fifty-seven children with CP (28 females, 29 males; median age 4y 4mo, range 5mo to 17y…

Evaluation Of Temporal Health System Factors Influencing Parallel Palliative Care Referral For Children With Complex Cardiorespiratory Diagnosis And Treatment

Objectives Palliative care (PC) affirms life with goal to improve quality of life for patients with life-threatening conditions.1 PC referrals are influenced by multiple patient and provider factors, including staff awareness of guidelines, plus…

Nature of conflict in the care of pediatric intensive care patients with prolonged stay

OBJECTIVE: To determine the frequency, types, sources, and predictors of conflict surrounding the care of pediatric intensive care unit (PICU) patients with prolonged stay. SETTING: A tertiary care, university-affiliated PICU in Boston. PARTICIPANTS:…

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…

Healthcare Utilization and Spending for Constipation in Children With Versus Without Complex Chronic Conditions

OBJECTIVES: The aim of the study was to examine the prevalence of diagnosis and treatment for constipation among children receiving Medicaid and to compare healthcare utilization and spending for constipation among children based on number of complex…

Follow-up in children with Joubert syndrome

Although Joubert syndrome (JS) was first reported in 1969 by Joubert et al (21), the long-term outcome is not yet documented. We report 19 children (4 pairs of siblings) from a single institution diagnosed with JS. Nine children were last seen…

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.…

Impact of research participation on parents of seriously ill children.

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns…

Pulmonary metastasectomy in pediatric/adolescent patients with synovial sarcoma: an institutional review

PURPOSE: Synovial sarcoma (SS) often metastasizes to the lung; however, the indications for and outcomes of pulmonary metastasectomy have not been evaluated in pediatric/adolescent patients. METHODS: The records of pediatric patients (age

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:…

Maternal anxiety and depression, poverty and marital relationship factors during early childhood as predictors of anxiety and depressive symptoms in adolescence

BACKGROUND: This paper examines the degree to which symptoms of anxiety and depression at age 14 years are associated with early childhood experience of maternal anxiety and depression, poverty, and mother's marital relationship distress and…

Occurrence of the Sandifer complex in the Brachmann-de Lange syndrome

Gastroesophageal reflux is a common occurrence in infancy. The most severe complications of reflux include torticollis, opisthotonus, and paroxysmal dystonic posture (known as the Sandifer complex). We examined 17 patients now ranging in age from 9…

Tags: 1993, Adolescent, Adult, American Journal Of Medical Genetics, Backlog, Child, De Lange Syndrome/complications, Esophagitis/complications/prevention & control, Gastroesophageal Reflux/complications, Humans, Infant, Journal Article, Posture, Sommer A, Spasm/complications, Torticollis/complications

Occurrence of the Sandifer complex in the Brachmann-de Lange syndrome

Gastroesophageal reflux is a common occurrence in infancy. The most severe complications of reflux include torticollis, opisthotonus, and paroxysmal dystonic posture (known as the Sandifer complex). We examined 17 patients now ranging in age from 9…

Pain assessment in nonverbal children with severe cognitive impairments: the Individualized Numeric Rating Scale (INRS)

Children's Hospital Boston began a major pain assessment and management initiative 3 years ago: Pain assessment and management are considered one of the institution's primary standards of care. The initiative included State of the Science meetings…

Research in children: ethical and scientific aspects

Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean

In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and…

Living with cerebral palsy and tube feeding: A population-based follow-up study

OBJECTIVES: To assess the impact of surgically placed feeding tubes on children with severe cerebral palsy (CP) and their families and to determine the survival of these children after initiation of tube feeding (TF). METHODS: Virtually all children…

Giving hope to families in palliative care and implications for practice

Caring for a dying child and the family is one of the greatest nursing challenges. The way in which care is delivered will shape the experience they are about to face. Hope plays a crucial role in helping people cope, and healthcare professionals can…

Tags: 2014, Attitude To Death, Backlog, Child, Communication, Family Nursing, Female, Hope, Hospice And Palliative Care Nursing, Humans, Infant, Journal Article, Male, Nursing Children and Young People, Smith H

Malnutrition at diagnosis of malignancy in childhood: common but mostly missed

A prospective, controlled study of nutritional status in 100 newly diagnosed paediatric oncology patients is reported. Results showed that although patients' height-for-age and weight-for-height were normal, mid-upper arm circumference (MUAC) and…

Long-stay patients: are there any long-term solutions?

2003

Tags: 2003, Backlog, Cardiopulmonary Bypass, Child, Congenital/surgery, Critical Care Medicine, Heart Defects, Humans, ICU Decision Making, Infant, Intensive Care Units, Journal Article, Length Of Stay, Marcin JP, Newborn, Pediatric, Pollack MM, Risk Factors, Slonim AD

Gastrostomy feeding versus oral feeding alone for children with cerebral palsy

BACKGROUND: Children with cerebral palsy (CP) can be significantly disabled in terms of their ability to suck, chew and swallow. This can lead to significant impairment in feeding ability and, eventually, to under-nutrition. It can also result in…

Tags: 2004, Adolescent, Backlog, Cerebral Palsy/complications, Child, Cochrane Database of Systematic Reviews, Eating, Gastrostomy/adverse effects, Humans, Infant, Journal Article, Nutrition Disorders/etiology/prevention & control, Preschool, Sleigh G, Sullivan P, Thomas AG

The clinical spectrum of mitochondrial disease in 75 pediatric patients

The clinical presentation of mitochondrial disorders in childhood is highly variable causing difficulties in diagnosis and management. We assessed records of 75 children (48 male, 27 female) with a biochemically and/or molecularly established…

Bowel obstruction in an infant with AIDS

Case Report
An 8 month old girl was admitted with a 2 day history of increasing respiratory distress, sever abdominal pain and distension. [...]

Tags: 1990, Acquired Immunodeficiency Syndrome/complications, American Journal Of Roentgenology, Backlog, Cytomegalovirus Infections/complications/pathology/radiography, Female, Humans, Infant, Intestinal Obstruction/complications/pathology/radiography, Intestine, Josephs SH, Journal Article, Patterson K, Sivit CJ, Small/pathology/radiography, Taylor GA, Thompson R

Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained: An observational study

BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving…

Pediatric extubation: "pulling the tube"

Informed dissent: the views of some mothers of severely mentally handicapped young adults

Much of the discussion since the Arthur case has centred round the rights of handicapped infants to medical treatment. Little has centred round the question of how far one person can rightly be required to sacrifice her life for another, when she has…

A report of four cases of acute, severe pulmonary hemorrhage in infancy and support with extracorporeal membrane oxygenation

Introduction
Pulmonary hemorrhage is an uncommon event in infants. It has been described most commonly in the sick premature neonate, older child, or adolescent with chronic cardiopulmonary disease. Acute idiopathic pulmonary hemorrhage in…

Tags: 1994, Acute Disease, Artificial, Backlog, Extracorporeal Membrane Oxygenation, Female, Hemorrhage/complications/therapy, Humans, Infant, Journal Article, Lung Diseases/complications/therapy, Male, Moler FW, Pediatric Pulmonology, Respiration, Respiratory Insufficiency/etiology/therapy, Sanders GM, Severity Of Illness Index, Siden HB