BACKGROUND: In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and…
A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001,…
BACKGROUND: Previous research has found that acceptance of pain is more successful than coping variables in predicting adjustment to pain. PURPOSE: To compare the influence of acceptance, pain-related cognitions and coping in adjustment to chronic…
To determine the underlying factor structure of the Japanese version of the Posttraumatic Growth Inventory (PTGI-J), a principal components analysis was performed on data from 312 Japanese undergraduate students who reported growth due to their most…
With a sample of 372 participants who had experienced a range of adverse life events, we conducted a confirmatory factor analysis (CFA) of the Posttraumatic Growth Inventory (Tedeschi & Calhoun, 1996). CFA results support the original five-factor…
BACKGROUND: Physicians are often asked to prognosticate patient survival. However, prediction of survival is difficult, particularly with critically ill and dying patients within the hospitals. The Palliative Performance Scale (PPS) was designed to…
PURPOSE: Palliative sedation therapy (PST) is a controversial issue. There is a need for internationally accepted definitions and standards. METHODS: A systematic review of the literature was performed by an international panel of 29 palliative care…
OBJECTIVES: Despite 56% of child deaths occurring in inpatient hospital settings, who these children are and how they die has not been fully described. The purpose of this study was to identify the characteristics of those infants and children who…
BACKGROUND: While there has been a rapid increase of inpatient palliative care (PC) programs, the financial and clinical benefits have not been well established. OBJECTIVE: Determine the effect of an inpatient PC consultation service on costs and…
OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the…
OBJECTIVE: To systematically review parent experiences with hospital care after perinatal death. DATA SOURCES: An evaluation of more than 1,100 articles from 1966 to 2006 was performed to identify studies of fetal death in the second or third…
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)…
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,…
OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by…
PURPOSE: To determine the levels of beta-endorphin and cortisol in children with multiple injuries and to determine whether there is any difference between and compare the severity of trauma and beta-endorphin and cortisol release as calculated using…
PURPOSE OF REVIEW: Over the past 15 years, the lysosomal storage diseases have become paradigms for the specific treatment of monogenic disorders, particularly those affecting children. This review summarizes the phenotypes and recent literature…
Acute colonic pseudo-obstruction is characterized by dilatation of the large bowel without mechanical obstruction. Although the first step of the treatment is conservative management, mechanical decompression should be performed when symptoms…
BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK…
BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three…
AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family…
Congenital indifference to pain (CIP) is a rare condition in which patients have severely impaired pain perception, but are otherwise essentially normal. We identified and collected DNA from individuals from nine families of seven different…
Studies report a clear association between medication non-adherence and an unfavorable transplant outcome. The adolescent population, in particular, has difficulty adhering to post-transplant medication regimens. The purpose of this study is to…
We present a baby with spinal muscular atrophy type 1, an inherited disorder causing progressive weakness, leading to complete paralysis of respiratory, facial and limb muscles. Without intervention, death occurs in infancy due to respiratory…
As increasing numbers of young people with chronic illness reach adulthood, their ongoing medical care must evolve to be delivered in an adult rather than paediatric setting, a process known as transition. Towards this goal, increasing numbers of…
BACKGROUND: Metachromatic leukodystrophy (MLD) is a lysosomal storage disease with infantile and juvenile onset with a poor prognosis and magnetic resonance imaging (MRI) plays a fundamental role in its diagnosis. Procedural sedation is needed to…
We present a case of a 29 months old previously healthy child who experienced apnea resulting in brain injury following a dose of acetaminophen and codeine 2 days after an uneventful anesthetic for tonsillectomy. A genetic polymorphism leading to…
PURPOSE: To describe the outcome of ophthalmologic examination of 10 Norwegian children with ataxia-telangiectasia (AT) followed through 5 years. METHODS: Ten Norwegian patients with AT aged 2-22 years (three females, seven males) were examined. The…
AIM: To enhance our knowledge on why adolescents with a chronic condition (insulin-dependent diabetes mellitus, IDDM) choose to smoke despite possible awareness of health risks. METHODS: Twelve patients aged 15-20 with IDDM who smoked cigarettes…
Introduction. Hypoplastic left heart syndrome was uniformly fatal until the 1980s but now has survival approaching 70% to age 5 due to treatment advances. The current study was undertaken to examine trends in the intervention rate, survival, and…
