AIM: We investigated relationships between hand function and genotype and aspects of phenotype in Rett syndrome. METHOD: Video assessment in naturalistic settings was supplemented by parent-reported data in a cross-sectional study of 144 females with…
This paper reports on a focus group study aimed at exploring the difficulties that palliative care healthcare professionals encounter while assessing the spiritual distress of their patients. Three focus groups were conducted in a hospice (n = 15).…
BACKGROUND: Palliative oxygen therapy is widely used for treatment of dyspnoea in individuals with life-limiting illness who are ineligible for long-term oxygen therapy. We assessed the effectiveness of oxygen compared with room air delivered by…
In 2004-08 there were around 250 deaths each year of London residents aged 0-19 from causes likely to have required palliative care (excluding deaths under 28 days). Only 15% of the child deaths analysed occurred at home with the majority occurring…
BACKGROUND: In 2004, a review of pilot studies published in seven major medical journals during 2000-01 recommended that the statistical analysis of such studies should be either mainly descriptive or focus on sample size estimation, while results…
PURPOSE: This study tested two hypotheses about gender-specific mental health effects of peer stressors during early adolescence: (1) boys and girls are sensitive to different types of peer stressors, and (2) peer stress is associated with different…
Attention bias modification (ABM) is a newly emerging therapy for anxiety disorders that is rooted in current cognitive models of anxiety and in established experimental data on threat-related attentional biases in anxiety. This review describes the…
Background: The opioid peptide beta-endorphin (beta-E) is synthesized and released in response to stressful stimuli as well as acute alcohol administration. The release of beta-E following exposure to an inescapable aversive situation may mediate…
Congruence between preferred and actual place of death may be an essential component in terminal care. Most patients prefer a home death, but many patients do not die in their preferred location. Specialized (physician, hospice, and palliative) home…
The International League Against Epilepsy (ILAE) Commission on Classification and Terminology has revised concepts, terminology, and approaches for classifying seizures and forms of epilepsy. Generalized and focal are redefined for seizures as…
Immune thrombocytopenic purpura (ITP) is an autoimmune disorder characterized by a low circulating platelet count caused by destruction of antibody-sensitized platelets in the reticuloendothelial system. ITP can be classified as childhood versus…
Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care.…
The aim of mindfulness meditation is to develop present-focused, non-judgmental, attention. Therefore, experience in meditation should be associated with less anticipation and negative appraisal of pain. In this study we compared a group of…
Duchenne muscular dystrophy (DMD) is a severe, progressive disease that affects 1 in 3600-6000 live male births. Although guidelines are available for various aspects of DMD, comprehensive clinical care recommendations do not exist. The US Centers…
Phenomenologic analysis of initial consults provided during the first year of a new Pediatric Advanced Care Team (PACT) program provides essential understanding of the experience and inform program direction and future clinical research. Parents…
PURPOSE: To identify changes in ambulatory health care use during the transition from adolescence to young adulthood. METHODS: We analyzed data from health care encounters for adolescents (13-18 year olds) and young adults (19-24 year olds) in the…
Welcome to the Canadian Directory of Hospice Palliative Care Services. This on-line directory has been designed to provide you with information on the availability of hospice palliative care services across Canada. Here you will find a listing of…
A short form of the Posttraumatic Growth Inventory (PTGI-SF) is described. A sample of 1351 adults who had completed the Posttraumatic Growth Inventory (PTGI) in previous studies provided the basis for item selection. The resulting 10-item form…
Stereotypic hand movements are a feature of Rett Syndrome but few studies have observed their nature systematically. Video data in familiar settings were obtained on subjects (n = 144) identified from an Australian population-based database. I-land…
Although a growing number of projects have been implemented using the community-based participatory research method known as photovoice, no known systematic review of the literature on this approach has been conducted to date. This review draws on…
INTRODUCTION: Delayed discussion of a patient's code status can lead to shortsighted care plans that increase hospital length of stay (LOS) and costs., METHODS: Retrospective study compared intensive care unit (ICU) patients who accepted verses…
BACKGROUND: Legalization of euthanasia and physician-assisted suicide has been heavily debated in many countries. To help inform this debate, we describe the practices of euthanasia and assisted suicide, and the use of life-ending drugs without an…
Pandemic H1N1 influenza is projected to be unprecedented in its scope, causing acute critical illness among thousands of young otherwise healthy adults, who will need advanced life support. Rigorous, relevant, timely, and ethical clinical and health…
Friedreich Ataxia (FRDA) is the commonest inherited ataxia. Clinical trials of pharmaceuticals are increasingly being conducted in this condition. This requires the most accurate outcome measures to enable trials to be conducted with a minimum number…
Nut allergy is known to impact on the quality of life (QoL) and anxiety of both the allergic child and their parents, but little is known about how the management of food allergy is associated with these variables. To investigate the impact of nut…
