OVERVIEW: Do-not-resuscitate (DNR) orders allow home care clients to communicate their own wishes over medical treatment decisions, helping to preserve their dignity and autonomy. To date, little is known about DNR orders in palliative home care.…
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…
The role of brain biopsy is well established in patients with neoplastic lesions, with a diagnostic yield approaching 95%. The diagnostic yield of brain biopsy in adults with neurological decline varies from 20% to 43%. Only a few studies have…
OBJECTIVE AND IMPORTANCE: The "tight-fit" hypothesis and subsequent current understanding of acute mountain sickness (AMS) is that individuals with less compliant cerebrospinal fluid systems (smaller ventricles and cerebrospinal fluid spaces) have a…
Adolescence is a time of great physical change and maturing brain function. This leads to adolescents establishing independence and coming to terms with the implications of their own actions. Not surprisingly, this phase is characterized by…
Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S.…
PURPOSE: In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought…
The capability of effectively communicating is crucial when providing palliative care, especially when the patient is a child. Communication among healthcare professionals with the child and family members must be clear, concise, and consistent. Use…
BACKGROUND: Antiepileptic drugs are routinely given after craniotomy. Though phenytoin (PHT) is still the most commonly used agent, levetiracetam (LEV) is increasingly administered for this purpose. This retrospective study compared the use of LEV…
BACKGROUND: Multicenter research has the potential to recruit participants with diverse racial, ethnic, and geographic backgrounds and is essential for understanding heterogeneity in bereavement. The National Institute of Child Health and Human…
BACKGROUND: Many persons and their families are burdened by serious chronic illness in late life. How to best support quality of life is an important consideration for care. PURPOSE: To assess evidence about interventions to improve palliative and…
OBJECTIVE: To review selected measures of stress and coping in pediatric populations. Stress and coping are presented within a risk and resiliency framework. METHODS: The Society of Pediatric Psychology (SPP) surveyed the membership to identify the…
RECOMMENDATION 1: In patients with serious illness at the end of life, clinicians should regularly assess patients for pain, dyspnea, and depression. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 2: In patients with…
OBJECTIVE: Many childhood deaths in the United States occur in intensive care settings. The environmental needs of parents experiencing their child's death in a pediatric intensive care unit must be understood to design facilities that comfort at the…
The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using…
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…
The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.…
OBJECTIVES: To review the concept of fatalism among African Americans by discussing how religiosity/spirituality may guide them in seeking cancer care in a positive rather than a fatalistic way. DATA SOURCES: Nursing, social science, and medical…
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male…
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 Epidermolysis bullosa (EB) is a group of inherited disorders characterized by skin and mucous membrane fragility. Gastrointestinal (GI) complications have been described in many types of EB and are responsible for significant morbidity.…
Movement impairment is a fundamental but variable component of the Rett syndrome phenotype. This study used video supplemented by parent report data to describe the gross motor profile in females with Rett syndrome (n=99) and to investigate the…
BACKGROUND: Self-injury, sleep problems and health problems are commonly reported in Cornelia de Lange Syndrome (CdLS) but there are no comparisons with appropriately matched participants. The relationship between these areas and comparison to a…
ABSTRACT Background: Several studies have reported that African Americans are more likely than whites to prefer aggressive treatments at the end of life. Objective: Since the medical information presented to subjects is frequently complex, we…
