Browse Items (71 total)

Characteristics of sleep and sleep problems were investigated in 43 individuals with 11q terminal deletion disorder (Jacobsen syndrome). Data were collected using a sleep questionnaire. Ten individuals (23%) had a sleep problem. Settling problems,…

The number of children with life-limiting or life-threatening conditions in England is double what it was at the millennium. These conditions include cystic fibrosis, cancer, organ failure and severe neurological injuries. The Teaching for Life…

BACKGROUND: The need for educational training of healthcare professionals in palliative care is an important issue. Training and practice of pediatric residents in the field of pediatric palliative care (PPC) has never been assessed, although the…

The fields of pediatric palliative care (PPC) and pediatric medical ethics (PME) overlap substantially, owing to a variety of historical, cultural, and social factors. This entwined relationship provides opportunities for leveraging the strong…

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and…

Clinicians frequently worry that medications used to treat pain and suffering at the end of life might also hasten death. Intentionally hastening death, or euthanasia, is neither legal nor ethically appropriate in children. In this article, we…

A unilateral do not attempt resuscitation (DNAR) order is written by a physician without permission or assent from the patient or the patient's surrogate decision-maker. Potential justifications for the use of DNAR orders in pediatrics include the…

Ethically charged situations are common in pediatric critical care. Most situations can be managed with minimal controversy within the medical team or between the team and patients/families. Familiarity with institutional resources, such as hospital…

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…

OBJECTIVES: To assess neonatology fellow training in guiding family decision making for high-risk newborns and in several critical communication skills for physicians in these scenarios. DESIGN: A Web-based national survey. SETTING:…

The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the…

BACKGROUND: In pediatric oncology and critical care, physicians give difficult news, including discussions regarding palliative care and comfort measures, but there are minimal data regarding fellowship program preparation for this task. PURPOSE: We…

BACKGROUND: Medical oncologists often must deliver bad news. The authors were interested in the extent of formal training in delivering bad news in hematology/oncology fellowships in the United States. METHODS: An e-mail survey was sent to all…

When children are dying in a hospital setting, healthcare providers need to help families make important end-of-life care decisions. Most providers use the term do not resuscitate (DNR) when suggesting a course of action that involves not using…

BACKGROUND: Mucopolysaccharidosis type I (MPS I) is a rare lysosomal storage disease subdivided into three phenotypes of increasing severity: Scheie, Hurler-Scheie and Hurler. To gauge the effectiveness of treatments and to determine the load likely…

OBJECTIVES: The goals were (1) to describe and to characterize pediatric clinical research networks (PCRNs) in the United States and Canada, (2) to identify PCRN strengths and weaknesses, (3) to evaluate the potential for collaboration among PCRNs,…

OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational…

We are presenting an integrative paradigm of care. We will review the basis for its evolution from prior series and parallel models. In this paradigm, healing and palliation (when indicated) are introduced in parallel with curative measures as soon…

Planning and implementing educational programs in medicine optimally requires a background in educational theory and practice. An aven

2005

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Undernutrition, growth failure, overweight, micronutrient deficiencies, and osteopenia are nutritional comorbidities that affect the neurologically impaired child. Monitoring neurologically impaired children for nutritional comorbidities is an…

BACKGROUND: Currently, approximately 85% of children with significant congenital heart problems survive to adolescence and adulthood. This survival rate represents a dramatic improvement in the medical and surgical care of congenital heart disease…

In this article we examine ethical aspects of the involvement of children in clinical research, specifically those who are incapable of giving informed consent to participate. The topic is, of course, not a new one in medical ethics but there are…

PURPOSE: Social network analysis (SNA) provides a way of quantitatively analyzing relationships among people or other information-processing agents. Using 2 practices as illustrations, we describe how SNA can be used to characterize and compare…

OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of…

Palliative medicine means caring for patients with incurable disease and short life expectancy, or, with the British definition, "the study and management of patients with active, progressive, far advanced disease, for whom the prognosis is limited…

Despite the fact that chronic abdominal pain is a common complaint in children and adolescents, the complexity of this condition only recently has begun to be understood. This article summarizes new advances in the diagnosis, conceptualization, and…

Ethical issues in the critical care unit frequently arise in children with neurological problems. These ethical issues frequently challenge our medical management of such cases and can be quite problematic. This article reviews key ethical issues…

The provision of nutrition and hydration to newborn infants is considered fundamental care. For premature and critically ill newborns, similar considerations generally hold true. Nutrition may be provided for these infants using assisted measures…

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…

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