Browse Items · Pediatric Palliative Care Library

All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014

Aim: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014.…

Always a burden? Healthcare providers' perspectives on moral distress

BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral…

An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional…

An assessment of gender differences in the perception of benefit resulting from the loss of a child.

The current study focused on a sample of adults (N = 67) experiencing bereavement following the loss of a child. The Post Traumatic Growth Inventory (PTGI) was used to assess whether bereaved parents were able to perceive benefit from their trauma,…

An economic examination of private insurance claims among adolescents and young adults who were enrolled in hospice during the last year of life

Purpose: The purpose of this study was to generate baseline data on the health characteristics, health care utilization, and health care spending among privately insured adolescents and young adults (AYA), who were enrolled in hospice care during…

An Exploratory Study into the Experience of Health Care Professionals Caring for Adolescents and Young Adults with Incurable Cancer

Adolescents and young adults 15 to 25 years of age with incurable cancer are a unique patient group. There is growing evidence of the emotionally taxing nature of this work, yet limited understanding of the health care professional experience across…

An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years

BACKGROUND: The lifespan of patients with cystic fibrosis (CF) is increasing significantly. The objective of this international pilot study was to study the characteristics of these long-term survivors. METHODS: Four centres with large CF clinics…

An Online Educational Program Improves Pediatric Oncology Nurses' Knowledge, Attitudes, and Spiritual Care Competence

This study evaluated the potential impact of an online spiritual care educational program on pediatric nurses' attitudes toward and knowledge of spiritual care and their competence to provide spiritual care to children with cancer at the end of life.…

An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions

BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…

An update on the leukodsytrophies

This review centers on important recent advances in the understanding of the role of glial fibrillary acidic protein in Alexander disease and of proteolipid protein in hypomyelinating disorders such as Pelizaeus-Merzbacher and spastic paraplegia. We…

Analgesic effect of the synthetic cannabinoid CT-3 on chronic neuropathic pain: a randomized controlled trial

CONTEXT: 1',1'dimethylheptyl-Delta8-tetrahydrocannabinol-11-oic acid (CT-3), a potent analog of THC-11-oic acid, produces marked antiallodynic and analgesic effects in animals without evoking the typical effects described in models of cannabinoids.…

Analysis of the circumstances at the end of life in children with cancer: Symptoms, suffering and acceptance

AbstractBackground: In an effort to improve the quality of life of children with cancer, this study analyzes the signs and symptoms at the end of life in such children. It is hoped that these data will contribute to the development of appropriate…

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.…

Antenatal Palliative Care Consultation: Implications For Decision-making And Perinatal Outcomes In A Single-centre Experience

BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in…

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

Anticipating death in children and adults with childhood onset severe central nervous system impairment: A case series review

Objectives * Discuss problems due to severe central nervous system impairment that can remain intractable to treatment options. * Define tipping points that can prompt anticipatory discussions, including suggested recommendations that best meet…

Tags: 2018, Adult, Clark C, Hauer J, Jarek H, Journal of Pain and Symptom Management, May 2018 List

Anticonvulsant drugs for migraine prophylaxis

BACKGROUND: Anticonvulsant drugs seem to be useful in clinical practice for the prophylaxis of migraine. This might be explained by a variety of actions of these drugs in the central nervous system that are probably relevant to the pathophysiology of…

Tags: 2004, Adult, Anticonvulsants/therapeutic use, Backlog, Chronicle E, Cochrane Database of Systematic Reviews, Humans, Journal Article, Migraine Disorders/prevention & control, Mulleners W, Randomized Controlled Trials

Antiepileptic drug therapy for adults: when to initiate and how to choose

Although antiepileptic drugs (AEDs) are commonly used to control and prevent seizures, their long-term use carries a considerable risk of morbidity. The decision to start AEDs is made once the risks of further seizures outweigh the risks of…

Anxiety and depression in bereaved parents after losing a child due to life-limiting diagnoses: A Danish nationwide questionnaire survey

CONTEXT: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression. OBJECTIVES: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and…

Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: a population-based follow-up.

BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the…

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…

Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients

Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per…

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

Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology

OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of…

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…

Assessing the clinical importance of symptomatic improvements. An illustration in rheumatology

OBJECTIVE: To estimate when a difference in disability symptoms is sufficiently large to be important to individual patients. DESIGN: Cross-sectional analysis of two groups: derivation set (n = 46) and validation set (n = 57). SETTING: The Arthritis…

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…

Associated Factors of Psychological Distress among Japanese NICU Nurses in Supporting Bereaved Families Who Have Lost Children

PURPOSE: This study aimed (1) to examine the current status of psychological distress experienced by neonatal intensive care unit (NICU) nurses in supporting bereaved families, (2) to identify the factors associated with psychological distress, and…

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…

At the crossroads: making the transition to hospice

OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice…

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 and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients

OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical…

Attitudes of the four groups of population toward end-of-life care of their child: A nationwide survey

Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We…

Attitudes on pain and opioid prescription practices in cystic fibrosis centers

Introduction: The high incidence and prevalence of chronic pain in patients with CF is well documented. In patient surveys, reports of intense pain range from 33% - 82% of respondents. Commonly reported sources of pain include headache, sinuses,…

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

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