Browse Items · Pediatric Palliative Care Library

Esophageal strictures in children with recessive dystrophic epidermolysis bullosa: an 11-year experience with fluoroscopically guided balloon dilatation

BACKGROUND: Recessive dystrophic epidermolysis bullosa (RDEB) is an inherited blistering skin disorder that is associated with significant esophageal strictures, resulting in dysphagia and nutritional failure. Although endoscopically guided balloon…

Constipation in epidermolysis bullosa: successful treatment with a liquid fiber-containing formula

In epidermolysis bullosa (EB), chronic constipation, painful defecation, and fecal impaction frequently contribute to malnutrition and growth failure. Standard treatments for constipation, such as increased intake of conventional dietary fiber and…

Assessment of sleep in children with mucopolysaccharidosis type III

Sleep disturbances are prevalent in mucopolysaccharidosis Type III (MPS III), yet there is a lack of objective, ecologically valid evidence detailing sleep quantity, quality or circadian system. Eight children with MPS III and eight age-matched…

The association between environmental events and self-injurious behaviour in Cornelia de Lange syndrome

BACKGROUND: There has been limited empirical research into the environmental causes of self-injury in Cornelia de Lange syndrome. The present study examined the variability of self-injurious behaviour in Cornelia de Lange syndrome across…

Communication strategies and persuasion as core components of shared decision-making for children with life-limiting conditions: A multiple case study

BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes.…

Tags: 2021, Adolescent, Almack K, Child, Decision-making, Family, February 2022 List, Johnston B, Longitudinal Studies, Manning JC, Palliative Care, Palliative Medicine, Pollock K, Popejoy E, Preschool, Qualitative Research

Parents' perspectives on the deaths of their children in two Brazilian paediatric intensive care units

OBJECTIVES: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. METHODS: This was a qualitative,…

Acute pain relief after Mantram meditation in children with neuroblastoma undergoing anti-GD2 monoclonal antibody therapy

Nonpharmacologic, mind-body interventions are used to reduce anxiety in pediatric patients. Anti-ganglioside GD2 monoclonal antibody (anti-GD2 MoAb 3F8) therapy is the standard of care for high-risk neuroblastoma and pain is its major side effect. We…

Deep brain stimulation in children: experience and technical pearls

OBJECT: Deep brain stimulation (DBS) is an established technique for the treatment of several movement disorders in adults. However, the technical approach, complications, and results of DBS in children have not been well documented. METHODS: A…

The Outcome of Critically Ill Pediatric Cancer Patients Admitted to the Pediatric Intensive Care Unit in a Tertiary University Oncology Center in a Developing Country: A 5-Year Experience

INTRODUCTION: Cancer remains a major cause of death in children, but recent advances in supportive care and progress in the use of chemotherapy have considerably improved the prognosis. The need for intensive care management in pediatric oncology…

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

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

Behavioral contingencies and self-mutilation in Lesch-Nyhan disease

Lesch-Nyhan syndrome is a rare, sex-linked, recessive disease that is accompanied by severe self-mutilation, especially finger biting. Evidence is presented suggesting that parental response patterns may contribute to the genesis of the…

Development of an in-home standardized end-of-life treatment program for pediatric patients dying of brain tumors

PURPOSE: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors. DESIGN AND METHODS: From 1990 to 2005, a retrospective chart review was performed…

The ocular features of the mucopolysaccharidoses

AIMS: The mucopolysaccharidoses (MPS) are a heterogeneous group of rare disorders characterised by accumulation of glycosaminoglycans within multiple organ systems. This study aimed to determine the prevalence and severity of ocular complications in…

Risperidone treatment of autistic disorder: longer-term benefits and blinded discontinuation after 6 months

OBJECTIVE: Risperidone is effective for short-term treatment of aggression, temper outbursts, and self-injurious behavior in children with autism. Because these behaviors may be chronic, there is a need to establish the efficacy and safety of…

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

Increase of plasmatic beta-endorphin immunoreactive material in children in the perioperative period: the influence of the site of surgery

BACKGROUND: The primary aim of the study was to confirm the increase of plasmatic IR beta-endorphin material during the perioperative period in children. The second was to search for the factors responsible for this increment. METHODS: Seventy-two…

Diagnostic evaluation using whole-body technetium bone scan in children with cerebral palsy and pain.

BACKGROUND: Pain in noncommunicative children can be difficult to localize and diagnose. The purpose of this study is to report our experience using a 3-phase whole-body technetium bone scan as a screening tool in identifying the source of persistent…

Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center

BACKGROUND: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We…

Effectiveness of ketamine in decreasing intracranial pressure in children with intracranial hypertension

OBJECT: Deepening sedation is often needed in patients with intracranial hypertension. All widely used sedative and anesthetic agents (opioids, benzodiazepines, propofol, and barbiturates) decrease blood pressure and may therefore decrease cerebral…

Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity

OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to…

Clinical and neuroradiological follow-up in mucopolysaccharidosis type III (Sanfilippo syndrome)

Mucopolysaccharidosis type III (Sanfilippo syndrome) is an autosomal recessive disorder characterised by progressive nervous system involvement with mental retardation, behavioural problems and seizures. Three patients, of 20 months to 12 years of…

Osteopenia in children with acute lymphoblastic leukemia: a pilot study of amelioration with Pamidronate

Diphosphonates in the treatment of myositis ossificans

Use of bisphosphonate therapy for osteoporosis in childhood and adolescence

Congenital and acquired forms of osteoporosis in childhood and adolescence can result in morbidity from fracture and pain in childhood, and place an individual at significant risk for problems in adult life. A range of therapies exist for the…

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…

Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study

CONTEXT: Magnetic resonance imaging (MRI) findings have been reported for specific clinical cerebral palsy (CP) subgroups or lesion types but not in a large population of children with all CP subtypes. Further information about the causes of CP could…

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…

Outcomes of unrelated umbilical cord blood transplantation for X-linked adrenoleukodystrophy

Adrenoleukodystrophy (ALD) is an X-linked disorder caused by a defect in the metabolism of long chain fatty acids leading to demyelination, neurodegeneration, and death. The disease typically presents in young boys and adolescent boys. Allogeneic…

Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration

The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand…

Preventing psychosocial impairment in siblings of terminally ill children

A review of the literature provides the basis for a discussion of the impact of sibling death on healthy children whose emotional needs may be unattended both by parents and professionals. Factors which may deter hospice practitioners from delivering…

Tags: 1989, Adaptation, Adolescent, Backlog, Bendor SJ, Child, Death, Family/psychology, Grief, Humans, Journal Article, Parent caregivers, Preschool, Psychological, Psychological/prevention & control, Sibling Relations, Stress, The Hospice Journal

Investigating the cost-effectiveness of videotelephone based support for newly diagnosed paediatric oncology patients and their families: design of a randomised controlled trial

BACKGROUND: Providing ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care…

Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment),…

Comparison of morphine and methadone for prevention of postoperative pain in 3- to 7-year-old children

A randomized, double-blind, prospective study was performed to determine the effects of perioperative administration of morphine or methadone on postoperative analgesic requirements and pain scores in 35 children aged 3 to 7 years undergoing major…

A prospective evaluation of opioid weaning in opioid-dependent pediatric critical care patients

Critically ill children are treated with opioid medication in an attempt to decrease stress and alleviate pain during prolonged pediatric intensive care. This treatment plan places children at risk for opioid dependency. Once dependent, children need…

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…

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…

Esophageal coin removal by emergency physicians: a continuous quality improvement project incorporating rapid sequence intubation

OBJECTIVE: The objective of this study was to describe our experience removing esophageal coins from children in a tertiary care pediatric emergency department over a 4-year period. METHODS: We retrospectively reviewed a continuous quality…

Health status of bereaved parents

Forty-seven mothers and 33 fathers, representing 48 families, participated in a propective longitudinal study of the effects on family members of a child's dying. The purpose of this article is to describe parents' health during the terminal illness…

Bacteraemia and antibiotic use in respiratory syncytial virus infections

AIMS: To examine the frequency of and risk factors for bacteraemia in children hospitalised with respiratory syncytial virus (RSV) infection; and to determine current use of antibiotics in hospitalised children with RSV infection. METHODS:…

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