Browse Items · Pediatric Palliative Care Library

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.…

Anorexia/cachexia-related quality of life for children with cancer

BACKGROUND: Anorexia is a common symptom in patients with cancer, which can lead to poor tolerance of treatment and can contribute to cachexia in extreme cases. Children with advanced-stage cancer are especially vulnerable to malnutrition resulting…

Anti-parkinson drugs in the Batten-Spielmeyer-Vogt syndrome; a pilot trial

Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents

BACKGROUND: We studied the relation between unrelieved symptoms in terminally ill children and the psychological well-being in the bereaved parents 4-9 years after their loss. PROCEDURE: We contacted parents in Sweden who had lost a child to a…

Approaches to the difficult patient/parent encounter

Most pediatricians have experienced uneasy interactions involving patients and/or their parents. The majority of literature on this topic reflects encounters in adult medicine, without providing much information for pediatricians who also face this…

Tags: 2011, Adolescent, Backlog, Breuner CC, Child, Conflict (Psychology), Female, Humans, Journal Article, Male, Moreno MA, Parents, Patients/classification, Pediatrics, Physician-patient Relations

Are we on the same page? Exploring pediatric patients' involvement with advance care planning

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…

Assessment of a Mobile App by Adolescents and Young Adults With Cystic Fibrosis: Pilot Evaluation

BACKGROUND: Cystic fibrosis (CF) continues to be the most common life-limiting chronic pulmonary disease in adolescents and young adults. Treatment of CF demands a high treatment time investment to slow the progression of lung function decline, the…

Assessment of need for a children's hospice program

Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide…

Tags: 1996, Adolescent, Backlog, Canada, Child, Child Health Services, Davies B, Death, Death studies, Grief, Health Services Needs And Demand, Hospice Care, Humans, Journal Article, PPC Book Chapter 2011 (Kim Widger), Preschool, Program Development

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…

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'…

Association between opioid prescribing patterns and opioid overdose-related deaths

CONTEXT: The rate of prescription opioid-related overdose death increased substantially in the United States over the past decade. Patterns of opioid prescribing may be related to risk of overdose mortality. OBJECTIVE: To examine the association of…

Association between religious and socio-economic background of parents of children with solid tumors and DNR orders

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

Association of Mortality With the Death of a Sibling in Childhood.

Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective:…

Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer

ImportanceThe associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown.ObjectiveTo model the association of spiritual and religious constructs with patient-reported outcomes of anxiety,…

Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe

The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric…

Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.

OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS),…

Atypical antipsychotic use in treating adolescents and young adults with developmental disabilities

OBJECTIVE: To study the usage, efficacy, and side effects patterns of atypical neuroleptics (atypicals) in adolescents and young adults with developmental disabilities (DDs) (mental retardation). METHOD: We undertook a chart review of adolescents and…

Autism traits in children and adolescents with Cornelia de Lange syndrome

Cornelia de Lange syndrome (CdLS) is a cohesinopathy causing delayed growth and limb deficits. Individuals with CdLS have mild to profound intellectual disability and autistic features. This study characterizes the behavioral phenotype of children…

Tags: 2014, Aberrant Behavior Checklist, adaptive behavior, Adolescent, Adult, Age, American Journal of Medical Genetics Part A, Article, Autism, behavior disorder, Behavioral phenotype, behavioral problems, characteristics, Checklist, Child, Childhood Autism Rating Scale, Clark B, Clinical Article, Communication, communication disorder, compulsion, Cornelia de Lange syndrome, daily life activity, De Lange syndrome, Diagnosis, Disease Severity, Emotion, Female, Grados M A, Human, hyperactivity, Intellectual Impairment, Interpersonal Communication, Irritability, Kline A D, Landy-Schmitt C, Language, lethargy, limb, maladjustment, Male, Phenotype, Priority Journal, psychological rating scale, Rating Scale, Repetitive behaviors, rigidity, Skill, social cognition, Socialization, Specht M, Srivastava S, stereotypy, Trajectory, Verbal Communication, Vineland Adaptive Behaviors Scales

Avoiding admission for afebrile pediatric sickle cell pain: pain management methods

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:…

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic

Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died…

Balloon dilatation in esophageal strictures in epidermolysis bullosa and the role of anesthesia

Esophageal involvement, which causes stricture, is a complication in epidermolysis bullosa. This causes dysphagia and malnutrition and leads to deterioration of skin lesions in these patients. The charts of 11 patients with epidermolysis bullosa and…

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…

Behavioral aspects of chronic illness in children and adolescents

Despite the detail that is provided on the potential negative outcomes of children and families who have chronic illnesses, most of these families show admirable resilience. Most children adjust to their illnesses within 1 year and most families…

Tags: 2003, Adaptation, Adolescent, Adolescent Transitions, Backlog, Child, Child Behavior Disorders/etiology/psychology/therapy, Chronic Disease/psychology/therapy, Goldsmith T, Humans, Journal Article, LeBlanc LA, Patel DR, Pediatric Clinics of North America, Preschool, Psychological

Behavioral aspects of Lesch-Nyhan disease and its variants

Self-injury is a defining feature of lesch-nyhan disease (LND) but does not occur in the less severely affected Lesch-Nyhan variants (LNV). The aim of this study was to quantify behavioral and emotional abnormalities in LND and LNV. Thirty-nine…

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…

Behavioral, social, and educational outcomes after pediatric stem cell transplantation and related factors

BACKGROUND: The purpose of the current study was to investigate longitudinally children's behavioral and social competence outcomes up to 2 years after pediatric stem cell transplantation (SCT) and related factors. METHODS: Ninety-nine mothers and 24…

Behavioural phenotype of Cornelia de Lange syndrome: case-control study

BACKGROUND: Cornelia de Lange syndrome is associated with abnormalities on chromosomes 5, 10 and X. AIMS: To delineate the behavioural phenotype of Cornelia de Lange syndrome with specific reference to autistic-spectrum disorder. METHOD: A total of…

Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer

Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…

Bereaved Jewish mothers of children who died of cancer: the relationship between the mother and the deceased child and the mother's perceived functioning

BACKGROUND: Coping with grief after a child's death is a complex and dynamic process. The Two-Track Model of Bereavement, which served as the theoretical framework for this study, examines biopsychosocial reactions to bereavement (track I) and…

Bereaved parents' experience of research participation.

Despite the ethical codes guiding bereavement research, few studies have been conducted to evaluate the perceived stress experienced by the bereaved, and to explore which methodologies cause least distress. This article investigates how bereaved and…

Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer

This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18…

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…

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

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